Thank you all so much for the congratulations! And thanks to Ernie for the offer, I have made Lawson aware he's got competition!
I got my biopsy results yesterday, and there were no signs of rejection! What a relief. So glad I'll be able to celebrate 6 months without worrying.
I've been talking a lot about National Transplant week on my Facebook - in the uk the campaign this week is to encourage people sign up and let their loved ones know their wishes so they can make an informed choice to let their loved ones organs be donated should the worst happen.
I did a little interview with a paper in the UK called the Express, here is the link for those of you that are interested: http://www.express.co.uk/life-style/health/487554/National-Transplant-Week-Organ-donations-at-record-high
Well the good news is that me and Lawson managed to go back to Northumberland for a weekend without me getting ill or anything spoiling it!
And while we were there Lawson proposed to me on my favourite beach and I said yes. we're both so happy and so is the family.
I wanted to share something positive with you all from me post transplant!
I have my next biopsy Monday. Hoping for Another good result and perhaps even the go ahead to start work. My 6th month post transplant is 10th July it's gone so quick but 6 months sounds like ages. Must remain patient.
I had my biopsy Monday and it's another zero.. Think this might actually be he first time I've managed two zeros in a row. Pretty impressed with myself!
I've recovered from the shingles, it was a bit of an ordeal and left me very very tired so glad that's done with. I'd like to have a month now where I don't pick up any random illnesses please thanks. My hip is fine now. They think it might've been nerve pain from the shingles coming on. So I'm back to cardiac rehab and have a home exercise plan now too to crack on with.
I'm happy and hoping I can get back the strength I lost from being poorly and make some progress.
Just kidding, it's not dramatic really. The good news is my last biopsy was a big fat zero which surprised and delighted me in equal measures, and means they don't want another til 9th June. This means my poor scarred neck gets some respite, and my steroids get dropped again a bit.
Bad news is after getting all excited about cardiac rehab I pulled a muscle/tendon in my hip and can't even really walk or stand without pain. So I have had to stop it completely til it gets better (physios orders, honest)
To add to this due to the immuno suppression I have developed shingles on my left leg and foot (the leg with drop foot and bad hip). I am hoping to avoid hospital as I am feeling ok temp wise and in myself but am PEEVED that once again plans are being scuppered by illness. Whenever I organise anything it seems it goes pear shaped. I'm getting used to this but I wish I had more exciting things to talk about! I want to get out there and live the life I won back with me and Lawson. In hospital before transplant I remember saying to my dad - I don't need long to live, I just need to get out of hospital and get to cherish life for a while and that'll be enough for me, just to have another chance.
I don't mean to complain, I do feel I'm ever closer to be 'me' again & by no means am ungrateful for where I've came from... I just have more living to do yet!
And shingles are really itchy and painful rrrrrarrrgh
Ps Jim, I will oblige with a photo of my 'sneaks' soon :)
Just a little update to say how I'm doing. I've started cardiac rehab which I'm really enjoying. I like exercising and it gives me more motivation seeing a glimpse of what I can be capable of in the future. I am the youngest there by a long shot as it is mostly for people post heart attack etc, but it doesn't bother me. Everyone has a good time there and the physios are fun. I am getting grief for having bright white new trainers though. They should see the grotty plimsolls I was walking around in in hospital this is def better even if I look a bit keen.
I am dead tired, maybe from cardiac rehab or maybe because my meds aren't quite right. I'll have a biopsy tomorrow and find out if I'm rejecting the next day. I hope not but am prepared for the worst. Should just mean extra meds if I am.
I am going through the diary they kept while I was sedated. It's weird but good for me. I am gradually finding out how much people did for me and my family - don't think I can thank you enough, the more time goes on the stranger a set of circumstances it seems but I'm focussing on moving forward as well as coming to terms with it all
I've not updated in a while, because it's just been a case on kind of getting on with it now. It's been challenging because I've picked up a couple of bugs and found it hard to shake off, and the drain on my already little resource of energy makes it hard to be positive. Being immuno suppressed sucks! I'm getting better now, so hoping for a better couple of weeks. I'm at home again back in Newcastle, so having a nice Easter with the family and dog. The sun is shining and I hope to maybe get to the beach for some sea air :)
I am also writing because my colleagues from work are running a 10k run to support the New Start charity which raises money for the heart transplant centre I was at. They've done some amazing work, helping to fund transplants in the north west of England at a time when they were new technology and the NHS would not fund them.
I'll attach the fundraising page below, any support is gratefully received but I know you guys have provided me with so much support already so I am already grateful!! I'm really hoping I can cheer my workmates on as it's so great of them to help the cause :)
I've had a lovely time in the north east, thank you for my messages it really did feel like a holiday almost to be somewhere different for a few days after being in the flat or hospital so much. I think it did my parents good too which was nice cause they deserve it! I've uploaded a pic of our lovely little dog lucy who we were reunited with. Feeling tired but relaxed & happy. Hope you are all well and all the best to those waiting for surgery xx
Yesterday I finally got to meet some other patients at the monthly transplant forum at wythenshawe hospital. It was really good to compare notes and they were very friendly. We chatted about being safe with food and avoiding infection and also about our little gripes we had with doctors etc in hospital! Obviously we're all massively grateful to be alive - none of us had had a straight forward journey to transplant - but having spent so much time in hospital you do develop little frustrations and sharing them makes you feel a bit less petty :)
I am starting to get to know the clinic staff better, since I am in and out of hospital so much. I don't like going to hospital but I do like seeing familiar faces and I feel at home there. The nurses are great and they really take the time to understand things from a patients point of view.
I have my next biopsy on Monday :( I am not looking forward to this, as normal, as I don't have a great track record rejection wise. At least if they admit me for rejection it won't be over a weekend again so it won't fall on Lawson's time off. I miss him a lot through the day,.
it is frustrating not being independent anymore. I keep thinking I can do things on my own but the reality is I can't. I will learn to drive when I am well enough and that will mean I have a lot more freedom to go out on my own rather than relying on others. I am a bit scared though(!)
Health wise I feel ok just tired and weak. I am putting weight on, mostly round my belly so I have little stick legs, a belly and my steroid induced moon face but I'm trying not to be be vain (it's hard though)
Bit of a rambly post but I've knot updated in a while and wanted to check in
At rachs request dad has done a quick update about biopsy results...
Rachel's biopsy on Wednesday revealed a rejection level of 2 (on a scale of 0-3) and she was called into hospital to have drugs administered via a drip this morning; she will need further drips tomorrow and Sunday. So we spent most of today at the hospital, first of all having blood tests and then the drugs - over a one hour drip - then the consultant requested Rach to stay in hospital overnight so that they could monitor a number of risk factors (blood sugar, blood pressure) which had been not quite what was wanted. We understand that rejection is not uncommon following a transplant and it may indicate that Rach's own immune system is becoming stronger, hence resisting the new heart more fiercely.
Paradoxically, Rach herself feels in good health and - while disappointed to be back in hospital - she has accepted the need for monitoring and is making the best of a bad job; we spent most of the afternoon chatting with her (back in her old isolation room) and she was able to smile and make jokes. She wants to reassure everyone that this isn't a major emergency, more of a routine problem which is being handled... so please don't worry about her.
I have been home for over a week now and am starting to settle in. Lawson is doing a great job of looking after me. It's a bit frustrating relying on someone else so much but I have to be patient as I can't do it on my own. I'm very tired a lot of the time. But I am getting up, showering and even wearing make up which makes me feel more human. We had a beautician come and thread my eyebrows which cheered me up a lot :)
I am finding I am getting more curious about my surgeries and the scars on my body that I don't yet know where they came from. Unfortunately I'm not ready for the answers lawson gives me. It still throws me to not know what I've been through. so I will just live in the here and now for the time being.
I am gaining weight and eating well. I have a check up Wednesday and a biopsy. I really hope I'm not rejecting, but it shouldn't be long in hospital if I am.
Much love to you all, and a special mention to my friend Sammy who is having a surgery of her own today. Love you lots lady and I know you'll get through this with your usual humour and strength :)
So I am finally home as Vicki says! It was an emotional car journey home as I thought about my new life and where I've came from. I put on the Beatles White album and promptly realised I'd been singing along in the car to it on my way to Sheffield for my mitral valve surgery feeling like I was so lucky to be getting fixed and positive about the future. It's pointless I know, to dwell, but I fin it hard to connect with that girl who was mucking about in the car deafening Laws with my bad singing.
Aside from that I am doing well mentally considering, physically being home is very tiring and there's lots to get in order. Laws is doing a great job of looking after me and my family are close by popping over to help aswell. I feel very safe and grateful to be home. Things ARE going my way for once and I've not lost sight of that.
I won't be able to update as much as I feel I've a lot on my plate but I'll still be checking back and once in a bit better I'll update. I just need to try and not do too much all at once.
Love to you all, hope you are all well too, I am touched by all of your messages every day
I am so happy to say that rach's rejection level was zero - no rejection! This means that rach has been allowed home! Just arrived back a little while ago and awaiting the arrival of dominos! She will update properly probably tomorrow when she's settled in.
Can't believe this day has finally arrived and there is at last a rach in the rach and Lawson flat!
It's the morning of my biopsy, so I'm nil by mouth til about 2 when it happens. Provided everything stays as it is, ans the result tomorrow is good, I'll be discharged tomorrow. This is my big hope, I need to be with Lawson again and start the next chapter of my recovery. It's ThAnks to all your support and advice that I have been so well equipped for this. I'm just really going to be calm and patient today (or attempt as much!)
I've been eating a ridiculous amount and it seems as though my weight is creeping up, so the concern about the nose feed is gone! Things are so different this week I'm doing so well it's weird!
Thanks again a guy's, I'm a bit groggy and sleepy so apologies if the update is a bit gobblegooky
I am happy today because I've felt well and even though I had the endoscopy I saw Lawson and HD got me a dominoes pizza. I've honestly never enjoyed pizza so much after being nil by mouth all day!
I put make up on properly for the first time for my date and I felt good about myself which has really boosted me. I've even posted a photo so you can see me being happy after a miserable start to the week. My cheeks are v puffy from steroids but I'm learning to embrace the hamster look!
ThAnks all for your support. It's been really hard but I hope this is turning a corner. They hope I can go home next week, but I will be patient. I will post. Results of endoscopy once I know more.
Love rach xxx
Ps I had a sip of real coffee for first time in year and a nd IT WAS AMAZING! I might have to stArt having the odd coffee again
After a difficult few days, Rachel is feeling much better. She has regained her appetite and thirst and the pain in her stomach is much reduced - whether this is due to stopping her antibiotics or a new cocktail of pain killers we don't as yet know. Her infection levels are up again (to 26) but we understand that this is due to the presence of a central line which had been in too long and has now been removed.
Tomorrow Rach has the endoscope (?) to see what is happening in her stomach (and she is not too happy with the prospect) but she is also hoping for an outing to the hospital coffee bar; she is much brighter than she has been for days and it has been lovely to see her and chat about all sorts of things.
Hi, Rachel's dad here - she asked me to update you on her news.
Rachel developed a severe stomach pain over the weekend and - as this was in the region where her vad tubes had been inserted - we were all rather worried that more surgery might be required. Rachel was bitterly disappointed at the prospect of another setback (as were we all, we had hoped for an uneventful journey back to health) - but had to wait for a CT scan on Monday to show if anything sinister was happening.
As we waited for the scan results Rach was given more drugs to deal with the pain, but these had little effect and she spent most of the last few days unable to move, not eating - and fretting. Finally today (Wednesday) we got the good news that there is no physical damage or problem with any of her major organs (phew!).
This suggests that the pain may be due to the drugs Rachel has been taking, which we understand to have the side effect of damaging the stomach lining - so it's possible that she has a stomach ulcer. This will be investigated with another scope on Friday - and then treated accordingly.
Rachel's infection level is now down to 1 (from a high of 148 in November) so the plan is to stop her antibiotics for 48 hours and see if these are the main cause of the stomach pain. Unfortunately, Rachel is still carrying the superbug in a dormant state, so she's still in isolation. She's also always the last person in every queue for scans/treatment as the treatment room has to be completely cleaned after her. There's been an awful amount of waiting as a result - scheduled for a scan on 'Monday', she wasn't wheeled down to the unit until after 8 pm... miserable day!
Rach has lost a lot of weight and muscle tone in the few days she has been lad up and she now needs to have the nasal feeding tube again. This will be put in after the scope on Friday - she hates it, poor girl.
Today Rachel is feeling a little better - the meds seems to be working at last - but of course she won't be going home on Friday. This is such a bitter blow for her - I can't even begin to describe how bad it is - and we've all had sleepless nights as a result. She's so brave, though, and is picking herself up gradually though she is so lacking in physical resources (going faint when she tries to stand) that it's a tremendous effort for her. I know that she (and us, her family) will be so grateful for your continuing prayers and support.
As ever, we don't know what is coming next - but we're making plans for her return to her flat, so it will be ready whenever she is. Her big sister Vicki is moving into a flat close to Rachel's this afternoon, so the whole family will be available to do whatever she needs
in the first weeks at home.
Our love to all of you, amazing heart valve family, dear friends and colleagues!
The Dr s have been and said home next Friday! Not set n stone of course but something to hope for. Then back again following Monday for biopsy, oh well a weekend at home at least perhaps.
There's a lot of tweaking going on regarding ny 2r status so that's the key thing, also the nausea. Not feeling so bad today but they've prescribed an I rejection for it in the morning to try and give me some respite
Great to share good news again with you guys thanks as ever. Lots of love xxx
That is what I said after physio just now, a full lap of the ward without help and I did a lot of step ups with both legs. I had a hand with the steps as it feels odd without my balance isn't quite there but much better than last attempt.
My infection marker is 2, like a normal person!
My biopsy result was 2r, worse than last week and means more meds. Not great news but I'm encouraged by the Dr 's practical attitude to it, they do not see it as out of the ordinary.
I am very nauseous til about 2pm (?!) Then I feel ok for a while, it might mean anti rejection needs changing.
I have gained 2 kilos which is good, but probably fluid again as its another dramatic change from before so hopefully it'll come right a bit more.
Kerry I really look forward to meeting you, I've heard a lot from my family about you and I want to have a chat myself!
I'm feeling good from physio but my moods are still a bit crazy, I'll just enjoy this happy feeling. and sense of achievement for this moment :)
Much love to everyone and good luck to anyone facing surgery soon,
Had a bit of as disappointing day yesterday. They took the central line out of my neck ready for biopsy and put me on nil by mouth then in was told its happening tomorrow and there had been crossed wires. Tomorrow is Lawson birthday so I was miffed but I'm trying to start afresh today.
I had a treat last night in that my inflatable matters broke so they have to give me a normal one. I am floating on a oud of comfyness right now til the normal one gets replaced.
I am now down to 4 on my infection marker which is in normal range for a normal person. Let's hope it stays there!
«mid post update»
The Dr who deals with my anti biotics is saying 4-5 week course now which is good news, so we've shaved a week off there potentially from what it might've been.
The nurse thinks I might be able to keep my new mattress! Imagine, no beeping when if deflates and no bumps poking into my bony back! Honestly it's the little things sometimes.
The dieticians going to come and talk Bout my weight. It's dropping off and I really need help, please pray my body turns a corner and starts taking the food inn more as its quite.worrying to see my body get so thin when I'm trying so hard.
Lots of love to you all, I'm reading the messages in the guestbook and they're really helping me. Take care xxx
I've had some good news in the last week sites have a positive post today, they want me in hospital as long as my antibiotics are due which equates to potentially leaving in about 1-3 weeks! The stocking point is as always the infection.
I also had some great news from my work which means I will not need to worry about my job or supporting myself while I recover. I am so lucky to have their support.
In other good news since you are all well acquainted with her now, Vicki has had a job confirmed in Manchester and a new flat in the block.next to me so she can get out of London and start afresh up north! We're all really happy as this is what she really wanted
I've struggled bit but physio is progressing v quick now, I was out with just a walking stick.hobbling around like Hugh Laurie in House yesterday!
Hi guys, sorry for not updating sooner. The past couple of days have been a bit rough, the steroids have been affecting my 'grog' brain - as Ernie might say (the bit that deals with your instinctive emotions without your logical reasoning brain, so I've been through a lot of emotions that have popped up unexpectedly. The nurses have helped and explained how this happens and that I've not just gone crazy..
The biopsy result was r1, not as good as zero but no cause for concern. Please pray I stay on good form. My new heart is behaving itself otherwise and I think we are getting on just fine :)
They are switching my drugs around to try and stop nausea and shaking which makes everything harder to do, and also to ones that will stop me getting hairier! Hope this is for the best, but we can but try & they review everyday.
My love to you all especially a special mention to Rebecca I really appreciate your comments and would love to meet up when I get to Newcastle. I got the be brave pebble it's really nice :) hope to send you a longer message when I'm more well.
Rach asked me to do a little update tonight as she was tired out as she had her first shower today. Her hair looked so beautiful and shiny after a proper wash!
I took her up a little pizza and salad and dip for tea and she practically polished the whole thing off - I couldn't have been more impressed.
Tomorrow she has her second biopsy which she is understandably nervous about and she would appreciate any crossed fingers/prayers etc! She is having trouble with the line they use for her antibiotics, of which there are still plenty. She is also wanting to get rid of the NG tube that they use to feed her at night - hopefully all the pizza eating is bringing this a step closer but we will have to wait and see what the doctors say tomorrow.
Today was quite a big day really, I had pacing wires and a drain out leaving me with just a drip and my nasal gastric feed tube externally. I've been dead tired but the physios bake explained now I'm getting out of bed more there is a lot of indirect physio going on and they are happy with how I am getting on. I've more and more energy and positivity each day and a lot of it in in part down to the massive support you and my family have given me. Thanks so much. Time for bed after this IV. ZZZZZZZZZZZ
Rach has had another good day. She tried a cooked breakfast today and enjoyed it. The only bit she couldn't manage was the bacon as she couldn't cut it up. It's great to see her appetite return and her enjoy food a bit more again. She's been working hard in her physio again but managed a break this afternoon and watched some of Despicable Me on the TV she has in her new room.
She is hoping to maybe return to doing the journal occasionally herself now, perhaps with a bit of help typing. We will see how she gets on as her days are pretty busy!
Just to let you know we may not update every day from this point on. We will still update regularly but please don't panic if there's no update some days - it just means we're saving a bit of energy for spending time with Rach. Doesn't mean anything bad is happening! This journal is an amazing resource but hopefully we'll be gradually phasing out our involvement and handing it back to Rach - she's the one you really all want to hear from :-)
Thanks again to everyone for all the support, it's never ceases to amaze me! It's lovely to have good news to bring you now.
I ' m so proud of both my strong daughters who are hanging in there in different ways.
Vicki , looking out for her Sis so much every day without fail .
She is also coping with making plans for the future which will involve a lot of change .
Seeing Rachel walking down the corridor today without the zimmer and only loosely holding the Physio 's hand moved me to tears .It feels incredible and wonderful to have Rachel back. I can't thank God enough !
Not as exciting for Rachel , is getting used to taking the very large no of pills ,[ this will be for life ] . She also had her catheter removed.
She only now has 2 tubes , which is incredible progress. She may even get a shower tomorrow . As Rach keeps saying , " It 's all happening so fast " , it's hard to get hers and our heads around. R is eating better ,Lawson can visit again , last of infection needs to go still.
We thank God for bringing us this far and hope to go on with Him.
All your love , prayers and emails continue to help us each day . Thank - you .
Rachel had an echo today and the results were really encouraging; we also hear that the infection is now almost negligible. She moved to an isolation room on the 'normal' transplant ward this evening and should soon be mixing with other patients. The biopsy taken yesterday showed no signs of rejection; she has also had another line taken out and is looking more normal than ever. We are all really pleased with her progress and enjoying the time we spend with her; after so long without her company we feel the need to enjoy every minute she's available. Rachel is very happy and full of life, it's lovely to see. She sends her thanks to all of you, she's very aware of the support you have given her and amazed at the love you've shown her. So are we!
Well what a change! Due to a cold which I didn't want to risk passing onto rach, today is the first time I've seen her in 2 days. I couldn't believe the difference!
As I walked in the room, rach was sat in her chair smiling without an oxygen mask, free of all i.v lines and waving to me. She was upbeat and excited to tell me how she's been given the all clear to move onto the normal ward and how yesterday she took her biggest walk yet down the corridor! Far from the rach I last saw who didn't feel her efforts were good enough and that she couldn't do what was being asked of her, here was a completely different person full of pride and a sense of achievement.
It's so exciting to see her like this and I feel as though it can't be too long before she's back home to continue her recovery.
Before seeing rach, we had the opportunity to meet with an amazing lady who had a heart transplant at Wythenwshawe around 3 years go. Keen to give something back, she (along with others in the community who are transplant recipients) are part of a buddy group which meet together socially and with others like rach who are new to this and with questions to ask.
The first thing to say is just how incredible it is to meet someone who has been through this and looks so healthy! Speaking very openly about her own experiences she told of her pain, difficulties but also her passion for life and living. She was able to answer some practical questions we had surrounding Rachel's long term care which was really useful and, as soon as Rachel's infection clears up, looks forward to meeting her.
Rach had her first biopsy today to test for signs of rejection which she found more uncomfortable than painful. We'll get the results of this tomorrow so hope all is clear. Wythenshawe is apparently able to boast of never having had someone die of rejection following a heart transplant which is incredible.
We're all so grateful for the day she's had. Thanks as always for your support.
I had a really lovely visit with Rach this afternoon. She was a bit fed up when I first arrived and had a bit of a rant which I quite enjoyed in a strange way! I’m glad she’s got the energy to be getting a bit fed up now and hopefully this will help spur her on to getting better and independent again. She did amazing in physio today, was totally up for having a go and invited me to join her for a walk down the corridor. She managed to stand and walk 34 steps! This beats her previous record from before the transplant of 22 steps by a big margin! She also managed to stand again and get back into bed with only minimal assistance. The best bit for me was her saying ‘Wow!’ as she stood up on her own – she is finally starting to see how great she is doing! She was really pleased with her progress today and I think particularly encouraged that she hasn’t gone backwards.... in fact she has gone 12 more steps forward! She has also managed to eat a bit more and isn’t feeling so sick, and slept in until 10am. I really think the sleep and increased eating is paying off with what she is managing in physio. Hopefully all of these trends will continue.
I think she has her first heart biopsy tomorrow to check whether her body is rejecting the heart at all and if any of her medication needs to be changed. This is a test that will be done regularly – more frequently to start with. It is done under a local anaesthetic through a vein in the neck. Understandably Rach is nervous about both the procedure and the results. Please pray both are good and that she continues to sleep and eat well. Although the infection is not causing immediate issues it has not gone still so please also continue to pray that that goes too.
Lawson is feeling better today but is waiting a day to be sure before he goes to see Rach.
Rach has had a better day today. She actually managed to get a bit of sleep last night and has eaten a bit of food today (half a tuna sandwich) and actually felt better for it. She managed 5 hours in the chair, a bit of walking and some visitors. She said that she had actually felt a bit happy and more positive - I can't tell you how good that was to hear. I'm really hoping this is a corner turned and another small step forward. She was concerned that often a good day is followed by a bad night but I really hope that is not the case this time and that all that will follow today is a peaceful sleep.
Lawson had come down with a cold so is unable to see Rach at the minute as she has to be so careful about germs. This is quite hard for both of them - hopefully he will make a speedy recovery so they can get back to seeing each other soon.
As always, thank you for everyone's continued support.
Thank you again for all your prayers , love and care.
Rachel continues to progress very well physically with respect to her heart. As a result of the sedation for the op and after though , she has lost alot of her muscle strength , so she is finding it very hard to do the physio all over again. Bless her though , she is now back to managing a few steps .
She continues to feel sick most of the time in spite of anti sickness drugs and so has not managed to eat as much as the professionals would like – and it’s miserable for her. She still hasn’t slept properly and is anxious about it .
All this Rachel says , makes her feel that this time her progress is much harder to achieve .
We do our best to encourage her and are so grateful for this first week going so well overall.
Another day and hopefully another step nearer to life for Rachel. She has been doing well with her physio and has visibly become more positive in her attitude to the discomforts she has to get through. The restless legs are much better and the only concerns are: nausea, lack of sleep, lack of appetite and fatigue. The last three nights Rach has had 3, 3 and 4 hours sleep and is beginning to view the night with some trepidation. If she can get a good solid sleep tonight it will make such a difference to her.
I read some of your messages to her this morning and she really appreciated them; we even got a smile at one email! She's also been so reassured to hear from other heart patients - that what she is experiencing is normal. It shouldn't be too long before she is able to read these for herself on her iphone.
Caroline and I had a wonderful sleep last night - Caroline from 8pm and me from about 11 - it makes such a difference to our feelings and outlook to be rested; we're much more ready to face the challenges of the day. It's only just beginning to dawn on us that Rach has got a new heart and we - with her and Lawson - can look forward to better times. This is such a life-changing experience - hard to explain - but it certainly changes our attitude to life and what's important; hopefully we are learning lessons which will be of use in times ahead.
It's been another strange day. Rach continues to recover well from the transplant but struggle with the side effects of the many antibiotics/immunosuppressants. Currently she is struggling with an upset stomach making eating and sleeping difficult. She only managed 2 hours sleep last night - nowhere near enough even on a normal day!
This morning she was suffering from restless legs - pretty unsettling and unpleasant and mum and dad stayed the whole morning trying to offer a bit of comfort. The drugs did eventually kick in and when I saw her this afternoon she was more settled though very tired.
She did manage 4.5hours in the chair so I took her in another star for her chart this evening and she stood again as well. However by this evening she was too tired to even say goodnight to everyone, asking me to pass on a good night to mum and dad.
Overall her recovery continues to be good - but we still wait for the day when Rach starts to feel better in herself. That will be a very happy day for us all.
Thank you again for all your continued support and being with us for all the ups and downs of this journey.
Rach has had another good day physically with everything improving. She has no I.Vs running, minimal oxygen support so is very nearly independent from everything. I haven't had an update from the nurses about her heart but everything appears to be great so far. As well as a long period in the chair, rach stood up today so the speed with which she's achieving that which took her so long to do last time is fantastic - all the hard work she put in whilst waiting for the heart is really paying off here.
Whilst we can see a slight improvement in Rachel's mood, it's still low at the moment. She's exhausted when we see her and craving sleep's reprieve. When she does speak, her words are chosen carefully to conserve energy - "water", "night night", "love you".
Having spoken to the wife of a patient who is several days further along than rach following his own transplant, we're told that he's also experiencing quite a dip in mood. Vicki found a good transplant website which has stories from others who experienced something similar so we understand this is fairly normal. Personally I don't think I'd be able to be as strong as rach in this situation.
To see her feeling distress, fatigue and anxiety is really tough and it's difficult to know how to feel. On the one hand, there's so much good news that it's hard not be upbeat whereas on the other, knowing that she's lying there experiencing all of this feels worse than when she was in a much more critical state but unaware of it.
I'm so pleased and grateful that there's an end goal in sight which is to get home rather than just survive but I wish she didn't have to go through these painful post op days.
We're all hoping that more sleep and time will help and look forward to seeing her again tomorrow to try and help lift her in any way we can.
Just a short update tonight. Rachel continues to do well and the medics seem very happy with her progress; she is on reducing levels of medication and support, plus an oxygen mask to help with breathing. She only managed about 3 hours sleep last night and is so tired - despite this she has been up in her chair for over 5 hours today. This is necessary as , without the tube, she has to work hard on breathing and coughing to clear her chest - her left lung was purposely collapsed during the heart transplant and she needs to expand it as much as she can - and this needs her to sit up as much as possible.
So all is well - but it's hard to see Rach so tired and somewhat distressed; she hasn't felt able to see us for more than a few minutes today, she just wants to be left alone to get on with it or sleep - preferably to sleep. I find this really upsetting as I don't like to think of her having to go through this on her own; just wish I could stay with her to cheer her on or better still 'make it better'. I guess all parents hit this feeling at some point. It's not an easy job.
A good night's sleep would be worth a lot to Rach just now (and to us!).
Today has been a day of huge change for Rach. Her sedation was turned off, her breathing tube removed, her feed restarted, temperature down (which signals favourably for her klebsiella infection), her drainage tubes removed and she's just about talking. In this respect, a lot of the steps she took so long to take last time have already been retraced which is excellent. From a physical perspective she's doing great and everyone is pleased with her progress.
She still receives inotropic support for her heart although these are low in dose and completely in keeping with what is considered normal.
Despite this great news, it's probably been Rachel's most difficult day.
Whether it's a complication of the anaesthetics, lack of sleep, stress catching up with her or a combination of all these factors, she's really struggled emotionally and mentally today in coming to terms with everything. Completely understandably, she's very worried about what is happening around her, what all the noises are and what the nurses actions are for. She's very distressed and fearing that something could go wrong. Before I left, she was terrified of falling asleep fearing that the sudden and as yet unknown reason for her decline following her first surgery in Sheffield could happen again. In short, she strongly felt she would die if she let herself sleep.
Several doctors and nurses visited to reassure her that everything was going extremely well so far but I think it's only when she wakes up and sees proof of this that her anxieties will ease.
Clearly, this is incredibly distressing to see but as Vicki wisely pointed out, we have the benefit of 24hours on Rach during which time, we've seen for ourselves how well she's doing. The time spent to witness this is something she's yet to benefit from first hand.
Her family and I are all now optimistic and really feel given today's huge progress that she is genuinely now on the path home and hope that this belief will soon return to Rachel.
So given her progress, what of the next few days? The doctors anticipate that she may well be walking (similar to before) albeit short distances. Her inotropes are likely to be stopped or reduced further and she should be able to return to eating. Her current weight has dropped to as low as 40kg and this emaciated state means she has almost no energy so regaining muscle mass is key.
Our job is to simply be there for her and help in any way we can.
On the whole a really good day so we're just desperately hoping she can manage some sleep and begin to see this for herself.
So it’s still good news – Rach has had a stable night and at present there are still no complications. We are not used to this! She is still on a lot of infusions to control blood pressure, sedation etc but they are slowly being reduced. Her sedation is quite light and she has opened her eyes, gestured that she was thirsty and nodded slightly in response to people talking to her. She is definitely not fully awake but this is still far more than we expected at this stage. She will remain sedated and intubated for now.
We are still finding it all quite hard to take in. The donor and family are very much on our hearts and minds. The gift they have given us is incredible and I will be forever grateful for their courageous and generous decision in such a difficult time. This heart means to much to all of us.
We are also very grateful to the staff and hospital here for the amazing care they have given, and continue to give to Rach.
And of course, thank you to all of you, it was great to have you all there with us yesterday, praying and hoping all the way through. I’m sorry I didn’t reply to people individually but please know – every message, text, email was appreciated.
It is a strange feeling now to know the heart has come, there is relief and joy but it is restrained as we know that although this is a big step, the journey is far from over and there are still risks to face. It’s hard to balance all of these emotions.
The simple thing though is that my little sister needed a new heart and she has got one, and from what we have been told, a good one. She also seems to have got it at just the right time, when she had gone as far as possible in recuperating through physio and was living at the limits of the bivad machine. This really is amazing timing.
Please though, I know we’ve asked so much, but once you've taken a chance to celebrate the amazing news of the new heart, please keep praying and hoping. She has made 24 hours now but there is still a way to go and infection in particular is a big risk to her now. Especially with the immuno-suppressant drugs she is now full of.
Rach is out of surgery. Things have gone well. We have yet to get a full update or see her but hopefully that will happen over the next few hours or so. The new heart is a good one and there were no major complications to surgery. This is a big step forward but still more critical hours to come. Can't wait to see her for myself.
We all got to see rach before she was taken into surgery. She has now been put to sleep and the surgeons will begin the complex job of removing the bivad. If all goes to plan the new heart will arrive when rachs is ready for removal. We are hopeful that this is the one but still there is no guarantee so please, more than ever, keep praying. We can't thank you enough.
It’s been another tough day today. Rach’s Bivad tubes were leaking again last night so it was decided that it would be best to do a CAT scan today so that the doctors could see whether the tubes were still in the right position and whether there was internal bleeding.
Rach was quite distressed about this this morning and was worried that another operation might be required. The doctors were great and spent time explaining everything and Dad went up and spent some time with her. Myself and mum were requested before she had a nap ‘so she could see our faces’. It is so much for her to take in.
As far as we understand the scan has shown that there isn’t internal bleeding but the Bivad tubes have moved, possibly due to the physio. At present the position they are in is not great, but acceptable, which will mean Rach needs to stay in bed to avoid them moving any more. And the need for a new heart becomes that bit more urgent.
In the short term Rach will have her Heparin turned off to try and limit any bleeding (the heparin thins her blood meaning more bleeding), probably for 24 hours. However this does increase the chance of blood clots – please pray this is not the case.
Rach was in quite a bit of discomfort when we saw her earlier. Her tubes were hurting and she was uncomfortable and unsurprisingly nervous of moving.
It has been a hard day seeing her upset and in pain but we are glad that the intention is still that the next operation she has will be to provide a new heart. We hope that day will come soon.
Rachel had a bad night last night, with little sleep; her VAD tubes were giving her trouble and leaking and she couldn't settle. Today she has been trying to catch up on the missing sleep; she only had one physio session and her eating has been a little erratic. Compared to the high drama of past weeks this probably doesn't sound too bad, but it's the ongoing grind which can be very wearing and dispiriting for her. She has again needed more blood and is taking on board another three units, hopefully this will help her to feel more able to tackle the challenges of eating and exercising.
Rach needs her VAD changing (10,000 mile service and oil change.....), which will involve her being sedated again, just for a short time; this also gives an opportunity for any changes in her heart to show themselves, as the VAD is off-air for around 30 seconds. That's about the extent of her plans for the days ahead.
We're tired but OK and glad to have good friends - like you
I'm pleased to say that today has felt like a better day. Rach managed 21 steps in physio and then had a go on the bike this afternoon (whilst in bed - I really need to ask her how that works).
I had a nice time with her this afternoon and enjoyed chatting. I took her some food over later on but it was not needed as she'd already agreed with the nurse that they would get some fish fingers from the trolley and make a fish finger sandwich. Of course this was only complete with lashings of vinegar and ketchup - Rach is a big believer in condiments. She is having to work really hard at eating as she needs to put some weight on still (quite a lot of weight if the nurses have their way). I reckon that sandwich will definitely have helped though! I never thought I'd say this but please pray for her to pile on a few pounds :-) It will really help her be ready for the transplant when it comes.
We were woken this morning at 5 am with a phone call to say that another heart was available; Rachel had woken at 3.30 am and asked for a drink and had to be refused, so she was told then. She didn't get any more sleep, unsurprisingly! The team had tried to postpone telling her the news so that she could get a good sleep - they're brilliant and really thoughtful of all our conditions and feelings. I called Vicki and Lawson and they drove over as we pulled our clothes on in that burst of adrenaline which we now recognise so well; when we got to the ward we went in to be with Rach - a tired but determined figure, who was sure that this would be 'the one' at last. Sadly, by 7.30 we found out that once more, the heart wasn't viable. Lawson stumbled off to work (his first day back, on reduced hours) while we breakfasted then did the food shopping at Tesco.
It's a strange feeling to get so excited and then to have nothing happen; how Rach manages to cope with it with such calmness and dignity is amazing. I feel as though we're in a boxing match and have just been knocked down for the third time; we're back on our feet but rather dazed and a little punch-drunk but ready to go on; you people in our corner are our refreshment and God gives us strength for the bout. In the words of St Paul...."this precious treasure—this light and power that now shine within us—is held in a perishable container, that is, in our weak bodies. Everyone can see that the glorious power within must be from God and is not our own. We are pressed on every side by troubles, but not crushed and broken. We are perplexed because we don’t know why things happen as they do, but we don’t give up and quit. We are hunted down, but God never abandons us. We get knocked down, but we get up again and keep going." So we press on - bless you for journeying with us!
Just to prove that Rachel wasn't too depressed by this morning, in the afternoon she went for a walk down the corridor (accompanied by physio, the VAD machine and sundry other pipes, tubes and small machines) and managed 18 steps. This is a world record and deserves a gold medal! She must have looked like a monster from Doctor Who with all the tubes and pumps whirring but we're so proud of her. If she has the energy tonight she will be looking at her new Kindle and starting to see just what it can do - I think we'd settle for a quiet snooze in front of the TV.
No day here is boring........
Love from Peter
ps from Vicki
When we saw Rach this evening she was worn out, queasy and had been shivery for an hour and needed some medicine to settle her down. She was also quite anxious about a few things. It is so hard to see her like that, I can't describe how much we wish we could do something to make her feel better. I had to settle for providing squash and reassurance and lots of big sister love. She has done great today and I really hope that now she can have a really good rest after all of today's events and start afresh tomorrow.
Rach has asked me to put a special thank you note on as her work bought her a present quite a while back and she has only just had a chance to open it today. Her face was an absolute picture when she opened it - it is a lovely thoughtful present! She really enjoyed reading all the messages in the card too. She wanted you all to know how touched she was and that she didn't mean for it to sit there for so long! A big thank you from Rach, and from the rest of the family, it was lovely to see a big smile on her face.
I should say that she does still have some presents unopened so if you haven't heard from her don't worry! She often only manages one present on a good day so we are spreading them out.
On a side note my mum's phone is being a little temperamental so it might be best to get in touch via email/via my dad for now.
Rach has had a mixed day, she felt rotten this morning but has finally had a top up blood tranfusion and was already looking more herself this afternoon and even better by this evening. She even had a hint of pink in her cheeks which we haven't seen for days.
We understand that there has been a chance that the doctors would accept a heart for Rach that might have needed some ECMO or VAD support. However because she is doing well she is now in a position where they can afford to wait for a heart that doesn't require any of these things. This will hopefully mean that when a heart comes, Rach will only need one operation and will be hopefully getting a really good heart. This doesn't change her status on the transplant list in any way but may mean she has a bit more time to wait for the right heart. We still hope that a good heart will turn up pretty soon though!
On a lighter note, I have posted a photo on the 'my photos' page with Rach's favourite suggestion of what to do with her 'Merry Christmas' letters. We've kept the spares in case she wants another change later as there were plenty of good suggestions. Thank you for all your suggestions and messages - Rach was amazed how many people wanted to join in :-)
Rach had a good number of hours sleep but was still wiped out today. She awoke in the early hours to receive some more painkillers before managing a bit more sleep.
The day has been fairly similar to most others at the moment. She made good progress with the physio as she was able to walk to the wall twice from the end of her bed and had to fend off their enthusiasm to get her out of her room and into the corridor for the first time. Whilst they think her muscles could be fit enough to manage a longer trip, it's the chastening fatigue she experiences when doing anything physical which prevented this today.
A new line was put in (another passage for painkillers and drugs rather than a repositioned arterial line) which caused her some discomfort but nothing major.
She's becoming more sensitive to the state of her tubes, dressings and lines and is beginning to worry more easily when they show potential oozing. The nurses are doing a good job of reassuring her that everything is fine (which it is for now) but an understandable sense of anxiety shows in her. All we can do here is to recognise this and be there to provide comfort, remind her of the outstanding job she's done so far and help her stay focused on keeping her mood up.
Speaking of which, her friend Danielle came to visit today which really cheered her up! She's had a good week for visitors with her other friends Charlie and Sammy also travelling across the country to catch up, show support and just talk normally with her. It's also really worth mentioning how much of a smile we saw when she received the various cards from fellow HVJ members in America, Australia and the UK.
The wait continues for a while longer and we're all hoping it comes soon. I desperately miss her after what is almost 8 weeks of being in the ICU.
A treat for everyone tonight, it's going to be a Mam update. But before I hand over, Rach wants to set everyone a little challenge. She has had some jelly letters on her window that spell out Merry Christmas. Rather than chuck them now christmas is over she wants to come up with something new for them to spell out.... so anyone with a good idea, please stick it on the guestbook and Rach will choose her favourite :-) There's a photo of the letters on the photos page in case you're not sure what I'm talking about! Now I'll hand over to mam....
Hello everybody ,
Caroline here to give Peter a break.
Rach continues to work so hard , bless her.She managed more steps today and walked to the wall in her room. This is probably 2 or 3 more steps . Rachel is absolutely wiped out when she does this and then has to sit in a chair . The physios mind are very pleased with her progress.
Rach has had a couple of stitches put in her V.A.D wound so hopefully this will stop oozing now.
We understand that a heart may become available within 2 weeks or so roughly speaking.
Please pray 4 Rach to have a good night ‘s sleep and also 4 pains in her left foot to go + the obvious .... a new heart one way or another – miracle from God , or transplant please.
We can also do some thank you prayers that at the minute her arterial line is o.k and for all the muscle strength she has gained .
Peter and I were able to enjoy our Christmas presents from Lawson today. We dipped into the Science Museum and saw a couple of steam engine demonstrations. We then went to the Hilton for Afternoon tea .My phone was to hand all the time just in case , but we did our best to switch off and did have a lovely time.
Thank you again for all your prayers and love – we feel so supported .
Well it's another good day and the first of the New Year but no heart yet I'm afraid. Rach had a rough night's sleep but in spite of this, has still managed to make good progress. She managed a few good steps which really impressed her physio and has eaten a bit more.
Good news too for her arterial line - this had been causing her a lot of hassle and discomfort and there was concern that this would need to be changed (no easy task given that she is running out of arteries which can be used). Fortunately, one of the doctors has managed to get the existing line to work more effectively so we're in the clear for now.
Her mood is determined rather than positive which is very healthy and she seems ready, both mentally and physically, for another huge surgery when we get the nod for the transplant. I'm really hoping this comes soon. The waiting is strange given that we had two calls so close together within a day of being listed but I'm optimistic having poured over the statistics for transplants listed on the NHS website. This makes for interesting reading if anybody is like me and draws strength from this type of thing.
I'm afraid it's back to Vicki again. I can't believe how lovely it was to have Rach do her own post yesterday. I was so proud of her as it takes an awful lot of effort for her to manage even a small amount of text. I've uploaded a photo of the star chart she was referring to in her post - we only made it the day before and already she's ticked another one off! She's come so far and is working hard to tick off some of the other goals on there.
Rach had a migraine this morning but once she'd had some sleep still managed physio this afternoon. She did some in-bed cycling - and before you ask I have no idea quite how that worked! I do know that the physios were really impressed with her and she was quite exhausted afterwards.
Rach has been told to eat lots and of whatever she wants as she has many calories to catch up on. Today that has included milk, soup, cocktail sausages and some pear. She still has the feed overnight but everything she can eat during the day helps to build her up more. I did my best in tesco earlier to find all of her requests, elbowing a few new-years-eve-panic-buyers out of the way where necessary!
Rach needs a new arterial line as the current one isn't reading properly. Unfortunately they are running out of arteries for this line and may have to do an extra long line in a current site or use her groin - neither are ideal. Rach isn't too happy about this understandably.
So this brings us to New Year. It will be no surprise that our big hope for this new year is a new heart - a beautiful healthy heart with many years in it. And that Rach will be as fit and healthy as possible to recieve it. We also hope for a happy and healthy year for all of you - our friends, family and fellow heart journallers.
Rachel developed a temperature today and has now got a staph infection, for which she is now receiving a new antibiotic; she is quite tired and finding it hard going. The docs put a new line in her today and she is very sore and wondering how she's going to be able to sleep. It is hard to see yet another obstacle put in her way, but we should really be very thankful that it is nothing more serious.
We are still feeling the effects of sleepless and tense nights; while we'd really like another couple of nights decent sleep we'd also like a good heart to be found quickly... but as the song goes, 'a good heart is hard to find'. So far we've been amazed by the timing of events on our journey; each time we've needed something it has been provided just at the right time - so we believe that the right heart will come at the right time. We just need patience and endurance to keep pressing on each day. As ever, small acts of kindness from lovely people give us energy and hope on a daily basis.
Another batch of letters, cards (and bills) came today and we really enjoyed catching up with news of friends, old and new; they have nourished us and reminded us of our life outside the hospital walls. We ask a blessing on them and all of you, you are a lifeline for us.
Caroline and I have just spent a happy hour talking with Rachel; it's amazing to be able to have a conversation with her after all the weeks of silence. She is still determined to get better as fast as she can, but she's now added a touch of her old commitment to customer service! She is no longer behaving like an angelic being, much more like someone who will 'not suffer fools gladly' and she has been quite grumpy as a result - we absolutely love to see this again!
Medically, the only issue we're aware of today is a discharge from one of her vad tubes, which is leaking through her dressings and causing some soreness and pain. Rachel has fixed on this as something to fret about (and of course she has reason). As I understand it, Rach currently doesn't have a temperature so there is no immediate concern and the area will be treated tomorrow; in reserve is the new antibiotic, but we'd prefer to keep this back until the transplant rather than compromise its effectiveness by using it before.
I'm very aware that I may well not be making sense, we've had a good day but tiredness is making us all a bit fuzzy. I'd better say goodnight, with many many thanks for your support. You're amazing.
Rach didn't get much sleep and is pretty tired and was a little anxious when I first saw her this morning. However she successfully had her chest drain removed this morning which was a big relief to her. She's stood twice with the physios and sat in her chair for a bit. Most importantly she fitted in a nap this afternoon. She is currently chatting to Lawson and tucking into some spaghetti hoops.
Considering the events if the last few days she is doing well and remaining remarkably positive.
We're all hoping she and the rest of us get some much needed sleep now.
Here we go... we've had another offer of a heart, this time no risk factors involved. If it proves to be viable we should know by midnight-ish and Rachel could be in surgery 'in the early hours of the morning'. Based on our experience this could mean anytime between midnight and midday tomorrow. It looks like our long day is going to be even longer, but we hope it will end happily. Please pray for Rachel, for the surgeons and for us! Thank you!
Our day started at 2.50 am with a call to tell us that a donor heart was available; we were needed immediately to discuss this as the heart was in a high-risk category. Did Rachel wish to take this risk?
A straightforward 'no' seemed appropriate, but we were given some new information; as far as we understand it Rachel has a rare infection and the current antibiotics are barely holding it in check; a new antibiotic has been developed (on Thursday last week) and there is some hope this can tackle the bug - but the new anotibiotic will work best once all sources of infection have been stopped (ie after transplant surgery) - it shouldn't be wasted now in a vain attempt to beat the bug. We now understood that keeping Rach alive has been a miraculous achievement but that - timewise - we were getting closer to (life-threatening) major problems.
This gave us the now expected cold shock and we began to think along the lines 'how many more days of life can Rachel have on the existing regime/how long before another heart becomes available?'. On balance, Rachel decided that the risk of 'high-risk' transplant was less than the risk of waiting longer in the hope of a better heart. In the end - and with only minutes to spare - we committed to the transplant. Then we sat and waited - with Rachel mainly, sometimes just outside her room, talking, listening, crying, holding her hand... you know how hard such waiting times can be.
After many hours of waiting we were finally told that the heart had been deemed not viable.
We knew that cancellation happened but this came as a shock to Rachel, who then started to ask difficult questions like 'how long have I got?' - not easy to respond when you're spaced-out with fatigue and day-long tension. It's been hard for us all and we're in a bit of a whirl just now, all desperately needing sleep to reset us ready for the next day.
It's not all been bad. I had a joyful and deeply happy time this morning, when Rachel and I held hands and talked a bit; then she fell asleep holding onto me and I was able to watch her and drink in the features of the girl I've become so desperately fond of. So much love! What joy! The times of deepest pain seem to also produce these moments of blinding emotion and realisation; when all the cares of the world and all the need for worldly things just melt away in the recognition of something far better, eternal and precious.
And then the great satisfaction of seeing Rachel demolish a bowl of spaghetti hoops and a cup of peppermint tea - like a hungry little bird tackling a particularly juicy worm. No father ever rejoiced over his baby's first steps, first words, first solids like I did today over my daughter.
So - as Pollyanna said - tomorrow is a new day. It may contain a new heart; it might be uneventful; Rachel may get better; the bugs may win for a time.... I'm content to stop fretting about it and enjoy my lovely family and friends every minute I can today. And my cranky old bed looks very appealing just now!
We got a call at three to say there is a heart but it falls into the high risk category so Rach would have to decide whether to go ahead. Rach has thought it over and agreed to go ahead. She is scared but not panicked. Now we just wait for it to be confirmed the heart is in good condition and for it to get here.
Hope that everyone has had a lovely Christmas with family and friends. Rach wishes you all Merry Christmas too.
It's been a fairly quiet day which has been nice. Rach has had a day off standing/sitting in the chair which has given her a break. She didn't sleep much last night so I think that was good. She opened a few presents with us all this morning and requested a homemade turkey sandwich for lunch which we were very happy to provide. She is allowed to eat anything she wants - even Mcdonalds if she wants! It's all about getting more calories in to build her up a bit more as she is even more tiny than usual at present.
Ideally Rach's chest drain would be removed today but Rach is quite nervous about this and said she wasn't ready. Hopefully after a good sleep tonight she will be ready for this in the morning and hopefully this time it will be without drama!
We had some presents with Lawson before he went to spend some time with some of his family and then mum, dad and I had a Christmas dinner in the bungalow which my dad cooked - it was delicious! I've then finished off the day watching a bit of TV with Rach which was lovely and relaxed and quite a normal feeling thing to do.
One highlight for my mum today was that she got her Christmas wish for us all to have a cup of tea with Rach. We all had a cup of tea and Rach had peppermint tea! You wouldn't think a cup of tea could feel so special but I know it did for my mum.
Rach is adjusting to all the news of yesterday slowly and it was good to talk to her a little more about it today. She is being so brave though and just seems focussed on wanting to live, and wanting to live with Lawson. He’s a lucky guy!
Thank you again for all of your support and best wishes to the fellow heart journallers for safe surgeries and speedy recoveries. Hope you all continue to enjoy the festivities.
Just a quick one to add to Peter's excellent update!
I'm so so happy to now have a definitive outcome for Rachel. She told me (in her own voice now this is back!) that she'd known that she was probably going to have a transplant some time ago. Apparently the surgeons were quite realistic with her which, considering how she took the news today, was a good thing. She accepted the decision and signed her consent knowing it was the right thing to do for her.
As peter rightly points out, this is another major operation with a new set of risks both immediately and over the medium to long term. It will also involve retracing her steps of recovery but at least this next time she'll be something of a seasoned pro with knowledge of what to expect and even more self-belief in her ability to recover.
One thing that is certain with a heart transplant is that there are major long term issues associated with the various drugs she'll be dependant upon. These have not yet been fully explained to her but she does have a booklet to read through when she's ready. However severe some of these may seem, they're a small price to pay for a new chance at life. In this respect, I can't help but feel positive about the news and that her acceptance onto the urgent list is a really wonderful Christmas present.
I wanted to write a journal but it's been a long day and my Dad has done a great job so I'll leave you with his update again for today....
Another day on the rollercoaster. We heard - as we went into visit Rachel - that she had a good night's sleep last night and seemed fairly bright this morning. As far as as we understand the conclusion has now been reached that the only viable treatment for her is a heart transplant. The risks of remaining on the Bivad were increasing and - in her condition - it shouldn't be regarded as a long-term option. Rachel is now free of pneumonia but the superbug remains a threat and isn't reducing any further. An implantable device would expose Rachel to a much greater risk of the infection spreading. So a heart transplant is a much cleaner way of getting rid of all the tubes, which bacteria love, and giving Rach a better chance of fighting the bug 'normally'.
We believe the statistics for the surgery are as follows - 9 out of 10 patients are expected to survive the operation and 8 out of 10 to survive the difficult 365 day period following surgery. If she survives, her life will depend on her faithfully taking immuno-suppressive drugs, which may compromise her immune response and damage her kidneys. Rach was asked if she wanted time to think about this but she decided immediately that she would go for it, so she is now on the 'super-urgent' transplant list. Apparently there are 2 national lists; the 'urgent' list is theoretically for those awaiting donor hearts but in practice nobody on this list gets a donated heart until their condition deteriorates sufficiently for them to be upgraded to 'super-urgent' - this means that Rachel could be in surgery receiving a new heart any time from this evening to 6 months (or longer) away. We're going to have to practice our 'hurry up and wait' routine a lot more.
Rach's trachy was removed this morning, we stayed with her while this was done; then we had the utter joy of hearing her voice again - first words 'I can breathe' with a big smile. We were able to have a proper conversation at last, then we talked about the transplant and her feelings. She was worried her mum would be upset! The was a lovely time for us. Once her breathing and swallowing were checked out, she ate some biscuit and half a pot of yoghurt, washing it down with some fizzy Sprite; she is now allowed to eat anything she likes and has ordered a turkey sandwich for her tea. Yay!
Later, Rachel got up into a chair and took her first faltering steps. These moments are treasures I can't fully explain. We spent most of the rest of the day with Rach, signing various consent forms and going through what we can expect before, during and after surgery. I think we're all still coming to terms with the news, though Rach is doing astoundingly well and has chattered pretty much non-stop. She is looking much more her old self and says she feels a lot better just over the course of the day. Like I said earlier, it's a real rollercoaster.
We all send you our love and hope you have a wonderful Christmas, full of friends and family, love and laughter
Today has been a hard one for Rachel; she didn't get much sleep last night and she has spent most of the day being sick into one of those wonderful hospital bowls. Much of the time she has been a dejected and unhappy figure; she was worrying that if she kept on being sick she wouldn't get better. It's hard for us to see her like this and we have all felt rather off-colour in sympathy (nothing real, just aches and queasiness). There's nothing that a good nights' sleep won't solve!
Being more positive, Rachel's chest x-ray showed that her lungs are working well even without the ventilator; this is a good step towards her getting the trachy tube removed. She's under orders to do a proper cough at least twice an hour and she obeys this to the minute. We're longing to hear her voice after all this time. Rach managed to sit in her recliner chair for 4 hours today - a new world record (tell the Guiness people, somebody).
We did the Christmas food shop at Tesco - including a turkey crown - despite having to battle the combined hordes of Wythenshawe shoppers. We're probably emotionally rather weak, it seemed like a real, battle! Then Caroline and I registered with a local doctor - just in case..... tomorrow e go in search of an inflatable neck pillow for Rach, we'll probably have to go to the airport to get one.
Rach has had another relatively busy day. She didn't get much sleep as she was on the ventilator for a while through the night. The doctors also wanted to do a bronchoscopy today which she was a bit nervous about. She was sedated for that and the doctors could check out the lung that collapsed to see how it was doing. They also did a chest xray to get more information. On the xray the lung is looking quite well inflated. The doctors have decided to put her back on the ventilator for a few hours tonight and then a few more hours in the morning to make sure the lung is getting well inflated. They will then repeat the xray tomorrow when she is just wearing the trachy mask (no pressure support) to check that the lung is still inflating well. Fingers crossed this will be the case.
Rach was briefly sedated once more while they did the bronch so visits have been restricted but we did get longer with her this evening which was lovely. The last few days she has been so tired that we have to ring ahead and often she is doesn't want visits. It is really hard for us to get used to not seeing her so much but we know that she is working so hard that she has more than earned her rest. It does also make the chances we get to have a longer visit so very precious. We left her set up to watch Harry Potter on TV tonight - hopefully this will be a good distraction whilst she's on the ventilator.
She has once more proved what an absolute sweetheart she is tonight by giving Lawson a note that she has written for him to read when he's feeling sad. I can't believe she's still looking after everyone else so well.
So we have reached 6 weeks. What a long time. We are starting to feel like CTCCU old hands now. I regularly teach people to use the coffee machine and explain to worried looking people that waiting for a while doesn't mean something terrible has happened - just everything takes ages in intensive care. I like to think that we can be a friendly face for newcomers like so many were for us. I especially like to reassure them that their relative are in the right place and that the care here is second to none. We can't say this enough.
Thank you again for all your support and messages.
Rachel's mood is still a bit down. She's in some pain from the lines and tubes but the good news is that she's had another removed which had been seeping. This eliminates another potential site for infection.
She's refused visitors (us included) on the basis that she's been far too tired. Bless her, everyday she's being pushed and worked hard as she continues to move towards walking. Today the physios have had her standing again which is excellent and she's managed to get herself back into her bed without the need for the winch. We did manage to see her for a few minutes at the end of the day at her request.
She's also been moved onto eating foods! I asked her what she thought of the menu (very dense lemon flavoured mulch, curry, toast, tomato soup) and she didn't seem keen. She did choose to have tomato soup and toast but didn't manage to keep it down however we should remember that her stomach has not had anything in it for almost 6 weeks.
Hoping her mood is better tomorrow and that she manages to keep food down.
A quieter day today, starting off with muted smiles (wait a minute, this sounds like a weather forecast...). Rachel was still processing the information she got yesterday and quite muted, though with a few small smiles on her strained face. Nurse Katie decided it would be nice for Rach to have a pamper day, so planned to wash her hair - but had to postpone it when the physios came in early. They got Rachel standing on her own, though this took all her energy and she had to be 'winched' back into bed. Then when the physio left Rachel saw the psychologist, who gave her some good pointers on living for today, acknowledging anger and sadness but then moving on via a favourite scent/flower/experience/place.
Unfortunately, Rach then developed a migraine and had to cancel the rest of her appointments for the day; she slept through this afternoon. We understand that she is now awake and recovered enough to have her hair washed tonight.
The last two days have been really hard for us all; we're hoping for a quiet night with good sleep before the challenges of tomorrow.
This morning Rach was told the results of yesterday's tests and the three possible options for moving forward were discussed again. She has been told this previously but I think this is the perhaps the first time she has really started to take it in. Luckily my mum and dad went to see her shortly afterwards so that she could have a chance to react to what she had been told. She was very upset and angry. Whilst this is part of the process of her coming to terms with this situation it is hard for us all to deal with. It is good she is starting to understand what is happening but how we wish she didn't have to deal with it all.
Over the rest of the day the physios came and Rach has progressed to sitting a chair for a while. The SALT team came again who assess her swallow and plan moving forwards with eating and speaking. They have given the go ahead for her to try some 'food'. The nurse was trying to persuade her to try this in the afternoon but I think with everything else that had happened she was worn out and not very interested.
The other thing that was planned for today was to remove some of her chest drains. Unfortunately when they did this one of her lungs collapsed. This has now been rectified and is ok but was an additional hurdle we wish Rach hadn't had on an already challenging day. Although they could do this with a local anaesthetic she requested a general and they agreed. The nurse rang and said when she woke up she smiled when they told her it was all done.
It has been a hard couple of days and I would ask that you keep on praying for Rach, for strength and for her to get the right support to help her come to terms with everything. In some ways I think she needs this more than ever.
Rach has had a very busy day today which has mainly centred around a fresh assessment of her heart. This consisted of a transoesophageal echo and a brief period of time with limited bivad support as the pumps were turned down. In addition to this, she was temporarily sedated, was put back on some assistance with her breathing which has now been withdrawn and further physio to prepare her for standing tomorrow.
Following her tests, we had the opportunity to meet with the surgical team to review her progress and get an update on her long term prognosis.
It's important to state at this point that Rachel's case is exceptionally rare and DOES NOT reflect the typical experience of those undergoing heart valve surgery. Her family and I thought it was very important to state this as we don't want to cause any undue concern to those of you who are about to undergo surgery.
Her right ventricle is looking quite strong and stands a good chance of requiring no long-term support. This means that she is more likely to be able to receive an LVAD implant if necessary as support for the right ventricle can probably be withdrawn. Her left ventricle however has not improved and currently has lost 2/3 of it's function. This is not to say that things couldn't change but it is disappointing news and a blow for the chances of full recovery without further intervention. She is also having blood analysed to see if it contains any antibodies which would complicate or prevent a transplant if necessary.
Whilst it's good news that the surgeons have not ruled out recovery and are currently planning for all outcomes, we cannot take for granted that an LVAD or transplant would definitely be possible. Her infections are what complicate this.
Even when her infections are cleared up, this does not mean that they are completely removed from the body. Much like a cold sore virus which flares up when you become stressed or tired, so too could her infections. This is particularly important given that she will be living with immunosuppressant drugs if the LVAD/transplant options are selected. As the name suggests, these drugs deliberately weaken the patient's immune system in order to prevent organ rejection and so would leave Rach with a potentially high risk of repeat infection which could make both strategies unsuccessful.
No decisions will be taken on what to do for at least another 2 weeks and even then, she will be reassessed and could remain on the bivad for even longer to buy more time.
The good news is that the surgeons would like to remove the tracheostomy tube as early as possible to remove another potential source of infection. Rachel's mood is great (she doesn't yet know the full extent of what may happen) and she's looking better every day despite her heart issues. The physio is going to be getting her out of bed tomorrow for the first time with a view over the next few days to start her walking. She has been upgraded from taking sips to having full drinks of water and is overjoyed with this.
We feel as though today has been another reality check for us all. We've had a lot of little positives over recent days but today have been reminded that despite this, she is critically ill. All three options are very high risk as they all involve further surgery and come with a list of complications. We're reassured though by the skill and experience of the team at Wythenshawe and trust entirely in their ability to make the right call.
A dad update for yesterday...
Rachel is doing well; her kidneys continue to work unaided - I think it's 3 days now since the machine was disconnected - and the docs think this a very positive sign that they are getting back to full working order. The infection markers are reducing again. Rach managed to do her physio today and even sat on the end of the bed without going dizzy. The pump supporting her right ventricle was turned down a little without any ill effect and - all being well - will be turned down a little more tomorrow.
On the minus side of the equation, Rach has so far been unable to tolerate the speech valve so remains mute; suggesting that the muscles in her throat are very weak and will need work. She's bleeding a little from all her lines, this is caused by the blood thinners needed to prevent clots when the pumps are cycling her blood. Rach is quite subdued, I think she's begun to appreciate the enormity of where she is and the uphill climb ahead - she asked us earlier 'will I get better?' - I guess that when she hears people planning to reduce the flow on the machine keeping her alive it's fairly natural to fear the worst!
The best news for Rach - she's been allowed a few sips of water; this seems like the best present anyone could give her.
I think I am starting to understand why the doctors and nurses keep telling us to look at long term trends with Rach. It’s amazing how different she can be even from one visit to the next, never mind one day to the next.
Her infection markers were back up this morning which they thought might be caused by another of her lines which needed removing. I really hope this is the case and they will go down and keep going down this time. When I saw her early afternoon she was very tired, having not slept well. She keeps apologising that she’s not up to much when we have visits like that – she is so sweet.
Which reminds me – I asked her if she wanted to ‘say’ anything on the journal. She thought for a while and then said ‘thank you’, followed by explaining that when she has some energy she is now able to read text messages on her phone. She can’t reply at the moment though as she still needs to build up strength in her hands and she wanted me to make that clear so that no one thinks they’re being ignored! Please bear in mind that she's still catching up with everything that has happened whilst she's been asleep (we're slowly explaining more) but keep encouraging her and let her know what you've been up to!
When I went to see her this evening she looked better, more rested and comfortable. The physio was really happy with her today as she was able to sit on the edge of her bed unsupported – they were very impressed she managed this. She said it made her feel very dizzy which is normal after so long lying down and is also due to her blood pressure not being normal due to the bivad support.
At the moment her kidneys are holding their own – please cross everything that this trend continues.
Once again though it seems that the highlight of the day was drink related! She was delighted to tell us that she was allowed a bit of orange juice. She can’t swallow it as her muscles are too weak but was allowed to swill it around like mouthwash and in Rach’s words (via lipreading).... ‘IT WAS AMAZING!’
Lots of love to all and thanks again for sharing this journey with us and for all of the messages,
Rach is doing a bit better today. The infection markers have settled down a little and the doctors think that there was perhaps some infection starting with the line that was removed yesterday. Thankfully now it has been removed they have gone down a bit again.
Rach is struggling with really wanting a drink, a common side effect of a trachy. The nurses give her little swabs with water on so she can moisten her mouth but I don't think it's the same as a cup of tea!
Her nurse this morning has put a new table right next to rach’s bed with her radio, phone and other bits all within her reach. Rach is able to pick up and use stuff more and more each day, although she is finding her right hand stronger than her left – as she is left handed this is making things a bit more challenging. It’s great to see the progress though.
It’s five weeks today since Rach went into hospital in Sheffield. Although we had to contend with the trachy being required this week, we have seen a lot of progress in Rach’s movement and in how alert she is. It’s lovely to talk with her and be able to be a bit more involved in helping out – moving pillows and getting her things, and trying hard to make her smile! She is working so hard and proving exactly what a tough cookie she is.
A few people asked about an address for posting cards. The best place to send them is to the flat. The postbox is only little but cards will get through fine. The address is below:
We will happily act as postmen and deliver anything to Rach that comes here. We've been allowed to stick up some cards and a few christmas decorations on the windows that are in front of her so she has them to cheer her day.
We're having an early finish tonight as Rachel is tired after a day full of physiotherapy and lipreading. She is really doing well and seems bright and responsive; she opened her first card today and read another one without help (incidentally, thank you from Rach for all the cards you've sent her). Now that she has some movement returning she is able to work her Tv control, pull her pillow down and her sheets up - and wriggle her legs into her favourite sleeping position. It's a joy to see her smile.
The lines supplying Rach's kidney support from the filter machine had been in as long as permitted, so the nurses gave Rach a quick top-up on the machine and then removed the lines completely. We now want her kidneys to function without support; if they don't work well, a new set of tubes will have to be fitted, with the resultant extra scarring. Poor girl, thank goodness she had previously decided that she wouldn't worry about scars so long as she was well.
The doctors are a little concerned that the infection 'markers' - which they monitor daily - have risen again; this could mean a new infection or indicate that the old one is fighting back in some way. But that's the only blot on the landscape, thank God.
Vicki's already posted a really positive update but given that today has been such a great day I wanted to share my own thoughts as well as the details of the meeting her mum (Caroline) and I had with Rachel's new clinical psychologist.
I'm over the moon with the change in how she's doing! Whilst difficult at first, we're finding that with some persistence from Rach, she can get across 75% of what she wants to say to us. Can you believe that the first things she wanted to check was whether we could put Harry Potter on and was her mum ok!? What a sweet heart! This comforted us all no end as it reassured us that her immediate concerns were not with things like pain or confusion and also because it shows us that she's not impaired.
She mouthed to me that she missed me - I can't begin to explain how much I cherished this and telling her how much she meant to me.
We met with the transplant team's psychologist, a lovely and warm lady called Zoey who will now play an active role in assisting with her emotional recovery. She said that whilst the surgeons are absolutely committed to helping Rachel physically, often their focus is too mechanical. Whilst our perception has been that the team has been absolutely outstanding thus far, I agreed with her point and am very glad to have her on board. Caroline and I explained how she'd been coming to terms with needing heart surgery and how we thought she could best help her. We explained what had happened since being admitted and the limits thus far of Rachel's knowledge of the situation. Zoey will now see rach once a week and continue her support as an outpatient if rach would like this.
Her movement is coming on leaps and bounds and she could give my hand a nice squeeze earlier so we're hoping she'll be able to write soon.
I forgot to mention yesterday that the doctors are going to assess her breathing and movement over the next 10-14 days before evaluating her heart function to determine what action is required. These are still the outcomes of recovery, implant or transplant although when swapping the circuit the left ventricle still appeared weak. We're hoping that her positive mood and new-found sense of control are indicative of a surge in improvements which will carry on to her heart.
Apologies for the lack of update yesterday - everything is fine though. If anything we were a little overexcited because we could communicate a lot better with Rach yesterday.
I went to see Rach yesterday, early afternoon, and was told I would have to wait as they needed to switch the Bivad circuit over. 2 mins later the nurse came back and said Rach seemed a bit distressed and wanted to see me. I went to see her and was trying to reassure her about the procedure but she kept on gesturing..... eventually I told her that I had brought Harry Potter audiobook in as requested. Cue instant smile and relaxed Rach. I think I'm going to lead with Harry Potter from now on! It made me feel a lot better that once again rather than being worried about the procedure she was worried about Harry - I hope this trend continues!
I bumped into Jim Barnard on my way out and had a quick chat with him. He is pretty happy with Rach's general progress but would like to see her kidneys improve as that gives her more options moving forward.
After a long wait in the waiting room (aka my second home) I rang through to the nurses who told me that the switch over had gone fine and I could come see Rach when her dressings were done. I knew they'd given her a bit of sedation but when I did finally get through she was wide awake which was lovely. Comunication has been much easier today - between the use of a new sheet with different pictures (*many* thanks to Kerry for suggesting that and to Ian for help with printing) and better lip reading and her hands being stronger for gestures.
Whilst I was with Rach I could tell her that her friend Sammy was coming that evening. Sammy had had a meeting in Manchester that hadn't gone so well and so I asked Rach if she could try and cheer Sammy up a bit. Well she took it very seriously! I practically had to peel Sammy off the ceiling she was so happy after seeing Rach. Rach showed off the new and improved movement in her arms and then had a conversation with Sammy- a real conversation, helped by the fact Sammy is pretty adept at lip reading.
I can't explain what it's like to talk to Rach again and have her respond. Even silly things like telling us she was jealous about a drink we'd had. She had a tele in her room again and with a bit of help could manage to work the remote. Even typing this I am struggling to hold in tears. My little sis is returning so much more every day and it gladdens my heart.
She has a lot of work to do over the coming days and she is finding it hard at times and having moments of being upset - mostly when she is tired. Please keep praying for her, for all it is lovely to see her returning her infection, kidneys and heart all need to improve still. But if you fancy a jig around a room (as my Dad previously suggested) then I think yesterday warranted one.
I thought I'd do an earlier update today as I keep running out of energy by the time we've done the evening visit etc.
Although yesterday was a difficult day, so far the tracheostomy seems to be doing its job well. Rach remains on a tiny bit of sedation but seems very calm. She has been doing some very productive coughing and finally some of the rubbish in her chest seems to be moving. I am hoping this will help her feel more comfortable and make her breathing easier.
She has been awake today for short spells and continues to nod/shake her head when we talk to her and I even got a little smile this morning. I also showed off my new hair cut (my hair was getting a little scary) and got an eyebrow raise which I'm interpreting as a positive response. It certainly wasn't a grimace! It's lovely to see her calm and she seems to be more comfortable whilst sleeping too.
Rach was going off for a routine scan this afternoon which meant disconnecting the kidney machine. They will leave it off and see how she goes once more without it.
In other news, Spencer the teddy took his duties of looking after Rach very seriously and personally cleaned up some oil that leaked out of part of one of the machines (Gabi - I think he may still have been trying to wear black on your behalf!). This means that he has been rechristened Captain Spencer and has had to be retired from active duty with Rach and come to stay with me. I have got some new Spencer cadets however and the first cadet went back in last night so Rach has clean cuddle company round the clock. I've attached a photo if anyone's interested. It may seem silly to have a teddy but I like to think it's a comfort to her to have something non-medical in her room.
We are all a little tired and battered by events but continue to hope that although yesterday may have been one step back, hopefully the next few days will bring a few forwards.
Thank you again for all the support. Sometimes thank you doesn't seem like enough of a word - the support really does mean the world to us and to Rach.
Late last night, it was decided that due to the increasing difficulty Rach was having with her breathing she was to be reintubated with a view to performing a tracheotomy today. As a result, she has been re-sedated, has undergone another surgery and a tracheostomy tube is now in place. This gives the doctors access deep into her lungs to allow them to clear the build-up which is affecting their function as a result of her continued infection.
We've been told that the tracheostomy tube is very often the last piece of equipment to be removed from a patient once in place meaning that we will not hear her voice again for quite some time.
Despite acknowledging that this really is the best thing for Rach and conscious also that real effort has been made by the nursing team to avoid this outcome, it is absolutely devastating to see that her efforts have gone unrewarded. I find it especially cruel that this comes just as she's regained the fundamental ability to communicate again and experience some freedom from what I imagine to be an otherwise isolated and depersonalised state.
Vicki has a friend who helps people who can't otherwise communicate and has suggested the use of a picture/phrase board containing things like 'I'm too hot' or 'I want to rest'. We're going to ask the nurses about this tomorrow to see if this could work for Rach. I've also downloaded a basic painting app on my iPad which may help her write what she needs, wants and feels before she regains the dexterity necessary to use a pen.
In terms of everything else, the dialysis machine is back on for now but not a long-term issue and her heart function is still fairly unknown as the more pressing issues of breathing etc. are addressed.
So a difficult day but not one whose challenges we can't meet.
Rachel has continued to work with the physio today - for over an hour this morning followed by other sessions. She is very weak and minor movements are celebrated as small steps forward. She has also been able to whisper a few more words to Lawson. She has been on the kidney machine again and is breathing oxygen through a mask; the mask has been changed from an adult to a child model, as the adult model covered most of her face and was obviously designed for very large men.
Rachel is being encouraged to cough as much as possible to try to clear her lungs; so far this has not been sufficient and she has had to have a tube inserted via her nose to remove the accumulating gunk. Her condition is obviously being monitored but unless this improves she will need a trachy after all - this to give access to drain her lungs. We so hope this won't be necessary as it would probably mean that Rach would lose her new-found ability to speak to us.
We went to visit Rach tonight and the nurse advised us not to bother - Rach is worn out and needs to sleep. She's also got a higher temperature, which may mean a new infection, according to the nurse. It's been an up and down day - again!
So it's back to me today and to be totally honest I'm not the best with words, numbers are more my style so I thought I'd summarise the numbers for you all...
Time in hospital - 4 weeks
Operations in that time - 6
Number of ECMO centres in the country - 5
Number of ECMO beds in Manchester - 3
Was there one available when needed - Yes
Number of times Rach has beaten 50/50 odds - at least twice already
Chances of Rach avoiding Tracheotomy - 5%
Did Rach avoid it - Yes so far!
Number of infusions (different drugs) at the peak - 8
Number of infusions today - 1
(The infusions are on top of antibiotics and pain relief)
Amount of sedation being given now - 0
Number of doctors and nurses helping Rach move forward- We have had up to 12 doctors discussing her case on rounds; ensuring she has the best care.
We must have met more than 20 nurses just on the day shift, and she has had up to 2 nurses just for her care at times. Physio visits twice a day. I can't explain how these people have, almost without exception, been both incredibly skilled and caring.
Physio completed today - 100% (much improved after a difficult day yesterday when Rach refused physio)
Number of smiles today - many (to the great joy of the family!)
Number of words spoken - a few in a very small voice, a tiny whisper, but what a gift to hear them
Pride of big sister at the progress and determination of Rach - Infinite!
It has been a good day and Rach has been much more positive and determined once more which has been great to see. I know there is a long journey ahead but I like to remind myself of the numbers to see how far she has come to date.
Thank you again to everyone for your support and messages. If anyone is wanting to do something practical to help then please consider giving blood, apparently stocks are the lowest at this time of year. Rach has benefitted from a number of infusions already and I can't say how important it is. And if you can't for any reason, don't worry, just keep hoping and praying - I can't say how helpful that is too!
Seems very strange to be writing one of these after having awaited and read so many...
For those of you who don't know me, my name is Sammy and Rach is my best friend. (I won't claim I'm her's - she's far too popular for that!)
I've been given the privilege of updating the blog today - and I say privilege for a very good reason...
Rach was successfully extubated today! It seems that yesterday's 'definitely' was a real definitely and, this morning, out the tube came!
Rach's Mum and Dad said the anaesthetist was incredibly careful with her as they don't seem to extubate awake patients that often. She's managed so incredibly well with the breathing tube so hopefully now her hard work will pay off and she won't need a trachy.
She has remained off dialysis today too which is great. She probably will need to go back on but, as Lawson pointed out, the periods she's off are getting longer and longer so we can only hope that this is all heading in the right direction.
I got to spend a little bit of time with Rach today while she was awake and it was wonderful. She was obviously still tired and understandably uncomfortable but to get a little nod, shake, look of disapproval and, what may well have been a smile from her felt so special. As nice as it was to spend time with her when she was sleeping, nothing beats a look of disgust over the discussion of jazz from your best mate!
She's come so far but sitting in that room makes you realise how terribly far is still to go. She's doing so incredibly well though - i've never been prouder of her. I told her how many people were sending messages and thoughts and prayers and she nodded so we obviously need to continue!
Massive love and hugs to everyone, Sammy x
Hi all, going to pinch my dads dads update again today...
The doctors did another echo on Rachel's heart this morning and found that the improvement detected yesterday was not as significant as first thought; it's still better than nothing, but only worthy of half a glass of wine (half full, of course!) or a 20 second jig in the living room. The plan now is to give Rach up to another 7 weeks on the BIvad to see if the improvement continues sufficiently; then the decision on her future will have to be made (recovery, transplant, temporary internal pump leading to recovery or transplant - all still options). So we will have to 'hurry up and wait' some more.
On the more positive side, Rach has been breathing really well and is almost at the point of managing unassisted; when she's conscious she is outperforming her parents, it's just when she's asleep that her breathing becomes very shallow. This afternoon, though, she slept and breathed well simultaneously - I know, women can multitask better than men - the Prof says that they will definitely extubate her tomorrow (we've found that 'definitely' is a synonym which civil servants would love, meaning 'if all goes well and there are no further complications then possibly, but don't hold me to it')
We just saw Rach and she is very sleepy still. I find it so hard to see her struggling along so uncomplainingly with all the tubes and tiredness - and then have to tell her 'just another day, sweetheart' when I don't even believe it myself. I think she's a little down today - when we asked her if she'd like a friend to visit she just shrugged, as much as to say 'I don't care' then closed her eyes again. The Bible says that 'hope deferred makes the heart sick' - I really pray that there will be progress and that she will cope without the tube tomorrow.
I don't want to give the idea that we're all doom and gloom today - far from it - the overall trend continues to be positive; it's just that over time we are dealing with daily disappointments and daily joys, if you're praying for us you should know the reality of the downs as well as the ups.
As Pollyanna said, 'tomorrow is a new day' - we pray that you will have a good one!
Rach is still doing well and breathing fine on the ventilator. She had a good spell on the drager (stepping stone machine to extubation) and wasn't too tired which is great.
We've not had the full story on this but we understand that having looked at the echo results, the doctors think the left side of her heart may have improved. Until we speak with them properly, it's hard to know by how much or whether this is too early to tell but it's exciting news nonetheless.
I'm slowly explaining what's happened to her so that it doesn't come as one huge shock. At this stage we're not going into uneccessary detail but reiterating that she's been in hospital for a long time, that her heart needs to rest and that she's doing extremely well.
She was gesturing earlier when I was with her which was difficult as I couldn't grasp what she was trying to say. This was frustrating but it warmed my heart when we both gave up and she smiled and rolled her eyes. It's so nice to be able to interact more with her.
I can't believe I forgot the important news from yesterday - Professor Yonan (he's a big cheese) was explaining what was happening with her care to Rach and managed to elicit a big smile from her. It was lovely to see. He's a great guy and takes the time to talk to her on rounds as well as discussing her case with the other doctors.
Today has been a quiet day which we are learning is a good day in intensive care. Because the kidney machine was only put back on yesterday evening it needed more time to work so nothing much has been changed today - including no trachy. Good stuff.
Tomorrow the plan is to put Rach back on the Drager and see how she her breathing goes. She is much more awake again now and nodding and shaking her head to questions which is nice. Hopefully that will continue, although it would be lovely if the tube did disappear as she wants to be asking questions more as she wakes up.
Again, thank you for all your messages and for all the support. I keep telling Rach about it in her more awake moments and am sure it helps.
Just a quick update for today. In the end they have left rach without a trachy for today and there is still talk of possible removal of the tube. I think we are learning that you never really know what is happening until it happens as the situation is continually being assessed.
Infection markers are down and the kidney machine returns tonight. The return of the kidney machine will hopefully help remove the lingering sedation in her system as she is still very drowsy.
Basically a good day and hoping for more tomorrow.
We started out the day waiting for the senior doctors to assess Rach's breathing. They did a series of tests and decided that as she was tolerating the tube they would try taking her off the ventilator, but keeping the tube in and switching to something called a Drager. This gives less support than the ventilator and allowed them to see how she might manage if they did extubate. She managed 10 hours on the Drager but became very tired and so is back on the ventilator for the night. She is trying so hard but it is now likely that a tracheotomy will be required so that a more gradual process of weaning off the ventilator can be done. She has been on a ventilator for 3 weeks so it would have been a long shot to come straight off it. The tracheotomy will mean that she cannot talk, to start with at least, but we might be able to communicate if we can develop our lip reading skills. She will likely have a dry mouth and will have to work to strengthen her swallow to build up to eating or drinking.
She is still off the kidney machine but it will likely reappear as her levels are still not quite right. Her infection markers have come down a little and her chest xray is slightly improved which is a step in the right direction.
She is more alert and movement is returning. The nurses could hardly turn her neck a few days ago as it was so stiff and today she is able to move it a little on her own.
Honestly though, for all it has essentially been a good day, I have found the trachy news a bit of a blow. Lawson described it as cruel that she should have worked so hard today and still have another challenge to face. I wish we could do some of the work for her, and I wish I could protect her from the explanation we will have to give her as she awakens. She is my little sister and I know she is tough and strong and can do this... but I wish she didn't have to.
Tomorrow is a new day and I will start over and walk into her room with a smile and try and be as strong as she is being though. Can't have the little sister outdoing the big one!
Rach has had a good day - I think the nurses are very pleased with her. It's been nice that the nurses looking after her the last couple of days also looked after her near the start of her stay. They both seemed as happy with her progress as we are which is encouraging.
The kidney machine is off again at the moment. We'd love to say a permanent goodbye to it but we will have to see how she gets on. She produced plenty of wee the last time but not quite the right quality. Hopefully this time we will see quality and quantity (...and yes I can't believe I am still going on about wee).
Her drugs have been reduced considerably, no sedation now and just pain relief and antibiotics remain. She has been asleep a lot today but seems to be resting easy, and it is a comfort to me that the nurses can ask her now if she is in pain and act accordingly if required.
The plan at the moment is to remove the breathing tube tomorrow. There is no guarantee that this will work, often they just go straight to a tracheotomy and wean the patient slowly off the ventilator using that. It is a good sign that they want to try removing it with Rach and see how she does on her own. Again youth is on her side; she is responding to instructions and needs little support from the ventilator currently which is good. We will just have to wait and hope it is successful, and know that although we don't love Plan B (tracheotomy), it is still a good plan and would be progress.
Please continue to pray and hope for all the the same things, kidneys, infection, heart and now also for a successful removal of intubation. She has stayed remarkably calm the last few days, please also keep praying for the calm to continue as that will help her with her next challenges considerably. I am so proud of how she is coping with everything, her only complaint has been my choice of radio station - all 6 I tried were met with grimaces - I must try harder!!
We have all had a restful day, knowing she is peaceful and have had some fresh air. Hopefully this will put us in good stead to support her through whatever tomorrow brings.
As always, thank you for everyone's support, we are consistently amazed and strengthened by it.
Rach is more awake everyday as the sedation has now been removed which for us is amazing as we get to see the Rach we know coming back.
If Rachel strongly dislikes two things it's the Gilles Peterson radio show and jazz music. I say this because we've got a little dab radio positioned by her bedside to give her something to listen to other than beeps and whirrs and as I tuned it to radio 6, it fell upon the Gilles Peterson radio show playing jazz. I was genuinely thrilled that her response was to shake her head and frown! This is who I love.
That said, she is still very drowsy and unaware fully of what's happened. We still have this challenge to face.
Her infection markers are pretty unchanged for now but certainly now worse and she's tolerating the breathing tube well which bodes well for avoiding the need for a tracheostomy.
She's receiving lots of physio as she's not moved in almost three weeks. Because of this, she may need splints but this is not a concern, more part of her aftercare.
Her heart function and whether this will recover is yet unknown. Waking her up does allow the doctors to gauge this more effectively as well as assessing her for other treatment options such as an implant or transplant if necessary.
Otherwise, everything is nice and stable which is excellent. She's come a very long way in the past three weeks and you can see a fight in her. She looks confused but determined and still so beautiful.
Vicki mentioned there are over 160 people following her journal and wishing her well. That is absolutely tremendous and I'm sure that Rach looks forward to bringing positivity, prayers and help to anyone she can share experiences with as soon as she's able to.
Im going to pinch my dads update again for today...
Another topsy-turvy, emotionally-challenging day... it's becoming the norm for us. Rachel is starting to emerge from her long sleep and has opened her eyes today; her eyes followed a nurse round the room; she was able to give a little nod 'yes' and shake her head for 'no' and responded to simple instructions like 'please stop biting' - this after she had bitten the nurse trying to adjust her breathing tubes. She isn't anywhere near full consciousness and won't remember any of these experiences, but she's looking more like our adorably grumpy daughter again.
And she has lots of reasons for grumpiness; in some way she is aware of the various things the nurses and physio are doing and registers pain and discomfort - so her challenge is in many ways just beginning. We have such a mixture of feelings about this - so glad to see her as herself instead of the ethereal, angelic creature she has been under sedation - our stomachs churning with every uncomfortable treatment - cheering Rach on as she tackles such big obstacles - longing for her to rest - wanting her to receive love and healing - trying not to think too far ahead (ie to tomorrow).
Rach has coped without the kidney machine all day today and has had some kidney function, but her potassium levels have risen again and she will go back on the machine tonight (just for the night probably). Her level of infection has increased and a new cocktail of antibiotics is being tried - horrible for us to think of her coping with pneumonia as well as all the other issues.
In general the trend is positive; but I wanted to share a little of our rollercoaster to encourage you to keep praying for us. We have been so touched by the letters and emails you have sent, they have been the bright spots in otherwise rather dark days; thank you so much for sharing this journey with us.
The calm has returned today which is a relief. The sedation that Rach has been on can have withdrawal effects and the doctors think that this was behind some of the problems she was having. They increased the sedation and are now reducing it again slowly with the help of different sedatives and for now she seems much more peaceful.
They are trying her off the kidney machine again to see how she gets on.... I've been sat at her bedside for the last hour or so trying to persuade her to wee as much as possible. It's funny what becomes important! We will just have to wait and see how she gets on and if it doesn't work this time they will try again in a bit.
Her infection markers for the pneumonia are coming down slightly but the bug is still present. It's baby steps once more.
We spoke to Jim Barnard, the main surgeon looking after her, this morning again. He is one of the calmest people I've met which is a great quality for a person you need to entrust your little sister's heart to. He was reassuring but did tell us it is likely to be weeks and months, rather than days and weeks, that we will be waiting to see how her heart gets on. The main focus for him currently is to get her awake again and to know that neurologically she is intact. He also advised us again that one of the risks she faces is of blood clots forming.
So whilst it has been a better day, and a much happier one to be at her bedside, she still has a long mountain to climb.
I just wanted to say a big thank you too all the heart community on this site. I know you all supported Rach before the surgery and we really value your messages, and those of your family members too. All the messages from our friends and family are amazing and help when we have the less good days. It is also really lovely to have people to share the good moments with too.
Sorry for the pause, it's amazing how the time disappears in a day.
It's hard to say exactly how rach is. The sedation was completely reduced but her blood pressure and breathing went a bit too high so they have put her back in a little sedation for the moment. There hasn't been much change with her kidneys, we would love to see some improvement there. They are still working on the infection but we're not likely to know how that's going for a few days.
She has been moving a little more which is nice too.
For the moment thats about it, no major progress but fairly stable. This feels like a different stage for the family where even more patience is required.
Thanks again for all the lovely messages,
Vicki x x
My dad has done an email update so I thought I'd pinch that for today, love Vicki x x
Rachel has remained stable throughout today and her sedation is being reduced slowly. She has opened her eyes on a number of occasions today, not least when the physio was preparing to give her a second workout of the day - she may not be conscious but she definitely gave him a warning look! The infection is proving a challenge to the microbiologists and - so far - they haven't found a suitable treatment for it; this isn't seen as a major problem (compared to the others) but it does mean that Rachel doesn't look as well as she did - she has a high temperature and is shivering.
The consultant tells us that there is still a chance of 100% recovery; needless to say, we're longing and praying for this to happen. Rachel has already beaten a number of 50:50 chances and she can be a tenacious and determined young lady - I don't think there will be any lack of effort on her part. We need to be strong for her. Fatigue is a problem, we need to manage our time and energy better, though it's difficult (well-nigh impossible) to go off duty.
We've always loved Rach, but never more than in these past days, when she has seemed infinitely precious to us and we've treasured the moments we have with her. It's good to be able to tell her all that we feel before she regains consciousness and really helps us to understand how special she is. I hope we'll be able to tell her the same things when she wakes up.
Vicki said earlier that she wouldn't have backed any of us to cope with the traumas of the last fortnight - but with your help, we have done. Please stay with us on the journey ahead, we need you.
I can't believe it was two weeks ago today that we had our family lunch together in Sheffield and took rach to get settled in before her op on the Monday. It is so hard to try and absorb the events that have followed.
Once again I don't believe rach or us would have come this far without all the love and support of everyone on this journal and all those who have texted, emailed and come and helped practically. I'm sorry we can't respond to everyone but energy and words are saved for rach at present- for chattering away to her and loving her and willing her on.
She has had a good day. I think she is settling into her new room, away from the ward due to her chest infection (pneumonia). The nurses are happy with her progress and she definitely seems more settled after some small fluctuations following surgery. They are very slowly reducing her sedation and we are starting to see her eyes flickering a bit again.
She has a way to go though, and we wait and hope that her kidneys will recover, that the right antibiotics will see off the pneumonia, and that throughout all of this her heart is benefitting from a rest and recovery is beginning.
At this point I think the overwhelming thought is how much she is missed both by us and others and how much she brings to our lives. She can always be relied on to have a completely original take on things and I miss that. I'm glad that although I've known her all her life she consistently surprises me.
Today's surgery was successful taking around 2 hours. After this, we had the opportunity to catch up with one of the doctors.
Rachel is facing three problems: her left ventricle is very weak, possibly stunned (recoverable), possibly permanently damaged. We won't know for sure how much permanent damage is done without waiting to see what happens to it's function over time on the bivad. The second problem is an infection she's picked up in her chest. This is a particularly resistant infection although the doctor seemed confident this could be tackled. Thirdly, her kidneys are in a state of acute failure. Despite sounding severe, we're assured they should recover in time.
If she continues to remain stable overnight, her sedation will be weaned and she should wake up fairly quickly. This precedes her breathing tube being removed (all being well we can avoid a tracheostomy) and we'll finally be able to speak to her again. As before, this is going to be a huge moment for Rach when she's made aware of all this but she'll be in a much better position to accelerate her recovery.
Her ECG is now looking pretty normal with all the doctors and nurses pleased with it. Even though my faith in seeing this change may be misplaced (I am not medically trained at all!) I still look at this as a great source of hope and believe however wrongly / rightly that this indicates an improvement in her condition.
I've never been without her for this long so really miss her. I remind myself of what she's like outside of a hospital by listening to her favourite songs and have loved having her friends come to visit who talk about stories involving Rach.
Vicki and I will update tomorrow with news and hope to be able to share everyone's thoughts and support with her when she wakes up.
Rach has had another stable night. This is just a quick update to let you know that she went back into surgery at 11am, hopefully to close her sternum if they are happy with everything. We'll update later to let you know how she gets on.
I came to see rach this morning and she has had a stable night, in nurse Laura's words they were very pleased with her. She is back to looking peaceful, although not quite as asleep as I first thought. They are deliberately keeping her sedation as light as possible and when I went back in after her chest X-ray I found her looking right back at me. She stayed very calm and sleepy but had a good look around and I talked to her and stroked her hair and told her she could have a lie in today. I think she was waiting for a good night from my mum though who had just turned up too and got to see her as well. They have upped her sedation a little just to ensure she's comfortable and she seems to be sleeping once more. What a lovely morning- news of a stable night and a peek at her beautiful eyes.
She will be going back into surgery sometime today or tomorrow (op no.6!) to close up her chest but we are happy to be patient and enjoy her stable ness for now.
Happy to have some good news for you all today, I think all the cheering on everyone is doing must be helping.
As we have been warned things are always going to be up and down. Rach did not seem so good yesterday evening and we got a call at 11pm to say that they were not happy with her blood pressure and the flows on the bi-vad and were going to take her into theatre again to see if there was any issues. They took her in and drained some fluid from her chest which had accumulated and since they brought her out she has been relatively stable. Her sternum is open again and they will assess later when they want to take her back in to try and close that. This is a common issue due to the drugs that they have to put her on to keep her blood flowing through the pumps properly.
It's really hard to convey what a fragile line the doctors and nurses have to tread as everything has a side effect and a careful balance needs to be struck. However once again she has come through and we wait hour by hour to see how she goes.
I have a feeling that this is not a brilliant technical explanation but maybe we can update later when we talked properly to the surgeon- and had a nap!
I can't say it enough- please keep praying, keep hoping, and keep on sending messages.
Rach has had a good day so far. She is very slowly waking up; wriggling a little and opening her eyes occasionally. She is still mostly asleep but I think we are all happy for this to be a gradual process and enjoy seeing even little bits of movement. They have reduced the assistance they are giving her with her lungs but for the moment she stills needs the help of the ventilator. They tried to take her off the kidney machine but aren't happy she's ok on her own so she will go back on the machine for now.
She is being so well looked after, we really have been blown away by the care she has received from all the nurses and doctors. And I know we keep saying this but thank you for your messages of support and for cheering her on.
The plan for tomorrow is to stop the sedatives and wake Rachel up. This may happen quickly or slowly (everyone is different) but she will be drowsy for quite some time due to her having been under for over a week. She's been stable today after a good night so is in a good position to move onto this. The last of the ECMO has been withdrawn and she's now oxygenating her own blood.
A scan was performed on her legs as they were showing signs of pooling fluids although this is not concerning the nurses. She remains and will remain for now on bivad support to continue to allow both sides of her heart to recover. I asked the surgeon how her heart looked when he last operated and he cautiously said the right side looked to have strengthened and the left may have been slightly better which to us is excellent news. We're still on the road to recovery!
I'm worried about how she's going to cope with it all. She'll be expecting it to be last Monday with a better than new heart rather than in a position where she's having to fight much more but we're all going to keep strong for her and help her deal with this challenge.
My Auntie Karen has sent me some really interesting material about positive thinking and it's effects on the healing process which I can share with her. I've also exchanged emails with a few former lvad patients who have successfully recovered so she can speak to people with similar experiences as a source of advice and inspiration. This of course is in addition to the wonderful existing support network of friends, family and the heart-valve-surgery community.
So a big and challenging day for us all tomorrow but yet another move forwards.
With love to you all and thanks as ever for your prayers, thoughts and help. I'm just glad Rach will now be able to see for herself how incredible this support for her is.
Rach came out of surgery at about 1945. It went well and they have closed her chest and drained some blood from around it which has improved how the pumps are working. She is back looking her peaceful self and we very much hope she can have a good rest now and a stable night. Sorry for the slow update, we often have to wait a few hours before we can see her properly after surgery.
She has come so far but once again faces risks post surgery so we ask you to please be steadfast in your prayer and support.
I am so proud to have such a tough little sister, and one who is so kind and caring too.
Spencer the teddy is now doing the night shift and keeping her company. Time for some rest for me now.
Rach has had a stable night tonight which is Good and a relief for us all. We have just seen her this morning. They are hoping to take her back into surgery today to check on everything and if possible to close her sternum. They don't have a theatre slot confirmed but are hoping there may be one soon. These are all baby steps but we have had a lot of stable hours in a row and its easy to forget what a big deal that is at this stage.
Thank you again for your messages, there are such a variety and your love and affection for rach shines through all of them.
The nurses explained today that Rach had a rocky night but had stabilised by the time we came to visit. There was a calm atmosphere amongst those caring for her which was reassuring.
I was told not to pay too much attention to the various heart monitors but her ECG looked to me as though it was showing some different movements (which I took as a positive). Her liver is looking good as well which is
important to give her the best chance of recovery.
Following the advice of some of those following this journal, the nurses and other friends with similar experiences, I've started talking to Rach a lot more in the hope she may draw some strength from this. We're allowed to hold hands and I can comb her hair which I know she'll enjoy.
The plan is still to try and close the breast bone, hopefully wean her from bivad to lvad and then wake her up later next week.
I've read several journals which give examples of recovery from inotrope, ecmo and then bivad intervention which helps me know that it is possible for someone In Rachel's position to get through this.
I am keeping in mind that she is her own case, has a unique spirit and that there has been absolutely nothing typical about what has happened so far.
It's Rachel's dad, Peter. Rachel was in surgery for around 3 hours this morning and had two pumps attached to do the work of left and right ventricles, this takes over her circulation from the ECMO machine, which now only oxygenates her blood. This resolves the risk of her lungs failing.
She is still critically ill but has moved a short step from the knife edge she has been on for the last few days (seems like a lifetime). This op is not going to fix anything but is meant to bridge her to further treatment or recovery.
Rach is at risk of serious complications from the new devices - the surgeon quoted this as a 40% likelihood. Her heart is bruised and swollen and inactive on the left, with abnormal ECG. The plan is to let her stabilise again for a few days then reexamine her in surgery and close her breastbone, swelling permitting. If we get to that stage she will then be brought round slowly - over a few days - and we then have to wait again to see if recovery is possible - or implant of a pump, or transplant.
I know this sounds bleak but its actually another step forward - we've been warned that we are at the start of a very long road. When Rach is conscious she will need a lot of support from family and friends - much more than we are giving now. So those of you wonderful people who have offered to come and stand with us will be very welcome then.
To all in the mitral valve community - it seems clear that this situation has been caused by underlying heart condition. While it was triggered by valve surgery, it should not cause concern to anyone facing this in the near future.
Thank you again for your messages. prayers and kind thoughts - we value them more than I can say.
Rach is out of surgery ok. We will post a full update later. There is a high chance of bleeding in particular for next 24hrs so please don't stop praying just yet. But be glad she has managed another major surgery which is a good step.
Just a quick update to say that we were told yesterday that the operation could take up to six hours, and we often then wait a few hours after that before we can see her. So please do not worry if you do not hear any update until tonight or later. Instead please pray and hope for her excellent care to continue, for the right side of her heart to be strong, for there to be no complications and for all of the family to stay strong throughout.
Rachel has had another steady night for which we continue to be grateful. Lawson and I counted to the 24 hr mark yesterday but every hour is still critical and is good to see go by without incident.
We have just spoken with the doctor about what happens next. It is not sustainable for her to stay on the ecmo so she will have another surgery tomorrow morning to put her on a different system that buys her more time. Ideally they will put in this system just to support the left side of her heart which is the bit that is causing most concern. However they will do the same for the right side if it looks like it will struggle. The outcomes are better if it is just the left though so please pray this is the case.
As always there are risks associated with the surgery and she continues to be in a highly critical condition. Her organs have had a chance to recover a bit on the ecmo which is positive- and we have to remember the positives. She has come through so much already.
She still looks remarkably peaceful and I hope she is dreaming sweet dreams oblivious of what is going on.
We are all struggling to come to terms with everything and to know how to keep going. Thank you again for all the support, we couldn't manage without it.
There's been little change today which is actually very good news for us all. Rachel is still stable and certain aspects appear to be improving. Circulation to her foot is back to normal with it looking nice and healthy and liver function has improved although only one reading has been taken so far (a trend needs to be established to know for sure which requires more readings).
We're thrilled that no complications have manifested over the first 24hours of ECMO with blood count up instead of the usual down due to bleeding.
It is too early to determine whether the heart itself will recover. The x-rays from today show no change but it's positive to see her looking so well despite this.
None of this detracts from the severity of her condition. She remains critically ill. The ECMO practitioner explained how her heart beat was still very abnormal despite showing some ability to function. We get the feeling that recovery is not imminent.
I find it really strange to be so calm in her company and so distressed when I'm not by her bedside. To me, she still so beautiful and very peaceful - blissfully unaware of any of this. It's impossibly difficult to not be able to hug her or hear her speak.
With the nurse's guidance, we've started a diary which is kept by her bedside to record our thoughts but also any events. The purpose of this is to help Rach come to terms with what will undoubtedly be an incomprehensible situation when she awakes expecting it to be the morning after her surgery. We think this is a great idea and also allows us to express our feelings to her directly.
The plan from here may be to upgrade to a bi-ventricular method if ECMO in a few days in order to more effectively reduce the workload of the heart. This may or may not be necessary but we're glad for now that her body is receiving a much needed break without incident and free from large doses of drugs to stimulate the heart.
As with all previous messages, thank you so much for your support. You have no idea what this means to us all. Prayers, offers of help and other kind words are all incomprehensibly touching and a real source of hope and sustenance.
We will continue to update here and hope for more bits of good news tomorrow.
We have spoken with the doctors this morning and Rach has been fairly stable overnight. It is great there have not been any complications of the ecmo so far. However she does remain in an extremely critical condition and we are still thinking hour by hour. But she's here and fighting and for that we are immensely grateful.
Just to say thank you for all the emails, texts and posts on here. I'm sorry we can't reply to all but please know they really do sustain us when things are so hard.
It has been an incredibly difficult day. Rach has been transferred to Manchester and has had surgery to be put on the ecmo machine. However we got a major reality check earlier as her liver was failing without the ecmo and her circulation poor to extremities. The ecmo is very risky, chief risk being bleeding and we have been advised that the night should be taken on an hour by hour basis. Earlier we were told her chances were 50/50. It was like a physical blow to hear some of the things the doctors have said today.
However I am relying on her toughness and stubbornness that she has come this far. I can't explain how important she is to us so please keep praying and hoping.
Hi all, I'm going to pinch my dads email update for this as he's summed it all up fairly thoroughly...
We thought we'd update you on what's happening with Rachel; if there's too much information please ignore it but keep on praying.
It seems that when Rachel had extremely low blood pressure shortly after her op, her heart was not filling with fluid and responded by triggering a response similar to a heart attack. This has left some of her heart muscle inoperative - the surgeon described it as 'hibernating' and possibly scarred. There is a possibility that some of the muscle function will recover, but until it does she cannot sustain blood flow round her body without a number of devices and drugs.
She is still sedated and on a ventilator (looking lovely to her dad, she did have her eyebrows done specially for this) and is unconsciously clutching a teddy bear which one of the nurses has attached a drip to...... the staff are wonderful, caring and supportive, we can't praise them enough.
What next? If Rachel shows any signs of improvement - measured in blood flow - she will stay where she is and, over a period of days reduce her dependence on the drugs, pumps and ventilator. If she doesn't improve, it's likely she will be taken to Manchester and put on an ECMO machine, which does all the work of the heart until it recovers - or until other solutions can be found. In the last few hours her blood flow has increased slightly, but we face a long wait tonight to see if this continues.
We're really tired - we were called into the hospital at 4 am this morning - but coping OK so far (a few tears and long silences excepted).
It's such an understatement to say that we value your prayers; for me and Caroline they're our 'life support' - thank you again and especially for all the messages of love and encouragement, we treasure them all.
Rach came out of surgery just before 6. They have done the minimally invasive repair which is good. It was a complex repair which is why it has taken so long. She is in intensive care and still asleep but getting very well looked after. I will let you know more when we know.
What is most striking to me as I sit here in the hotel the night before Rach goes into surgery is just how remarkably strong she's been throughout the past year. It seems forever since we first came to know that she would be having surgery and as is probably always the case for those that have to go through this, things have not been easy!
I don't think anything can really prepare you for something like this. She's been through a cycle of anxiety, tears and stress but has shown an immense fortitude which neither her nor anyone else's writings can convey to anyone kindly following this blog. What has hugely helped with this are her friends, those of you who have offered words of kindness and shared experiences from all corners of the world, and more recently the reassuring presence of an excellent surgeon and hospital staff.
As a result of all this support and a good measure of her own strength, I am happy to report that whilst nervous about tomorrow, she's upbeat and seems ready to tackle this last hurdle. She tells me via text:
"They are plying me with cheese sandwiches. I've had a shower, swabbed my nostrils and am sitting watching Downton..."
We're all heading back to the hospital first thing in the morning to hold her hand and give her as many cuddles as we can get away with before she's taken to theatre.
Vicki and I will be keeping this updated over the next few days so will report back soon with news.
Just to give you a quick update on today. The whole family met up in Sheffield and had lunch and then took Rach to the hospital. She had her pre op tests, squirting blood impressively on the blood test, and then was given her bed. Next important task was choosing the evening meal. The hospital have been great so far. Everyone has taken the time to answer all of Rach's questions, from the doctor to anaesthetist (can't spell that!) to the surgeon who she's spoken to tonight. All she has to do now tonight is have a shower and a sleeping pill and try and get some sleep before tomorrow. She should start the op around 8.30am, we're hoping to go see her very briefly before she goes in and then it's just waiting time.
She did ask me to mention that signal is a bit rubbish in the hospital so she doesn't have wifi. She can get texts though.
I can't really believe the day is so very nearly here when she can finally start the road to getting better :-) Thanks again from me and all the family to all the people who are thinking of and looking out for her.
Tomorrow I will get admitted to northern general hospital ready for surgery on Monday.
I am rushing round doing all the preparation and getting my house in order. My water bill came through as unpaid (their error) so I had to complain about it, I whipped out the 'BUT I'M HAVING HEART SURGERY ON MONDAY' card swiftish and it did the trick. There has to be some perks right? Anyway my boyfriend Lawson has been handed all the house bills and cleaning duties so I can concentrate on getting better. He bought me a lovely heart necklace with a diamond in the middle, symbolising my heart being fixed. I'm a lucky girl really aren't I. Thanks again to my friends and family who have been there for me :)
Speaking of which I will be handing over on Monday to Lawson and my sister Vicki (not sure she knows yet but hey) so they'll be updating everyone through here.
I've shared my journal now with family and friends, feel free to write in the guestbook it'll cheer me up when I'm recovering :)
After more than a year of waiting I finally have a surgery date! It's 11th November, which is A WEEK AWAY. In a way though, it's better not to have the date too far in advance.
I have already been through a spectrum of emotions from smiley to excited to nervous to scared to very very tired but I'm glad the wheels are in motion.
I've not written much recently, because it's a bit overwhelming to be honest and I feel like I'm talking about my heart all the time in my day to day life now I have a date.
My family, boyfriend and friends have been great at looking after me. I'm so grateful for them and hope that I have a good surgery and recovery so as not to cause any more stress!
At the hospital they're all made up this surgeon has started operating there, which is a really good sign. And it's good to be at a hospital where people are excited about things. Sometimes that's a rare commodity in the NHS.
Surgery is on the cards very soon! Seems odd to be excited at the prospect of surgery but I've been waiting all year now and I'm ready. The title of this post is because I went to the home of the Beatles with my sis recently. It was awesome.
I met Mr Hunter at Sheffield and he was really informative! He is confident he can repair minimally invasively and assures me the quality of repair just as good as a sternotomy approach.
He told me some interesting things will I'll summarise quickly:
- I asked about migraines as alot of people on here suffer with them post surgery, He told me to speak to my anesthetist as apparently different brands have diff side effects and the cheaper ones are more likely to make you sick, constipated and get migraines.
- He also asked about my fitness and I explained I've never been able to run long distance. I've gone to the gym & was a good sprinter but I've not been able to do cardio without really struggling. He said in younger people he finds they don't get breathless walking or doing stairs even when the regurg is particularly bad like in myself.
He said I should be able to run properly when he's fixed me! That blew me away. No-one ever told me that before.
He looked at a chart from 3 years ago and told me even then my heartbeat was disrupted with 'atrial ectopics' which have now worsened and he believes I am developing atrial fibrillation.
At the time of this test I was told everything was fine, and there was nothing to be concerned about. I am a bit frustrated someone knowledgeable couldn't have dealt with me back then, and then finding out I need heart surgery at 26 might not have been such a horrible shock to me.
Anyway that's enough babbling for now. As a disclaimer, I have paraphrased what the surgeon said and so it may not be very medically accurate :)
Hey it's been while since I posted! Can't believe I last wrote in may. After some arguments between my gp and the hospital, I have an appointment at Sheffield hospital with a surgeon who I'm told is the best in the uk for min invasive surgery.
I'm going to find out if he is confident he can repair the valve then decide which surgery is for me, traditional or min invasive. I'm so lucky really but it's a long journey.
I have a new job starting at work next week and I am trying hard to do more in my free time rather than give in to being tired. I still fret but thats just my nature. everything's good :)
I went to the surgeon today, and he is alot more experienced than the information online indicated which set me at ease a little.
He suggested referring me to a colleague regarding a minimally invasive repair. I was taken aback as I've already asked and been told point blank, no this isn't an option for you. His preference is not to do surgery this way but he was keen to let me decide, which I respected.
When I left the appointment the prospect of more decisions and waiting (he mentioned Autumn) just floored me. Now I've calmed down, I can see that this is good news. I think I got too worked up and lost perspective.
But what I'd love to know is -
- Both mitral leaflets are damaged, am I even a viable candidate for the min invasive approach?
- Were you declined minimally invasive for mitral valve and what reason were you given?
I'm leaning towards the traditional approach, but it's possibly because I can't IMAGINE how on earth they manage a minimally invasive repair properly! So I might have to try and be a bit more open minded and look at the information.
It's good just to write these things down and feel like I'm among people who know what I'm talking about!
I went to my GP and asked to be referred to a more experienced surgeon, however it turns out the most experienced surgeon in my primary care trust is the one I've been referred to.
But as I mentioned last time, he's done 45 mitral valve surgeries in the 3 years I can view online. I'm sure he's good, and I will go to his appointment and find more about his stats.
I can't pretend I'm not disappointed though, this was one thing I didn't want to compromise on. I can't be referred to the next closest hospital, Liverpool, because it's out of my primary care trust so is funded by a different area. It's only half an hours drive away and has some really experienced surgeons.
I'm sad but this is the NHS and it's for free, so perhaps I should be more grateful.
Things are pretty tough at the moment. I seem to be having a run of bad luck. I really just want to get this sorted out and start a new chapter in my my life as it's hard to keep positive.
I went to my new consultant today and had an ECG and echo. My mitral valve is 'leaking like a sieve' but my heart is not damaged as a result of coping with this,
The consultant said he expects I will be having surgery in the next few months, but that will be for the surgeon to decide.
I also wanted to mention I've been on the new site that has UK surgeon data: http://www.scts.org/patients/default.aspx
It lists patient outcomes by hospital and by surgeon, and you can see how many of each surgery they perform. I've already looked up the surgeon I will be referred to and seen he has done about 50 mitral valve surgeries in about 3 years, but their patient outcomes are good.
I'm not sure whether to ask for a referral to the next heart hospital in my area as it has surgeons with more mitral valve experience. I'm sure the surgeon recommended is extremely competent, but a repair at the age of 25 years old needs to last doesn't it?!
Anyway, last thing. I got Adam's book and it was great. It scared the cr*p out of me but it pushed me a little bit closer to being ok with what's going to happen.
I finally had my appointment on Tuesday to find out what's happening with my heart.
The consultant said the rest of my heart isn't affected but the valve is severely leaking. He stressed that realistically I will probably need surgery within the year and there's no benefit in risking waiting. He said it absolutely has to be open heart surgery and there's no chance of a minimally invasive operation.
He put a halter monitor on me to see if I'm going into a fib. He said he'd write to my doctor if I am.
He said they'll do a 6 month follow up from my last echo to see if my heart is becoming enlarged. Having said that though, they sent me an appointment for a follow up in June, which would be a 9 month follow up. Which, if he's stressing I need surgery within a year is very poor.
I'm getting pretty down with the doctors being so offhand with my healthcare.
Bit of a sad post but I think I'm just getting used to all this, I finish work on Christmas Eve so I'll be able to travel to be with my family which will cheer me up.
edit: to add incase this is of interest to anyone else -
I asked about migraines. He said categorically it bears no relation and that there is only a relation between a hole in the heart and migraine.
I ended up going to PALS (it has a nice name but its where you go to complain about the NHS)
They were great and got me an appointment moved from may to 18th December! Amazing!
I had relaxed about the surgery and now I'm getting all worked up again at all the information I'm about to find out! But it's partly good excitement to get my questions answered
I'd love to know - does anyone have vision problems/migraines?
I've had a lot of problems with this over the past couple of years and this is the period in which my conditions worsened. I'd been to a opthamologist and a neurologist and they'd just said it was nothing, but one GP had mentioned my heart and vision could be linked.
I wanted to say how amazing it is to read all your journals. It is really interesting to me and a comfort as I have no medical information and no-one to talk to yet who is in the same position.