Anyway in other health news I'm taking part in a study at the transplant unit to see how 2 diets could help reduce inflammation which is ultimately what causes issues with donor hearts. One groups is low fat, the other is Mediterranean - I will let you know if they uncover anything helpful. Also they might be writing up my case in a medical journal to help other hospitals hat end up with patients in a situation nearer to mine, as they had to make a lot of difficult calls due to the infection I contracted in hospital. I'll be glad if it can help others like they were able to help me at Wythenshawe.
Now I'm looking forward to christmas and quite aware it's nearly a year since this situation all transpired. I'm just really anxious to have a good Christmas without any drama. Cross your fingers for me!
Can't believe it's been so long that the whole website has changed! I've been meaning to update for ages.
Health wise I am doing well, not rejecting. I've gone back to work for a couple of half days a week and had a stomach bug and a cold so far which i suppose is just what happens when you are immunosuppressed. I've tried to listen to everybody telling me to not do much. It gets a bit boring holding back so much though
That said me and Laws are also in the middle of buying a house so we've got enough to be getting on with. Soon enough we'll have our first home and most importantly a dog to round off our little family. We're thinking of a French bulldog or cocker spaniel-poodle mix or welsh terrier or...well to be honest I would just love any dog. I think it'll be good to keep me exercising too. Now it is raining constantly in Manchester it's perfect weather for me to stay inside and hibernate :)
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.