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The Patient's Guide
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Transplant week and the 6 month markThank you all so much for the congratulations! And thanks to Ernie for the offer, I have made Lawson aware he's got competition!
Good news!?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!
Latest biopsy resultI 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!
1 step forward TEN STEPS BACKJust 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.
Moving on...slowly...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 :)
Home :)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
biopsy ok! hurray!My biopsy results were only minimal rejection and the hospital are happy! I am over the moon.
Transplant forumYesterday 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 :)
Good days and bad daysAt rachs request dad has done a quick update about biopsy results...
Home sweet homeI 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 :)
Ob-la-di, ob-la-da, life goes onSo 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.
HOMEI 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.
good morningHello everyone, hope this reaches you all well
endoscopy resultsEndoscopy is fine! They believe it was caused by medication as a couple I was on are very harsh on the stomach. I'm so relieved.
a good dayI 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!
Better newsAfter 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.
Some disappointmentsHi, Rachel's dad here - she asked me to update you on her news.
««««««DISCHARGE DATE KLAXON»»»»»»»!!!!!!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.
whewphThat 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.
tuesdayHad 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.
woopsSorry for the odd words still getting used to my kindle!!
Wednesday?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..
SundayRach 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!
update from rachToday 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
ThursdayRach 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.
WednesdayA mum update...
TuesdayA dad update...
Good day!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!
SundayI 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.
FridayA mam update.....
ThursdayAnother 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.
WednesdayIt'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!
Physical improvements but mentally drainedRach 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.
MondayA dad update...
She's awake!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.
HeartRach 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.
HeartThough it was difficult, the bivad has been removed, the new heart has arrived and is now being implanted. Still a way to go. Thanks for all the support.
HeartWe 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.
HeartThere is another heart. Pray for rach please x
WednesdayA dad update...
MondayA dad update from this afternoon...
No heartHeart is not viable again x
HeartThere is another heart, please pray for rach. We will update when we know more x
A big thank youRach 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.
Another steady dayRach 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.
ThursdayA 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....
2014Well 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.
Tuesday (New Years Eve)Hi all,
It's me!Thanks guys holding up &. Making gains every day. Your support spurs me on
SundsyRachel 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.
SaturdayCaroline 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!
FridayJust a quick update today as we're all shattered.
No heartIt's another no. Pray for rach, it's been a gruelling couple of days x
Another heart (I know!)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!
ThursdayOur 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?
No heartAt the final assessment of the donor heart the doctors have decided it isn't suitable after all. So no transplant today. We will update more another time.
HeartWe 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.
Christmas Day!Evening all,
Tuesday add-onJust a quick one to add to Peter's excellent update!
TuesdayI 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....
MondayA dad update...
Sunday (6 weeks)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.
SaturdayRachel'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.
FridayA dad update...
Meeting with the surgeonsRach 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.
Tuesday (a bit late!)A dad update for yesterday...
Sunday (5 weeks)Hi all,
SaturdayUpdate from dad.....
Friday again!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.
TracheotomyLate 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.
MondayA dad update for you all...
Sunday (4 weeks)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...
FridayHi all, going to pinch my dads dads update again today...
ThursdayRach 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.
TuesdayJust 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.
MondayWe 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.
Sunday (3 weeks)Hi all,
SaturdayRach 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.
ThursdayThe 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.
WednesdaySorry for the pause, it's amazing how the time disappears in a day.
MondayMy dad has done an email update so I thought I'd pinch that for today, love Vicki x x
2 weeksI 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.
Chest closedToday's surgery was successful taking around 2 hours. After this, we had the opportunity to catch up with one of the doctors.
SaturdayRach 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.
A treatI 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.
ThursdayAs 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.
WednesdayRach 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.
Waking upThe 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.
BedtimeRach 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.
Monday continuedJust a quick note to say that rach has just gone into surgery again now.
UpdateThe 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.
Latest positionIt'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.
Post surgeryRach 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.
Saturday part 2I missed a part out below.. Please also pray hard for the left side of her heart, although the news is bleak about that we have not yet been told to give up hope of recovery.
SaturdayJust 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.
Steady dayThere'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).
Morning afterWe 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.
Tough timesIt 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.
UpdateWe have just seen the doctor this morning and he says rach has gone a bit down hill again and moving her to Manchester is looking more likely so they can put her on the ecmo machine.
More updateHi all, I'm going to pinch my dads email update for this as he's summed it all up fairly thoroughly...
UpdateRachel is having a difficult time. She has very low blood pressure as her heart muscle is not working properly. She is still sedated and going onto kidney machine
SurgeryRach 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.
Reflection on the journey so farWhat 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!
Admission Day has arrivedHi it's Vicki here (Rach's big sister)
admission day tomorrow...Tomorrow I will get admitted to northern general hospital ready for surgery on Monday.
I FINALLY HAVE A SURGERY DATEAfter 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.
Sgt Rachel's Leaky Hearts Club BandSurgery 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.
Been a whileHey 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.
surgery optionsI went to the surgeon today, and he is alot more experienced than the information online indicated which set me at ease a little.
Surgeon setbackI 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.
surgery not far offI 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,
consultant appointmentI finally had my appointment on Tuesday to find out what's happening with my heart.
PALSI ended up going to PALS (it has a nice name but its where you go to complain about the NHS)
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