"We have a liver for you"
Gary lived with PSC + AIH for 8 years before he was added to the transplant list in November 2016.
Two months later, that important call came. Gary kept the PSC Support Facebook community updated with a mini diary, which he has kindly agreed to share.
Tuesday 10 January
Rewind to the night of the 'The Call' - I was at home. Amy and her sister had just finished dinner and were about to put Jude to bed. Olivia was staying at her Grandad's house. It was 7:40pm, my mobile started to ring. On the screen the letters spelt out 'Queen Elizabeth Hospital' ... my breath skipped and I sat up. Amy knew by the look on my face this was it. After I answered and a few pleasantries were exchanged, the liver coordinator said 'So you can probably guess why I'm calling?... We have a liver for you...'
The journey into the QE was relatively calm and I was feeling quite positive, we arrived shortly after 9pm. Following a small wait on the ward we were put in a side room where I underwent the usual bloods, ECG and chest x-ray in preparation for the transplant.
It was a DBD Split Liver transplant, where I was receiving 70% of a healthy liver (Right Lobe) and the Left Lobe was going to a super urgent baby. The miracle of medicine today... a truly special gift.
We were told that due to the complex nature of a split liver transplant that it would not take place until around 8am the next day (Wednesday 11th January) Amy went home and I settled in for a few hours sleep. At 5am Amy returned and I woke up... the following few hours genuinely felt like a whole day. Getting closer to 8am, we were passing the time watching cars queuing to get into the staff car park, when all of a sudden a voice beckoned from the door of my room..."Mr Taylor, we're ready for you in theatre..."
The surgeon asked me to put on my theatre gown and green socks and shortly after a porter arrived to assist us down to theatre.
I was still in a bit of a bubble at this point... not quite sure how to feel, I just focused ahead on the corridor as we made our way down.
When we arrived at the theatre reception we were ushered into a waiting area where final paperwork and questions were done and I was able to say goodbye to Amy before I went under the knife... that was a very hard goodbye to say and as they whisked me away down the corridor to the anaesthesia room, reality set in that I was now alone on a bed about to have a liver transplant. I'd never been under general anaesthetic before so was anxious somewhat with what was going to happen during the next 3-5 minutes.
The Anaesthetist set everything up and as he was attaching the syringe to my cannula he said that I would feel a cold sensation running up my arm and by the time it reached my face I would be asleep... it didn't get past my forearm!
The next time I remember being aware of where I was and what had happened to me was Friday afternoon ... when they took me up to the ward. The Wednesday night and entire day Thursday are more like a patchy dreamy, which my wife had to describe to me. At 7pm on the Friday night was when I wrote my first post-transplant post for the group ... the rest, they say, is history!
Transplant Day - Wednesday 11 Jan 2017
Had the call last night and have been in the QE Birmingham all night waiting to find out if the transplant is going ahead. They've said around 7-8am so not long to go now. Keeping my fingers crossed! Wish me luck!
Day 2 - Friday 13 Jan 2017
Hi guys, so it's done! Went under the knife at 8:30am on Wednesday, the transplant took 9 hrs after a couple of minor complications and I am now out of intensive care and back on the 7th floor of the QE resting up!
The team at Birmingham have been absolutely amazing. They looked after me every step of the way. Finally a very special thanks and sincere gratitude to the family whose loss means I have a second chance.
Day 3 - Saturday 14 Jan 2017
End of first proper day back on the ward... going to keep a mini diary over this next week or so until I go home. Hope you find some of it useful if you are waiting for your first transplant.
It's been an up and down day I won't lie....In summary I started off feeling pretty upbeat and then have got progressively more tired throughout the day (note to self, you are not superman...)
- Begun taking new meds this morning... the aim is to try and find the right balance of treatment... too early to say right now of course
- Started to eat and soon got bloated and uncomfortable ... being bloated is painful and comes on quickly so my lesson was to eat less and chew A LOT more!
- They moved me into the chair this afternoon. This was a bit of an ordeal but once I was in the chair felt much better than being in the bed...
- A few hours later I was ready to get back into bed!
- Last event of the day was an ultrasound, which showed all was looking good.
- Finally, came back to the ward and spent time with parents and my wife and now that they have gone, I'm feeling pretty worn out ... sudden loss of energy
A few tubes have been taken out and I'm ready for complete rest until tomorrow
I've had a couple of people contact me directly which has been lovely. Some with more personal questions which they haven't wanted to share on the threads so if you do want to ask something a bit more in depth please don't hesitate. I found everyone's support very useful on this group and I'm a big believer of sharing experiences to take away anxieties and going in with an eyes wide open approach.
Hope you find this useful.
Day 5 - Monday 16 Jan 2017
Really been struggling this morning, the bloatedness and constipation is giving me agonising pain across my stomach and lower back. I been told to come off my PCA (morphine machine) as this is stopping my bowel movements - consultants said I just have to get through pain barrier and go to the loo, then should feel much better.
In terms of my function tests, all is 'normal' and they have said I am making great progress.
Did my first walk out of my side room today and about 15 metres down the corridor before I started feeling light headed and had to return back to my room.
Hopefully will continue to make progress on the pain side of things today - will update tonight
Any post-transplant people out there got any hints and tips for what worked with their pain relief? [Lots of tips were given on the Facebook Group]
Day 6 - Tuesday 17 Jan 2017
I'm not going to sugar-coat it for anyone waiting for a transplant but this morning's pain, after waking up, drove me to tears at around 6:30am. I like to think I have a good pain threshold but I was just mentally broken by this episode.
Wish I had some more positive words to say (which I usually do!) but that would only make the reality:
- Sharp pains around wound
- Lower back cramps
- Full aches in right side of neck
KEY LEARNING... getting pain relief as the right time to avoid the 'wear-off' period and maybe set an alarm to wake up an hour earlier and ensure you catch it at the right time.
Apart from that the consultants have said I'm doing really well, liver stats are improving and I have a CT scan booked in for later today.
Pharmacist appointment this afternoon and coordinator meeting tomorrow afternoon are next steps...
Day 6 - Tuesday 17 Jan 2017 (evening)
"The Twists and Turns of Recovery"
Pain management worked wonders this afternoon, so what started as a day from hell is ending on a positive note. Managed to wash and dress myself after my wife and mum left today!
A stark comparison to the agony I was in this morning, would never have imagined being able to do this.
Today's schedule was ultrasound and meeting with the pharmacist to discuss the barrage of medication I will be on... key items on top of pain relief are:
- Tacrolimus (Prograf brand)
- Mycophenolate Mofetil
Of course these vary massively between patients and I actually have an intolerance to Aziathioprine which is why I am taking the Mycophenolate instead.
The surgical consultants came round earlier this afternoon and said I should mentally prepare myself for going home this Friday. I'm very happy with this, but haven't been focusing on any day, as you can often be disappointed if it changes.
THOUGHT OF THE DAY... "there is light even at the end of the darkest tunnels..."
Stay positive people and thanks again for all your support and kind wishes. It's helping a huge amount.
Will send my next update in the morning!
Day 7 - Wednesday 18 Jan 2017
Week One Gone!
The real beauty of this group shone through today. Adrian and I are both on the same ward and have managed to Facetime each other (as we can't go in each other's rooms just yet) we've been putting the world to rights and sharing stories of battle wounds - brilliant to connect with other PSCers!
So, my management of pain relief last night and this morning has worked and despite still being in some pain, it was no way near yesterday morning's hell...
Notable events today... I've had my dressing changed and saw my incision for the first time. I was gobsmacked when I counted 54 staples it total. The surgeon has done a brilliant job and the cut is very clean and narrow.
Hopefully it will heal well. They have said they will be looking to take out the staples in 2-3 weeks depending on the quality of the healing. So that's good news.
I have a meeting at 2pm with the transplant coordinators to discuss discharge procedure and next steps for treatment and recovery program. They have said it is likely to be Friday that they send me home. My LFTs are continue to drop, which is great. Bilirubin currently sat at 98. This is higher than I normally am (usually 50-60) but considering now post-transplant I'm in a good place.
Hopefully will have the dressing removed from the central line in my neck this afternoon too as which point I should be able to have a proper shower tomorrow! Yay! No more body washes!!
All in all, a good day so far.
P.s - If anyone is curious to see my incision and staples in all their glory please message me separately, I don't want to post on the group as it is a bit graphic and not for the faint hearted. But more than happy to share privately if it would help anyone know what to expect.
Day 7 - Wednesday 18 Jan 2017 (evening)
The Enema Has Landed!
I'll let you use your imaginations as to what just happened with my bloating and constipation.
Oh what a wonderful feeling!!
Day 8 - Thursday 19 Jan 2017 (morning)
"Don't Count Your Chickens... "
So I've learnt a powerful lesson overnight as a first time transplantee ... don't get too over-optimistic just because one ailment has been sorted...
Woke up at 4am in pain and my side is swollen. Doctors have take blood and want an ultrasound doing as he believes it could be leaky plumbing...
It feels very hot, like I have been stung by nettles/bees and I have a burning sensation in my right shoulder. The skin is numb in some areas just like having local anaesthetic and in other areas super sensitive.
Did any post transplant peeps here have anything similar? Would love to hear your comments.
Keep your fingers crossed for me that it's nothing too serious! Currently sat in my chair feeling rough...
Will update later on when I know more!
Day 8 - Thursday 19 Jan 2017 (evening)
Thanks so much for all the comments and well wishes on my last post this morning ... sorry it's taken so long to respond.
Still none the wiser although have had another enema and cleared me through again. Perhaps the dreaded bloating wasn't all gone after all... although the water retention and swelling in my side has not yet subsided and still get a hot pain through my side like an infection... basically been miserable all day. Even had a little cry when the consultants came round early!
Usually I see the positive in everything ... think it's just mentally drained me a bit too much today....something that is very difficult to prepare yourself for pre-transplant... there's simply no training manual for this! Which is partially the reason for me wanting to diarise my journey.
- to remind me what I went though
- to help others understand more about the process
- to learn from the experience overall
The last 48 hrs have certainly been a lot of learning.
Truly hope everyone finds their own little gem of knew knowledge or comfort out of these ramblings and just want to thank everyone for your support.
I'm going to take a break this evening but will write another update tomorrow morning as usual.
Day 9 - Friday 20 Jan 2017
Update on last night
Soooo... it turns out I was having an allergic reaction and had a further flare up after I signed off for the night last night. The photos really don't do it justice...
My skin was on fire, lots of uncontrollable itching and then the swelling... back, legs, bum, face and arms. My breathing started to go tight and this caused the doctor enough concern to get a canula in me and give me a large shot of anti-histamine.
As soon as the shot went in, I could begin to feel a blanket of comfort engulf my body and I pretty much was passed out asleep within 10 minutes.
I slept the entire night through and woke at 7am this morning for my obs.
They seem to think it has been some sort of chemical imbalance from the mix of medication I am on, that my body had just decided it didn't like. They are going to review my dosages this morning.
In other news, I took a stroll up the ward to stretch myself out and my name has changed from red to green on the board, which means they are considering me for discharge. I don't know what to think about this to be honest, am I ready to go back home and deal with recovery without hospital support just yet?
How did others feel when they were being discharged? Relieved? Worried? Excited? Please let me know
Time for breakfast!
Day 9 - Friday 20 Jan 2017
Given all clear for discharge!
Bilirubin - 68 and has been dropping every day
All other LFTs - Good
Kidney function - Good
Ultrasound - All clear
Wound Leak - None
Dressing - Off
Itching - Gone
Weight - 73.5kg (lost 4kg since op)
Happy patient - YES!
Just got to wait to go through discharge process now, which from a lot of previous experience takes several hours, but all in all I think I'm happy with going home today, somewhat nervous about next steps, but very happy.
Once I get home, I will be doing an 'In-patient Wrap Up' post of my last 10 days since getting The Call.
For now I'm going to sit in my chair and enjoy a cup of coffee and a Bourbon biscuit.
Day 9 - Friday 20 Jan 2017
In-patient Wrap Up (The Last 10 Days)
So I'm back home and settled in. I was so unbelievably happy to see my little boy and my wonderful daughter, I'd missed them massively. We made a difficult decision not to bring them into hospital, as although Olivia is 9yrs old and know all about my condition and the operation, it was still not something we wanted her subjected too. Jude however is 18 mths and simply a nightmare in anywhere where he can run around and grab things!
Looking back over the last 10 days I wanted to summarise the start of the experience into one post, mainly to get across the emotional side of the transplant rather than the surgical aspect (which hopefully I went into enough detail each day!)
Firstly, before I start off, I cannot stress enough how huge a role Amy (my wife) played in all this, supporting me day to day and having to run our home life with the added pressure of a husband undergoing such treatment. She never faltered once and remained so strong. I couldn't be more proud and lucky, she is my rock and I love her very much.
Of course everyone's lives are markedly different but when it comes to emotions the similarities are usually greater than the differences…