I thought I would carry on with my Mum’s diary to show the initial recovery period to the end of November. This is only exerts from Mum’s diary which charts my main progress- I have left out quite a bit of extra & medical information!
Today- 27th November was the Sunday after my transplant and was the first day I remember anything from and count as being ‘awake’. As you will see from Mum’s diary- it was the first time I had a post-transplant picture!
More to follow at the weekend and I will update you on the last few weeks and my wonderful transplant anniversary on Friday soon.
Love Kerry xxx
Friday 25th November – day 2
Kerry much more bloated in the face today and lots of visible oozing from wounds. Small drainage pouches collecting fluid from left hand and right elbow – so right hand less oedematous. Briefly saw Dr Bart – and he said it is important to hear if she responds to us – they want us to let them know how we find her and if we make contact with her. He also reminded us that there’s a long way to go and not to get our hopes up.
Kerry is opening her eyes wide at times and looking round as she does. We keep telling her she has her new lungs and how well she is doing and how brave she has been – lots to tell her, been asleep for over a week, on ecmo and the ventilator but now she has had her transplant – Mr Simon did it his new small cut way and now she can slowly wake up.
We asked her to try and make contact with us by squeezing our hands or nodding her head. We went round to E ward and got her glasses and put those on her for a while. The one time she did seem to respond was when Geof asked her if she wanted her glasses taken off and for the first time she appeared to nod her head (twice) rather than move it from side to side. Who knows what she can hear but we hope she knows she has now had her transplant and she has got really good new lungs.
She was taking some breaths herself.
By the afternoon she was noticeably less awake, still breathing occasionally but appeared more drowsy.
(The nurse inadvertently let slip that the Drs were wondering if she has had some sort of neurological damage – in that sentence my world fell apart, I felt chilled to the bone and sick. It made me see Kerry with new knowledge and eyes and not necessarily correct. What a bombshell. Geof saying still long way to go. He is right of course – a whole week of heavy duty sedation and trauma. I know that he is worried too and we did speak briefly about it later. We also agreed not to say a word of this to anyone else.)
Later after the Doctors had put a new line in, she was looking even more drowsy and less responsive – fewer movements and mainly eyes shut.
Spoke to Dr Faraman (another ITU consultant) who explained that– as often happens post transplant – her kidneys are not working. The immunosuppressant drugs can knock off the kidneys temporarily and so they have inserted a cannula to start haemodialysis. He expected this to continue for a week or so and then try her without and hope the kidneys will have recovered. It does help explain though her difficulty to waken up – Dr Faraman agreed – her inability to excrete the drugs, long acting sedatives, means that they are still floating around her system along with the rising toxins.
The nurse told us who Dr Faraman was and that Kerry’s insertion of the cannula was very difficult because of all her previous lines etc and ‘if anyone can do it, Mr Faraman can’, he is the expert and old school. Most now use dopplar all the time to help but he usually is just able to slip them in – but he had to get the dopplar with Kerry as her artery and veins were very closely aligned.
The kidney failure does give a plausible explanation for her unresponsiveness so as it is something that does happen quite regularly and can be treated is not such a bad thing.
Saturday 27th November – day 3
Kim and I went in at 11. Had helpful update from John Faraman. Some problems with clotting in the dialysis overnight – Kerry and machine given heparin which hopefully will sort it out. Kerry slightly less bloated – surgical emphysema is definitely diminishing.
Abdo and CXR done – but he hasn’t checked them yet. He was reassuring regarding the time it will take for Kerry to wake up – he expects her to be in ITU for a month. He is also very encouraged that she is moving both hands and feet. He said that the good thing is that the lungs are working and sustaining life for her – which the old ones certainly couldn’t have done any longer – they really had had it. This was more than the 11th hour and the fact that she has survived the operation and the lungs started working at all is more than many of the doctors here (including himself) ever thought possible. He reiterated that there will be many more complications over the next few weeks and her recovery will be very slow – that is to be expected.
Kerry seemed to respond to my first hello – and looked towards me then and once more when I started talking to her – and I think that she does at that point recognize my voice and respond. She mouths what looks like ‘Mum’ but I am not sure it is that focused. After that she continued to move her head as before and then settled looking quite restful. Kim upset as she thought Kerry looked distressed but when I explained to her how much she had to waken up through (like being deep-frozen) she felt better. I hope this is right and Kerry is just surfacing a little when she first hears our voices.
Kim happy to be with her for this afternoon and evening. Geof then visited but they had to leave as they were changing the dialysis line due to the clotting problem.
Kim phoned in the evening really pleased to tell us she had had some definite contact with Kerry – first for a drink, then to sit up and then she was sure she had asked ‘where’s Mum and Phil?’ Kim filled her in and Kerry seemed happy with it. Then she fell fast asleep for rest of time. Drs happy with her progress.
Sunday 27th November – day 4
Phil text to say that nurses say Kerry more aware, comfortable and held his hand. Not absorbing the ng feed so going to supplement nutrition.
Arrived by 4.00, K still quite flat but when I went to say hello she opened her eyes and focused. She knew who I was and started asking questions. Difficult to understand but I asked her if she wanted to know what had happened. She definitely said yes. I told her about the arrest, the ecmo how she had been asleep for over a week while they kept her alive waiting for the transplant. She looked surprised. I asked her if she knew she had a tracheostomy – she said no so I explained when and why and that was why she couldn’t have anything to drink although I’m sorry her mouth is so dry. The nurse gave her several swabs full of water and Vaseline for her lips. There was more that she tried to say but so difficult to understand – need lip reading skills. Sat quietly with her then as she went deeply asleep.
She is breathing spontaneously – the ventilator is giving her 30% support but she is driving the respiration rate. It’s so good to see the run of red breaths.
Phil arrived back at 6pm and said apparently her kidneys are starting to work a little.
Monday 28th November – day 5
Phil visited 11-12 and I arrived at 12 to find Kerry sitting a bit more upright and also more awake and aware – and by the end of the next hour I was in no doubt. Almost had a conversation with her about what had happened – I told her about Kirstie’s blog and how she felt. I told her again about the ecmo and why she had the trachy – ie she is doing so well – it’s not a complication or because she isn’t doing well – it was for before the op. But because she was so ill she will take a bit longer to get going again. I also told her how well they had been looking after her – how she arrested and they intubated straight away then the ecmo and all so calmly and efficiently, no drama but expertly cared for – even I have learnt just to trust them. I am sure we just need to keep telling her about what has happened.
She wanted to sit up, have her face wiped and dried, to have a drink – then she felt sick so had some IV ondansetron. She is uncomfortable all over and so I asked the nurse and then the Dr re pain relief – only on 2mls morphine – not a lot considering what she has been through. Complaining of her legs where all her lines are inserted and just generally all over – her back etc.
I explained to her that we don’t want to tire her when we visit and are happy to sit quietly while she rests as she has a lot of recovering to do. I also explained re the TPN, they increased the ng feed but possibly too quickly as much air in her tube on aspiration and the nurse thinks this is contributing to her discomfort, so just 20 mls ng and increased the TPN.
Explained that they don’t want to give too much morphine as may make her sick and also less aware but they will increase paracetamol and make it regular bd – she seemed pleased with this.
She is so aware – even when I said I am doing lots of puzzles to keep me busy she looked heavenwards. I feel as frustrated as she does when I don’t understand her but hope I am improving. The nurse Katie came in who looked after her on the night of her transplant – and I introduced her to Kerry and we told her about the hair wash and Kerry smiled! We had one other smile and then when I said goodbye (they were coming to turn her to be more comfortable I hope) she gave me a kiss goodbye – a wonderful moment!
Returned at 5 but had to wait whilst they finished turning and doing her dressings etc. She was more settled when I went in than this morning – the IV paracetamol doing its job. She asked me to stroke her feet and helped her touch her ng tube and make it more comfortable. She slept most of the evening – woke up once really cold – actually shivering despite her warm air cover. Nurse tucked her up nicely.
Phil returned just after 7pm. He said that Mr Simon had seen her this afternoon – and seemed pleased with her. The nurse said that all the transplant team comes round everyday. She also said that if the dialysis clots again they will try her off as she is producing some urine. They have also reduced the volume support of the ventilator but I note the oxygen level is up to 35% – don’t know why. However they are very pleased with her. I didn’t wake her up to say goodnight.
Tuesday 29th November – day 6
Dialysis stopped for the day but will restart overnight –it is good progress.
She is definitely awake more of the time and we continue to try and understand what she mouths, I managed to understand she wanted her glasses and so she had them on again today.
More drugs are now being given through ng tube rather than iv – the aspirate is decreasing and so they think she is beginning to absorb more.
Mr Simon (her surgeon) visited briefly – all going well.
Dr Carby came and did a bronchoscopy at 1 – Kerry asked me to stay and he was happy. Amazing view of stitches and then the pink healthy tissues of the new lungs – he said and this is your right lung…Kerry’s lung!
Plenty of secretions particularly in lower lobes, suction removed it and flushed with saline. Samples taken for microbiology – but he was pleased with what he saw. She needs to cough up these secretions in order to lessen the support given by ventilator and oxygen flow – at present up to 40% (dropped to 35% later). He gave the physios 10/10 for effort but 1/10 for achievement!
He stressed that this all normal and part of recovery and in no way a complication. He will look at the stains and then consider changing some of the abs to via nebulizer rather than iv to minimize the GI side-effects. So interesting to have seen it.
Returned at 5 – Kerry just having dressings etc done. Phil had tried pen and paper earlier but not huge success – will bring in her ipad tomorrow. Her movements are all getting better – yesterday she tried to bring her hand up to her ng tube and I had to help her – today she did it all on her own. Also moving oxygen probe from one finger to another, clumsy but she managed.
Talked a bit to her – asked if she remembered Kim being here – not really, told her about Kirstie’s documentary which she definitely registered, and about Raffi’s present (pink pearl bracelet) and card.
Sat with her quite quietly then. Mr Simon visited – he was positively energized by her progress and visibly pleased with her. Each day on the ventilator and ecmo pre-op means a week recovery post-op but she is doing so well – she is young and ‘previously quite fit’ so she will do well – he has no worries now! He asked about physio – that is now v important – he asked her to move her foot…
He compared how she was to being on the top of Mount Everest for a week and now she has to slowly come down and recover. She was so ill – absolutely no further to go and then some more – the ecmo holding her – I said it kept her alive and he said no not really – she wasn’t really alive just in limbo, pretty much dead!
I said we had seen the stitches at the bronchoscopy and lovely pink healthy lung tissue – he looked pleased.
I have never seen him so animated, really smiling. Yes long way to go – she was so ill – but no worries now, she will recover well! He implied it maybe only another week or so in itu.
Took photos today – with Kerry’s permission – in fact she made it clear she wanted them taken. New drainage bottle right hand side.
For K it must be such hard work and she cannot appreciate just how well she is doing – just how sick she was.
Wednesday 30th November – a week post transplant
When I arrived to see Kerry she was having another bronchoscopy – having already had physio and two of her drains removed. So by the time I saw her not only was she exhausted but also it was near the end of visiting time. I spent about 10 mins with her (stroking her feet mainly) then I was sent out again. She did say that they asked if she wanted to move to a quieter bed space and he had said yes – she finds it very noisy here.
Returned at 5 and had to wait till about 5.20 as they were moving her to her new place – bed 15.
She was definitely tired and looks a bit deflated – I think the reality of how much work she has to do is weighing upon her – and I am not surprised she is feeling daunted – I know that I am. We did some movement exercises with her feet/legs and hands/arms, she said her feet are numb but painful at the same time. The nurse has said that tomorrow they are thinking of putting in a tube direct into the jejunum to by-pass the stomach to aid digestion.
I told her I had spoken to Lucinda at Jersey Hospital and she sends her love – they hadn’t heard anything about her admission to Brompton, transfer to Harefield etc etc.
I mainly sat quietly with Kerry and eventually she went to sleep so I didn’t wake her to say goodbye. The nurse was setting up the dialysis machine as I went. Oxygen 30% today. The ITU Dr briefly came round – the move to bed 15 shows they are happy with her progress.
These are the sort of days we have to get used to – hard work for Kerry and hours of waiting.