Archive | November, 2012

A year ago… (part 2).

27 Nov

Hi Everyone,

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!

First pic post transplant in ICU.

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.

First Anniversary :-)

23 Nov

Hello everyone,

Just a quick post today as I have a lot to do but couldn’t let today go without a blog entry!

Today it is one year since my miraculous life saving transplant. In fact pretty much this time last year I was being wheeled into theatre. Whilst I had been blissfully unaware of the horrific past week, my family had all suffered a very long morning waiting to hear if I would get this very last chance- as the surgeon put it “at the eleventh hour and 59 minutes”!!

What a year it has been, so many happy memories that I never thought I would have. The first year after transplant is supposed to be the hardest and its a big milestone. It’s not been easy I will be honest but I have pretty much sailed through it compared to what some people have to deal with. I am a lucky lucky girl. When I look back to this time last year, I cant believe the biggest worry I have today is whether I will look fat in my dress tonight!!

Massive thank yous all round- to my fantastic husband, family and friends. To the amazing medical teams- particularly Mr Simon- my wonderful surgeon and most importantly to that lovely lady and her family who not only saved my life but gave me a future. Please all say a prayer for them today, I am very aware of their pain today as I am celebrating.

Lots of love to you all
Kerry xxx

This Time Last Year….

16 Nov

***WARNING: Ridiculously long post!!***

This week is very poignant for me as it was exactly a week ago tonight that I effectively died. Today would have been the very last time I saw Phil, my parents and my brothers and sisters, I had taken such a turn for the worse the night before that they all came over to see me for the day- we took photos and had such a lovely few hours together… not realizing that would probably be the last time we were ever all together. As it turned out, someone was looking out for me- what happened over the next few weeks was an absolute miracle- there are no other words to describe it. Mum and I were talking today and she saw everything- she was there the whole time that week, she saw every face the doctors made, heard every worry in their voices, heard them tell her I more than likely would not survive and yet here I am, against the odds- healthy and incredibly happy- I just cant believe it and could not be more grateful to everyone who helped me get to this stage.

Last picture together!

I am rather ashamed that I still have not managed to put the whole story into my own words- it is half written but I am not finished yet. Before everything happened, I asked my Mum to keep me a diary of the details if and when I had my transplant and true to her word she managed to do this. I would like to include parts of it in this blog- it gives you a taste of exactly what we were going through that awful week or so last year that led up to my amazing transplant.

“Tuesday 15th November

Due to fly over on 10am flight, Phil back the night before.
05.00 received text from Kerry saying she hadn’t slept, felt awful and scared.
Decided to get to airport and book onto 7am flight. Arrived Harefield by 10.30.
Kerry very tired and breathless. Long day sitting with her, on bipap continuously but struggling to breath, blood gases not too bad though.
She was at the end of her tether saying she couldn’t face another night or day like this. Because she was so breathless despite bipap etc ITU outreach team asked to review her in case she needed extra support overnight.
6.45 pm Brian came in room with 2 doctors – I assumed they were the outreach team. One of them introduced themselves and then at 6.50 told us very calmly that they might have some lungs for Kerry from a non-heart beating donor.
Kerry prepared for theatre and we were told that the donor’s life support was due to be switched off at 01.30 and if all well Kerry would go to theatre about 3am. The transplant co-ordinator for that night was Linda.

Wednesday 16th November

It was a long evening and night, Kerry slept very little for the excitement of the call did give her a boost – at least she has had a call even if not successful this time. But she still felt so poorly, she hadn’t managed to eat all day despite being hungry because of the breathlessness. By now she was feeling nauseous as well and had IV ondansetron followed by IV cyclizine just before Linda arrived.

We eventually heard from Linda at 3.45 that the transplant would not happen as the time scale had been exceeded. Whilst she was still explaining Kerry went very pale and floppy but obviously very distressed. With great difficulty (bipap still on and no breath) she managed to get me to understand that she really couldn’t breath – the bipap was acting as a ventilator and without that she would die. I then tried to pass that on to Linda who at first thought this was a reaction to the let down of no transplant. Her sats were going off so they called the Drs. Lovely anaesthetist came (called Michael) who listened to me (I held onto his arm looking intently into his eyes and told him he had to listen to me) and could also see that Kerry’s chest was not moving, it was also very quiet – air entry exceedingly low. Her pulse was also racing even faster than usual.
During this time I held her in my arms stroking her back and head trying to reassure her. She was getting desperate and very frightened. I thought she was going to die as I held her. After what seemed a lifetime but was probably only 5/10 mins she did start to breathe and stabilized a bit.
She was then transferred to ITU at about 6am where they inserted a cvp line and an arterial line into her left and right femoral vein (groin lines). They gave her IV magnesium as that can help open up the lungs.
Linda, the anaesthetist and the ITU sister all advised for Phil and Geof to come over on the first flight so we organized that.
By 8am Kerry had stabilized and looked much better. However this had been such a scare that we decided to bring the others over to see her.

They transferred her back to E ward bed 18 at about 2.30pm.
At about 4pm the nurse was trying to transfer Kerry back to the Ward bipap machine (they had to use ours for the transfer as it had a battery and K couldn’t manage without it) but had difficulty resetting the pressures, so went back to ours. Meanwhile Kerry started to feel distinctly unwell again. Difficult to get the sister Caroline and young nurse to take notice. Eventually they cottoned on and Kerry’s sats were seriously lowering by the moment. Drs called, blood gases done and redone as so low. ITU anaesthetic team called and finally someone thought to check oxygen was connected…it was but to the wrong bipap machine! Rectified and soon Kerry picked up – it was the second time in 24 hours I thought she was going to die in my arms.

By the time Phil, Geof, T,K and E returned drama was over and K more settled. We actually had a really good evening – she was so thrilled to see everyone. She knows herself how close she was to dying and so is just pleased to see the family and not spooked by the mass arrival! We took some photos to record this moment in her journey.

After everyone else left, I settled Kerry and we had a calm evening unpacking her stuff and reorganising it – despite my inability to hear her which she found very irritating at times! I said goodnight and she sent us all lovely texts before settling. We all thought – including Kerry herself – that she was going to have a better night.

Thursday 17th November

03.53 I was woken by my mobile – Joan Kerry’s nurse just asked me to come over.
I arrived at 4.06, walked down the corridor and turned towards her room expecting to find her huddled over, breathless and just wanting my reassurance.
I saw her lying flat out on the bed surrounded by the crash team and I thought for a moment she was dead. I dropped my bag and top and simply said oh shit and then as I rushed in I did apologise. I saw then that she had been intubated and was being bagged. I felt so confused – how had this all happened and I had not been called?

The lovely night nurses Joan, Grace and one other who I am very sorry not to be able to record her by name were all very supportive and tried to explained that she was moving now to ITU. They gave me a moment with her and then took her round. I waited in Kerry’s room for about 20 minutes, in shock and heard from Grace what had happened. Apparently she had been ok till about 3.30 when she called the nurse struggling to breathe. This nurse called Grace in and whilst trying to reassure Kerry realized she was completely supporting her and that she had collapsed. The crash call was put out and she was immediately intubated and bagged. That’s when I arrived. They were so kind.

We learnt later that the nurse who went in when Kerry rung the bell was called Debbie. She went and spoke to Kerry and then left the room. 5 minutes later she was walking past her room on her way to doing something else and saw Kerry hunched over and was about to carry on but decided she looked in a strange position so went in. Walking over to Kerry she saw how distressed she was and as she held her realised she was collapsing. It was a respiratory and cardiac arrest. The timing of all of this is amazing – this nurse definitely saved Kerry’s life – not the first person or the last one to do this but a crucial moment in this story. If she had just gone and done whatever she was going to do and then returned to Kerry it would probably have been too late.

04.45 transferred to ITU Room 11 (isolation room) and attached to ventilator. I was allowed in from 5 – 5.45. Told Phil and Geof what had happened. Went back to room and tried to get some rest.
Phil came after dropping the others off at Gatwick and we went in to see her together. She looked very flat but at least deeply unconscious.

The anaesthetic and transplant teams decided that she was to be started on ecmo (extra corporal membrane oxygenator) this completed by Surgeons by 12 ish, went to see her with Phil, Geof now arrived so we visited together. The ecmo tubes in her neck are huge and much more compromising than I expected, I begin to wonder if Kerry would really want all of this – but we didn’t ask or even sanction the intubation or the ecmo – the decision was made by the medical teams – even the consent form was signed after the event.

All very upsetting, poor Phil is going back as planned on the 6.15 flight but I will stay until tomorrow at least. After Phil left they tried waking Kerry up so she was still sedated to a degree but was actually breathing rather than the ventilator. This was very distressing – she looked very frightened, kept trying to move her head (not allowed because of all the tubes) fighting the et tube and even tried to talk. Small tears escaped from her eyes, another real low in this whole experience. After a while her stats started to drop and blood gases not at all good. She drifted off to sleep and literally stopped breathing. So they increased sedation and reset the ventilator. Then they decided to change the ecmo cannulae and insert a further groin one. We left again and left her in their very capable hands. I rang ITU at 10.30 and she was all done and settled.

Friday 18th November

Waited until 11am to visit. Kerry looking more comfortable and the new neck cannula is less obtrusive to Kerry. She was still heavily sedated and the ventilator doing all the breathing. This is so much easier for us but the teams are all so keen to get her breathing in order to maintain her respiratory muscles etc for after the transplant. Decision taken now to insert a tracheostomy as whatever happens (transplant soon or not she will still need extensive ventilation) and she should be much more comfortable without the et tube, also ventilator much more efficient with a trachy.

Apparently they had tried to wean her off again during the night but unsuccessful – she was biting the tube, having muscular spasms and moving her limbs which along with dropping gases meant they had to increase sedation again.

Even when we saw her she was still lightly sedated – definitely didn’t like being touched and especially not the suction. Trachy to be done by eminent thoracic surgeon, so many experts all working together for Kerry.

The transplant registrar explained that she had spoken to Kerry and her husband on Monday and explained what they could do if necessary to prolong Kerry’s life for transplant and Kerry said that as long as she was still transplantable she was happy for them to go ahead. This is a small comfort to me as I watch her suffer now and hope that she will be ok with these decisions. In some ways its like the premature babies when you wander if the Drs and parents go beyond the time when they should just let the poor mite die in peace. If she gets the transplant then of course its all plain – but if not…

Allowed to stay with Kerry until she was going to theatre (surgeons wanted to do the trachy in theatre due to risk of bleeding – Kerry having heparin infusion and ED syndrome[!] anaesthetists in room due to amount of equipment). Planned for 3pm but went a bit later.

Geof and I went back to her about 6pm. Moved to bed 8 in the main unit, Still fully ventilated and looking peaceful. The trachy will be much easier for her to cope with as she wakes up. As we sat there some concern over dropping tidal volumes – rectified by some suction and bagging. The nurse explained that it takes two doctors and a nurse to turn her because of all the ecmo and IV tubes. It shows how tenuous the stability is. Anaesthetist still plans to start waking her up overnight.

Saturday 19th November

Went to meet Tom and Ed off the 7am flight at Gatwick, filled them in before I went in at 11 on my own to assess how she had fared overnight – was she conscious or still fully ventilated and sedated? I could see the moment I opened the door and looked across the ITU that she was still completely flat and so knew that any attempt to raise her level of consciousness had been unsuccessful. The nurse (Michaela) explained that every time they touched her or tried to move her she went into bronchospasm and so the blood gases dropped and basically the respiration was too unstable to continue, so she remains heavily sedated for the moment (using the propofol and also midazolam). They are even having to reduce the frequency of turning because it takes significant time to restabilise. She certainly appeared unresponsive to me and I don’t think she is aware of anything but definitely still doesn’t like having her teeth cleaned! Or the suction – v understandable. I went and got Tom, we sat for a while and then Tom got Ed. I noticed that her wedding ring has now been removed – in ITU safe with her earrings.

Dr Reed came and answered our questions and explained that if she gets septic or any other organ fails then she becomes untransplantable. In this situation they will – once we are ready – slowly withdraw the life support but maintain her in a deep state of unconsciousness so she will not know anything about it.

Sunday 20th November

Tom and Ed took it in turns to sit with Kerry. In the morning there had been no change. In the afternoon Tom phoned me (15.39) with the good news that Kerry had been breathing for herself for over an hour and they were very pleased with this development. She is still well sedated and now they planned to reduce this slowly by 1ml per hour. In the evening Tom sent this text:
‘Just spoke to one of the doctors who is relieved at Kerry’s progress today. In essence she is still relying on the ventilator but its her who is deciding to breathe and she’s using the muscles they need her to. In time they plan to reduce the sedatives but as she has been so precarious they are going to take small steps. Sats all positive though and she agrees that this has been the best day so far.’

Phew some good news at last and yes cautiously I think she really has made progress. Well done my star, my precious first-born.

Monday 21st November

Kerry has maintained initiating the breathing overnight, however there is a little concern re some bleeding around the trachy site. She has 2 units of platelets.
The propofol has been stopped, she’s on clonidine, ketamine, noradrenaline, midazolam, morphine, aminophylline, heparin and insulin (blood sugars have been unstable).

The concern re the clotting became more acute as the afternoon went on and her volume of circulation keeps becoming too low for the ecmo which then alarms. Two units of blood given during the evening. Definite collection of blood in the tracy tube, around the site and in her mouth. However she looked relatively peaceful, her face a little puffy.

Tuesday 22nd November

The concern re the clotting remains, further units of blood transfused. Waiting for Drs review.
During afternoon Mr Simon reviewed her – he said that these (clotting/bleeding) are the problems that they face and they are certainly making things more difficult but when asked he said he would still operate if the lungs came up but it would make it more difficult. He was also disappointed that she was still not awake but understood the difficulty.

Then S/B Dr Reed – she seems more concerned that Mr Simon but I think its just her nature. Situation is still very precarious and we review everyday. She said that she will be discussed by all the teams at the MDT on Thursday morning. 2 more units of blood products transfused.

Just before transplant

Wednesday 23rd November

Phoned by Linda at just after 7am ‘nothing’s wrong…’ but lungs have become available, not a non heart-beating donor and its looking promising and Mr Simon is hoping they will suit Kerry. Mr Simon would hopefully be able to make the decision by about 8.30/9am. Eventually let in to see Kerry (thanks again to Linda) after 8.30. Still obvious signs of bleeding but Kerry opened her eyes a few times and I was able to speak to her – not sure if she connected. Blood pressure and pulse went very high (190/100 and 160) so increased midazolam an after that BP became very low 75/40 at its lowest but then it and pulse stabilized.

Decided Geof coming over asap to be here for Kerry and me. The honest truth is that if the transplant does not happen this time (if the lungs are not fit) tomorrow at the MDT they will make the decision that she is no longer transplantable – I am sure that this is what Dr Reed was ‘telling’ me. Geof needs to be here whatever happens. And keeping Phil informed.

10.15 one of the transplant fellows went through the consent form in the little relatives room. She was consented for bilateral lung transplant due to terminal lung disease, she is not expected to survive long. Lung transplant is one of few options left. Risk of death in this procedure considering deteriorated condition is 50%.
He said that only Mr Simon would consider operating on Kerry – she is very high risk – and they are only doing it because she is young. If she was over 50 they wouldn’t consider her – she’d just be allowed to die. He also made it clear that the team are all really wanting Kerry to be successful.

I could tell the varied reaction from different Drs – some excited others think Mr Simon is taking a huge risk. The co-ordinators are visibly glad and think Kerry so deserves this chance and agreed that no other surgeon than Andre Simon would take Kerry on.

Allowed to take a photo at 11am and ng feeding stopped at 11.15.
One other Dr (not sure which team or rank) appears surprised at the decision to go ahead – he has reiterated the 50-50 risk – and predicts if she survives today this will carry on over a month or so. Some of these patients battle hard but still lose the fight weeks down the line.
Mr Simon spent quite a lot of time just around Kerry and made it clear to me that this is her last chance – the surgery will not be sophisticated (ie not with lots of extra equipment as he put it – ‘these lungs are crap’) – there will be no turning back and her condition will not allow another opportunity.

1.30 pm Kerry went round to theatre on the bed – 10 drs and Tina attending to her and the equipment. I watched her go, said goodbye to Mr Simon and left her to their expertise and care – only to see him getting some lunch in the Hungry Hare!

2.22 pm p/c from Jennifer: Mr Simon just entering theatre now and starting the operation. It took rather a long time to stabilize all the machinery etc. She thinks it will be into the night before we hear anything if all goes well. Linda is back on duty at 8pm. They will contact us. (Went for a walk and eventually found The Little Orchard pub and had very nice supper – broccoli and cheese with sage soup followed by a ‘shared’ steak and kidney suet pudding)!

9.30 pm called by Linda. Kerry is out of theatre and stable. If we come over a surgeon will speak to us.
Operation explained by ‘Bart’ one of the surgeons who went out to recover and assess the donor lungs. He did not do the transplant but will be overseeing her care throughout night.
Kerry is stable – very very difficult operation because of her condition, but they controlled the bleeding and Mr Simon managed his minimalistic approach – just two scars and no broken sternum.
She is still very critical and lots of hurdles to cross but the surgery went as well as we could hope for. They will leave her asleep for now – on the ventilator completely at the moment with 50% oxygen but the ecmo has gone (used heart/lung bypass during surgery).
They cannot predict how things will progress – she might be awake in a day or so or not for weeks. They will take it day by day.

10.10 went in to see Kerry – back in her bed space (8) and looks very similar to when she left – but no ecmo which is a wonderful difference. She does look puffy – her ears are inset into the side of her head and chest obviously full of air and so hugely bloated. Size of a wrestler – and boy has she wrestled. Slightly blue in colour especially her lips but sats and gases were stable. Bart checked CXR and all ok, lungs inflated and so doing the gaseous exchange.
It is so wonderful that when she wakes up it will be with her new lungs – the worse thing would have been for her to wake up and still be waiting for ‘…lungs’ with the ecmo etc.
Lovely nurse Katie wanting her tidied up and looking her best for us to see – and hoping to wash her hair during the night!

First photo post transplant (after about 2 weeks I think!)

Thursday 24th November – day 1 post transplant

7.20 phoned ITU spoke to Katie – Kerry has had a stable night – we can visit as usual at 11.

Kerry looks beautiful, hair washed and dressing around trachy clean and not all blood soaked. Talked to her but minimal response, still on low dose of propofol and morphine. As the morning progressed the propofol was lowered and eventually stopped.

Still obvious surgical emphysema in chest and leaking of serous fluid from hands which remain very puffy.
Drs pleased with her progress – oxygen down to 35% and blood gases good. Still fully ventilated. A positive day.”

First family reunion in Jersey post transplant

Reading that back, it’s so hard to actually connect all that with what I have been through- to know all of that has happened to me but I don’t remember any of it (thankfully!).

I will blog again after the weekend- next Friday I celebrate my first lung anniversary. We have so much to be thankful for and Phil and I will be having a party- to celebrate our marriage in 2010 as well and I am so looking forward to it. I wish we could invite absolutely everyone we know but I’m not sure that would even be possible!!

As ever and on Friday particularly, I will be remembering my amazing donor- this time last year there was a lady walking around who didn’t know she was about to save my life. Friday means something very different for her family and there are very much in my thoughts.

Lots of love Kerry xxx