***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.
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.
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!
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.”
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