Thursday, 20 August 2015

3rd and 4th calls!

George's mum again, apologies as this will be a long post but it's more for George's benefit as most bits are a blur to her!

George's 2nd call on Saturday really took its toll on her. I know we have said she has "end stage" CF but what we were dealing with here was something else, she literally could do nothing but lay slumped over her hospital tray on a pillow and couldn't even hold a conversation or lie back on her bed. As the day progressed her sats dropped and heart rate started to again creep up towards 140bpm

Next day was more of the same and as the afternoon progressed we became more and more anxious as her sats continued to decline along with her bp and heart rate remained high, she was becoming quite unresponsive other than the odd thumbs up when asked a question. Later in the afternoon the Drs came to see her as her sats were again dropping and her oxygen was increased to 15litres and Echo, X-ray and ecg's were done to see what was going on. It was discovered that she had fluid around her heart but the Drs thought the main problem was the infection in her poor lungs. She was asking for almost hourly nebs to try and relieve her breathing as she was just not able to relax.

Next morning she was feeling a little better and around 10 her lovely consultant Simona came in with another surgeon to say there was another chance of lungs and their team were off to see if they were suitable for her, another patient had been brought in as back up.
Again we had the process of preparing for surgery which was exhausting, it involes washing from head to toe in surgical wash and while on bipap with a raging temperature and attached to various ivs constantly for antibiotics and blood thinners was hard beyond belief even with my help she struggled. Then then long wait continued. Hour later the surgeon returned to say that the lungs were simply not the right size for George and as she had also to recover from heart surgery after transplant it was just too risky to reduce their size for her but they would still be transplanted to another patient which really makes the disappointment so much easier to take.

Next morning I had a text from George at 6am to say she was awake and wanted a thai curry for breakfast so I got to her room as soon as I could where she was fast asleepshe was then fast asleep  so I chatted with her lovely nurse and got her morning tablets and nebs ready and mentioned  that I would heat her up her curry when she woke up. 5 minutes later her nurse and the nurse in charge asked me for a word, me bring me immediately thought I had done something wrong! They explained that the transplant coordinator was on his way to see us as in the early hours another possible pair of lungs were available. This was the 4th time we had been here so George was left to sleep while we waited for news. When she woke up and was told she was very calm as we all were we just assumed this would be another no go as with all the others and was mostly fed up that she couldn't eat.
As the morning progressed we got trickles of positive information it was again a heart beating donor so the team were already in place to check the lungs would be ok for George, the poor transplant coordinator seemed really flat out and we later discovered there were 4 transplants that went ahead at the same time so the poor man was trying to get around to 8 different people. At around 1pm Aron one of the transplant surgeons arrived to say that it was going ahead, everything was looking good and they would have George in theatre by 2 and were expecting her new organs a few hours later but they had some work to do repairing her heart before she could recieve her new lungs. Then another surgeon Bart arrived and they both had a little light heart chat with us all as George had met them both before she asked can you take pictures of her old lungs, both surgeons said they had nightmares about the lungs they remove they are so awful but promised if time permitted they would. George was started on her first blood transfusion as she was severely anaemic and would clearly be losing a lot more blood during surgery. It was so strange as when you are waiting for a transplant one of the things you can't have is blood as it raises your antibodies and makes you less suitable to find a match so all I kept thinking as the first bag went up was I hope they don't change their minds!

Next she was given her first dose of immunosuppressants so this is when we all knew it was really happening and it all became a bit surreal, the theatre staff came and we all went off to theatre reception but not before she recieved lots of hugs and "good lucks" from the amazing staff on Rowan ward they really gave her a moving send off. The theatre reception room was very calming with subdued lighting and a strange fish tank, she saw the aneathiatist and we were left to say our goodbyes and she was taken into theatre or her new lungs.

Since George was first listed for transplant I've have always thought the hardest part for me would be while she was actually in theatre and I expected I wouldn't be able to leave the hospital grounds and would be an absolute wreck until the operation was over but it wasn't like that at all,  lee and I both left and went for lunch and then met close family and a very good friend of George's in the pub next yo the hospital around 7(not because we were having a great time drinking I hasten to add but anyone who knows Harefield hospital will know that after 7 when the restaurant closes there is no where to sit or get a coffee) we were all surprisingly calm chatting about some of George's antics over the years until about 10pm when lee and I both became very edgy as we knew we should be hearing some news soon so we headed back to the hospital to wait for a call. It was just before midnight when lee took the call to say she was out of theatre and we could go and see her, we couldn't get to ITU fast enough!

We were taken to a family room where her surgeon Bart explained how her surgery had gone. It took them as long to remove the stent from her heart as it did to do her lung transplant and they hadn't repaired her faulty heart valve as they thought it was safer to leave it alone and would have to see how she gets on in the future. Her lungs were about as bad as they get in patients with cystic fibrosis and were completely stuck to her chest wall, removing them had been a very difficult procedure. Due to that and the fact that she had had to have lung reduction they had problems stopping her bleeding and we were warned they would have to see how she got on overnight but felt they had done all they could. He was so lovely explaining everything so we could understand and considering he had been in theatre for hours and must have been exhausted he made us feel he had all the time in the world to answer our questions and told us he had taken a photo of her old lungs she was so desperate to see( so look forward to that when she takes over) He then took us in to see George.

Although she had been in ITU before this was completely different, it was like walking into some sort of space station, she was in an isolation room and had whole bank of ivs going through her, there was a line attached to a monitor straight into her heart, a ventilator, 4 chest drains and a strange machine that was pumping some kind of gas into her new lungs, the lovely Bart did explain what all of this was doing but by this point I was completely unable to register what he was saying. She just looked so different, her eyes and face were swollen and she just looked so fragile attached to all this equipment. We then left and hoped we wouldn't get a call in the night to say she was back in theatre. It's very strange when someone is in intensive care you go to bed every night hoping that you have no calls and every morning everyone waits in a small conservatory at 11 and then you have to buzz through to see if you can come in, often you are told you will have to wait but not told why and in my head it was always because something awful had happened when in reality they were just carrying out a routine procedure but looking at everyone's faces when they were told to wait I'm guessing I'm not the only now who thought that way.

The days after this are all a bit of a blur and I know George will not appreciate that I didn't keep a close record of what happened when but it was so emotionally draining for myself and lee, probably worse for him as he was also having a daily battle with the m25. We were told after 3 days that they might try to wake her up and extubate her but she would need to show she was taking some breaths for herself in between the ventilator breathing for her, it turned out it took 2 more days for that to happen and on day 5 we walked in to find her awake for the first time and she just started crying. It was clear unlike last time when she was extubated she was still highly sedated and not really aware of what was going on. It was so strange to see the change in her breathing as she was now taking such slow breaths compared to her rapid breathing before transplant and her body temp was 35 degrees and they were wrapping her in blankets to try to warm her up where previous to transplant she had a constant very high temperature but dispute this she was doing really well and they hoped she could be moved back to Rowan ward the next day. Next morning when we arrived to see her we found her face had completely blown up literally like a balloon, one of her 2 remaining chest drains had slipped out and had pumped air into her tissues ( it's called surgical emphysema) it was so scary to see her like that but we were assured it would all be fine but would delay her transfer to HDU. During her time in ITU her 2 surgeons came in often twice a day to see her and were genuinly happy to see her begin her recovery, they are a very special bunch of people at harefield. One of the radographers who George had met several times on the ward pre transplant came to take a chest x-ray and said she was really sad to have to see her like this back in ITU which I didn't really register, then she heard me talking to her nurse and got quite tearful as she hadn't realised she had had her transplant just thought she was in ITU as she was declining she was so happy she had her new lungs, such a lovely lady. 

1 comment:

  1. Hi! I had my double lung transplant for cf on 18 Aug 2015 at Harefield. They did 4 ops that night. Mine started at just after 7pm. I have been home a few days.Was that the same night? Ginny x