We Finally Got A Liver Transplant❤️

On the 15th April 2020 we found out Jessie was in end stage liver failure, and as a family we started to discuss end of life plans. This was one of the hardest conversations we have yet to have as a family, there were lots of questions, lots of tears and lots of worries but little did we know that in under 24 hours we would get the most important call of our lives.

So, on 16th April at 8:05pm, Matthew and I, were sat on the sofa watching tv when my phone rang with no caller ID. My heart instantly sank and I picked up the phone with my hands shaking relentlessly. “Hi its the transplant coordinator from Kings College Hospital, we have a potentially Liver for Jessie, would you like to accept the offer?”, before I even had a chance to think, I had naturally responded “of course”. I was then told I had 30 minutes to get Jessie and myself ready before an ambulance would blue light us to Kings.

Matthew and I went upstairs to wake Jessie and tell him the news. To our surprise his response was “REALLY!! I’m getting a new LIVER!!”

After what felt like minutes, we arrived at Kings at 9.30 where we were told to get a good nights sleep and the surgery would take place after 8am. With a lot of tossing and turning and little sleep the next day soon arrived. The surgeons came at 2pm to share the news that it was a good match. However, the donor was a lot older than Jessie, in normal circumstances when a liver is too big they take the left lobe as this is the smaller part. But the liver Jessie was due to receive had a damaged left lobe, so the only option was a reduced right lobe (see image for more details). The surgeon had a look at Jessie to see where they would open him up, and gave us an estimated time of an 11 hour surgery.

Jessie went to surgery at 3.30pm. Everything felt like it was happening so quickly, we had gone from discussing end of life to then talking about a major operation. 7 and a half hours passed by and Jessie was on the ICU, ventilated and ready to start his recovery. Before I could go and see Jessie I was talked through the surgery with the main surgeon. He told me Jessie’s old liver was in an extremely terrible condition, it was green in places, rock hard and by the looks of it Jessie did not have long. Jessie’s surgery went well, but because the liver was much bigger than needed it meant Jessie’s abdomen was left open and unstitched, protected by a mesh layer, meaning he would need further surgery to close this up when everything had healed in a few weeks. However, Jessie still desperately needs a bowel, his bowel was stuck together, mangled and showed lack of evidence for ever being able to work. “We have bought Jessie years, but not a whole new life, he will need a bowel at some point to ever have a chance of surviving many more years.” where his words. But this is a bridge to cross at another time and our focus now was to let Jessie heal from this surgery.

Hours after surgery: the picture above was taken shortly after Jessie was on the ICU, I had seen Jessie ventilated once before so this was not a shock for me. What was a shock was the amount of lines and tubes coming out from all different parts of his body. He had 4 lines in his neck, 2 in his arms, a new Hickman line, a catheter, a drain from his liver, an NG tube and a breathing tube. He laid still for the whole night like a porcelain doll whilst everything was being pumped in and out of his body.

Day 1 of recovery: Jessie was doing well, still ventilated, but was recovering from the major surgery well. During an ultrasound they found a small blood clot in his portal vein, meaning he needed heparin (a medication used to thin the blood) in order for the blood to flow at a normal speed in and out the liver and he potentially needed surgery to remove the clot and this was a small bump in a long road of recovery. Anti-rejection medication was started immediately!

Day 2: Jessie was again doing really well, an ultrasound showed that the clot had not got worse which meant in time it would disappear. Jessie was extubated but his breathing was ropy and he still needed a small amount of help.

Day 3: Jessie’s breathing deteriorated due to fluid on his lungs, more oxygen was needed to help him breath and there was talk about re-intubating him if his breathing continued to worsen. Jessie was struggling mentally, thinking he was dying and stating he wanted to die. I was assured this was due to all the medicine he was on causing him a negative mental attitude. But the pain he was in was very real. Jessie couldn’t be left alone, anytime I tried to leave the bed side to get a drink or go to the toilet he would become hysterical.

Day 4: Mentally, Jessie was doing a lot better. He managed to get out of bed for the first time! He felt more at ease but was still in an unimaginable amount of pain, he slept lots this day and his breathing improved slightly but he was still needing support. Later in the day his oxygen requirements were reduced and we were informed we would be back on Rays Of Sunshine the next day.

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Day 5: we were finally back on the ward!! Jessie was so much better mentally as this felt like a massive milestone.

Day 6: Jessie was beginning to ask lots of questions, specifically about his liver and where it came from, how long the operation took and he was showing a lot more interest into what was going to happen. He was still on oxygen, still had a catheter and still had an NG tube and 3 lines in his neck. But he made a massive improvement and managed to get out the bed and stand up!!

Day 7: a week after the surgery!!!! Jessie was again better mentally, showing lots of improvements and started having physio to help his lungs improve! He had to blow bubbles through a tube and into water to get any fluid sat at the bottom of his lungs to move around. His catheter and NG tube were both finally removed and he managed to start walking!

Day 8: Jessie’s swelling has dramatically improved and his open wound is starting to very slowly naturally close up. He’s becoming a bit more active and interacting a lot more, he is very much more like himself. He still has a really long recovery but he is doing so so well and I am so proud of him.

I will write more information about the things I have talked about but for now this is a brief overview of the transplant process and Jessie’s immediate health.

Thanks for reading, and feel free to ask any questions❤️

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