I hope you are all keeping well?
*long email and detailed so please skip if don't want to read*
I HAVE HAD MY TRANSPLANT!!!!
They definitely told me that no two people are the same with a transplant and I was one of those people. Before you read this, everyone who I was in hospital with were what seems a more typical in and out of hospital after 10-14 days.
I had my actual transplant on 5 Jan 2017 and was in hospital a total of 45 days and came home last Friday 10th Feb. It's definitely been a journey and I'm lucky to be alive. I nearly died as I was admitted on 29th Dec 2016 and prioritised on the list (bilirubin reaching nearly 600) As you know, I had been on list for 4 months, attending routine monthly clinic Appts and just waiting. I became very poorly literally overnight - swelling, the jaundice, pains and needing help and ambulanced to hospital.
I'm leaving lots details out as don't want to waffle on but they prioritised me to top of list as it really was a race against time for me to get a liver.
I was in hospital for New Year's Eve and my 42 birthday before my transplant but I was so sick that I didn't care. They were just days of the week. I just knew I needed help.
Anyway, operation was 8.5 hours and my co-ordinator was fantastic and kept my very worried family updated. They saw me in intensive care and I was stable and they were told to go back to hotel after being awake more than 24 hours.....,they were then telephoned as I was rushed back to theatre 6 hours later as they thought I had a blood clot. Thank god it was a shadow and they opened me up and gave me a "flush" to be sure.
A lot of people I met in hospital in a "normal" transplant turnaround were in ITU for 2-3 days. Not me, I was there for 2 weeks and very unwell.
I left ITU and went back to the ward where I was for 7 days before my transplant where I remained for the further 3 weeks. I was very poorly going back there and had an impressive 20 litres of fluid in my body but with fight and determination I got back on my feet with physio, resting and getting strong I did it.
Everyone knew me in there from professors, surgeons, heptologists, nurses, tea lady etc. The professors and top docs all told me after 3 weeks how very lucky I was to be alive and how desperate things were becoming for me.
I'm at home now, weak, tired, still loosing the swelling and weeing lots lol. Transplant was 6 weeks ago on Thursday and I'm 3 stone lighter! They told me to "eat like a pig" for 3 months to put weight on. A lot of my weight loss is due to the massive weight gain I had the week before op as I gained 2 stone in 1 week in fluid!
I'm now focusing on getting better as I have a bigger recovery ahead of me than some people. I don't care how long it takes me to recovery - even if it's the whole of 2017. I know I'm so lucky to be alive and forever grateful to my donor and their family for saving my life.
My family told me that within the first 2 days my bilirubin went from nearer 600 to 185 - how amazing is that. I am now PINK and not yellow and when I left hospital it had dropped to a reading of 27!!!!! I have white eyes and really soft skin and the strongest nails ever.
Hope this email has not been too much of a shock to read, know it isn't an easy read but......I'm here, I'm alive, I made it, I was strong, I was determined and I know I'm a fighter and I never ever gave up on my life no matter how close it came at time.
It goes to show to our forum family of people who have had their transplant or to people who are still waiting, we are all strong. I wanted to share my "not typical" experience with you as I am another successful person on our forum to receive a liver transplant. Keep fighting, believing and staying strong. I will stay on forum and keep supporting everyone and now asking questions now I've had my transplant.
Not even the queen could get a better birthday present than me, I was 41 arriving at hospital....turned 42 in hospital on 2/1/17 and 3 days later on 5/1/17 - I received the greatest most precious birthday present from my donor and their family. Forever grateful ✨
Much love to you all. Nicki x