Another year gone (tempted to say good riddance), but we are ready to welcome 2021.
I wish that all of us have a better 2021 than they had in 2020.
It is a difficult journey for us and our families, either hoping for a quick transplant or a long, asymptomatic
life as possible and dealing with whatever arises.
I hope that you get good news about your health, and that if you are #1 on the list, that your transplant happens before you know it.
A very Happy New Year’s Day to all the group here. We have much to be thankful for amidst the suffering associated with PSC for you as a patient and for your families. I trust this year will be filled with rich blessings for each of you and that we will see breakthroughs in the medical world in the fight against PSC.
For those of you on the transplant list, don’t give up hope. Keep living your life to the fullest as you wait for that perfect match for you. We as moderators are here for you so don’t hesitate to ask any questions that come to your mind. We have walked where you are walking and want to help you through the difficult challenges ahead you may face with PSC.
I trust everyone has a wonderful New Year’s Day today!
PSC 2011 / Transplant 2015
Although 2020 was harrowing at times a positive for me was that I got a 2nd liver transplant in July, during the 1st full lockdown. Due to Covid restrictions it was extra tough. I was dropped off at Addenbrookes A&E alone literally on deaths door. I obviously had no visitors and had to go to the operating theatre without saying goodbye to family, I didn’t know if I’d ever see anyone again. Recovery in hospital without visitors was particularly difficult, especially when I suffered early rejection. I’d had no face to face hospital check ups for months, I kept saying on the phone I felt like I was dying but unless someone actually sees you they can’t tell the severity of your suffering. I’d been told I’d been moved to the priority list but when I was finally seen by Consultants the day my family dropped me off (they knew I was dying), they were shocked at just how ill I was and I went straight on the urgent list. I’d been in and out of various other hospitals 4 times during the 1st lockdown with severe cholangitis, which eventually became untreatable. Transplants are still going ahead. Believe me, I know how terrifying the wait is but there is hope out there. I was surprised at just how busy the transplant ward was, transplant recipients leaving and new patients coming in because a donor had been found. Good luck to anyone reading this that is personally waiting for a new liver, or knows of someone who is.
I’m so proud of you and I surely hope you are too. My goodness. I don’t know death’ doorstep well, personally, but having been here with another as a caregiver for PSC transplant versus a patient, death’s door is rarely far when our opportunity finally comes.
Blessings to you and I hope that as time rolls on you continue to post about what I consider insanely Heroic and Strong and a great example that We Do have it in us to Fight this bastard of a disease. You certainly gave me a shot of - I make it or not, today I will go down fighting.
Happy New Year to you! I am doing well overall, just riding it out, so this post is All for You. Proud and encouraged.
Jojo, that sounds like one heck of a fight.
Glad you’re still alive and kicking.
Thank you for your kind words Jennifer. It’s obviously been tough but I’m stubborn. I wear New Rock boots, heavy leather studded boots and I’m often being told I’m as tough as those . I was initially diagnosed with auto immune hepatitis at 21, a few years later I got PSC. I’m now 49 so have been fighting this for 28 years. I had a roux loop transplant, I think all PSC patients have this, please correct me if I’m wrong. I had pain in my side, was told I had stones. I asked if it was gallstones, they laughed saying ‘err no you don’t have a gall bladder anymore’. The stones were in my 1st transplanted liver. I then found out they remove the gall bladder of all liver transplant patients, I had no idea. Due to my PSC being so invasive they also had to remove part of my intestines. The 1st transplant made me diabetic, that’s still the case and I now suffer with pancreatitis. I’m not saying that for pity, I’m still here and very very grateful that I am. I wish you well for this year and hope it’s kind to you