This and That and Talk - My Transplant

@rosemarya Hi Rosemary. Well after the 3 surgeries last month I'm back to hospital again tomorrow morning. Numbers are trending too high again and they believe blocked bile ducts are the reason this time. I looked into this and apparently almost 50% of liver transplant patients go through the same thing. I am just sharing my experiences so that others can be aware that once the transplant is done there can be all sorts of complications. Some people will have none. So far angioplast, artery repair, type 2 diabetes and blocked bile ducts have been on my list. Every stage is a step forward though.

My transplant journey had plenty of twists and turns also. At the very outset my pre-coordinator told me that my transplant was not a cure all. It would be an exchange of one set of problems for another. I came through the surgery with flying colors. I was out of the hospital in 5 days thinking “ that wasn’t as bad as I thought it would be “. My first setback came when I came down with CMV. I used to describe my symptoms as having mono on steroids. We worked our way through that and I thought I was in the clear. Then came the big one GVHD. There is nothing that will scare you more than going online and reading the medical studies on your condition or having your medical team tell you it’s a condition so rare in solid organ transplants that they don’t know how to test for confirmation or even how to treat it. All you can do at that point is trust your team. So there will be setbacks and there will be good days & bad days and eventually things will calm down & it will be smooth sailing. Keep your spirits up and maintain a positive attitude.

@rosemarya Hi Rosemary. Well after the 3 surgeries last month I'm back to hospital again tomorrow morning. Numbers are trending too high again and they believe blocked bile ducts are the reason this time. I looked into this and apparently almost 50% of liver transplant patients go through the same thing. I am just sharing my experiences so that others can be aware that once the transplant is done there can be all sorts of complications. Some people will have none. So far angioplast, artery repair, type 2 diabetes and blocked bile ducts have been on my list. Every stage is a step forward though.

@rosemarya @contentandwell @jeanne5009 Since my last post I've had the ERCP procedure (scope to insert stent to unblock bile duct) and it failed. They managed to rattle my pancreas which ended up with me having pancreatitis. The symptons being severe nausea, vomiting and pain. I was unable to hold anything down including my immunosuppresents and other meds. I've been back in hospital since last Thursday waiting for this to be resolved. I will be scheduled for another ERCP to try and get the stent in again. 🤞🤞that it works this time and that I don't get pancreatitis again. Hopefully soon I'll be on the right track. I WILL SURVIVE! Lol...new mantra.

@rosemarya @contentandwell @jeanne5009 Since my last post I've had the ERCP procedure (scope to insert stent to unblock bile duct) and it failed. They managed to rattle my pancreas which ended up with me having pancreatitis. The symptons being severe nausea, vomiting and pain. I was unable to hold anything down including my immunosuppresents and other meds. I've been back in hospital since last Thursday waiting for this to be resolved. I will be scheduled for another ERCP to try and get the stent in again. 🤞🤞that it works this time and that I don't get pancreatitis again. Hopefully soon I'll be on the right track. I WILL SURVIVE! Lol...new mantra.

Gaylea, It is nice to hear from you. I do wish the circumstances were different, but they will be soon.
I admire your attitude and new mantra! My belief is that it be the strength that your body needs to keep recovering. My husband and i were told to expect 'bumps' along the way, and that is how we always look at any complicating factor. I have learned that sometimes what is a major thing for me, is actually a routine procedure for the experts. So even if something comes out with unexpected results they know how to proceed.

How do you feel now? Are you able to get out of bed while waiting for the next ERCP?
I wish I could come by and sit with you for a while, I thing we would have lots to talk about! Have you ever heard anything from @parmcat about the liver transplant support group he was starting? That would be so convenient for you.

If you want some good, non-transplant conversation to occupy your mind and promote your positivity, I recommend the following discussions. Both are in Just Want to TaltkDiscussions:
-Gratitude Discussion Group - I think you will already know some of the members
https://connect.mayoclinic.org/discussion/gratitude-discussion-group/?orderby=DESC#thread-new-comment
-Art for Healing
https://connect.mayoclinic.org/discussion/art-for-healing/

I look forward to your next update. Hugs and prayers.

@des46893 It is good to be aware of the potential problems, but also to keep in mind that those problems are less frequent than having everything go successfully. As you said, GVHD is apparently very rare, and I had not heard of CMV either.
Things went along better than I ever imagined when I had my liver transplant. I thought being older (69 at the time of transplant) that I might have more problems than I did but I was great, very quickly.
@gaylea1 I am sure these bumps in the road will get over quickly and things will be smooth sailing after that. Keep us informed.
JK

@gaylea1 I didn't have many of your complications, but the diabetes one is pretty common I think due to prednisone. I had to be on insulin for a while until they decreased my prednisone dosage.
I hope the bile duct problem is easily resolved. Looking forward to hearing that that everything is A-ok.
JK