Kidney/Pancreas
I lost my Pancreas...
Hi All,
Its been a while since I've contributed, but I feel like I need to share and this was the only place I felt that anyone would understand.
About 6 weeks ago I had my graft pancreas removed due to increasing problems with pancreatitis and rejection. There was also issues with leakage and further biopsies revealed fibroids and necrotic tissues. Overall, looks like my pancreas REALLY didn't like me as a host! My kidney, from the same donor, has been chugging along fine through all this.
Trouble started about a year ago when I had my first bout of pancreatitis. Literally the WORST pain I've ever felt. It was quick onset, and could be fixed with fasting, opioids and gravol over a couple of days admission to the hospital. After a couple of bouts of this, I then developed a rather severe case of rejection that hospitalized me for a month, requiring multiple treatments that made me weak and vulnerable.
After the rejection bout, I was in and out of the hospital 3 times and then they decided to remove my pancreas because I was also developing abcesses. This all happened AFTER the first year, in which I had no problem, and my islet cells were never compromised through all this.
Now I am a diabetic again. I am depressed about the situation. Every day is a struggle. My insulin sensitivity is all over the place, leaving me to ride BG roller coasters for full days at a time. I am weak from all the hospitalization so everything hurts so much more, and I'm just sick and tired of feeling sick and tired.
I'm sorry this post is such a downer. Silver lining is that my team said in a few months I can requalify and they will get me on the transplant list for a pancreas only. Question to the group: HAs anyone been through the situation of having a graft removed, and what was your thought process whether you opted to get a new organ or live without (obviously this doesnt apply to most organs, but I technically have a choice with the pancreas).
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I'm sorry that I don't have experience with pancreas transplants (I was kidney only), but just wanted to send you some virtual hugs. That seriously sucks. I hope you find the clarity you're looking for in making those decisions. For me, when I'm stuck deciding how to move forward, I remind myself that there isn't a right or wrong answer. There's only the decision that I make right for me. Sending love!
Transplant Patient
@Care_mass I am sooo sorry - I don’t have the words - I just feel for you and wish I could fix this for you. Can you eventually get a pancreas only transplant? I would do that for sure / get relisted and believe in the future yet again. Hugs
Thanks so much for the love. @Karin my team is committed to helping me get relisted, they are sure I will be an excellent candidate, but I need to regain all the weight I lost (20 lbs I did not have to lose in the first place) and general strength.
I very fortunate to have a super committed team to work with, and I am sure I will have another transplant. I'm just so outstandingly tired right now.
Transplant Patient
@Care_mass I see you, friend. That is so, so hard. Yes it's important to look forward to the future and another transplant, but like you said right now you're tired. Right now it's not ok, and it's ok that it's not ok. You are allowed to feel all the feelings.
We are here for you every step of the way. We will believe for you when you cannot believe for yourself
I am so sorry. I am thankful that you shared with us so we can support you. Lean on this great community 💙
I am so appreciative of the heartfelt support form you all. Although I have a strong support network, there is undeniable value in connecting with those who have first hand experience with the fears and trauma that can accompany Transplant issues.
Transplant Patient
@Care_mass - I'm so sorry this happenned to you - it's lot to deal with. I can't even relate to losing one of the 2 transplanted organs from the same #donorhero sad 😢
Thank you for sharing. Sending you #positivevibes, #prayers.
Good luck on your #transplantjourney 🍀