Liver transplant - Let's support each other

I find it hard to put into words, but I mostly feel guilty, because I received my liver due to cirrhosis from being an alcoholic. I feel someone coud be doing better than me, and be enjoying this more so- than an addict ever could.
So now I have way more pressure to not only enjoy my second chance to it's fullest, but the pressure to not fall back into the disease.
Does that make sense?
I didn't even put up a tree last year as I felt bad for celebrating Christmas, when the family was not doubt struggling.
I have a therapist, but am having trouble finding people that can actually relate to all these physical and mental changes. So I am happy to have stumbled upon these pages.

@lauraloo81, I did have a feeling of guilt after my transplant. I realized it immediately after surgery.
I can remember seeing smiles on the faces of my husband and sons as the entered my hospital room after my surgery, and I could see the lightness in their step. Best of all was the ability to laugh together again! But - I also remember how, in an instant the mood changed as tears filled my eyes and I thought of another family, my donor's family, together in a completely different setting.
It took me years to learn that I was not alone with that feeling.

I also felt a guilt/regret because I (60 yrs old) got my transplant while someone else younger that I did not. Common sense about correct match did not enter my mind at that time.

Here are some discussions where members do talk about their own feelings of sadness/guilt after their transplants.
Your gratitude changes because of organ failure...
https://connect.mayoclinic.org/discussion/your-gratitude-changes-becuase-of-organ-faliure/
Writing to Your Donor's Family.
https://connect.mayoclinic.org/discussion/writing-to-your-donors-family/
Laura, Is this the kind of regret that you mean? If you are comfortable to do so, would you share how you feel?

Does anyone have recipient regret? Like the "why me?" I received my transplant August 6th 2021, so I am 6 months post Op. I also joined the "why am I farting so much?" And am glad to know I am not alone in that. =)
I am so happy I found these pages, and know that others are going through the same.
Laura. Grateful Liver recipient

Tips are monitored by a yearly MRI which measures blood flow velocity and is compared to previous tests. Any changes would require Tips adjustments. There is no real way to “monitor” any infections. I have had 4 infections from bile issues within the liver, but through scans with dye and actually procedures to view internally the Tips area, it was determined this was not the source of infections. I do not take any meds for this issue, but naturally need to keep blood pressure intact - the varaces in esophagus are the weakest link when there is portal tension/pressure.

@lcd, Welcome to Connect and thank you for sharing your experience with the TIPs procedure. I had ascites and one incident of bleeding varices before my transplant. My transplant was 12 years ago, and I think I remember taking a diuretic and blood pressure meds to help control what I was dealing with. I was also on dialysis for sudden kidney failure while my cirrhosis got worse.

Do you need to take any meds for the portal pressure, or does the TIPs work by itself? How are you monitored for infections related the TIPs?

No, in July 2020 my illness progressed to the point that I was placed on the transplant waiting list. I was very fortunate to receive a liver transplant that August.

I know it’s a struggle and long journey for you and your husband. I’m hopeful your husband can receive the opportunity for a transplant.

@colleenyoung thank you! - I will check that out.

Thank you for your feedback @athenalee . So you currently have ascites? Do you have to have the fluid drained and if so how often? We are hoping that tips will lessen the fluid build up - my husband has had ascites for 4 years now and currently taps every month at the hospital.

No, I had no issues following the procedure. As I was in stage 3 when I had the procedure, I did go into end stage about 7 months later. But, it was definitely a blessing for me to have the procedure so that I didn’t have anymore issues with varices. And, I didn’t start developing ascites for about 6 months after the procedure. My liver cirrhosis was caused by an autoimmune disease that had been misdiagnosed and well advanced by the time it had caused stage 3 liver cirrhosis, along with damage to my bile ducts, spleen, and gallbladder.

My understanding is that a majority, up to 80% or so,, but not all patients with liver cirrhosis who have the TIPS procedure will see a reduction in ascites. You may find some relief over time. Everybody has different experiences. I had the procedure when I was in stage 3 liver cirrhosis. My condition remained stable for about 6 months, but as I entered into end stage, I developed substantial issues with ascites, fatigue, and brain fog.

Your dietary changes are definitely a great undertaking for helping your body during this time. Walking is good to help keep up your strength. Please try to remain positive. I know it’s a challenge. Be sure to contact your liver doctor and express your concerns to them.