Liver transplant - Let's support each other

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

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.

@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?

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.

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

@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?

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 understand what you are saying. I really do.
Each one of us transplant recipients, has some underlying condition that caused our liver failure. And many of us continually question our good fortune to have received our gift of a second chance. At only 6 months, you are still getting used to the idea of everything that has happened to you. Keep in mind, too, that the immunosuppressant meds can cause emotional and mental responses when the dosage is not right. I don't think you should blame yourself for not decorating for Christmas this year. I was was 8 months post transplant when I had my 1st Christmas after transplant. I did celebrate the religious traditions that are important to me, but the Decorations, gifts, Ho Ho Ho, and Santa were far from my mind. I got really annoyed when family would ask me what I wanted for Christmas. Seriously, I had already received the best gift ever with my transplant. They got mad at me when I told them that I didn't need anything. Over time, I did reach a balance and I can enjoy the festivities while honoring my donor. It will happen for you too, over time.

As for deserving that beautiful liver, Remember that You were the patient who was matched with that organ! It would not have worked well for anyone else. I think that you are wise to have chosen to work with a counselor. I hope it is helping you as you move forward. I commend you for meeting the pre transplant alcohol requirements. What kind of support do you have available to help you to stay away from alcohol?

Laura, How is your liver doing? How are you feeling? And what are some of the things that you enjoy doing since the transplant and better health?

Hello @lauraloo81,

I believe that most transplant recipients feel some sort of guilt, but for varying reasons. To start with, we’ve gone through a traumatizing illness and on top of that we have a donor organ in us (unless one had a live donor). So, of course we’re going to feel a huge emotional burden, resulting in what amounts to PTSD. I for one was never a person to cry or get overly emotional, but after my transplant, and even now, I still become emotional…which is a normal reaction, as is guilt.

Most of my guilt was due to the burden I had placed on my support people. I’m single and estranged from my family. Fortunately, I had friends who sacrificed to stay with me when I was in end stage liver disease. I too felt guilt over my donor’s death. But I know I am not responsible for his death. So, I’ve turned that guilt into being a more appreciative person, particularly in my daily remembrance of my donor, the blessings for my second chance at life, and my loving friends.

I also try to channel the blessing of my transplant into supporting others on Connect who are facing the challenges associated with their illnesses, getting prepared for their transplant, and others that I may help through my knowledge and experience. As Rosemary says, donor organs typically have to match their recipients. And, we as recipients had to be ready for the transplant surgery and available at the moment we get the call.

It is of course a travesty that not everyone who is on the waitlist receives a donor organ. My role as an organ recipient, however, is to be forever grateful and to do the best I possibly can to eat well, exercise, remain positive, and take care of my awesome new liver.

I’m glad you are seeing a therapist. I also found my transplant team social worker to be very insightful. I hope you will also find the Connect community to be very supportive.

Be well, Athena

2022 has already been busy in this group. I might need to add some extra chairs around our virtual table chat!
This morning, I decided to bring you who posted in January together to meet each other and to extend invitation to anybody reading this! You are always Welcome.

@btg, How's the planning for testing going? Has it been scheduled yet?

@marinab, Your husband was in the process of deciding on the TIPS procedure. Has he made any decision? How is he doing?

@lcd, Just checking in to say, Hi. Thanks for the positive vibes! Any updates that you want to share?

@digibson, I hope that you are doing okay. What is the transplant team saying about a liver transplant in your future?

@cybele65, How are you feeling after your recent TIPS procedure? Are you noticing any decrease in ascites

@lauraloo81, I'm happy that you have recently joined us on Connect! Do you have anything fun planned for today?

@athenalee, Thanks for sharing your wisdom and positivity to the discussion.

Me - What am I up to: I had my routine labs drawn yesterday. A treat that my husband and I allow ourselves is a stop at local bakery!! Yummy way to start yesterday Valentine's Day. Did you know that yesterday was Donor Appreciation Day?