Liver transplant - Let's support each other

Hellooo everyone. I miss u all
I want to have coffee with all of u.NOW ! I believe if we lived near each other we would b really good friends, or good drinking buddies...haha kidding.
Well up date on my trip to the hospital in Feb 7 could not get the drug eversheld cause I had a fourth shot of phyizer I know spell wrong .I had a blood test last Saturday, my result for covid antibodies came back very high.
I was so excited...Yahoo..guess the forth shot did the trick!! When I was getting my transplant all I was told was the 33 yr old man was brain dead
And family donated all organs.
Yes I felt sad for them, but glad they were so generous by donating to make life better for a lot of people . Pass it on..is that not what we r suppose to do with this life? Do not feel guilt.
I do keep in mind this person who donated that I live a good life.happy life.grateful life and healthy not only for me but To honor him by doing so

@digibson, I really enjoy spending time with you and with everyone on Connect. Where else can anyone be so lucky to be surrounded by such wonderful people to share medical experiences and support each other!
I hope the CT produced some good information. Waiting for results is pure misery!
My labs are every 3 months. CBC (complete blood count), C-Pan (complete metabolic panel, and a 3rd vial for my antirejection med (Tacrolimus) level. During my annual review at Mayo, there are many more. I had them drawn on Monday and I am happy with them. They have been sent to Mayo for my records and for any medicine adjustments.
Diane, I don't stress over labs anymore (13 years). And there is always a bit of uncertainty waiting for test results. I'm sending prayers. My laptop battery is dying, so gotta go. I'll be waiting to near about the results.

@cybele65, Good news/bad news - That is definitely what I remember about my waiting time.
I hope that you get some helpful information as a result of the scan next week. Are you able to walk and get some exercise with the ankle, leg, feet swelling? Does it help if you elevate your legs when sitting?

@marinab, I'm happy that he has been able to make his decision. I imagine that this has to be a relief to have taken that step. However, I am so sorry that he now has to wait. It's probably not much comfort, but he is not alone with having a delayed surgery due to a covid surge.
I was looking at some old notes today, and saw that I had gained 7 1/2 inches on my waist before my 1st paracentesis. I don't know how much fluid was drained. But I remember the discomfort with the fluid. Is your husband going to be able to get the fluid drained when he needs it during this delay?

@rosemarya He has dediced he wants to have the TIPS. Was hoping it woudl happen within the next 10 days but because of a covid surge here, the hospital will get back to us toconfirm a date, Will keep you posted once he goes through with it.

An update about the TIPS procedure. After the procedure I started gaining weight again (about 20 pounds) and was really bummed out. I had 5 liters taken off and was kind of shocked there was not more. Where was the extra weight coming from? I took a good look at my sodium intake and decided to start keeping a daily log of what I ate and the sodium for each item. (started keeping track of protein intake on the same log) The weight gain slowed down considerably and I am now holding at 220 pounds for the last 7 days. (normal for me is 200 pounds) I decided to keep my sodium intake at 1,500 mg a day max.
Well, I figured out where the extra weight is coming from. I think I have a few pounds of ascites but the new problem is swelling in my legs, ankles and feet. I have an appointment next week with I.R. for a scan to see what is going on in there.
The good news, my meld score has dropped by another 2 points. It is at 12 now.
The bad news, my meld score has dropped by another 2 points.

Thanks for keeping tabs on everyone Rosemary. I do think about these people and wonder how they are.

As for me I had a CT today to track the liver tumors. Praying all is still well, for almost a year now (since my 2nd Y90 shoot) they appear dead on the scans and no new ones popping up. I have liver labs on Thursday (CBC, MELD Score, AFP tumor marker). So far they are not recommending transplant saying they would do more harm than good. In fact I'd like to put this question out to the group. I'm a little worried because I turn 70 in August and at 70 you kind of age out. My liver enzymes are real normal, MELD score it 7, have small varices but no bleeds, ascites well controlled with meds. I could qualify for transplant because of the cirrhosis and cancer. But with all that said I would have to go for transplant now or never because of the age thing. Could it all go bad at next year. I kind of operate with the opinion as long as I don't do anything to further damage my liver it will all stay the same. I was able to clear the HEP C that caused the damage and quit what little drinking I was doing. Just wonder ... hum.

What regular labs are you having taken Rosemary and how often do you get them. Please let us know your results. Do you ever get over the frustration of testing then waiting on results? There's always a bit of fear waiting for the results. I do know my condition is in God's hands and do believe if faith, not fear and that helps.

Thanks again for checking in on everyone! You're so kind hearted.

Diane

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?

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

@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?