Liver transplant - Let's support each other

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?

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?

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?

@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

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

@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 We don't know for sure if TIPs will definitely be delayed but suspect so. We are following up with them tomorrow - they are aware that he will need fluid draining if TIPs procedure is delayed and said they will accommodate that. Fortunately there is a special ward at the hospital just for liver transplant patients and since he is listed he has access to that ward,