Liver transplant - Let's support each other

Posted by lmctif @lmctif, Oct 29, 2018

What topics do people who are waiting for a liver transplant want to talk about? Who has had a liver transplant and wants to talk about?

Interested in more discussions like this? Go to the Transplants Support Group.

@athenalee

Hey there woman! It’s so good to hear from you! Glad you have antibodies to Covid. You missed my dreadful bout with Covid. I’m supposedly protected now for 3-6 months from the monoclonal antibodies I received. I now walk into my public facing office, double masked 😷, close my door, turn on my new air purifier, and remain masked. Ugh.

Perhaps this summer we can meet halfway (CT?) for coffee!

Be well! Athena

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Oh no! U poor baby..thank God u recovered😊yes CT sounds good..I too wish and can't wait till we let upon the masks....stay well

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@rosemarya

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?

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Your the best mentor Rosemary and I truly appreciate you! I had my labs taken on Valentines Day too. My awesome new liver is perfect! I get to reduce Tacrolimus to 2 mg AM & PM!! 👏👏👏

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@marinab

@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,

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Mr best wishes to your husband on getting the TIPS procedure. Please let us know how things go for him. And, thank you for being a wonderful caregiver!

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@rosemarya

@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?

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I couldn’t fit into my shoes and went from size small to stretchy large pants! Never having been pregnant, I had new found respect for all moms and what they go through to carry a baby in their belly!

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@jackie421blfdgurl

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

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Hey there woman! It’s so good to hear from you! Glad you have antibodies to Covid. You missed my dreadful bout with Covid. I’m supposedly protected now for 3-6 months from the monoclonal antibodies I received. I now walk into my public facing office, double masked 😷, close my door, turn on my new air purifier, and remain masked. Ugh.

Perhaps this summer we can meet halfway (CT?) for coffee!

Be well! Athena

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@cybele65

I am able to get around but it feels like I am walking on a cushion of water. I had another paracenteses yesterday because I gained another 6 pounds in less that a week. They took off 5.8 liters and said I had significant edema. The swelling went down in my feet today and I was able to knock a lot of things off my to do list. However, after a busy day my feet are starting to swell again. I do not understand why people would want the TIPS procedure if the only thing it does is divert fluid from the abdomen to the legs and feet. At least the fluid can be drained from the abdomen if it had just been left alone. The doctors said that for a lot of people the ascites goes away altogether. I must not be one of those lucky people.

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@cybele65, I nearly died from bursting varices that I had tied off. These were repaired. A day after I was released from the hospital they burst again. I was again helicoptered up to the regional hospital, intubated, and went through hours of surgery to try to stopped the upper GI bleed caused by cascading bursting varices. I was brought back to ICU and awakened long enough to be told I would bleed to death if I didn’t have the TIPS procedure.

The procedure saved my life. It does much more than divert fluid. It stops varices from forming in one’s esophagus that may burst and cause internal bleeding.

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@rosemarya

@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?

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I am able to get around but it feels like I am walking on a cushion of water. I had another paracenteses yesterday because I gained another 6 pounds in less that a week. They took off 5.8 liters and said I had significant edema. The swelling went down in my feet today and I was able to knock a lot of things off my to do list. However, after a busy day my feet are starting to swell again. I do not understand why people would want the TIPS procedure if the only thing it does is divert fluid from the abdomen to the legs and feet. At least the fluid can be drained from the abdomen if it had just been left alone. The doctors said that for a lot of people the ascites goes away altogether. I must not be one of those lucky people.

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@marinab

@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,

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@marinab, Thanks for the reply. It sounds as if you are set for the best of care in the midst of the worst of circumstances.
You are in my thoughts and I am rooting for your husband.

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@rosemarya

@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?

Jump to this post

@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,

REPLY
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