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.

@tjgisewhite

@brianna yes that was very quick. I went home after just 4 days. I was the poster child for liver transplant patients at Mayo Jacksonville :). What I did not expect during my recovery was being numb in my abdomen where my new liver is. I will be numb there for the rest of my life.

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One advantage of the numbness is that my daily insulin shots can be administered pain free

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My liver/kidney transplant was 11 yeas ago this month. My annual review has been postponed, and I am doing extremely well. Currently, I am blessed to be receiving phone calls from friends, some whom I haven't heard from in years, who are checking in on me. I, in turn, am thinking of all of you who have-or-will-be joining this support group.

@brianna,, I am thinking about you during these uncomfortable times. You mentioned that you were in in the process of being evaluated for a liver transplant. Has this happened or is it being put on hold until things return to normal? I am here anytime that you want to ask questions or to chat. How can I halp you while you wait for answers?

@manuelhsilva, I have a few free minutes this morning, and I want to drop in and ask how things are going? Are you currently on the list for a liver transplant? What questions would you like to ask?

@joanaiken, I want to say, Hi.

@khh, How are you? Have you made any progess in findind any solutions for your situation? Have you been able to conference with a doctor?

@tjgisewhite, As you continue to move beyond recovery, how are you getting on in the midst of this pandemic?

@beckyy39, I am thinking of you as you proceed one day at a time.

@seahorstmayo, @racing212, @suzeaz, @gaylea1, @contentandwell, @benlam11, @jeanne5009, @stella25, @biteme, @corn50, @1bigblacksuv, @lisamb, @jodeej, @ca426, @shelly63, and all, How are you? What has been happening healthwise since we last met here?

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@rosemarya

My liver/kidney transplant was 11 yeas ago this month. My annual review has been postponed, and I am doing extremely well. Currently, I am blessed to be receiving phone calls from friends, some whom I haven't heard from in years, who are checking in on me. I, in turn, am thinking of all of you who have-or-will-be joining this support group.

@brianna,, I am thinking about you during these uncomfortable times. You mentioned that you were in in the process of being evaluated for a liver transplant. Has this happened or is it being put on hold until things return to normal? I am here anytime that you want to ask questions or to chat. How can I halp you while you wait for answers?

@manuelhsilva, I have a few free minutes this morning, and I want to drop in and ask how things are going? Are you currently on the list for a liver transplant? What questions would you like to ask?

@joanaiken, I want to say, Hi.

@khh, How are you? Have you made any progess in findind any solutions for your situation? Have you been able to conference with a doctor?

@tjgisewhite, As you continue to move beyond recovery, how are you getting on in the midst of this pandemic?

@beckyy39, I am thinking of you as you proceed one day at a time.

@seahorstmayo, @racing212, @suzeaz, @gaylea1, @contentandwell, @benlam11, @jeanne5009, @stella25, @biteme, @corn50, @1bigblacksuv, @lisamb, @jodeej, @ca426, @shelly63, and all, How are you? What has been happening healthwise since we last met here?

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I'm doing fairly well. I was in hospital for a week with urinary track infection

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@rosemarya

My liver/kidney transplant was 11 yeas ago this month. My annual review has been postponed, and I am doing extremely well. Currently, I am blessed to be receiving phone calls from friends, some whom I haven't heard from in years, who are checking in on me. I, in turn, am thinking of all of you who have-or-will-be joining this support group.

@brianna,, I am thinking about you during these uncomfortable times. You mentioned that you were in in the process of being evaluated for a liver transplant. Has this happened or is it being put on hold until things return to normal? I am here anytime that you want to ask questions or to chat. How can I halp you while you wait for answers?

@manuelhsilva, I have a few free minutes this morning, and I want to drop in and ask how things are going? Are you currently on the list for a liver transplant? What questions would you like to ask?

@joanaiken, I want to say, Hi.

@khh, How are you? Have you made any progess in findind any solutions for your situation? Have you been able to conference with a doctor?

@tjgisewhite, As you continue to move beyond recovery, how are you getting on in the midst of this pandemic?

@beckyy39, I am thinking of you as you proceed one day at a time.

@seahorstmayo, @racing212, @suzeaz, @gaylea1, @contentandwell, @benlam11, @jeanne5009, @stella25, @biteme, @corn50, @1bigblacksuv, @lisamb, @jodeej, @ca426, @shelly63, and all, How are you? What has been happening healthwise since we last met here?

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Hi @rosemarya and all! Things are staying stable here. This is doing great so far as past transplant is going. It will be 2 years for him on July 7. I have been furloughed from work so both of us are able to stay home. We order our groceries online and pick them up. We order meals to go once a week and do curbside pickup. Its working for us!

Tim's dementia/Alzheimer's is staying stable since his diagnosis last October. I'm hoping it stays this way for sometime. Fingers crossed and prayers said.

Easter Blessings to all,
JoDee

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@rosemarya

My liver/kidney transplant was 11 yeas ago this month. My annual review has been postponed, and I am doing extremely well. Currently, I am blessed to be receiving phone calls from friends, some whom I haven't heard from in years, who are checking in on me. I, in turn, am thinking of all of you who have-or-will-be joining this support group.

@brianna,, I am thinking about you during these uncomfortable times. You mentioned that you were in in the process of being evaluated for a liver transplant. Has this happened or is it being put on hold until things return to normal? I am here anytime that you want to ask questions or to chat. How can I halp you while you wait for answers?

@manuelhsilva, I have a few free minutes this morning, and I want to drop in and ask how things are going? Are you currently on the list for a liver transplant? What questions would you like to ask?

@joanaiken, I want to say, Hi.

@khh, How are you? Have you made any progess in findind any solutions for your situation? Have you been able to conference with a doctor?

@tjgisewhite, As you continue to move beyond recovery, how are you getting on in the midst of this pandemic?

@beckyy39, I am thinking of you as you proceed one day at a time.

@seahorstmayo, @racing212, @suzeaz, @gaylea1, @contentandwell, @benlam11, @jeanne5009, @stella25, @biteme, @corn50, @1bigblacksuv, @lisamb, @jodeej, @ca426, @shelly63, and all, How are you? What has been happening healthwise since we last met here?

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Hi. Thank you ! To update, I finally had an ERCP on March 18th. Five stents were placed in the bile ducts and I believe that has made a difference. Initially my whole GI tract was off kilter. I blame it on the increased bile being released. I am now back to baseline "new reality". Good news.

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@rosemarya

My liver/kidney transplant was 11 yeas ago this month. My annual review has been postponed, and I am doing extremely well. Currently, I am blessed to be receiving phone calls from friends, some whom I haven't heard from in years, who are checking in on me. I, in turn, am thinking of all of you who have-or-will-be joining this support group.

@brianna,, I am thinking about you during these uncomfortable times. You mentioned that you were in in the process of being evaluated for a liver transplant. Has this happened or is it being put on hold until things return to normal? I am here anytime that you want to ask questions or to chat. How can I halp you while you wait for answers?

@manuelhsilva, I have a few free minutes this morning, and I want to drop in and ask how things are going? Are you currently on the list for a liver transplant? What questions would you like to ask?

@joanaiken, I want to say, Hi.

@khh, How are you? Have you made any progess in findind any solutions for your situation? Have you been able to conference with a doctor?

@tjgisewhite, As you continue to move beyond recovery, how are you getting on in the midst of this pandemic?

@beckyy39, I am thinking of you as you proceed one day at a time.

@seahorstmayo, @racing212, @suzeaz, @gaylea1, @contentandwell, @benlam11, @jeanne5009, @stella25, @biteme, @corn50, @1bigblacksuv, @lisamb, @jodeej, @ca426, @shelly63, and all, How are you? What has been happening healthwise since we last met here?

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How sweet of you Rosemary to be thinking of others! My son, with PSC & listed for transplant, is holding his own. Staying positive & strong. He recently transferred his care to another transplant center. It was a bit of a process but it is complete & official as of last week. His wait time will follow him to the new center. We continue our search for a living donor & are extremely excited to be working with his wonderfully amazing new team of care providers. Wishing all a healthy, happy & blessed Easter season. May we all be safe & find peace in our pandemic isolation:-)

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@rosemarya

My liver/kidney transplant was 11 yeas ago this month. My annual review has been postponed, and I am doing extremely well. Currently, I am blessed to be receiving phone calls from friends, some whom I haven't heard from in years, who are checking in on me. I, in turn, am thinking of all of you who have-or-will-be joining this support group.

@brianna,, I am thinking about you during these uncomfortable times. You mentioned that you were in in the process of being evaluated for a liver transplant. Has this happened or is it being put on hold until things return to normal? I am here anytime that you want to ask questions or to chat. How can I halp you while you wait for answers?

@manuelhsilva, I have a few free minutes this morning, and I want to drop in and ask how things are going? Are you currently on the list for a liver transplant? What questions would you like to ask?

@joanaiken, I want to say, Hi.

@khh, How are you? Have you made any progess in findind any solutions for your situation? Have you been able to conference with a doctor?

@tjgisewhite, As you continue to move beyond recovery, how are you getting on in the midst of this pandemic?

@beckyy39, I am thinking of you as you proceed one day at a time.

@seahorstmayo, @racing212, @suzeaz, @gaylea1, @contentandwell, @benlam11, @jeanne5009, @stella25, @biteme, @corn50, @1bigblacksuv, @lisamb, @jodeej, @ca426, @shelly63, and all, How are you? What has been happening healthwise since we last met here?

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Thank you Rosemary! I'm doing alright...just setting up and going to televisits or in person visits to the specialists the team requested I get established with. Blood sugars are on a roller coaster right now though so we're working on that. With Lactulose, however, toilet paper is essential and I haven't found any online or in stores here in weeks. When it is stocked it sells out within 5-10 minutes

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Good morning Rosemary...I'm a recent liver recipient, Jan 23, 2020, recovering well. I'm 11 weeks out, my clinics have changed to video appointments, which is fine. I've been experiencing fluid on my right side, which I did discuss with my NP. I did a CT scan 3 weeks ago, my labs are great, no concern from my liver team. I'm using warm compresses, and continuing to walk daily as directed. I've been scanning the internet to see if this is common with other transplant patients. Any comments or ideas?? Thanks so much!!

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What you may experience is some small hernias along the incision. I do not have any discomfort from them.

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@jacqualin

Good morning Rosemary...I'm a recent liver recipient, Jan 23, 2020, recovering well. I'm 11 weeks out, my clinics have changed to video appointments, which is fine. I've been experiencing fluid on my right side, which I did discuss with my NP. I did a CT scan 3 weeks ago, my labs are great, no concern from my liver team. I'm using warm compresses, and continuing to walk daily as directed. I've been scanning the internet to see if this is common with other transplant patients. Any comments or ideas?? Thanks so much!!

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@jacqualin, Welcome to Connect, and congratulations on your transplant and ongoing recovery. We are so fortunate to be living in the age of technology and electronic visits, aren't we? I have not experienced an electronic visit yet.
I did not experience right side fluid after the initial removal of the transplant surgery drain tubes. At 11 weeks, your body is still healing so there could be a relationship to that. With a transplant and being immunosuppressed, things can change very quickly and I am wondering whether this has started since your 3 week old scan?
Why are you using warm compresses? Is it causing pain or discomfort?

I encourage you to make contact to your transplant team or NP (if associated with your transplant dept) and tell them about this. It is always OKAY to call them when you have questions or have any concerns. I suggest that you do it Monday morning. If you develop a temperature of 101 do not wait until Monday, instead call the after hours/emergency phone number they provided.

@jacqualin, Will you let me know what you find out after you talk to your NP on Monday?

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