1. < Transplants

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.

joanaiken | @joanaiken | Mar 1, 2020
In reply to @rosemarya "@suzeaz, I also use age as a reason for many things! You make a good point..." + (show)
@rosemarya

@suzeaz, I also use age as a reason for many things! You make a good point that we should talk to our doctors, especially when taking these medicines, about our bothersome symptoms. Thank you for the reminder.
Sometimes I have been told that it (the symptom) is something I will adjust to, ot that I just need to live with, but at least I know that my transplanted organs are being cared for.
When my prograf is out of range I usually feel anxious and jittery and have a difficult time focusing on a task. I remember a time when I could not pull my car into one of 3 connected parking spaces in a parking lot. Another time I nearly went thru a red light at a busy intersection. Fortunately my husband was there to take over the driving. I called my transplant nurse as soon as the office opened. Labs and reduction of prograf came next.
Let us know what your doctor suggests.

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Yes, I also have had issues with focus. Having been on Prograf since the liver transplant and attributed some of those issues with a slight cognitive decline. My family, friends and I noticed a significant improvement with the dramatic drop in dosage.

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JK | @contentandwell | Mar 1, 2020
In reply to @gaylea1 "@joanaiken I was originally on prednisone, cellcept and prograf. After a few months I only took..." + (show)
@gaylea1

@joanaiken I was originally on prednisone, cellcept and prograf. After a few months I only took prograf and am now on 1mg every 12 hours. I think they might reduce it in April but the bloodwork will tell. I guess we're all taking meds according to our doctor's advice.

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@gaylea1 I would love for them to take me off prednisone but I’m thinking that’s never going to happen. My blood counts are somewhat low, I think that’s why I’m still on it. I am so happy that is in the past too. Just thinking about those episodes brings tears to my eyes.

@rosemarya Your post sort of jogged my mind. I think when I was on prograf I had days when I was a bit foggy. I wasn’t on that too long before they changed me to sirolimus.
JK

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khh | @khh | Mar 2, 2020
In reply to @khh "Did you get any of that or did I lose the entire thing I typed?" + (show)
@khh

Did you get any of that or did I lose the entire thing I typed?

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You may have seen a few statements I had entered. Please read them. I would like your opinion as far as what I need to do and where you think I could go.
Will I be able to talk to other programs considering they have not put me on the list. The Np is see is looking at a number. My meld has stayed just below 15, however, my scans, CT’s density of my liver etc are much much worse. I need everything to be looked at together. I’m also a physician (not liver specialist), but I am fully aware of many of the problems. I am just getting the run around here just like my 2 friends who died on the waiting list I need y’all’s advice as to what to do. I want to continue working and helping people too. I’m only 52

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3 replies
JK | @contentandwell | Mar 2, 2020
In reply to @khh "You may have seen a few statements I had entered. Please read them. I would like..." + (show)
@khh

You may have seen a few statements I had entered. Please read them. I would like your opinion as far as what I need to do and where you think I could go.
Will I be able to talk to other programs considering they have not put me on the list. The Np is see is looking at a number. My meld has stayed just below 15, however, my scans, CT’s density of my liver etc are much much worse. I need everything to be looked at together. I’m also a physician (not liver specialist), but I am fully aware of many of the problems. I am just getting the run around here just like my 2 friends who died on the waiting list I need y’all’s advice as to what to do. I want to continue working and helping people too. I’m only 52

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@khh I have no idea if you will be able to talk to people at other programs beyond getting some general info, but if you are as unhappy with the care you are receiving now as you sound to be, you need to go elsewhere. If you are in Mississippi then Illinois and Grand Rapids are already not that close to where you are, and although the support of family is ideal, getting the medical care you should be getting is the most important thing. You mention that Mayo in FL is not too far. That would certainly be the ideal first step. If you want to look elsewhere you might want to look at statistics on the SRTR.org database. It lists all of the transplant centers and some statistics about them. The Mayo in FL is one of the best transplant centers in the country per the data there.

I was listed at Mass General in Boston but they told me quite frankly that I might get a transplant sooner in a different region. I called Mayo in MN and the person I spoke to was very informative on the phone and did feel they would be able to get me a transplant at around MELD 28, whereas Mass General was saying in the 30s. I came very close to listing at Mayo but then by some great fortune, I had my transplant at Mass General at MELD 28! Mass General, according to the SRTR database is slower at getting livers, which is exactly what I was told, but the survival post-transplant is one of the best.

It doesn't sound as if you have had the testing done yet to qualify for a transplant so whatever transplant center you choose to go to will want to do that testing. If you have had it done, sometimes they will accept the results from the hospital where it was done. Mayo told me they would accept my test results from Mass General but I have heard of other people using different transplant centers who have had to do the testing again.

I very sincerely hope that you are able to move forward in getting the care you need and deserve.
JK

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 2, 2020
In reply to @khh "You may have seen a few statements I had entered. Please read them. I would like..." + (show)
@khh

You may have seen a few statements I had entered. Please read them. I would like your opinion as far as what I need to do and where you think I could go.
Will I be able to talk to other programs considering they have not put me on the list. The Np is see is looking at a number. My meld has stayed just below 15, however, my scans, CT’s density of my liver etc are much much worse. I need everything to be looked at together. I’m also a physician (not liver specialist), but I am fully aware of many of the problems. I am just getting the run around here just like my 2 friends who died on the waiting list I need y’all’s advice as to what to do. I want to continue working and helping people too. I’m only 52

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@khh, Have you been diagnosed with a liver condition by a GI or liver specialist? If not, I think that is where you should begin. Not every liver conditiion develops into a need for a transplant. There might be a treatment option available for you. Your thoughts?

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1 reply
khh | @khh | Mar 8, 2020
In reply to @rosemarya "@khh, Have you been diagnosed with a liver condition by a GI or liver specialist? If..." + (show)
@rosemarya

@khh, Have you been diagnosed with a liver condition by a GI or liver specialist? If not, I think that is where you should begin. Not every liver conditiion develops into a need for a transplant. There might be a treatment option available for you. Your thoughts?

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Oh yes. I was diagnosed as end stage Metavir 4, decompensated type 3 yrs ago. I have pulmonary hypertension, splenomegaly , very large vessels in the abdomen and part of my inferior vena cava is beginning to flow backwards. My liver density is a 96. I don’t think I’ve ever heard of anyone else’s being that high. Recently my AFP began rising but no mass found yet. That’s pretty much what I can think of right off the top of my head. Oh yeah, and I really getting yellow. Does that help you know where I am?

REPLY
1 reply
khh | @khh | Mar 8, 2020
In reply to @contentandwell "@khh I have no idea if you will be able to talk to people at other..." + (show)
@contentandwell

@khh I have no idea if you will be able to talk to people at other programs beyond getting some general info, but if you are as unhappy with the care you are receiving now as you sound to be, you need to go elsewhere. If you are in Mississippi then Illinois and Grand Rapids are already not that close to where you are, and although the support of family is ideal, getting the medical care you should be getting is the most important thing. You mention that Mayo in FL is not too far. That would certainly be the ideal first step. If you want to look elsewhere you might want to look at statistics on the SRTR.org database. It lists all of the transplant centers and some statistics about them. The Mayo in FL is one of the best transplant centers in the country per the data there.

I was listed at Mass General in Boston but they told me quite frankly that I might get a transplant sooner in a different region. I called Mayo in MN and the person I spoke to was very informative on the phone and did feel they would be able to get me a transplant at around MELD 28, whereas Mass General was saying in the 30s. I came very close to listing at Mayo but then by some great fortune, I had my transplant at Mass General at MELD 28! Mass General, according to the SRTR database is slower at getting livers, which is exactly what I was told, but the survival post-transplant is one of the best.

It doesn't sound as if you have had the testing done yet to qualify for a transplant so whatever transplant center you choose to go to will want to do that testing. If you have had it done, sometimes they will accept the results from the hospital where it was done. Mayo told me they would accept my test results from Mass General but I have heard of other people using different transplant centers who have had to do the testing again.

I very sincerely hope that you are able to move forward in getting the care you need and deserve.
JK

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Thank you. Also please reAd my response to Rosemary. I cannot believe I am just now able to see your responses!

REPLY
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 9, 2020
In reply to @khh "Oh yes. I was diagnosed as end stage Metavir 4, decompensated type 3 yrs ago. I..." + (show)
@khh

Oh yes. I was diagnosed as end stage Metavir 4, decompensated type 3 yrs ago. I have pulmonary hypertension, splenomegaly , very large vessels in the abdomen and part of my inferior vena cava is beginning to flow backwards. My liver density is a 96. I don’t think I’ve ever heard of anyone else’s being that high. Recently my AFP began rising but no mass found yet. That’s pretty much what I can think of right off the top of my head. Oh yeah, and I really getting yellow. Does that help you know where I am?

Jump to this post

@khh, As a patient, I had to look up Metuvar 4, and I learned that it indicates the amount of inflammation in the liver and the stage represents the amount of scarring or fibrosis. I recognize some of the symptoms that you are describing from my own liver disease journey. Connect is a patient to patient group, and as such, we share our experiences and are not qualified to give medical advice.

The reason that I asked you about a diagnosis is because that diagnosis is how your doctor and medical team will be able to identify what you need in the way of treatment and care. I encourage you to continue your proactive self advocacy as you seek answers. Have you been able to schedule an appointment with the doctor yet?

REPLY
1 reply
seahorstmayo | @seahorstmayo | Mar 10, 2020
In reply to @gaylea1 "@lmctif as a pre-transplant liver patient I am interested in symptoms that occur before surgery and..." + (show)
@gaylea1

@lmctif as a pre-transplant liver patient I am interested in symptoms that occur before surgery and tips on how to remedy them. Sharing in others journeys seems to be very helpful and combats the lonliness. Just knowing that others are waiting and discussing post transplant expectations are beneficial.

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The symptoms can be quite varied. Personally, my biggest issue was encephalopathy. It can your whole mental status. But others include the yellow skin which can lead to a lot of itching. Esaphogeal varices and bleeding can be another problem. You need to be watchful of these. Most of the other symptoms are pretty invisable.

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seahorstmayo | @seahorstmayo | Mar 10, 2020
In reply to @khh "You may have seen a few statements I had entered. Please read them. I would like..." + (show)
@khh

You may have seen a few statements I had entered. Please read them. I would like your opinion as far as what I need to do and where you think I could go.
Will I be able to talk to other programs considering they have not put me on the list. The Np is see is looking at a number. My meld has stayed just below 15, however, my scans, CT’s density of my liver etc are much much worse. I need everything to be looked at together. I’m also a physician (not liver specialist), but I am fully aware of many of the problems. I am just getting the run around here just like my 2 friends who died on the waiting list I need y’all’s advice as to what to do. I want to continue working and helping people too. I’m only 52

Jump to this post

You almost have to hope for a tumor. I had similar issue with my MELD score not going over twelve for years. But the encephalopathy was really bad. I finally got a tumor and after a sixth month waiting period (mandatory) I got my exception points. Three days later, had a transplant.

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