Liver transplant support group

Posted by lmctif @lmctif, Oct 29, 2018

Hello everyone! I am a transplant social worker in Florida. I am currently gathering information to put together a “Liver” support group. I was curious as to what specific topics people would be most interested in learning new information about / discussing! It is supposed to be more of an interactive class in which group members lead the discussion, but I would be interested to see what kinds of topics or discussions would be most beneficial from an outsiders perspective! Thanks in advance for any suggestions!

@jeanne5009

How fortunate that you got the help you needed. My story is similar..my Meld is only 8 and Mayo watches me….like a hawk! What was your turning point? Im waiting but I really havent changed…or it is silently creeping up on me.
I will be 69 years old next week..what happens if I stay this way til 73 and then it suddenly falls apart? Will I be too old??
What do you think??

Jump to this post

@jeanne5009 That’s a pretty low MELD. Are you even on the transplant list yet?

I think that each transplant center has their own guidelines when it comes to transplant age. I’ve heard the cutoff point at some is 70, but at my transplant center (Mass General in Boston) I’ve been told they decide not based on chronological age but on the health of the patient. Some people can be in better health at 75 than others are at 55! I worked at being in the best possible shape knowing that would serve me well in my recovery from an eventual transplant, and I was overweight, BMI was in the “obese” category, so I lost a significant number of pounds. I am still technically “overweight” but my doctors are happy with my current weight so it’s not a real worry, although I would like to drop a few more pounds and not be overweight.
My transplant happened at MELD 28, two days before I turned 69.
JK

REPLY
@jeanne5009

How fortunate that you got the help you needed. My story is similar..my Meld is only 8 and Mayo watches me….like a hawk! What was your turning point? Im waiting but I really havent changed…or it is silently creeping up on me.
I will be 69 years old next week..what happens if I stay this way til 73 and then it suddenly falls apart? Will I be too old??
What do you think??

Jump to this post

Jeanne5009, Pre- liver Transplant my meld score was 10 to 15 for 8 years. My personal experiences is such that in the beginning my illness presented as a esophageal varasies. Life style changes extended my time without symptoms of end stage liver disease. I had no worries until Acidies kicked in a year before my transplant. At that point I put my house in order.

REPLY
@luckonetj

Jeanne5009, Pre- liver Transplant my meld score was 10 to 15 for 8 years. My personal experiences is such that in the beginning my illness presented as a esophageal varasies. Life style changes extended my time without symptoms of end stage liver disease. I had no worries until Acidies kicked in a year before my transplant. At that point I put my house in order.

Jump to this post

Luckonetj did you have PSC? My son with PSC had a blocked bile duct & cholangitis last December. His MELD was 34 at that time. He was evaluated & placed on the transplant list. Since then he has stabilized with a MELD of 13. His best chance for a transplant now would be a living donor. His doctors monitor him closely, especially for esophageal varices & acsites.

REPLY
@stella25

Luckonetj did you have PSC? My son with PSC had a blocked bile duct & cholangitis last December. His MELD was 34 at that time. He was evaluated & placed on the transplant list. Since then he has stabilized with a MELD of 13. His best chance for a transplant now would be a living donor. His doctors monitor him closely, especially for esophageal varices & acsites.

Jump to this post

Stella25, I had alcoholic liver desease. Although, I have a friend that had PSC he was a heavy drinker for many years.

REPLY
@craiger

Yes I am and I think I will need one very soon..I have NASH and wanted to ask a few quistians.

Jump to this post

@craiger, You have mentioned some right shoulder pain. I remember when I have had liver biopsies, that I was told that I might have some shoulder pain called referred pain. In my situation, I would call it a temporary nuisance that was relieved with tylenol for a couple of days.
Have you found any relief for your pain? What have the doctors told you about it?

REPLY
@luckonetj

@christinelouise I to have higher creatinine levels with Tacrolimus just past the normal range. I'll mention sirolimus to my nurse next time. They attributed the hi levels of creatinine to the Antiviral I was on. I do have to drink more water during the day. Doctors orders.

Jump to this post

@luckonetj How are your creatinine levels now? Are you still on tacrolimus and drinking loads of water? Despite the change to sirolimus I do still have to drink about 80 ounces of water a day which is a problem since I have incontinence issues — I tend to be up about 6 times a night, no matter how early in the day I drink the water.
Other than the creatinine problems how is everything else? I hope you are continuing to do well.
JK

REPLY

I posted this in the kidney transplant group but I am posting here also. This is something we should all be aware of.

I just read this today and wanted to alert all of the post-transplant patients to it, although I think it could benefit everyone. Apparently when you are flying and use the toilets you are better off not washing your hands at all, rather than using the airplane water! Carry sanitizer.
I knew to not drink the coffee made with the water on airplanes but it never occurred to me that the water could be so bad that even washing hands could be bad. Our last flight was coming home from Denver on JetBlue in August. Thankfully none of us had any ill effects.
JK

https://www.huffpost.com/entry/airline-water-quality_l_5d8152f7e4b03ec1bc96639b

Liked by luckonetj

REPLY
@contentandwell

I posted this in the kidney transplant group but I am posting here also. This is something we should all be aware of.

I just read this today and wanted to alert all of the post-transplant patients to it, although I think it could benefit everyone. Apparently when you are flying and use the toilets you are better off not washing your hands at all, rather than using the airplane water! Carry sanitizer.
I knew to not drink the coffee made with the water on airplanes but it never occurred to me that the water could be so bad that even washing hands could be bad. Our last flight was coming home from Denver on JetBlue in August. Thankfully none of us had any ill effects.
JK

https://www.huffpost.com/entry/airline-water-quality_l_5d8152f7e4b03ec1bc96639b

Jump to this post

@contentandwell thank you so much for this heads up!

REPLY
@contentandwell

@luckonetj How are your creatinine levels now? Are you still on tacrolimus and drinking loads of water? Despite the change to sirolimus I do still have to drink about 80 ounces of water a day which is a problem since I have incontinence issues — I tend to be up about 6 times a night, no matter how early in the day I drink the water.
Other than the creatinine problems how is everything else? I hope you are continuing to do well.
JK

Jump to this post

JK, I am doing fine and my creatinine level is 1.37. I expect it to rise to around 1.45 since my TACROLIMUS has increased to 3 and three. Thank you for asking and I hope you are well. I do drink around 18 glasses of water per day.

REPLY
@luckonetj

JK, I am doing fine and my creatinine level is 1.37. I expect it to rise to around 1.45 since my TACROLIMUS has increased to 3 and three. Thank you for asking and I hope you are well. I do drink around 18 glasses of water per day.

Jump to this post

@luckonetj If your transplant center is happy with your numbers that's what matters I think. We have to trust them to know best. Mine initially said they would consider 1.40 to be my norm but then for some reason they lowered that. Now it is generally less than 1.10. I do have days when I don't manage to get all of that water down, especially if traveling.
JK

REPLY
@contentandwell

@luckonetj If your transplant center is happy with your numbers that's what matters I think. We have to trust them to know best. Mine initially said they would consider 1.40 to be my norm but then for some reason they lowered that. Now it is generally less than 1.10. I do have days when I don't manage to get all of that water down, especially if traveling.
JK

Jump to this post

My husband and I like to say that if my transplanted organs are happy, then everybody's happy 😊

REPLY
@rosemarya

My husband and I like to say that if my transplanted organs are happy, then everybody's happy 😊

Jump to this post

My don't seem to be happy. I feel like I am on speed I can't sleep . I spent the night rewiring the house in the middle of the night my mind will not shut down. Must be addressing. I blew out the lights and started out the window all night waiting for morning. mind will not shut.OFf

REPLY
@livertrex

My don't seem to be happy. I feel like I am on speed I can't sleep . I spent the night rewiring the house in the middle of the night my mind will not shut down. Must be addressing. I blew out the lights and started out the window all night waiting for morning. mind will not shut.OFf

Jump to this post

@livertrex, I wish I could say Good Morning, but it sounds like you had little sleep. I know that sleepless nights can be a real bother. My own experience was sleepless miserable nights before transplant. And after my transplant things improved over time.

Livertex, It would be helpful if you share whether you have had a liver transplant yet? Or are you on a waiting list?

REPLY
@livertrex

My don't seem to be happy. I feel like I am on speed I can't sleep . I spent the night rewiring the house in the middle of the night my mind will not shut down. Must be addressing. I blew out the lights and started out the window all night waiting for morning. mind will not shut.OFf

Jump to this post

@livertrex Are you taking any prescription pain relievers such as oxycodone, OxyContin, hydrocodone, dilaudid, or tramadol? When I take any of those I lie awake staring at the ceiling for hours. I generally fall asleep at around 5 or 6 in the morning so then I have to sleep all morning. I have to be totally desperate to take anything these days.
JK

REPLY
@rosemarya

@livertrex, I wish I could say Good Morning, but it sounds like you had little sleep. I know that sleepless nights can be a real bother. My own experience was sleepless miserable nights before transplant. And after my transplant things improved over time.

Livertex, It would be helpful if you share whether you have had a liver transplant yet? Or are you on a waiting list?

Jump to this post

Rosemarya I am not sleeping at all…miserable impinged rotator cuff not helping. What did you take? Trying to get insurance to cover meds but they are giving us a hard time. What drugs can we take to get an occaisional good nights sleep? Suggestions??

REPLY
Please login or register to post a reply.