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!

@rosemarya

This has been a fantastic conversation and I want to expand upon it.

For anyone not familiar with hepatic encephalopathy (HE)), it is a buildup of toxins in the brain.
"A liver damaged by cirrhosis isn't able to clear toxins from the blood as well as a healthy liver can. These toxins can then build up in the brain and cause mental confusion and difficulty concentrating. With time, hepatic encephalopathy can progress to unresponsiveness or coma.

Cirrhosis often has no signs or symptoms until liver damage is extensive. When signs and symptoms do occur, they may include:

Fatigue
Easily bleeding or bruising
Loss of appetite
Nausea
Swelling in your legs, feet or ankles (edema)
Weight loss
Itchy skin
Yellow discoloration in the skin and eyes (jaundice)
Fluid accumulation in your abdomen (ascites)
Spiderlike blood vessels on your skin
Redness in the palms of the hands
For women, absent or loss of periods not related to menopause
For men, loss of sex drive, breast enlargement (gynecomastia) or testicular atrophy
Confusion, drowsiness and slurred speech (hepatic encephalopathy) "
https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487

-Were you told about the signs of HE to look for when you were diagnosed with liver disease?
-Were you monitored in any way by your medical care provider?
-What do you wish you would have known then, that you know now?
– What kind of hope and/or encouragement would you share with someone who is new to this conversatioin.

@racing212, @gaylea1, @wildcat, @contentandwell, @jeanne5009, @rowdyramsey, @flagal22, @mostlybill, @tgshomes, and anyone I missed: I hand the mike to you.

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I had all these symptoms (regarding women) except the ascites.. It was brutal.

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@jeanne5009

Im on lactalose and rifaximin…I have mild HE. Will the meds keep me from
a full blown episode. At least I know what it is and its all on my records.
The big worry is that the local hospital may not know how to treat it!. I
have instructed my friends and family to get me to the transplant center
ASAP. Tampa told me they will come get me in a helicopter….
Probably have a heart attack if that went down..lol.

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I was in Las Vegas Hospitals for a month Last Year before they finally correctly diagnosed me with ammonia in the liver. I also was given Lactulose and xifaxan. I went to the Mayo in Phoenix and they looked at my past year of tests and determined I needed a Liver and Kidney transplant. For me it was a 9 month process of testing if I was healthy enough to qualify (I was 68). Last June again the ammonia caught up with me, and after calling the MAYO, they insisted I go to a local hospital and they would monitor me. Five days later I woke up and was told I was at the MAYO in Phoenix. After being stabilized, I had one additional test, which I fortunately passed and was placed on the transplant list that day and incredibly received the transplants the next day. Look at the success rate of each hospital and the five year survival rate. Do not skimp on this research. Be suspicious of low volume hospitals. The Transplant for me were not easy with major pain until we finally (2 weeks) discovered I cannot tolerate "OXY" drugs, however now, 5 months out (while I still have some problems) my overall health is better than it was 10 years ago. Get on the list ASAP, the sooner it happens the better, It will be based on your MELD score not first come first served. You will also need to be within a few hours of the transplant center and you will need to remain within a few minutes of the center for 6 weeks after discharge. Also price out the medications you need (some are quite expensive) and you will possibly need to hunt for help.
Good Luck, and I hope hearing from someone who has just been through it helps.

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@racing212

Last fall the Dr. Told a friend that he didn't expect me to live until april. I fooled him its a year later and im still going strong. My meld score went up back in September.

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@racing212, Good for you!
Don't you hate to hear those kinds of comments? I can clearly remember hearing disaster stories from some people while I was waiting and struggling with my awful symptoms. I chose not to listen to them.

I am so happy for you that you are going strong even with a rising MELD. Keep on doing what you are doing and following the advice of your medical team. And congratulations on the relief from ascites and those paracentesis procedures. (I had to use that word because I. too, had many of them. And I even learned how to spell it!)

Over all, How are you feeling? Do you have nausea or tiredness? Do you have any idea why the fluids are not building us now?

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Hello fellow liver patients! If your alive…it’s a great day for celebrating!! I have a question for everyone! What was ur opiate medication? I’m trying to see if anyone can relate to me. In 2004 they removed a tumor on my remaining ovary. I only had one cause I had ovarian cancer at 19 yrs. old. So,I was to have my one ovary removed(hysterectomy) so the cancer Dosent come back. So in 2004 they reluctantly did surgery ( hysterectomy) they considered me very high risk for surgery. My liver was so far gone,this is the first time my liver was mentioned. The doc did the surgery and then relayed the condition of my liver to me and family. He said it was a big bag of peanuts! The liver that is. Anyway they put me on narcotics stating after surgery. They kept me on a daily stream of Dilaudid. The point 4s! I was on them daily till my transplant for 2 straight years. Then<get this,they continued to give me every month 180 point 4 dilaudids from transplant till last year. So from 2014 till 2018,I was on this narcotic daily. Never missed a day. That is daily use of the strongest narcotics out there. I also was on them every 4-6 hrs for a solid 5 years. Four yrs. after transplant I was still taking the same amount. I think I was over prescribed!! I finally took matters in my own hands. I refused anymore scripts and had to get on a methadone 30 day detox program. That’s how I got off the narcotics that were prescribed every month! Have any of you had this problem either now or before?

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@rosemarya

This has been a fantastic conversation and I want to expand upon it.

For anyone not familiar with hepatic encephalopathy (HE)), it is a buildup of toxins in the brain.
"A liver damaged by cirrhosis isn't able to clear toxins from the blood as well as a healthy liver can. These toxins can then build up in the brain and cause mental confusion and difficulty concentrating. With time, hepatic encephalopathy can progress to unresponsiveness or coma.

Cirrhosis often has no signs or symptoms until liver damage is extensive. When signs and symptoms do occur, they may include:

Fatigue
Easily bleeding or bruising
Loss of appetite
Nausea
Swelling in your legs, feet or ankles (edema)
Weight loss
Itchy skin
Yellow discoloration in the skin and eyes (jaundice)
Fluid accumulation in your abdomen (ascites)
Spiderlike blood vessels on your skin
Redness in the palms of the hands
For women, absent or loss of periods not related to menopause
For men, loss of sex drive, breast enlargement (gynecomastia) or testicular atrophy
Confusion, drowsiness and slurred speech (hepatic encephalopathy) "
https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487

-Were you told about the signs of HE to look for when you were diagnosed with liver disease?
-Were you monitored in any way by your medical care provider?
-What do you wish you would have known then, that you know now?
– What kind of hope and/or encouragement would you share with someone who is new to this conversatioin.

@racing212, @gaylea1, @wildcat, @contentandwell, @jeanne5009, @rowdyramsey, @flagal22, @mostlybill, @tgshomes, and anyone I missed: I hand the mike to you.

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@rosemarya the only thing I can add about HE is that the the symptoms vary so much from person to person, and there are those very fortunate ones like yourself who never have HE.
Also, the other symptoms vary a lot from person to person. I never jaundiced, had loss of appetite (except during an HE episode and not always then even), only lost weight intentionally, did not have ascites until very shortly before my transplant, I was not itchy, and do not recall my palms being red.
Other common symptoms not mentioned here that many people have, me included, are shaky hands, (as my cirrhosis progressed I couldn’t get a spoonful of soup to my mouth), plus I was always very cold, had leg cramps (these were mostly in my thighs and were excruciating, but thankfully passed in about 10 – 15 minutes), declining platelet counts, and recently diagnosed diabetes.

HE was what brought the fact that there was something wrong to a head so I didn’t need an explanation, I had been having episodes for almost a year and a half at that point. I was monitored and I think I knew everything I needed to know after I finally had a diagnosis.
I went to my local hospital when I had HE episodes, in retrospect I wish my husband had gotten me to Mass General, my transplant hospital. My local hospital really was not that familiar with HE and my treatment was pretty bad.
Another time the NP called and said to get to the hospital immediately, to go local. My hematocrit and hemoglobin counts were very low. I think the counts were so low she was concerned that if my husband drove me to Boston, a good hour away, I could have a problem because the doctor at the local hospital said my counts were so low that I could have had a cardiac arrest. They sent me by ambulance to Mass General. I am not sure if my situation would have been handled as well in the local hospital.
For those going through this, I can only say if you have found an excellent transplant center and an excellent hepatologist, just do what is suggested and take care of yourself, let them know if anything is wrong. Be confident and positive, better days will come.
If you have not yet chosen a transplant center, do your research and find the best that is geographically available to you, or that you can get to if it is a distance. There are a number of helpful sites, one is SRTR.org.
JK

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@rosemarya

@racing212, Good for you!
Don't you hate to hear those kinds of comments? I can clearly remember hearing disaster stories from some people while I was waiting and struggling with my awful symptoms. I chose not to listen to them.

I am so happy for you that you are going strong even with a rising MELD. Keep on doing what you are doing and following the advice of your medical team. And congratulations on the relief from ascites and those paracentesis procedures. (I had to use that word because I. too, had many of them. And I even learned how to spell it!)

Over all, How are you feeling? Do you have nausea or tiredness? Do you have any idea why the fluids are not building us now?

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I get tired real easy. I fall asleep at the shop once in awhile and noone says anything. They put a shunt in my liver a year ago and that stopped the fluid build up

REPLY
@rowdyramsey

Hello fellow liver patients! If your alive…it’s a great day for celebrating!! I have a question for everyone! What was ur opiate medication? I’m trying to see if anyone can relate to me. In 2004 they removed a tumor on my remaining ovary. I only had one cause I had ovarian cancer at 19 yrs. old. So,I was to have my one ovary removed(hysterectomy) so the cancer Dosent come back. So in 2004 they reluctantly did surgery ( hysterectomy) they considered me very high risk for surgery. My liver was so far gone,this is the first time my liver was mentioned. The doc did the surgery and then relayed the condition of my liver to me and family. He said it was a big bag of peanuts! The liver that is. Anyway they put me on narcotics stating after surgery. They kept me on a daily stream of Dilaudid. The point 4s! I was on them daily till my transplant for 2 straight years. Then<get this,they continued to give me every month 180 point 4 dilaudids from transplant till last year. So from 2014 till 2018,I was on this narcotic daily. Never missed a day. That is daily use of the strongest narcotics out there. I also was on them every 4-6 hrs for a solid 5 years. Four yrs. after transplant I was still taking the same amount. I think I was over prescribed!! I finally took matters in my own hands. I refused anymore scripts and had to get on a methadone 30 day detox program. That’s how I got off the narcotics that were prescribed every month! Have any of you had this problem either now or before?

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@rowdyramsey I have been on just about every narcotic (hydrocodone, oxycodone, oxycontin, Dilaudid) at some point in time for knee replacements, the liver transplant, and a couple of other painful things but never for as long as you were. I was on either oxy or hydrocodone for a few months following my first TKR but for some reason I have so far been able to discontinue narcotics without a problem. Part of that may be that I have always been very conservative in how much I took.
That's good that you, yourself, took the initiative to discontinue the drugs, that does seem like an excessive amount and I suspect almost anyone would get dependent on them if they were taking them for that long.
You must be feeling much better now, I am happy for you, and impressed that you took care of this yourself.

@racing212 It seems a lot of people complain of fatigue. I have been having a problem with that recently but I don't think it is related to my liver transplant, I am pretty sure it is related to simply not sleeping very well. Are you able to get a good night's sleep? I often wake up and am exhausted still but can't fall back to sleep. I will get up, have breakfast and then after doing a few things return to bed for a nap. I can do that because I am retired.
JK

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@contentandwell

@rowdyramsey I have been on just about every narcotic (hydrocodone, oxycodone, oxycontin, Dilaudid) at some point in time for knee replacements, the liver transplant, and a couple of other painful things but never for as long as you were. I was on either oxy or hydrocodone for a few months following my first TKR but for some reason I have so far been able to discontinue narcotics without a problem. Part of that may be that I have always been very conservative in how much I took.
That's good that you, yourself, took the initiative to discontinue the drugs, that does seem like an excessive amount and I suspect almost anyone would get dependent on them if they were taking them for that long.
You must be feeling much better now, I am happy for you, and impressed that you took care of this yourself.

@racing212 It seems a lot of people complain of fatigue. I have been having a problem with that recently but I don't think it is related to my liver transplant, I am pretty sure it is related to simply not sleeping very well. Are you able to get a good night's sleep? I often wake up and am exhausted still but can't fall back to sleep. I will get up, have breakfast and then after doing a few things return to bed for a nap. I can do that because I am retired.
JK

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It's gotten worse since my liver don't work right any more. I also had leukemia that also wore me out

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@racing212

It's gotten worse since my liver don't work right any more. I also had leukemia that also wore me out

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@racing212 health problems really do cause fatigue, and you apparently have a couple of things contributing to it. Try to get more sleep than you usually need to see if that helps, or if possible take naps. I found naps to be essential when I was pre-transplant. Have you spoken to your doctor about it?
I hope your problems resolve soon so you can get on with a more active life. Do you know your MELD score now?
JK

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@contentandwell

@rowdyramsey I have been on just about every narcotic (hydrocodone, oxycodone, oxycontin, Dilaudid) at some point in time for knee replacements, the liver transplant, and a couple of other painful things but never for as long as you were. I was on either oxy or hydrocodone for a few months following my first TKR but for some reason I have so far been able to discontinue narcotics without a problem. Part of that may be that I have always been very conservative in how much I took.
That's good that you, yourself, took the initiative to discontinue the drugs, that does seem like an excessive amount and I suspect almost anyone would get dependent on them if they were taking them for that long.
You must be feeling much better now, I am happy for you, and impressed that you took care of this yourself.

@racing212 It seems a lot of people complain of fatigue. I have been having a problem with that recently but I don't think it is related to my liver transplant, I am pretty sure it is related to simply not sleeping very well. Are you able to get a good night's sleep? I often wake up and am exhausted still but can't fall back to sleep. I will get up, have breakfast and then after doing a few things return to bed for a nap. I can do that because I am retired.
JK

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Thank you for your kind words! Yeah I was way over prescribed. By the end of it I could take 20 .4 Dilaudid at one time and it didn’t even touch me! I knew . They actually threw me off the transplant list because they said the pain would be to great cause they could Not give me enough pain meds to comfort me because my tolerance was so high. They alone where responsible for medicating me because I was living at the hospital on a permanent basis. They gave me Dilaudid every 4 hrs along with Atalanta and morphine every 3. The doctor called my mom and said I had lapsed into a coma and this was the end. She came immediately and found me totally awake and out of my mom. My mom caused a big scene(she is a retired RN. I wasent in any coma<they had drugged me so bad that I lost consciousness. My mom went nuts on them. They overly medicated me and if I wasent under HE,I was a zombie stoned out of my mind! They put me back on the list 2 months later
Unfortunately , I have developed an eating disorder in which my life is at stake once again. Problem is I cant eat. I’m nauseated all the time and can’t get food down because of it. It’s not like I don’t eat cause I think I’m fat. I don’t eat because I have no appetite.. I’m seeing a doctor and a psychiatrist. About 2 months now. They have done nothing!!i go every other week and not one thing is talked about of any importance. It’s a joke!
Fatigue is always been a problem for me. It takes me 2 hours in the morning just to feel like I can move. It’s ridiculous. I have no problem with sleep. I have been on Trazadone since the transplant. I go to sleep within 20 min.<don’t wake up and I can sleep 10-11 hours a day! I am still disabled so I’m home all the time.Are you still disabled from your transplant? Anyone?

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@rowdyramsey

Thank you for your kind words! Yeah I was way over prescribed. By the end of it I could take 20 .4 Dilaudid at one time and it didn’t even touch me! I knew . They actually threw me off the transplant list because they said the pain would be to great cause they could Not give me enough pain meds to comfort me because my tolerance was so high. They alone where responsible for medicating me because I was living at the hospital on a permanent basis. They gave me Dilaudid every 4 hrs along with Atalanta and morphine every 3. The doctor called my mom and said I had lapsed into a coma and this was the end. She came immediately and found me totally awake and out of my mom. My mom caused a big scene(she is a retired RN. I wasent in any coma<they had drugged me so bad that I lost consciousness. My mom went nuts on them. They overly medicated me and if I wasent under HE,I was a zombie stoned out of my mind! They put me back on the list 2 months later
Unfortunately , I have developed an eating disorder in which my life is at stake once again. Problem is I cant eat. I’m nauseated all the time and can’t get food down because of it. It’s not like I don’t eat cause I think I’m fat. I don’t eat because I have no appetite.. I’m seeing a doctor and a psychiatrist. About 2 months now. They have done nothing!!i go every other week and not one thing is talked about of any importance. It’s a joke!
Fatigue is always been a problem for me. It takes me 2 hours in the morning just to feel like I can move. It’s ridiculous. I have no problem with sleep. I have been on Trazadone since the transplant. I go to sleep within 20 min.<don’t wake up and I can sleep 10-11 hours a day! I am still disabled so I’m home all the time.Are you still disabled from your transplant? Anyone?

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@rowdyramsey I had a great recovery from transplant and never had a problem from it.
Your journey sounds very unusual. I assume you are being treated at an excellent transplant center, if so you need to believe in them. If not, then find a different one.
I'm sorry to hear you are having difficulty eating now. Hopefully the doctors you are seeing will be able to provide you with some help. Please let us know how you are doing, and if they do have any suggestions for you to get beyond your lack of appetite.
JK

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@rowdyramsey

Thank you for your kind words! Yeah I was way over prescribed. By the end of it I could take 20 .4 Dilaudid at one time and it didn’t even touch me! I knew . They actually threw me off the transplant list because they said the pain would be to great cause they could Not give me enough pain meds to comfort me because my tolerance was so high. They alone where responsible for medicating me because I was living at the hospital on a permanent basis. They gave me Dilaudid every 4 hrs along with Atalanta and morphine every 3. The doctor called my mom and said I had lapsed into a coma and this was the end. She came immediately and found me totally awake and out of my mom. My mom caused a big scene(she is a retired RN. I wasent in any coma<they had drugged me so bad that I lost consciousness. My mom went nuts on them. They overly medicated me and if I wasent under HE,I was a zombie stoned out of my mind! They put me back on the list 2 months later
Unfortunately , I have developed an eating disorder in which my life is at stake once again. Problem is I cant eat. I’m nauseated all the time and can’t get food down because of it. It’s not like I don’t eat cause I think I’m fat. I don’t eat because I have no appetite.. I’m seeing a doctor and a psychiatrist. About 2 months now. They have done nothing!!i go every other week and not one thing is talked about of any importance. It’s a joke!
Fatigue is always been a problem for me. It takes me 2 hours in the morning just to feel like I can move. It’s ridiculous. I have no problem with sleep. I have been on Trazadone since the transplant. I go to sleep within 20 min.<don’t wake up and I can sleep 10-11 hours a day! I am still disabled so I’m home all the time.Are you still disabled from your transplant? Anyone?

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I honestly can't recall any pain meds after surgery. Maybe within the first 48 hours but nothing after that for sure. The only pain I remember is from lying awardly in the bed trying to get comfortable and my back hurt after 8 1/2 hours during surgery.

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@gaylea1

I honestly can't recall any pain meds after surgery. Maybe within the first 48 hours but nothing after that for sure. The only pain I remember is from lying awardly in the bed trying to get comfortable and my back hurt after 8 1/2 hours during surgery.

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Wow,that’s just crazy to hear. So totally opposite! Just shows how each individual is so different! Every single person has their own individual experience.

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@contentandwell

@rowdyramsey I had a great recovery from transplant and never had a problem from it.
Your journey sounds very unusual. I assume you are being treated at an excellent transplant center, if so you need to believe in them. If not, then find a different one.
I'm sorry to hear you are having difficulty eating now. Hopefully the doctors you are seeing will be able to provide you with some help. Please let us know how you are doing, and if they do have any suggestions for you to get beyond your lack of appetite.
JK

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I was treated at the University of Maryland. That’s where our shock trauma is located. I also had the opportunity to go to John Hopkins. Most people out of state have heard of Hopkins. Have u? My post treatment was great the first 8 months maybe. Then it went to hell.I never hardly hear from them. I do have an appointment with the liver people on November 26th. Wonder if they will say or do anything about what’s happening to me. I doubt it highly. Will let u know!

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@racing212

I get tired real easy. I fall asleep at the shop once in awhile and noone says anything. They put a shunt in my liver a year ago and that stopped the fluid build up

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FATIGUE –
Fatigue is one of the symptoms that I experienced, even early in my diagnosis with liver disease. In the beginning, I would sometimes come home from my day as a teacher, and sink into the couch until bedtime. As my disease progressed, my fatigue became overwhelming. I retired early. The good news is that as soon as I woke up from my transplant surgery, I felt as if someone had flipped a switch to ON and the fatigue was gone.
Fatigue is one of the signs and symptoms of cirrhosis that I shared in my reply 2 days ago. (https://www.mayoclinic.org/diseases-conditions/cirrhosis/symptoms-causes/syc-20351487)

Here is the definition of fatigue:
"Nearly everyone is overtired or overworked from time to time. Such instances of temporary fatigue usually have an identifiable cause and a likely remedy.
Unrelenting exhaustion, on the other hand, lasts longer, is more profound and isn't relieved by rest. It's a nearly constant state of weariness that develops over time and reduces your energy, motivation and concentration. Fatigue at this level impacts your emotional and psychological well-being, too." https://www.mayoclinic.org/symptoms/fatigue/basics/definition/sym-20050894

@racing212, You must have a great group of co-workers! .

Who else has something to share about fatigue while waiting for a liver transplant? How did you manage your daily living?

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