Expectations/questions

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roxie47
Regular Member


Date Joined Oct 2011
Total Posts : 86
   Posted 8/18/2016 12:07 PM (GMT -6)   
Good morning folks, Its been a while since I've posted. My husband Chuck has been getting tapped every 6-10 days, yesterday was 6 days and they drained 7.1 litres. He has lost a lot of weight, his sleep patterns are very irratic. Up most of the night and very fatigued during the day. He takes 2 naps a day for 2-3 hours each nap. He is going to start evaluations for a transplant on the 25th of this month. My questions are, if he is not approved for transplant, what then? Do we live with weekly taps forever? What will the progression be if he doesn't get the transplant. Like "approximately how long does he have"? If he does get a transplant, how much home care will he need? I work part time because if I don't there's not enough money coming to make it. I really need some honest answers, its just him and me and I kind of need to know whats down the road. His meld score last time at the docs was 17. Thanks so much for reading.

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2071
   Posted 8/18/2016 6:01 PM (GMT -6)   
My guess is the fluid issues will increase and paracentesis will need to be put on a blanket order from his Doctor. What you are describing is how it went for me with fluid issues. I was having that done twice a week at those same volumes. It's not a given he will be exactly like my situation but the odds are high. They have him on diuretics? Is he following doctors orders? Diet needs to be adhered to strictly. No alcohol. Has his sobriety been documented for a 6 months?
Sleep reversal or erratic sleep patterns are common in my/his cases. Monitor his sleep carefully. There is a potential for coma if he doesn't keep Encephalopathy at bay. Ammonia will back up and travel up his spine until it reaches his brain. That ain't good and his behavior will change abruptly.

The appointment more likely is to go over the procedures involved with transplant. A general assessment of health will be done followed by recommendations to meet the criteria for transplant. If documented sobriety hasn't been met, it'll have to be. Any health issues that might cause the transplant to go awry will also have to be addressed. Pre-transplant evaluation comes later, It's the flip you inside out physical. Heart, Lungs, Blood, x-rays almost three full days for me hobbling from one end of the hospital. His approval for being listed will depend on a MELD score they get through his blood work results. You wait till your MELD reaches the accepted limit (24 is pretty standard). You are in line with other folks who are awaiting transplant also. More or less a competition to see who is the sickest. Muscle loss is common. It's from his body devouring itself. The human body goes in to self preservation mode and starts pulling resources (nutrients) from muscle tissue. Try drinks like Ensure to replace nutrients.

It took a year for me to get relief from fluid issues. The risk of losing me to infection got so high it outweighed the risk of surgery and a TIPS was done. A shunt that bypasses my clogged and damaged liver. It allows the fluid to bypass my liver and the toxins are expelled via normal bodily functions. In order of this set up to work effectively Lactulose and a drug called Xifaxin must be taken. Lactulose works in the stomach while Xifaxin targets toxins in intestines.

Can't answer "How Long does he have" question. I was told to get my affairs in order "You wont likely live three months". Well..... That was 8 years ago. I personally have seen it go both ways for people. The best thing you can do is go to Social Security and apply for disability and medicare. Once approved it may take up to a year before you see the first check. My wife and I struggled for over a year paying our bills. I used up all my savings. Adjust to your situation. Look at what it really takes you to live (essentials) and cut back. Get a better interest rate on your home, Cut cable off, Apply for food stamps if need be. Millions of people with less problems have abused the system, Don't be ashamed. If you worked you earned it. Answers to financial issues can be overcame, You just have to re-access and use the tools you have at hand.


Ziff

roxie47
Regular Member


Date Joined Oct 2011
Total Posts : 86
   Posted 8/18/2016 11:43 PM (GMT -6)   
Thank you Ziff for your quick reply. I can always count on you to answer my questions. I've been a member for 5 years already, time goes fast. Chuck has never drank, his Cirrhosis is from Hep C. He took the Harvoni regime and has been cleared of the Hep C. Today I received a letter from the hospital telling us of the series of tests that start on the 25th. The insurance has approved a transplant. As far as SS Disability he's been getting that for quite a while. We have no home any more, when he couldn't work we lost our house, we live in an apartment now. I get SS and he gets his disability and it's not enough to live on. That's why I have to work. Between the two it's 1675.00 Rents in the Portland, Oregon area are very high. Higher than most of the country. Thank you again for all the help you give me.
Pat
Only in the darkness , are you able to see the stars.
- martin luther king

Cirrhosis, Hep C, Type 1 Diabetic

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2071
   Posted 8/19/2016 1:35 AM (GMT -6)   
Don't know why I thought it was from drinking. Oh well, That's one huge step forward. The only thing to be concerned about is the examination. It's odd how you have to be near death to receive a transplant but yet well enough to pass rigorous testing. Worse part of testing was lung test and the stress test for heart issues. I was so weak I was actually afraid of dying from those two test alone.

Sorry about the financial issues. Do you and he have family near by they might assist you with caregiver chores? I have seen folks pickup and move to another state closer to family a few times for the same reasons. I live in rural North Carolina and fortunately close enough to my transplant center at UNC, Chapel Hill NC. Duke university is also close by. The hospital should give you a folder with tons of info about what to expect in the future. It also has charities and will assist you in funding via the internet. Something like "Fund Me". You'd be surprised at how many people will respond.

Ziff

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 8/23/2016 12:11 PM (GMT -6)   
roxie.

your scenario is much like themisters that themiz used to post about.

You can go to the SEARCH up on the blue bar and type in themiz and her old posts will collect in one place...read through a bunch of them backwards.

he was very ill with hep c and finally cured in the olden days with a horrible interferon treatment, he was very compromised by the hepatic encephalopathy, and was sleeping so much and not making much sense.

but his meld score was below 20 and others got the livers before him.

my partner mike's path was much the same, only he was a drinking man AND long time Hep C infected. in 2003 he was dx with cirrhosis and told that alcohol free with Hep C, he could easily go 15 years before "he got in real trouble." well, he heard the part abouit the 15 years and took up drinking again. that old crusty liver lasted 7 years and he gave it quite a work out...drinking more than every...daily, lots.

then he crashed, fast. we got him to a liver center and they told him to put his affairs in order and he had 90 days, tops bar transplant. his meld was 26. he was making NO sense and could barely dress himself or find the toilet in time.

so...as a drinking man he had to do 6 months of docuumented sobriety, have a 1ce a week ethanol blood test, or go to a boarding rehab. Since is was so sick I was afraid he would just die in rehab, so he agreed to do AA and the blood work.

He did the testing for transplant IN the hospital a bit at a time as he was hospitalized about a week a month until his TP. We thought he would surely pass every time he got admitted.

His rescue was the tumor in his liver...a tiny hepatocellular carcinoma....he got tumor points on his meld score and moved to the top of the list. you every see a patient and loved ones GLAD for a cancer diagnosis? Well, that was us. They brought tissues into the appointment sure we would sob...nope. Withing a month he was transplanted and so...he lasted 8 years between dx and lived to tell the tale. He is now 5 years and 3 months post tp. He qualified for hep C meds AFTER TP and is clear of that now too.

So, there is time, there are meds to get you through.

I'm sorry about the financial stuff...many face the same here. We went through most of our retirement savings before Mike qualified for assistance. The hospital helped out a lot.

I wonder if your church or other philanthropic organization in your community could help with visiting during your work hours? While waiting for TP could you get hospice help or medicaid help at home? It is hard...I cried every day for years...he was often ugly and mean with the HE, that was the worst part.

Hugs,

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4786
   Posted 8/23/2016 12:11 PM (GMT -6)   
roxie.

your scenario is much like themisters that themiz used to post about.

You can go to the SEARCH up on the blue bar and type in themiz and her old posts will collect in one place...read through a bunch of them backwards.

he was very ill with hep c and finally cured in the olden days with a horrible interferon treatment, he was very compromised by the hepatic encephalopathy, and was sleeping so much and not making much sense.

but his meld score was below 20 and others got the livers before him.

my partner mike's path was much the same, only he was a drinking man AND long time Hep C infected. in 2003 he was dx with cirrhosis and told that alcohol free with Hep C, he could easily go 15 years before "he got in real trouble." well, he heard the part abouit the 15 years and took up drinking again. that old crusty liver lasted 7 years and he gave it quite a work out...drinking more than every...daily, lots.

then he crashed, fast. we got him to a liver center and they told him to put his affairs in order and he had 90 days, tops bar transplant. his meld was 26. he was making NO sense and could barely dress himself or find the toilet in time.

so...as a drinking man he had to do 6 months of docuumented sobriety, have a 1ce a week ethanol blood test, or go to a boarding rehab. Since is was so sick I was afraid he would just die in rehab, so he agreed to do AA and the blood work.

He did the testing for transplant IN the hospital a bit at a time as he was hospitalized about a week a month until his TP. We thought he would surely pass every time he got admitted.

His rescue was the tumor in his liver...a tiny hepatocellular carcinoma....he got tumor points on his meld score and moved to the top of the list. you every see a patient and loved ones GLAD for a cancer diagnosis? Well, that was us. They brought tissues into the appointment sure we would sob...nope. Withing a month he was transplanted and so...he lasted 8 years between dx and lived to tell the tale. He is now 5 years and 3 months post tp. He qualified for hep C meds AFTER TP and is clear of that now too.

So, there is time, there are meds to get you through.

I'm sorry about the financial stuff...many face the same here. We went through most of our retirement savings before Mike qualified for assistance. The hospital helped out a lot.

I wonder if your church or other philanthropic organization in your community could help with visiting during your work hours? While waiting for TP could you get hospice help or medicaid help at home? It is hard...I cried every day for years...he was often ugly and mean with the HE, that was the worst part.

Hugs,

Mama Lama
MamaLama, Forum moderator - Hepatitis
Partner received liver transplant (May 1, 2011) FL
Hep C 1a Treatment - Sovaldi/Olysio (March - May 2014)
Undetected since week 4. Undetected 12 weeks post treatment.
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