Dying from Liver Disease is Sad

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MamaLama
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Date Joined Oct 2010
Total Posts : 4810
   Posted 10/22/2017 1:32 PM (GMT -7)   
Mike has been with his brother this month, coming home some weekends to help us move. He and his brother both had Hep C and cirrhosis from the usual causes..drugging as a kid, and too much booze since then.

Mike cleaned himself up, qualified for transplant, did well after, and cleared his Hep C along the way.

His bother did not qualify for transplant and continued to drink even after his Hep C was cured. He pretended he was sober, but not really...maybe he drank less often, or less each day...not sure what he was thinking.

But he is not going to get out of it this time. He had hepatocellular carcinoma several times. And was treated with radio frequency ablation, I think that is what it was. It did not disqualify him for transplant, so I know it was small His MELD score didn't get high enough for a VA transplant...those are really high qualification levels...like 30 I think.

Oh, and did I mention he was not really sober. He continued to smoke also, maybe they didn't like that either.

Though they scanned him often, his hepatocellular carcinoma metastasized to his spine and for the last months he has been using a wheel chair and has no feeling or strength below the navel. He was sent home to rest...

For the past month he has been in the hospital and 3 weeks ago moved to hospice. He has failed quickly. He is only 73 pounds now. In the last 2 days he has stopped communicating. Last rights today. Mike is there and very sad. The end is near. Hospice assures Mike that his brother is in no pain.

I pray for each of us to have a more gentle transition from this life. Liver disease/liver cancer can be a mean beast.

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.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1138
   Posted 10/22/2017 2:52 PM (GMT -7)   
So sorry to hear. Prayers for your family.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4810
   Posted 10/22/2017 3:20 PM (GMT -7)   
Thx...C
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 : 4810
   Posted 10/23/2017 5:17 PM (GMT -7)   
AT 9:30 last night, Mike's brother passed....at peace with his God and his brothers and sisters at last.

The VA has looked after him wonderfully and Mike was with him for most of the past month.

It will take a while to let this process.

ML
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.

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1138
   Posted 10/23/2017 7:14 PM (GMT -7)   
My condolences to Mike and you. Praying for your family
Take all the time you want.

Cirrhosis_2017
Regular Member


Date Joined Aug 2017
Total Posts : 43
   Posted 10/25/2017 10:50 AM (GMT -7)   
I am so sorry for your loss.

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4810
   Posted 10/25/2017 12:49 PM (GMT -7)   
Thank you. Since this brother was younger it was a shock...especially since they shared a diagnosis...and Mike is still with us...makes you really think....ml
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.

Post Edited (MamaLama) : 11/1/2017 7:52:00 PM (GMT-6)


healthynow
Veteran Member


Date Joined Oct 2010
Total Posts : 1774
   Posted 10/29/2017 5:02 AM (GMT -7)   
Condolences, thoughts and prayers for you and Mike. I am so sorry to hear this.

Big hugs,
Emma

Weets
New Member


Date Joined Dec 2017
Total Posts : 1
   Posted 12/6/2017 11:48 AM (GMT -7)   
Hi 🐞

I just joined moments ago and was drawn to your post about your husband Mike's brother who was under the care of Hospice when you last posted. (date ?) No matter as I just wanted to express my heart felt condolences for what you all are going or went through. Watching a loved one die slowly is so strange, pain wrenching and surreal. After caregiving for my mother after 13 years, to watch her waste away and die shocked me into a spiritual numbness that took over a decade to release and heal from.

I too was diagnosed with HCV genotype 1a in 1996 and for me, it took quite a while to finally give up my lifetime of bad habits. I got clean, stopped smoking, nearly died attempting 3 experimental TX with triple RX cocktails before Harvoni finally did the trick for me in 2015. I achieved SVR but at the time, my liver disease had already advanced to Stage 3 Bridging Fibrosis. I am now suffering with tremendous confusion, memory problems, disorientation, anxiety, lower back pain (Radiofrequecy Ablation) and even schedule 2 narcotics are not helping. You know how it is....Just wanted to take a moment to say hi and ask if what you think about my new issues. Pray you and Mike are doing well.

Think my memory/confusion and lower back pain is related to my Liver? I have a liver panel pulled every so often and have tummy scans for obvious reasons. What I have left of my liver is functional and the scans show no changes. Do you know something I might need to know?

Thanks MamaLama Weets

ppm guy
Veteran Member


Date Joined Apr 2010
Total Posts : 1138
   Posted 12/7/2017 10:44 AM (GMT -7)   
Hi Weets and welcome,
I can relate to your post, as I went thru a similar ordeal..

I was diagnose in 1992 with hep c, genotype 1a. I went thru two treatment with interferon/riba for a year twice. both times failed. I started the triple treatment in 2012 with those awful drugs. I ended up in the hospital with kidney failure. I completed the year of that treatment, and finally achieved SVR.

I had compensated cirrhosis at that time. Over a 2 year period my ultrasounds for liver canver started coming back normal. my dr did a fibroscan biopsy. the scan showed my liver healed from f-4 cirrhosis to f-1. Today my liver is full functioning..

I also have ongoing problems from what I believe is a result of those treatments. I had surgery on my back. I had to have a pacemaker installed to get my heart regulated. And I just got done having my bottom lip removed, from a cancer

if you are still stage F-3, you should still be having ultrasounds for liver cancer. Ask your dr the results of those tests. they will give info on the condition of your livers surface..

get back to us on what you find out.. best of luck

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4810
   Posted 12/7/2017 6:04 PM (GMT -7)   
Hi Weets.

WE are glad you posted in.

My Mike has the same type story, diagnosed in the 90's did a YEAR of the Interferon and Riba and nearly did himself in. He was sober during the treatment, but went back to his daily ways after. He stopped smoking and has not started again, but for the occasional cigar. Occasional.

His liver cancer actually SAVED his life. He got sober in 2010 after failing in every way...kidneys, liver, mental status, edema to his groin, shaking hands all the time, and random bleeding. His platelets were so low they were giving him transfusions from time to time.

He got sober in order to qualify for a transplant. His labs were terrible, his urine coke colored, and I mentioned his mental status...he was ugly to me and the kids and grands, a mean son of a gun who made me cry every day. They call that Hepatic Encepalopathy...your liver works so poorly, the wastes don't get excreted the normal way, rather travel about your body mucking up stuff....like ones good judgement and ability to put a filter on what one says.

Then he was diasnosed with Heptocelular Carcinoma...but it was too late for RFA, instead they gave him"tumor points" on his MELD score (Model of Endstage Liver Disease). AT his transplant center you needed a MELD score of 22 to get to the top of their list. He was a 19 at the time. The tumor points popped him to the top of the list in our area...and he cured his cancer via Transplant May 1st 2011.

He has done well.

BUT, he still had the gosh darn Hep C, which started right back messing up his nice new liver.

But it was still 2011 and the new meds were not here. He too was genotype 1a.

In 2014 he was cured be Harvoni and Olysio. Thank goodness. Now he is 6.5 years post TP and over 3 years post treatment.

He is doing really well. He is so thankful (me too)...sober, non-smoker, Hep C free, and the only cancer recurrences he has had have been on his SKIN (a risk with taking anti-rejection drugs).

If you had current labs with your Createnine, Total Bilirubin and INR you can calculate your own MELD score and you (and we) can see what condition you are in pretty much. Google MELD CALCULATOR and they will guide you along.

Let us know if you have any more questions.

Happy whatever you guys do mid winter...

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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