Can't have a transplant - heart issues, emaciation

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Alcie
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Date Joined Oct 2009
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   Posted 9/25/2017 3:52 PM (GMT -6)   
Hubby finished all the tests, even passed cardiac stress, but docs say a couple of cardiac arteries need stents in places that are too difficult for any doctor we've consulted. One is only 60% occluded. The other has side arteries, and the area it serves is covered by the arteries from the opposite side. But I agree he is not in good enough shape. We even had a donor.

So next thing to consider is TIPS. His worst problem is the beach-ball belly and hernias. I just don't know if it's a good idea.

MamaLama
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Date Joined Oct 2010
Total Posts : 4794
   Posted 9/26/2017 5:39 PM (GMT -6)   
Alcie

I am so sorry to hear that things keep going from difficult to more difficult.

This may be to the stage of taking day by day to build good memories, to plan together how you want things to be from now on. To plan what he wants. Sad.

That is what we did when Mike was given just 90 days. He had a reprieve because TP was still an alterntive for him.

He has a brother who is not as lucky.

His MELD score is too low to get to the top of a list for a cadaver donor, his liver has been cured of Hep C so that's good, but his recurring liver cancer is the issue. He has had 2 successful radio frequency ablations that zapped small tumors. But this time the cancer has spread to his spine. He has lost all mobility below his belly button and has no control of bowels or bladder. He cannot stand at all or transfer from bed to chair or wheelchair by himself. So from a vital guy with liver disease he is now in hospice with an aggressive spine cancer and no hope of transplant. They are giving him pain meds as needed and they tell us he death is not imminent, but there is no cure or actual treatment for his particular diagnosis.

We are very worried, and Mike will head up to see his brother in the next days, try to spend some quality time, and maybe help him through the quagmire that is closing his apartment, utilities, etc, getting paperwork in order for medical and financial power of attorneys, final plans...kinda grim...but his brother has to do that stuff. I think the social worker is really good and his care seems to be excellent. The worst part is this guy is pretty young...younger than we are.


I will be thinking of your family in the next weeks and hope at he isn't in too much discomfort. Maybe the TIPS will do the trick. One of our member had a TIPS years ago and has done just fine...so long as he followed his good diet.

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.

Alcie
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Date Joined Oct 2009
Total Posts : 4899
   Posted 9/30/2017 8:41 AM (GMT -6)   
Thanks for the reply. You are right, time for memories. But how do you get him to stop working (doesn't need to but that's his whole life), and come home for real food instead of eating at fast food places. He can't understand what foods to avoid (salt) and what foods to eat (protein right now).

After TIPS is protein off the diet? How to survive? He looks like an escapee from a concentration camp.

ppm guy
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Date Joined Apr 2010
Total Posts : 1082
   Posted 10/1/2017 4:39 PM (GMT -6)   
hi Alcie,
I think its amazing he can work with HE, and ascities. If it makes him happy, why not keep working? Is his job aware of his liver disease?

I would definetly stay on his low salt, no red meat, or hard to digest foods. He needs to control his HE, especially at work. Protein is necessary. How is his albumin numbers?

Are his chances for a TP done? I was reading your post, that said,"he passed his cardiac stress test".
Hope you are doing well also. best to you..

Alcie
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Date Joined Oct 2009
Total Posts : 4899
   Posted 10/2/2017 3:25 PM (GMT -6)   
I can't understand how he keeps on working, to look at him, but his life is work. I'm happy he at least is working fewer hours. He doesn't need to work, well past retirement, just can't stop. Self employed.

His blood numbers are all good, but the liver is beyond repair. We spent most of a week at the hospital getting his testing done. We were hoping to get him in good enough shape for a transplant, but they won't do it because a couple of coronary arteries are blocked (60 and 80%) at points where no interventional cardiologist can stent them. His liver is too bad for open heart surgery. So it's a "Catch 22."

We had the problem of low MELD score because of NASH solved. Apparently, if you are not an alcoholic or have a hepatitis virus, you just aren't sick enough (bad enough blood numbers) to get near the top of the list, although transplant's the only hope for a cure for cirrhosis. We have a volunteer donor. But there's too little chance of surviving the surgery. His liver specialist told him that just looking at his emaciated face. But it came down to the blocked coronaries to eliminate the possibility of transplant altogether. He can walk fast enough and tolerated the chemical stress test enough, but there was no leftover ability to go on.

So now we are looking for a way to make life less miserable. The worst part is the beach ball. How did I manage 4 kids? The 8th month each time wasn't fun though but thankfully only lasted one month, so I understand. Since he can't have any sort of surgery, he's hoping the hernias will shrink some if the ascites is reduced by TIPS.

MamaLama
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Date Joined Oct 2010
Total Posts : 4794
   Posted 10/2/2017 3:41 PM (GMT -6)   
Alcie, this is a sad tale. To watch a loved one through a final illness. I guess, in the end...we all face this. But his has a pretty definite expiration date.

Do you think he keeps working worried that you need the money to go on after...can you make a plan that sort of works through that? His cirrhosis isn't messing too much with his mind if he can work. Mike couldn't tie his shoes or find the toilet some days. Can he take in a partner that can take over and still pay you some for the opportunity? Of course this is none of my business, but you have to look after you too.

We are working with Mike's brother who is now in hospice...really sad. We know he is safe, looked after, clean, eating what they know are best for him, and reading, watching TV and settling in to his diagnosis. They have some social worker helping him with "stuff" and a therapist coming in for some death and dying things. That seems to be helping.

Wishing your family the best in a really rough situation.

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.

Alcie
Veteran Member


Date Joined Oct 2009
Total Posts : 4899
   Posted 10/3/2017 3:16 PM (GMT -6)   
He's addicted to working. Can't resist going to his office even though he promised he'd take Tuesdays off. He doesn't need the money. He's had a decent offer for his building.

His mind is fine for things he's done for years. He just can't anything new, like the new smart phone. I had to turn off the interior rear car light 3 times.

He's not taking care of his appearance well enough, doesn't really care. Misses the same spots shaving. I got him an electric razor, which helps when he uses it.

I'm trying to find out if he can get an earlier appointment with the liver doc. Waiting 3 more weeks is torture since the news a couple of weeks ago that a transplant is not possible. I have thought this would be the decision for a few months, and I think he's accepted it too. But the possibility of TIPS has given him hope that he'll live 10 years or more, which I don't believe. So he's not making plans, getting his affairs in order, and there's a lot of affairs he's hidden over 50 years!

Thanks to the group for encouragement. Can't talk to relatives because they get bored.

A.Ziffle
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Date Joined May 2011
Total Posts : 2071
   Posted 10/9/2017 7:05 PM (GMT -6)   
I have almost 10 years TIPS longevity. Your Hepatologist should provide you with a list of do's and dont's for dietary requirements and so on. TIPS can get get clogged up and lose its flow over time but fortunately mine has not. TIPS is a bridge to transplant and may just be what he needs to have any other problems he has to straighten out fixed, Buying him time. TIPS is a ditch effort to provide a quality of life but it can go horribly wrong also. Encephalopathy could increase or manifest afterwards. Hasn't for me but it can and does happen.

I had the "beach ball belly" and malnutrition issues. TIPS was offered to stave off risk associated Paracentesis procedures I was having done bi-weekly. Twelve to eighteen liters of fluid during a average visit was removed. I too am impressed he is able to work at this moment. I went into renal failure along with a severely compromised liver. Woke up in ICU after coma for a week.

It took me 2 years to get approval for TIPS. I'm a alcoholic (non practicing) and that adds a whole other dimension of hoops to jump through for transplant. Currently I am doing fine but I still have small bought's of Encephalopathy. I have MRI and sonogram done every six months until recently. A nodule on my liver had appeared on my last visit. I go every 3 months now due to the nodule. Cancer is prominent in busted up livers so even the slightest formation is scrutinized in hopes of finding it early.

Ziff

MamaLama
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Date Joined Oct 2010
Total Posts : 4794
   Posted 10/9/2017 7:58 PM (GMT -6)   
Ziff...good to hear from you, and hear that Tips is continues to do the job. Worried to hear about "nodule." Once the docs see "something" they keep a keen eye on it...early detection leads to best outcomes....so I say, take the pictures as often as they like. I get my scans done twice a year now...and I'm glad to show up on picture day!

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.

A.Ziffle
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Date Joined May 2011
Total Posts : 2071
   Posted 10/10/2017 10:45 PM (GMT -6)   
Thanks ML. Nodule to small to sample currently. I'm fortunate to have a relatively normal life. Imaging is nothing compared to my past medical issues.

Ziff

Alcie
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Date Joined Oct 2009
Total Posts : 4899
   Posted 10/11/2017 2:45 PM (GMT -6)   
Thanks for the information! Since he can only get appointments with the liver specialist every 3 months we still have a couple of weeks to even ask about TIPS. We only heard of it when a nurse called saying the transplant was not going to be possible and added that there was this procedure which might help.

The risk of encephalopathy is worth taking since there is no other help we know of to make him more comfortable. I do wonder though, how often and what is done to check for nodules or cancer. Also, how would he know if he has encephalopathy? I can tell when he's not right, but he won't listen to me, and he keeps on working, driving, not coming home for proper meals, ... Renal failure is a concern too, but is it something I could recognize without him getting blood tests?

It's great to hear of such a huge success for TIPS. I will be so happy if he can be less miserable.

A.Ziffle
Veteran Member


Date Joined May 2011
Total Posts : 2071
   Posted 10/11/2017 11:23 PM (GMT -6)   
Lactulose and Xifaxan is what normally prescribed to rid our bodies of toxins. The Xifaxan cleans out the digestive system and Lactulose rids the body of ammonia and other toxins. Our liver does all the filtration under proper circumstances. The above medications resolve the problem of damaged liver filtration.
Ammonia cause's brain malfunctions. No liver to filter blood and the toxin reaches the brain. The outcome is irrational behavior and can lead to coma if not treated.
Malnutrition is caused by the bodies reaction to lack of proteins. Muscle wasting is the result. The human body will do what it needs to survive and will rob muscle tissue to get it's needed nutrients. That is the cause of gaunt appearance.
A staggering walk can be associated with Encephalopathy or quick mood swings. You will have to be strong and understand that it's not him so much as it is the disease. I feel for you, My wife went through hell with my sickness.

Ziff

Alcie
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Date Joined Oct 2009
Total Posts : 4899
   Posted 10/16/2017 3:24 PM (GMT -6)   
Thanks, Mama and Zif.

I'm concerned that taking Xifaxan will kill off the good bacteria and possibly give him C. diff. I've been giving him probiotics for in between doses. I hope that's right for this condition. Lactulose alone keeps him in the bathroom several times a day.

auntkay
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Date Joined Apr 2004
Total Posts : 1200
   Posted 10/20/2017 6:53 AM (GMT -6)   
Hi everyone i haven't been on here in a very long time . Was reading this post and it's very informative .Thanks to all who contribute, So my hubby is in liver failure also with HE, He survived stage 4 liver cancer with mets to his lungs has been cancer free for the past four years. His recent scans show something on the liver again. they haven't said cancer but are watching it.He refuses to take any of the meds to help with the HE and yes his moods are like the wind changing from one min to the next,I have stood by him thru this journey but as a caregiver been having some issues of my own three surgeries in the past year and a half.So i have had to get help from family to go with him to appointments because he can't retain the info. His last appointment was with the GI because he needs esophageal varices banded among some other procedures. He went to this appointment alone and refuses to tell me what was said (he hates me at this point) and has quit talking to me. i'm at my wits end. His last scan showed that his liver has shrunk so much that the tech asked him if he had some of his liver removed, I feel he's living in his last days and it hurts to know he may die with all this hatred in his heart. What to do? Auntkay

ppm guy
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Date Joined Apr 2010
Total Posts : 1082
   Posted 10/20/2017 7:10 PM (GMT -6)   
Hi Ziff,
Just wanted to say hello and wish you the absolute best with
Your new diagnoses

MamaLama
Forum Moderator


Date Joined Oct 2010
Total Posts : 4794
   Posted 10/22/2017 1:50 PM (GMT -6)   
auntkay,

this path is awful...liver disease is physical and mental for the patient AND the loved ones for sure.

mike made me cry every day for a long time.

sending someone with him to dr appointments is a great plan, as you say, he does not remember so going to the appointment is foolish...if the patient can not remember the care plan. will they band his varices?

when mike was at his worst, the xifaxan and lactulose did the trick, and a bag of albumen generally went along way in making him feel better all over. you could see him improving in the way home in the car.

are you letting him drive? is it safe?

i don't think he hates you, i think he is really really ill. can you have some respite using caregivers so that you can be on our own and look after YOU some of the time?

my mike was successfully transplanted which was a miracle in itself and so he has been much more reasonable in recent times.

my heart goes out to you,

hugs,
mamalama
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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