Hello, my mom was diagnosed October 13th 2020 with alcoholic cirrhosis with ascites. She’s been staying with her sister who’s aged and has her own medical problems but I can’t stay home and take care of her because of work. ( I’m not going to go into what’s happened between then and now but If you’d like to know more let me know.) Just recently she stopped taking her lactulose and it made her severely confused. We got her back on it but she’s not bouncing back much. Still very confused. She’s lost a lot of weight (probably weighs 100 lbs currently) and doesn’t eat much or drink much but we try. Just recently she’s not able to stand or walk or get up to go to the bathroom on her own. She’s in diapers and my aunt has to change her. Today we saw her Gastro doctor for the first time and he’s starting the process to get her on the transplant list! Which is great. I’m just worried she won’t last the wait it’ll take to get a transplant. I’m working on getting her Physical therapy now so we can get her strength up. Has anyone had experience with a loved one or friend who’s looked pretty dire, yet made the wait to get the transplant? Side note: her blood pressure is really low so I’m thinking the tiredness will be helped by bringing that up because this last two weeks all she does is sleep. My wife is on the phone with her primary now to help with the low blood pressure. Any and all advice is welcome. Like I said, I’m 30 years old and I thought I had plenty more time to deal with my parents being this sick or passing. Everything from financials and caring for her, I’ll gladly hear any suggestions or if you can relate in any way I’d be nice to talk with you. Thank you.
My DH had a liver transplant 14 years ago, due to HCV that he acquired in the Army. He developed cancer and they told him he had 9 months, tops. We didn't accept that and he essentially worked his own way onto the transplant list. And it did take a full 9 months to get him transplanted. We were given a miracle.
Now the reality of people who have drunk themselves into liver failure--they must be 'dry' for at least 6 months first, and I mean, not even ONE beer or a glass of wine.
They must make every.single. appt. with their doc. And they need to be 100% compliant in the dr's care of them. The doc is their advocate and will be on the team of people who decides who gets and doesn't get a liver. There are FAR more 'needs' than there are organs. So the waiting game is brutal and scary. And the recovery is also brutal and scary.
Once accepted--and the doc has to present your mom as a possible candidate for TP--which she may not make--then the waiting game begins. She will have more tests and bloodwork than you can imagine. Heart workup, colonscopy, endocscopy, x rays. No smoking. No drug use aside from what doc allows. You will jump from hoop to hoop to hoop. It's NOT for the faint of heart.
How old is your mom? Some states have limits. Over 70? Not even considered. Just depends. DH was 55.
You're in for the emotional ride of your life, I won't lie.
I hope your mom is ready for the testing and the possibility that she will not qualify for a transplant. They score each patient (you'll hear the term MELD score) and the higher the score, the 'closer' they are to transplant. HOWEVER--there are never enough donor livers--many people die, waiting.
I hope your mom is strong enough and compliant enough to get through the prelimiaries. (Takes a couple months)
To tell you how strict they are: Dr Joe ordered a colonscopy for a patient for the day after T-giving. She was in the hospital and very sick. He got a call at 9 pm saying she was refusing to do the prep. It frustrated him as he had pulled A LOT of strings to get her pre-transplant testing done and this was the last thing she had to have done. It made him mad enough he got up at midnight and went to the hospital to talk to her. I guess she was pretty awful to him and said she 'just didn't feel like doing a colon prep, she'd do it later'...and then she said "so what's gonna happen to me?" Dr Joe is nothing but honest. He said "You are going to die."
And she did, the next morning. Not b/c she didn't have the procedure, but b/c she had been a pain as a patient from day one.
I wish you all the luck. It is not easy and it's expensive and scary. We had a lot of emotional support, but in the end, it was DH and me, slugging it out.
Good Luck.
Mum's friend did not live sober long enough to make the list.
Another local woman who I got to know had drunk heavily in her younger years, but had been sober for 15+ years. When she developed Cirrhosis, she was immediately eligible to be on the transplant list and she got a new liver.
Mum's cousin had a virus attack his heart. He was very ill and his heart severely damaged. He was put on the transplant list as he was an otherwise healthy 50 something man. But the damage was too great and he got too sick to be able to survive surgery.
My brother in law has genetic heart disease. He had his first heart attack playing hockey in his 30's. He is 60 now and has been on the wait list for a new heart for a couple years.
Until I started to write this post I had not considered how many people I know who have had organ transplants, died waiting for one, or currently on the wait list. A girl I went to school with had a heart transplant when she was 19, another girl I went to school with Aunt had a hear- lung transplant and I am sure I am missing one.
Back to your Mum, she is very very ill. She may or may not get a liver in time. Prepare yourself for that and make sure everything is in order.
I would suggest your mother see a hepatologist, a liver specialist, who is also experienced in transplant surgery, for a second opinion. They can go over the transplant requirements and assess if your mother is a viable candidate for transplantation. You didn't say how old your mother is, but I would assume well under 60 if you are 30.
As a side note, I found out last August that I have non-alcoholic cirrhosis. I had no idea that fatty liver could progress to cirrhosis. I now have labs every 3-6 months. No ascites yet, but I do have portal hypertension and a slightly enlarged spleen. No cure, just trying to slow progression. And I am 65.
Prayers for you and your mother (and your aunt!)
It was the most horrific thing i have ever endured watching my DH die in front of me from this awful diease. Since he only passedOctober 27th I am still grieving but I am going to have a lot of problems left over from this experience. I have no sleep pattern left i struggle with the tendency to agoraphobic I loathe to leave my house. just to name a few. I do not know how much longer I will have a job at this rate. Still I am glad I brought him home with me. I was granted 2 afternoons that for some reason he woke up completely lucid the entire day. It was so good to talk to him and have him know who i was and ask me about stuff like how is the car running etc. it did not last but the one day and happened only twice in the 4 months he was on home hospice.
I hope your journey is less traumatic. End care is difficult without help. They cannot be left alone for even for 5 to 10 minutes. Unfortunately that is why it was so hard on us. We have no family and care provided by agencies and funding is very limited. I ended up doing most of it by myself. While working full time.
It is just so sad and exhausting on top of it all.
My best wishes to you and your family
A low blood pressure can be an indication she is bleeding in her stomach or throat you should have that check ASAP.
If your Mom is in for this fight then I am in her corner and all for it. But I think you do understand that she is starting in a very weakened condition, which lessens her survival, or recovery. That she has severe ascites and is so emaciated means that she is very end stage. It is somewhat surprising to me that, if liver transplant were an option, it was not mentioned until now. I think you may face being told she is not strong enough to undergo surgery. You will know that all transplant organs are precious, and must be given to those with best chance at survival.
I wish your family the best. I hope you will update us.
If you think it might help and if she can tolerate more fluid, that might help her pressure stay up enough. You are so correct. Low blood pressure leads to exhaustion and sometimes it is all they can do to breathe in and out with low pressure.
I would assume Mom has low income. You may want to consider medicaid in home so Aunt can have some help. I may talk to that Doctor again and ask what are Moms chances without a transplant soon. I would also consider Hospice. They will keep Mom comfortable and pain free. She doesn't have to be dying, it could be palliative care. Mom would get diapers, prescriptions, an aide to bathe her and maybe give Aunt some respite.
So sorry you are going thru this.
Again--My SIL was hired by his hospital specifically to work on the living donor transplants. He's fresh out of training and excited to work on this.
Still--if you need a liver transplant you are going to need to be patient and also always maintain the 'this may not work' in the back of your mind.
For a 'healthy' man, like my hubby, it still took 9 full months and only by the grace of God it didn't take longer.
For the record, post transplant life is beyond horrible for about 100 days. Then it's just slightly less horrible for about another 100 days.
Good for you for keeping up with your job, etc. Your mom made her choices and you need to make yours to keep some kind of normalcy in your life and marriage as you deal with this difficult and serious health conditions.
I would look at natural remedies for liver failure. Are there any foods or supplements that can help her while you figure out what else can be done?
Does she have any will to live? Is she trying to help herself or giving up? Will she eat, etc.?
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