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.
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.
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.
Perhaps the queues are shorter now, or perhaps your mother’s doctor decided that putting her on the list was the best way to avoid a lot of fuss (and to get her off the booze), even if there was little chance of her getting to the top of the queue. It’s a horrible situation for you all, very difficult to bear.
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.
My husband just passed away from cirrohsis and had severe hepatic encephalopathy at the end. He was on home hospice a nd I cared for him alone when i was not at work. He had ascites and the confusion etc
First of all if she has ascites - is it severe enough that she is going in for the fluid to be drained off and are they doing a full or partial removal of the fluid?
It helps considerably if you can schedule them to do a full paracentisis not a partial.
The tiredness is probably due to a continued buildup of toxins in her system as her liver fails . My husband went from sleeping alot to a coma right in front of me and I did not realize because it happened so fast.
I am surprised they approved her for a liver transplant at this stage. If she is new to the transplant list she will have to wait for her turn to comeup and if her condition is as you describe then she is End stage. I am no doctor but this experience is very very fresh in my mind and yes everyone is different but I honestly do not think your mom will be here for too much longer. Frankly you should hope she is not. dying from this disease is horrible. For the patient and the family.
Once again I am not trying to be depressing and i am not a doctor but this was my experience.
She has to take the lactulous and you should ask them to add Xifaxin to the regimine as helps keep the production of ammonia in her gut down. Be aware the script cost 3000.00 a month but is covered by medicare etc.
My husband almost died from 11 ruptured varicease in his throat since they could not get the bleeding to stop completely they did a TIPS procedure which relieved the pressure on the portal vein BUT it made the encephalopathy worse.
You should avoid any kind pf procedure involving any kind of anesthesia. They jus cannot process it out of their system and it cause severe ecephalopathy.
Eventually this "confusion" will become permanent.
I think the term confusion is used far too loosely. It presents just like dementia.
except that it also includes very vivid hallucinations. My hubby used to insist people had come to visit while i was gone. once it was 3 older women and they made tea and one sat so close to him her angorra sweater made him itch....of course that never happened.
Memory problems will increase and become so severe that the patient eventually cannot remember who they are. Can you imagine not knowing who you are where you are and who is taking care of you.???
They are easily agitated and have to be medicated heavily. OR you can endure hours of them yelling repetitive things at the top of their lungs. My husband just used to yell his sisters name. But it will make you crazy listening to that for 2 or 3 hours straight at 2 and 3 am
He fell and broke his hip and then could no longer walk. Now we are talking adult diapers and needing to be physically strong nough to lift them at least to some degree and use a gait belt to shift their weight to move them from one place to another. I was gifted a hoyer lift from the VA and it was the best thing ever since I am 5 ft tall and he was 6 ft 1inch and out weighed me by over a 100lbs even wasted by illness. Dead weight is heavier in a sense than someone who can help you move them by holding on to your arm of neck etc. He was no help he lost all his ability to even feed himself. He could not even hold a cup to get a drink. he was completely dependant.
He hd his hip operated on and fixed but his confusion was so bad he could not do the physical therapy.
Basically covid killed my husband . he was so confused he thought i had abandoned him and the hospital and care facility did not take any time to explain to him about covid They did not like him as he was a belligerent and uncooperative patient. they used to over medicate him and stick him in a room at the far end of the hall close the door and just leave him there to yell most of the day. The hospice nurse told me when she went to evaluate
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!)
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.
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.
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.
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.?