Helping deal with the depression while waiting/praying for TP

I met a guy at our TP center with the same story...25 years and he was 80. God bless him. I had myself a good cry over that one. But for us, each day is a gift. Hugs ML

Good Morning Alex,


I may have some things to help you with various, approximate lengths of survival with transplantation. Can I ask how old your Dad is? My husband just turned 64. I figure we are close to his age ;)

Source: American Liver Foundation:
6000 liver transplants are performed annually in the U.S., and the number continues to rise. Liver transplant patients have an approximately 86% one-year and 78% three-year survival rate.

[url]Survival rates after liver transplant according to Mayo Clinic:
Your chances of a successful liver transplant and long-term survival depend on your particular situation. In general, about 72 percent of people who undergo liver transplant live for at least five years. 28% will die.

Hep C:
I hear the number is 60% survive 7-10 years post transplant with HCV. Those without HCV 75%. These are, of course, not all factors.

I am optimistic this number will improve with the new treatments, and for those who obtained SVR. That is why we were told it is important to eradicate Hep C if one is facing transplant.

There was a study of long term survival rates and here is what I can give you. Out of over 3,000 patients in an 18 year period of time the survival time after 1 year=79%, 5 years=67%, 10 years=57%, 15 years=50%, 18 years=48%.

I also read there were 8 patients who were known to have survived 30 years in 2011, but I can not find where I got that info.

But what I do know.... without a transplant, patients with ESLD will die. No one is immortal, and we all die. Those who are transplanted and get 10 more years seems like a good deal, if they regain an acceptable quality of life. Big Hugs

Alex, How old was your Father's Father? Themister's Mother is pushing 90, but his Dad died of cancer at 55. All of themister's siblings are alive and in excellent health, and other than themister's liver disease and what it has robbed him of...he is healthy. We still face aging and other health complications, regardless of organ transplant...so...kind of a roll of the dice, isn't it? Your Dad should have his papers in order for his family, and then plan to survive and thrive.

If I can give you one more tiny suggestion? Don't put your life on hold. Don't wait until next year to take that vacation, make that football game, get married, or have the children you desire to have. We do not always have next year, or tomorrow. Do all of that and take one day at a time. Life is fleeting, but not easy to see in the midst of a crisis. Big Hugs

You don't mention your Mom much. How is she doing, Alex? You said she still works and has arthritis, which I also have for years now...but so many our age do that I feel like it is just part of being this age. I was concerned about your Mom because you don't really mention her role in caregiving, and this usually falls on the spouse. You don't need to answer, if you prefer not to. Big Hugs

This is great! The joint effort for your benefit, as well as her's should insure no one needs to loose a job. And with two caregivers to help your Dad, everyone gets some down time. Keep things moving and positive. You collectively have many hands and hearts. Things will move along swimmingly:)

Alex,
The spilled coffee would have spoiled my day more than anything else. You know those are the things we never forget, and have for funny stories to tell when we are old. I really understand tough days, and I am sorry yesterday was a rough patch.

I would think the transplant coordinator at Iowa could contact Loyola, possibly? Follow-up with both coordinators and see what needs to be done to assist in getting the tests to Iowa, if possible. Big Hugs

Lost Son,

I never want to lose site of the fact that those with liver disease are in a bad way. Without proper recovery, treatment, and sometimes transplant their situation is dire. Like anyone with a life threatening disease, the patients are going through a lot...from their diagnosis to their symptoms...it is hard on them. Think of those with terminal cancers who have exhausted all treatment options, or those with ALS or Alzheimer's diagnosis...it must be awful, and we can't know the depth of their feelings.

BUT, that said, the role of caregiver is VERY rough as well. We are FIXERS. We want our loved ones to be OKAY, to get whatever treatments are available, and we want it NOW. We will go anywhere, anytime, spend cash and TIME we don't have to that end. WE put our hearts and souls into it and hold on to the dream that if we try hard enough we can make this better..

Or I do.

Between Mike's ALD, Hep C, HCC, HE, edema, etc etc he has been a mess...physically and emotionally. It got to much for me in 2011 and if you read my old posts you will see our members were talking me down from a ledge about every other day. Mike's big thing was his affect...instead of sad and depressed he was down right UGLY to me. So why trying to do everything I could to keep him alive, he was criticizing and screaming at me.

I about came unglued. So...I went to counseling and to a psychiatrist. I got some good talk therapy and some anti anxiety meds. (We call them my DONT BITE MIKE BACK pills...because that was started happening.)

Now that mike is sober, post transplant, post Hep C treatment and has no HE, edema, etc. we have settled into a calmer life. Sure he has problems, but they are manageable so far.

BUT, I have a new caregiver role. My sister has early onset dementia and I've moved her to 3 miles away from me in a duplex that is manageable for now. She handles all her grooming and day to day things, and she drives, but she doesn't know how to get anywhere anymore or how to use the GPS in her car. So I go with her to every appointment. She is giving me a hard time about taking over stuff and I wind up behind her cleaning up lots of stuff...double paying bills or not paying bills. I need to take that over completely, but so far I am just able to audit the messes she makes.

AND, I am back to a counselor. I just want to do what I can for her to stay as independent as possible for as long as possible. But she is nasty some too. And that is hard. She tells me she isn't an idiot and I shouldn't treat her like an idiot...so I have to have a happy face no matter what craziness is going on. Last week she was hysterical because her phone got turned off. Seems she wrote them a note with their bill and told them she moved and turn off the phone. Well, she did move....OUT of her NY apartment...but she sent that note to the FL phone company. She gets hysterical and panics each time she messes up.

The counselor says I can't fix everything. That I have to fix the most important things....like making sure she takes her psych meds and heart meds...which she is only about 70% compliant with.

I'm sorry this is so hard...but IT IS HARD. If you need some support, get some, go to a support group, go to a counselor. This is not going to get EASY.

Hugs,

Mama Lama

ML,

I know it is hard, and I have to come to terms with things only getting tougher. But it is so worth it when I see how the little things bring a smile to my dads face. Like the Sunday Football games, grocery shopping, reading books (He loves reading those "how to" books) He loves learning new things.

I think the biggest hurdle thus far has been the mood swings. He goes from Happy, to sad, to mad to positive, to depressed. All in one week! I think that is a big thing for people to know as a caregiver because you need to adjust your own way of thinking and have lots of patience.

Currently we are living as normal as possible, by that I mean we are doing our regular day to day and my dad is still able to care for himself for the most part. We are treating him as if this is just another thing to overcome and not necessarily treating him as if he needs help with everything. This is because he is a very proud man and the more we do for him the more he feels bad about things.

On a side note, things are looking good for getting listed at Iowa. They are just asking for a few things and we should be good they say! They are just needing a few test results and some paperwork and hopefully he can make the list.

TM,

Same at our household! Not to mention our Bears pulled off a HUGE upset last night

Every Monday I look forward to Sunday!

They just need some medical records from Loyola and they want him to enroll in some physical therapy to gain some endurance in the event of a surgery. They said otherwise he is a good candidate. But I will wait until it is official to be happy.

Deb, I know those emotions are out of your control, which is why those good moments should be positive. Overall my dad isn't too bad but he will have bad stretches.

Last week was good, this week is off to a bad start. He is in need of a paracentisis procedure (which was scheduled today) as he is really in pain with all the liquid. As of last night his edema was so bad he can not wear any shoes and his feet are bigger than I have ever seen. I just found out that he missed his appointment! Not sure why but I hope he can reschedule quickly. My mother said they told him it was at least another 2 week wait. I find that hard to believe and will need to make a few phone calls when I get home today.

TM,

He is not taking lactulose. One thing I did want to mention about his MELD is that it went down to 20 as of a week and a half ago. He was at 24 prior to that. I know fluctuating MELD scores is pretty common, but just thought I would throw that out there.

I am usually at all his appointments but thought his brother would help out this time but I guess I will get back to being the key person.

David, he is rescheduled for this Thursday. I am thinking we might just need to go to the ER. I am not sure he can hold off that long, and if he could I am not sure it is wise to wait?