Hi Butterfly, welcome to the forum.
I am sorry to be so long in responding, but I have been trying to find the right response.
I hear how worried you are about
hubby and how overwhelming the situation is with balancing finances and his medical care.
In my heart I cannot believe a working family, with two working adults, one with proper Insurance, in this country, at this time, has to choose death over life because of the cost of medical care. I cannot believe this is what we want our country to be like. But in some cases, this is what we have become.
Others have suggested you look into the various programs out there for folks:
Social Security Disability
Medicaid
Medically Needy Pharmaceutical Programs
These are good suggestions. Follow up on those. Lots of info on the Internet.
And Angie has shared her sad story...where things just went downhill with her hubby for 2 years before he died. She was pretty frazzled for a while and now is desperately sad, but I think she will be okay...she is a fighter. You need to become a fighter too.
My thoughts:
Your hubby has a terminal illness. It is likely, without transplant, he will die in the next year/few years. If he goes the transplant route, and if he is found medically well enough and the most ill in his blood group in his region, and if a donor liver becomes available, he can gain some more time. Will he be healthy and 35 years old again? No. He will be alive and living a changed life with lots of meds, lots of dr appointments, and fatigue. Maybe some other stuff. He may or may not be able to return to work in 6 – 12 months. Some do, most do not, at least not at their former career.
This is my recommendation: Begin to understand that his time with you is shorter than you might like…that you will be widowed or the caregiver of a husband who can no longer be an active part of the decision process in your household…sooner than later.
You will have to fix the stove, mow the grass, clean out the rain gutters, change the flat tires, pay the bills, chain saw the dead tree limb off the garage roof, cook, clean, make the meals, do all the driving, organize the retirement account, fill out the Income Tax forms, walk the dog, change the kitty litter and put out the trash on garbage day, laundry, etc etc, etc. AND WORK. Maybe you already do all these things. If not, it is coming. Sorry to be so blunt. I hated changing the water filter the worst…that thing is nasty…all that orange goo…eww. Oh, and the AC filters...the ceiling in the living room is 11 feet. Me on that ladder is quite a show...I am 68 and overweight...not a pretty sight on a ladder!
Though your hubby is working now, it is likely he will not be able to work through to his last days or to the transplant day. There are decisions that need to be made. If it is just you…where will you live, how will you get by? If/when his income stops, then what? Can YOU get a job with benefits then? Will it be enough to house and feed you (and maybe him if he is still with you) in the manner you have become accustomed? Do you have to move to smaller quarters NOW? Maybe. We lost a house. Others have as well.
Will you be able to stay where you are? Afford the car(s) payment(s)? Keep extended cable? Eat in restaurants? Afford someone to look after him during your work shift?
Make the changes now. Don’t let this be a surprise. The situation is dire.
While he is still working and "with it", you need to make end of life decisions together…does he want heroic measures to continue his life if there is no chance of quality of life? Feeding tube? Ventilator? Get a DNR signed while he is alive, with the things he wants. What kind of funeral will he want? Talk about
it. Get a medical power of attorney and a general power of attorney so you can conduct his business. Face this together. He has to know his prognosis isn’t good. Hug each other. A lot.
Is the deed of the house set up like you want it to be...in your name or joint with right of survivor? Other estate matters? The life insurance paid up? The beneficiary clear? Are there children/grandparents? Do they know? Are they visiting? They should be.
Bad things happen to good people. Something bad is happening in your family. Plan, decide together.
If the Stage 4, The End Stage, is protracted, there is good information on the Internet about
Medicaid in your state. But the family income keeps many people’s financial status over their limits. You have to be in a bad way financially to qualify.
In our case, though Mike and I have been together for years, we are not married. And the finances are just his finances. I have never been able to carry him on my insurance, take his meds on my taxes, etc. He is not on my deed. He owns no car. He has no life insurance. He has qualified for Medicaid and that paid for his pre-transplant care, his transplant, and his post transplant care as well. His meds are covered. Sometimes the docs want to give him a newer drug and Medicaid pushes back and we write letters and somehow it gets covered. One of the meds pre-transplant was Xifaxan…$1300 a month copay…and they covered that after a grouch letter writing campaign! He has to jump around hoops to do things the Medicaid way, but so far so good. He turns 65 next year, and since he was always a working man, he has a check coming and Medicare. He can’t wait to have the better insurance.
Accepting the inevitable is one way to go, surrendering and not going the transplant route is fine. It is a decision that a patient can make…a brave decision that some of our folks here have made. Others become ineligible for transplant because of cancer or continued alcoholism. Still others don’t make it to the finish line in time…no organ is available soon enough. That is sad.
The ESLD is a process…longer for some than others. And it takes the humanity from a person.
You will need support, come here, ask questions, post on the Caregivers thread about
your feelings and folks will share back. I know before transplant when Mike’s ammonia was bad and his attitude worse, I needed a counselor who was very kind to me and helped me a lot.
Oh, and keep an eye on the driving. Mike got to be an aggressive and then just a crazy driver. I had to talk to the doc who told MIKE no driving. He hated that and drives again now after transplant, but he knows if he starts driving crazy again he loses the keys again. AND, I have no idea of your situation….but, no guns. If there are guns in the house, call the kids, sell them, give them away. NO guns. Sorry. Any of us will tell you the same.
And there is a stuff about
the adult diapers...and latex gloves for messes that I will leave for another day.
For now, healthy diet, follow the docs orders, no booze, take the meds, and be kind to each other.
Let us hear how you are doing.
Liver disease is not for sissies!
Hugs, Mama Lama aka Carol
Post Edited By Moderator (hep93) : 6/8/2013 12:32:39 PM (GMT-6)