I want this nightmare to be over.

[emanon1501]

He is diabetic with anemia, kidney failure, and CHF, and he is not old at all. He is 37. His doctors consider him to be a "medical mystery." But his half sister who is 28 is having the exact same problems.

I just don't understand how anyone gets through something like this without being totally destroyed financially. I feel as though we are bailing water out of a sinking boat.

Do you have any kids? Some state provides Medicaid to parents if you have kids. But depending on the income and the state. If no kids, check with the state anyway to see if they offer some kind of assistance. Most likely there will be no assistance, but worth the try.

[hamchan]

No kids.

[JoeP]

One problem with our current medical system is that edge cases like yours (medical mysteries) are very expensive and are financially out of the reach of most people. Have you checked with other hospitals and doctors to see if their pricing might be more affordable? If you belong to a church, might they be able to help?

[Mesem]

He is diabetic with anemia, kidney failure, and CHF, and he is not old at all. He is 37. His doctors consider him to be a "medical mystery." But his half sister who is 28 is having the exact same problems.

I just don't understand how anyone gets through something like this without being totally destroyed financially. I feel as though we are bailing water out of a sinking boat.

So, I am assuming your concern is mainly financial?

[LivingAlmostLarge]

I assume you don't have health insurance? This is one of those times at least in the usa where you need to be working for an employer that provides it. Can you find a job even part-time at starbucks for health insurance? This is why health care in the US stinks. It's tied to employment.

[hamchan]

We have health insurance through DH's employer. My employer does not offer it. His employer pays for most of his premiums so it's doubtful we'd be able to get anything cheaper elsewhere. We have already met his deductible and his out of pocket maximum for this year. But we still have to pay copays for each visit, plus medication copays, which costs us hundreds a month on top of what we owe for the hospital stay. The deductible keeps going up every year as well, and that is making it harder and harder to keep up.

If it were just going to be this year we could probably manage to catch up at some point in the future, but this happens more often than it doesn't it seems like. Even if he doesn't wind up hospitalized he has had to have tons of medical care for things like bone infections and diabetic retinopathy (which left his almost completely blind) on a regular basis, and these issues are becoming much more regular.

[Barclay]

From a financial perspective, since you have met the out of pocket max, save everything you can for the rest of this year. You will need that money next year for your deductible.

[hamchan]

Just noticed someone asked if we belonged to a church. We don't, both being atheist. But even if we did this is not the sort of thing churches have the resources to help with.

We are not starving or going without medications. At least for now we make enough to pay the rent, eat, and eventually get the medical bills paid. But we have never taken a vacation together, and I would really like to do that at least once before he dies or is too sick to enjoy it. We want to be able to buy a condo and get out of this crappy apartment. And it isn't looking like that is ever going to happen, because medical expenses just keep consuming more and more of our income every year. As soon as we get one medical bill paid off something else happens, and DH isn't able to accrue any vacation time because he spends it all at the doctor. It is a demoralizing and soul-sucking way to exist.

[hamchan]

From a financial perspective, since you have met the out of pocket max, save everything you can for the rest of this year. You will need that money next year for your deductible.

That would be nice except we have $3500 we still owe for this year, plus we are still having to pay hundreds a month in copays.

[Mesem]

That would be nice except we have $3500 we still owe for this year, plus we are still having to pay hundreds a month in copays.

I see, then would you be interested in an online-stay-at-home job?

[LivingAlmostLarge]

Perhaps a different part-time job with health benefits to cover some of these costs?

[annibe11e]

I'm so sorry you are both going through this. A few things that popped into my head:

Do you spend a lot of time caring for him? If that's the case and you find it draining, some areas offer respite care. It's basically so you can have a little time off.

You mentioned his insurance. I'm surprised he's still able to work. Has he considered applying for disability? It would probably be cheaper for him to be on disability and have medical assistance than trying to continue working and paying so much for medical. I don't know if his medical problems have gone far enough to tip that scale, yet. Maybe even partial disability.

Since he is a medical mystery, perhaps he would qualify for some experimental treatments. They are paid for and he could receive compensation on top of it. I knew someone who got 25 migraines a month. They qualified for experimental botox injection treatment. The cost, which was something like $3500 a week, was covered. She is down to 15 migraines a month. It's something to think about.

Good luck.

[Baby_nurse]

Have you looked in to programs that can assist with your prescription costs?

https://www.pparx.org/

[Barclay]

Does he have life insurance? If his death is imminent, are you in a position to support yourself upon his passing?

[Gailete]

I have met with a person at my credit union about setting up an IRA but he said that I have to have three months of income (about 15k) saved before I can start one.

That is utter nonsense! You can start a Roth IRA or less than $100 at Sharebuilders an online company. I started one earlier this year and it is up to $1000 now

That being said, I feel for you. My hubby is self-employed, so no insurance, no sick days, nothing. He hasn't been able to work for 3 days already this week. I have chronic health problems and am on SS disability, but he actually takes more sick days than I do. Even if he did try to get disability, it would only be about a couple $100 a month and then a 2 year wait for Medicare to kick in. We need him to be able to earn what he can when he can. Going on disability is not the cure all at all for sure. Is your hubby on dialysis yet? I believe that Medicare should kick in immediately when he gets to that stage and paying for a supplemental policy means less co-pays (none for doctors or any treatments) and depending on the Medicare prescription plan your drug co-pays can be reasonable as well.

As to your frustration, I hear you loud and clear. If is frustrating to never get to 'do' anything. Either he is sick or I am. Any more a trip to the doctor is a big day out. Churches can help, depending on the caring they are willing to give and even to have someone that can help you keep up with chores, or household tasks that he can't would be a blessing. Or if they have a nurse that would volunteer some time to do those things for him that you have been doing so you can stop feeling like his nurse instead of his wife. You sound like you could really use a friend to go and get some non-stress time with, even if just going out for coffee or a walk in the park. A lady form my church has come and helped me with house work several times and we have had lunch and it was such a nice break from my usual life.

Take care.