The news on my health just goes from bad to worse. I won’t get into all the details, but here’s the bottom line: The only way I’m going to get significantly better is with a liver transplant. I have a meeting with the transplant specialists at U of M on Feb. 8th, but that will be a months-long process and I’ll need a live donor to give me part of their liver. In the meantime…
There’s almost no chance of stopping the gastric bleeding that is causing my chronic anemia unless I get the transplant. So until that point, this is basically my life now — constant weakness and fatigue, weekly blood transfusions that help a little bit for a few days, a suppressed immune system and high risk of infection. There are days I can’t even get off the couch, and leaving the house is increasingly difficult. If I want to maintain any independence at all, I’m going to have to get either an electric wheelchair or a mobility scooter to go anywhere. And that leads to more bad news…
There are basically two options. I can get a full-sized wheelchair or scooter, but that means I’d also need to get a vehicle with a lift on it to carry the thing around. Even a 20 year old handicapped van is in the $10,000 range, and a more recent one easily runs to $30,000 and up. Plus, I don’t have a handicapped ramp and my house is not set up for that kind of equipment. So that really isn’t a practical option. The second option is to get a power wheelchair that is portable and foldable, so I can fold it up and put it in the trunk or back seat and not have to spend $10,000+ on a new vehicle. That’s far more practical. Except…the insurance companies considers a foldable power chair a “luxury item” and doesn’t cover it.
And it has to have certain specs for me. Most foldable chairs max out at about 250 pounds, but I’m at about 300. So it needs to be a very heavy duty one that still folds up into a relatively lightweight package. I found a couple units like that online, but insurance will not pay a dime for them and they’re around $3500 (and because they’re not a standard unit, they’re hard to find used, though I’m still looking). But still, that’s preferable to paying half the cost of a non-portable option (I have a 50% co-insurance payment on durable medical equipment) plus $10-$30,000 on a vehicle to lug it around and still not be able to take it into my house (leaving them outdoors is warned against).
So that’s really my only option, to pay out of pocket for a $3500 portable chair and not have to spend 10 times that much but have insurance pay half the cost of the chair and none of the cost of the vehicle. There are grant programs for handicapped vans, but they’re typically only a couple thousand dollars and take a long time to get approval for. So that’s pretty much my only option. But I simply don’t have the money and my ability to earn money is now severely limited by my illness. So once again I must reluctantly ask you all for help.
Rather than setting up a GoFundMe and having them take a portion of the donations, the easiest way is just to send it to my Paypal, which is under firstname.lastname@example.org. Any help at all would be appreciated. Even if I can’t get the full cost covered this way, it will get me part of the way there and I can find other ways to augment it. This is really my only hope of maintaining any independence at all, something I already have precious too little of. I’m so weak and fatigued so much of the time that even the most mundane of tasks, like cooking a meal, have become a near-impossibility. The next step is probably going to require both home health care and home cleaning care workers come in, which I can’t really afford either.
This is why people hate insurance companies so much. Buying a portable wheelchair is a “luxury item,” so instead you have to buy something that requires you to also spend tens of thousands more dollars, which they’ll then partially pay for. It’s like someone’s sick, sadistic joke. I honestly don’t know at this point how much time I have left. It will depend on whether I can get that transplant or not, but that is months away if it happens at all. Thank you all for your generosity and caring over so many years. I wish we could wipe out autoimmune disorders so no one ever has to go through this hell.