sorry it's been a while. Work and anxiety kinda got to me, so I've been preoccupied. For those out of the loop, my mom has CTEPH, which is a condition where she gets blood clots in her lungs.
Her early doctors didn't catch it, and it spread to the point where it's borderline inoperable. She has a few options. One is that she can be on oxygen for the rest of her life. This isn't ideal, since her clots
are bad enough that walking across a parking lot can make her out of breath. Her new doctors have also warned her that it's putting a ton of strain on her heart, and eventually, she'll die of heart failure. Luckily, there's a solution: it's a very intensive surgery where they drain the blood from her while artificially pumping her heart, then go into her lungs and scrape the clots out. Her condition is severe enough that only one hospital will even consider her as a candidate, though they pioneered the technique and have a 99% success rate. With insurance, the cost of the surgery itself is $12,000. That's the amount my mom actually has to pay. When you add in oxygen, the flights to and from the hospital (Idaho to California), inpatient care, physical therapy, and the three months my mom will be unable to work due to recovery, the grand total is $30,000.
When my mom told me of this, she said that her surgery was scheduled for August, and the first on-site evaluations begin late July. Anyway, at the time, that gave us 2-3 months to find a way to earn $12,000-30,000. It was highly, highly stressful. I sold some music gear, cut expenses, and encouraged as many of my family and friends to donate as possible. We raised $7,000 on GoFundMe, which helps a ton. Still, that's short of even the bare minimum. I feel like I could've helped the GoFundMe more, but my mom was embarrassed asking for help, and told me not to mention it too much. She was determined to earn that amount herself (my mom, for better or worse, is extremely optimistic). Anyway, for a while, I felt like I was in terrible debt, because I didn't know how much my mom would still need, and felt guilty spending any money. If I could earn $30K in two months, I'd do that 6 times a year, y'know? It's a ton of money. Then my mom called and said that after talking with her SO (Papa Chuck) they were moving the surgery to next year. Papa Chuck would fly down to California by himself and get a higher-paying job for five months to establish a better safety net/rent a place near the hospital. My mom would stay in Idaho and work. When the surgery date rolled around, my mom would fly to California, move in, get the operation, and then recover there. This would ease the financial burden on everybody (reducing plane/hotel expenses, giving more time to save) but also means that my mom would be living alone and on oxygen for five months. Also, remember: there's currently only *one* hospital that will even consider treating my mom. I was worried that if her health deteriorated at all for those five months, she'd be disqualified from surgery and pretty much waiting for heart failure. That said...we really couldn't do $12-30K in two to three months. It's a trade-off of not stressing about money, but now stressing about health again. I just want my mom to be okay.
The other problem is insurance. My mom's premiums are insanely high, yet they still don't want to cover my the operation. My mom had to go through the hospital and get them to declare it medically necessary, and it'll be amazing if she can get that all worked out by August 20th. If so, it'll be tempting to get the surgery just so she doesn't have to play this game again in some form next year (she may switch providers when open enrollment opens up). Plus, who even knows how long the ACA rule regarding pre-existing conditions will remain in effect. If she gets kicked off her insurance for having a pre-existing condition, the surgery becomes impossible. We're talking close to a million dollars out of pocket. Neither of us think that healthcare will get fucked with before midterms, as that'd be political suicide, and it's unlikely that any change would go through before open enrollment. Still, it isn't a 0% chance, and for what would amount to a death-sentence, I'm not a fan.
The last time I talked to my mom, she said she was still trying to get the surgery in August, just to get it out of the way. I think she misses Papa Chuck and is tired of her lung problems. That said...there's no way we can hit that deadline now. Best case scenario is she affords the surgery itself, but god knows how she'll afford recovery. And a selfish part of me hates that she's vacillated between getting surgery soon and getting it next year because I can't mentally or financially prepare. Like I said, it feels like I'm in massive debt, but the exact amount's hidden from me. I have no idea how much she'll need my help or when.
It's a mixed-bag. I'm feeling alright now, and until proven otherwise, I'm going to assume the new target's sometime early next year. That gives me time to put money in savings and hopefully it'll all work out. I'm flying from Seattle to Meridian later on this month to catch up with my mom in person, and show her some of the art I'm most proud of (I've been working on an album for the last 4 years). Just to avoid regrets if we get any bad news.
I'm sorry so much of this is up in the air. Between my mom's surgery date being up in the air and insurance fighting with her, I don't have anything concrete to say. I keep typing because I want to say more, to make this conclude somehow, but...I dunno. There's not much I can say or do. It's a vague but constant problem. I feel helpless and frustrated.
If you want to help with my mom's GoFundMe, you can find that here: www.gofundme.com/japbg-help-sa…
If you'd prefer proof before donating, I asked her if I could show the first page of her CTEPH record (personal details excluded): imgur.com/NB1fnhU
Other than that, just wanted to let everyone know what was up.