I've been a mom for the last 9 years, so I don't have any recent experience in anything. Plus everyone in the area knows about my husband, and most managers don't want to hire someone that will be gone for 3 months at a moments notice. Plus jobs in this area are scare to begin with. Sometimes I feel like a bad mom and wife because I'm not working, but its definitely not for lack of trying.
Up until then I lived in the fantasy that because we have health insurance everything will be fine. I mean up until then we never had a problem with them. We paid our deductibles and copays on medicines, and never gave anything a 2nd thought.
Then the list, the LONG list, of things they don't cover, or barely cover, started coming in.
- During transplant lodging. Depending on traffic, we live 90 minutes to 2 1/2 hours from the hospital. Once we get that call, I will be staying near the hospital. Hotels in that area are $55 + a night. If all goes well he'll be in the hospital for about 2 weeks before he's discharged. We know there are some hotels in the area that will help work with us on the prices, but I'd rather plan for the higher prices just to be safe.
- After transplant lodging. Because we live so far away from the hospital, my husband and I have to live near the hospital after transplant. This can range anywhere from $20 - $100 a night at the hospital apartments. We've planned on the $100 a night as a precaution. I'd rather plan for the worst and hope for the best. Recently we also found out that we need $300 just to move in. Our social worker never told us this. So I'm also wondering what else she hasn't told us.
- Food. The one thing we have found the last 2 years is there isn't much to eat near the hospital. You have to drive a good distance to get to get to the semi decent priced restaurants or fast food. So while he's in the hospital I'll be stuck eating cafeteria food while I'm at the hospital. I plan on trying to get a hotel room with at least a fridge so I can stock up on food the grocery store. Plus all the groceries we will need while we live at the hospital apartment afterwards.
- Gas. Gas for me to get to and from the hospital and hotel while he's in the hospital, and then to get around town after he's released. During those 3 months we will be making trips back to the clinic several times a week.
- Monthly bills. Unfortunately during this time, life goes on. That includes our rent and monthly utilities. As much as life would be 10 times easier if I didn't have to worry about these for those 3 months, that's not going to happen. My mother in law is going to come up and stay with our kids, so we can't shut off or suspend the utilities.
- Rejection meds. After the transplant he will be on a ton of meds to keep his body from rejecting his new heart. For just 2 of the medicines, our copay is $6000. Only 2. We also found out that our insurance only covers $500 a year on name brand medicines. Thankfully a lot of the meds come in generic form too, but not all. Then there are some that are over the counter meds, which aren't covered by insurance.
- Anything else. I know there's more that I haven't even thought of yet that will eventually slip themselves into my mind to give me yet another thing to stress out about.
When we first sat down with the transplant social worker, we were determined to do this ourselves. We weren't about to admit to other people that we couldn't handle it financially.
It wasn't until our next sit down with our transplant social worker that we realized we needed to swallow our pride and ask for help. Being told about the $6000 a month copay for just 2 medicines was a huge wake up call.
Swallowing our pride and admitting that we needed to reach out to people was the hardest thing we had to do. We had only lived here for a little over a year and didn't know many people in town. We weren't sure, and were kind of scared, how people would react. Finally we just took the plunge and contacted the local newspaper. They ran a story about him, and about our rising medical bills.
After that first article ran, Warrior's 7th grade class decided they wanted to do something to help us. They designed a quilt that they raffled off. Each student, plus the Sugar Pea, designed their own little square. Then the teacher and a friend of hers sewed it together. They raised almost $1500 with just that one raffle. We've also had Dining for Dollars nights at different restaurants.
We're still looking for some big fundraisers, and finding people to help us. When we first started we had a friend tell us that she would be the coordinator so we didn't have to stress about anything. Only she hasn't helped us with anything. Always has an excuse why she can't or won't contact local businesses. So its all fallen on our shoulders, so its been slow. Between doctors appointments, hospital stays, and trying to give the kids a somewhat normal childhood.
Unfortunately our need for fundraising isn't going to come to an end any time soon.