Driving and Donation

I have had to miss the last couple of weeks of the kids' homeschool co-op because of being sick (DH took them). Since today was the last day of classes, I really wanted to go. And I thought I felt well enough. But I did too much this week, and then the full effect of a flare from having dental work done yesterday didn't hit me until halfway through the morning today.

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I got my kids to their classes and made it through the first class I had to help in, sort of--I'm afraid I wasn't much help to the kids or teacher in that class today. By the time it was done I was getting so disoriented from pain and fatigue (and that "floaty" spinning feeling) that I had trouble getting out into the lobby.

I did a great demonstration of my lovely wall-walking (holding onto the wall for support and balance) and then collapsed into a chair. I'm sure the kids were all very impressed with my fabulous wall-walking skills--I got quite a few stares. :)

Something about the way I was sitting or my expression must have looked a little odd even through my dark glasses, because one of the other moms came over and asked me if I had a migraine. I said, "No, I just don't feel good." Brilliant. I love the way I can come back with scintillating replies sometimes.

I realized that didn't make much sense, and then told her that I was just having a flare of my normal stuff and feeling a little dizzy, and that as soon as I felt well enough I was going to go find a place to lie down for a few minutes.

She took my arm and helped me find a storeroom I could lie down in, and decided that I shouldn't help in my next class and that she would find someone else to cover it. But, but, I protested, I just needed to lie flat for a few minutes and then I'd be OK. She sweetly pointed out that if I couldn't even walk by myself I didn't need to be helping in another class in an hour, and that I should just rest and it would be taken care of.

I was still in no shape to drive by the time the sessions ended, so someone else ended up driving me and the kids home afterwards--quite a production, it turned out, inconveniencing at least 3 different families. The person who intially volunteered herself and her husband to take us home thought it would be simple, since her husband was there. Only she didn't realize that he needed to leave for a meeting at work.

By that point most of the other families who were there with two adults in one vehicle had left. So it was a great game of musical families. One mom watched her kids and two other mom's kids, while one drove our van home and another followed in her van so she could get the one driving my van back to the church. I was so embarrassed and apologetic.

I've driven somewhere and gotten myself stranded often enough lately that I think I'm just going to have to stop trying to drive places until I'm consistently feeling better. I'm checking out bus routes and trying to arrange doctor and dentist appointments for times when either DH or someone else can take me. I'm not going to drive anywhere for the next little while unless it's a situation where I have the option to hang out for several hours or have someone drive me home without too much inconvenience.

DH and I are also praying about and looking into options, including everything from sending the kids to private school to hiring a housekeeper/nanny or seeing if we can find another homeschooling mom who would be willing to come over during the days and work with her kids and mine. I'd appreciate prayers for wisdom and the right solution. I'm so thankful for a supportive husband whose job security and recent salary raises gives us several options to choose from. We're not rich, but we aren't big spenders on non-essentials and can manage to hire some help or pay for school if it's not too expensive. I'm so grateful for that.

I do have an appointment with the fibromyalgia specialist next week, and have a lead (through my new dentist) on an MD who is also trained in naturopathy and alternative medicine, so hopefully something will start helping soon.

My mom called today, and her kidney doctors are all worried about having her around someone with mono. They took blood today to run her Epstein-Barr titers. If it comes back showing that she is already immune to it, then we won't need to worry. If not, she might not be able to be around me.

They also told her that my doctors should have run more tests and should be being more proactive about trying to treat me. I haven't been able to talk any of them into running my Epstein-Barr titers to try to tell what stage I am at in the illness and whether it's the chronic form or not, because they say the test is expensive and there's no point in knowing since it isn't treatable, anyway. The specialists that take care of my mom said that there are treatments and things that can be done, and that if there's any question that someone might have the chronic form, the titers should definitely be run. Even though it's very rare.

So, hopefully the fibromyalgia doctor or the fibro clinic at the teaching/research hospital (the same place my mom goes for her kidney stuff) will at least run the titers and find out one way or another.

On another note, my mom had a phone call from one of her relatives who is in end-stage renal failure from the family hereditary kidney disease (the same thing my mom has), and has found out some appalling things about the health system. You see, she doesn't have health insurance. And her doctors in small-town midwest aren't willing to treat her kidney disease because of that. If you have any idea how expensive dialysis is, you would know there's no way she can afford it on her own.

Medicare covers treatment for renal failure. BUT, only if you're already on dialysis. And she can't get on dialysis because it's too expensive and she doesn't have insurance. And I'm pretty sure she can't get on a transplant list before she's on dialysis.

So, basically, the only way my relative can get medicare coverage for her acute renal failure to be treated is if she ends up in the hospital needing emergency dialysis to save her life. Then, if she's on hemodialysis in a hospital or clinic, Medicare takes about 3 months to kick in. But if she does home dialysis with peritoneal dialysis, the coverage kicks in almost immediately. Then she can get on a transplant list.

Something is wrong with this system.

Kidney failure is very treatable. Especially the kind my mom's family gets, which is just unexplained, non-cystic renal failure with no other symptoms or serious complications. It's so very treatable. Without that treatment, you die. With dialysis, there are many extra years of life expectancy. With a transplant, the life expectancy and quality of life is even better.

My mom was on dialysis for several years. When it quit working very well, we thought we might lose her because the waiting list for a transplant was so long. But then a donor kidney came available that was such a perfect match for Mom that she got bumped to the top of the list. Such a good match that it started working before she even got off the operating table, and she's had no rejection issues in the 7 years since.

Mom got her kidney 3 weeks before AJ was born. We consider that our family was given two new lives that month. My kids get to grow up knowing their grandma, and I get to see my mom strong and happy for many more years, because the family of a young car accident victim made the choice for organ donation. We think of and pray for that young woman and her family often, and we appreciate so much the gift given to us in her death.

Please consider organ donation. And, if you do want to be a donor, please make sure your family knows and that you have it marked on your driver's license. Because if the time ever comes when they have to make that decision, they should know that you want to give the gift of life to others.

I hope my mom's relative can get that chance at life.