We're a rather unique group here at the Clubhouse. We have Asperger's, autism, ADHD times two, Diva Disorder (I swear, this is an actual diagnosis somewhere!), and diabetes. The diabetes belongs to the Clubhouse's vice-president, my husband Ira. He was given the official word in 1996 when Matthew was a year old but it wasn't until roughly seven or eight years ago that it reared its ugly head. At the tender age of 45, Ira has had both retinas reattached, cataracts removed, multiple MRSA infections, a device put in his stomach in order for food to be processed, dialysis three days a week for the last 6 years, and his right foot amputated below the knee.
Before Ira lost his foot, he'd been on a waiting list for a kidney transplant but went off because of not only his amputation but other health issues. His blood pressure couldn't make up its mind whether it wanted to go through the roof or drop through the floor and his blood sugars were out of control. Since his amputation--two years ago this October--both his blood pressure and his sugars are at the very least stable and he is well enough to start back to work. That's one piece of good news.
The other is that he is also in the process of getting back on the transplant list. In order to do that, there are a couple of steps that need to be taken. One is a stress test, which he goes for tomorrow afternoon. The other is a colonoscopy, which he had done this morning. I have to give him credit--he maintained a good attitude through it all. 64 ounces of Gatorade spiked with Miralax and then another laxative chaser spread out over the course of 4 1/2 hours. The actual procedure didn't take as long as I thought. I got him to the hospital at 7:30 this morning, I was called back at 9:10, and we were allowed to leave around 10:00. As long as the results of both tests are good, he will be placed back on the active transplant list. Since he's been on dialysis for the last six years, he will be placed at the top and could have a kidney by the end of next year. That, to me, is the best piece of news!
Along with everything that has gone with the autism factor and daily life in general, I have watched Ira's health spiral in so many directions. Dialysis for him begins at 6:30 in the morning and usually ends by 11:15 three days a week and because we have only one vehicle, I'm up when he's up, I get him there and pick him up. When he's been unable to drive and had appointments, I've made sure he's gotten there and everything else in between. He doesn't frequent the ER/hospital like he did but when he does, it's a roller coaster because I never know for sure if they're going to keep him and what they'll find should they keep him. It gets scary, it gets lonely. I can't remember a time when I wasn't exhausted. Then I hear, "Chin up, it could be you!" Really? Seriously? Guess what, buttercup? It IS me right along with him! Right along with the boys. I remember after Matthew's diagnosis asking the "why" questions--why him? Why us? I was told that this didn't happen to "us". Well, yeah, it did...because WE are the ones to advocate for him and WE are the ones to adapt to the social/sensory issues and WE are the ones to deal with the whispers, the stares, the judgmental glances, the loneliness and the isolation...and so on, so on, so on. It's called a ripple effect, like stones being skipped across the water.
Oh my.......I think it may be time for coffee.....
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