Fall 2013

Iowa is well into the new season. Evening and morning temps are cool in the 50s, but days are still getting up to the upper 60s and low 70s. Farmers are also bringing in the year's crops, working as long as weather allows. Activities have started at church for kids and routines are becoming familiar again. This is the time of year that I don't look forward to.

Chilling out on a fall day.

Cooler temps mean the shorts and t-shirts of summer won't be around much longer and, worse yet, I have to start wearing footwear. I can tell the first few times I start putting on shoes that my body has more muscle spasms and I get more red marks on my feet. Hopefully weather will hold for a few more weeks before barefoot outings are no longer possible.

I was able to get off the vent completely for a couple months and use my diaphragm pacemaker system (DPS) 24/7. It felt great to be able to just stay on it and not have to switch back and forth. I did realize though that my nose fills up when I'm on my side and makes it hard to breathe. It's likely something I'll need to get looked at sometime. Unfortunately, I was sick a few weeks ago with a lot of air in my stomach, so I went back on the vent to help it clear up. Now, I'm on the vent for about six hours at night. In the next few weeks, I'm hoping to be off the vent again, but I'm not sure on timing.

Switching to the vent or pacemaker usually wakes me up, so decreasing time means waking up at odd times of night. I already have a hard time sleeping with meds only helping a little and I'm rarely able to get back asleep after waking up. The question will be which is more important, getting back off the vent or attempting to sleep.

The vents I use, a PLV-100, is also becoming an issue. Every month, someone comes and checks that they are working well, and once a year they are sent in for a preventative maintenance check. The company that services them is having an increasingly difficult time finding places to service my vents. They have been out of production for at least the past decade and very few people, if anyone now, still use them. Unfortunately, the new models are not as reliable and my biggest complaint, noisier. I've been warned that a day is coming soon that they will no longer be able to service my equipment and we may just have to wait until one, or both, stop working. However, with being on the DPS most, if not all, the time, insurance may not be willing to cover a new vent. The twists and turns of the quad life are always varied and seemingly never ending.

Another insurance battle is getting them to cover the supplies for the DPS. With only two of in Iowa that use the system, no one in the state carries the supplies. Therefore, I have to get approval for an out of network provider to order supplies. Once approved, they are good for a year, but I only need supply refills annually, so the cycle repeats every time I order. So far, I'm a month in to working on it and hope to be done by the end of this month.

That's about all there is to report for this entry. We will see what comes up until the next one.