DPS Supply Order 2013

It is Monday evening once again, another week has gone and here I am keeping up the schedule of once a week writing. I have been thinking the past few hours about what to write tonight and haven't been coming up with much. It has been a week of more trial than triumph unfortunately.

The diaphragm pacemaker system that I use to breathe it an oddity. Some would so is the person it's attached to, but that's getting too far off topic. I am one of two people in Iowa that have it, so it's a pretty small market. That makes obtaining supplies for the DPS a bit of a challenge.

There are three parts the system requires in order to function, batteries, holder brackets for the plugin, and a detachable wire. The last one only needs replaced when damaged, so it's a rarity, but the first two get regular use. Batteries last about 500 hours, so it depends on how much I'm pacing as to their longevity, the connection holders, or holder brackets, typically go for one to two weeks. They come in a pack of 30, so it lasts about a year.

As I said, Iowa market share is small for these supplies, so we don't have a supplier in the state that covers them. Therefore, I have to use a company in Atlanta, GA, called Shepherd Apothecary to get my refills. Unfortunately, my insurance only covers things in the state, so getting something covered from Georgia is not an easy task. Once you have all the paperwork in place, it's good for one year. If you're still following along, you're getting the idea, this sequence occurs every time I order supplies. I started this year's work in mid-September.

Batteries are the first item on my annual shopping list, and an example of why health insurance costs are outrageous. If I ordered them from Shepherd, it would cost me over $107 for a pack of three batteries. I'm currently averaging about a battery a month, so 12 per year, or four packs. That means I would need to pay over $428 that I can't guarantee my insurance would cover. Thankfully, I found them at an electronics supplier where I can get them for $14-$16 per battery. Insurance will not cover them because they don't come from an approved facility. So, I pay for them out of pocket, but at a much better rate than Georgia applies. The brackets however are a specialized product, so I can only get them from Shepherd.

These brackets are fortunately under $80, but have so far been reimbursed by my insurance. This past Thursday I spoke with the fourth person at insurance who gave me the fourth answer of what to do. Hopefully this one has it right, but I'm not holding my breathe (I can't while the DPS is on anyway). A friend of mine, another quad like myself, and I researched this system quite a bit before getting it, and none of this was ever mentioned.

Times like these make me trust in God's timing and look to Him for patience. Hopefully by next year a medical company in Iowa will cover supplies. Until then, the annual battle will continue.

Weekly Updates

In my last post, I added a link back to my web site and noticed I said that I blog weekly. That has not been the case, as you can see, so I was going to change the sentence. However, I decided instead to see if I can get closer to that frequency.

One of the bloggers I follow, and have worked with, said the best way to improve your writing is to just write. That obviously makes sense, so that is what I'll try to do. Unfortunately, finding something to write about could be the problem. Every week is pretty similar to the next for me.

During the day Monday through Friday, I mainly spend my time doing work or something to keep somewhat productive. Evenings consist of supper, playing computer games or watching something on the computer, and occasional meetings. Weekends primarily are longer versions of my evenings except with the addition of church on Sunday. Since I last wrote, that is what I've been doing. Maybe this will continue, maybe not, we shall see.

Today's item of interest is that I completed a new web site, Van Ryswyck Plumbing & Heating. The site started back in March with a meeting with the site owner, designer, and myself. It got delayed for a couple months due to scheduling conflicts with the designer and owner, but I finally got it in August. I finished the building of the site and was looking forward to completing it. Unfortunately, about a week later, the designer quit the company she worked for, leaving me with no contact in the company.

Fortunately, the owner and I were able to connect and try to get the site up on their existing domain (web address). However, that was inaccessible without becoming expensive, so it was decided to get a new URL. Today consisted of registering the new address, establishing hosting, and finally uploading the completed site. Amongst the other updates of the day, I was glad to get the project finished and the client's new site available to the public.

The next may not have as much accomplished, but I never know what to expect.

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.