November health update

Well, now that I've vented my spleen regarding Mr Trump on Facebook, I'll fill you in on the health update.

I've just taken the Pulmonary Fitness Test and the primary result (the DLCO which measures the lung's ability to transfer oxygen to the blood) declined to 27%.  As I wrote before, the  lower the value, the lower the ability to transfer oxygen. In general, a healthy individual has a value between 75% and 125% of the average.

Here's mine over the past year:
Nov-15: 34%
Jan-16: 35%
Aug-16: 32%
Nov-16: 27%

I had expected a decline based on my symptoms ... needing oxygen more frequently and at a higher level. Unfortunately, I find that even short walks of 50 or so feet are becoming more difficult without using oxygen since my saturation levels drop fairly quickly as I walk. And I plain tucker out much more quickly and just don't have a whole lot of energy in general.

Plus, it seems that attending the theatre is a trigger event! I was first diagnosed when I passed out after climbing three flights of stairs at a community playhouse a year ago. Then, a few weeks ago, I passed out at the Guthrie after walking up a set of stairs and a sloping ramp. As I told Barb, both events were breathtaking!

My pulmonologist has suggested we change medication from the current wonder drug (Esbriet) to an alternative wonder drug (Ofev). So, we're now heading down that path ... which includes seeing if we can obtain assistance in copayments as both medications require fairly stiff copayments under Medicare's Part D coverage until the "catastrophic coverage" kicks in. (Esbriet required a copayment of $2700/month which dropped to about $400/month once the catastrophic coverage began). Fortunately I qualified for a grant to cover the Esbriet and understand there are similar grants available for the new medication. Costs for both are relatively similar ... and neither cures the fibrosis but is believed to slow the progression.

Other than that, we'll just keep on keeping on. Later we're visiting Chicago with our adult kids and grandkids. I'm looking forward to that. Plus my brother, Roy, and his wife are joining us to celebrate Thanksgiving.

In February, I'll take another fitness test and have updated readings plus a CT scan of my lungs which will more specifically measure the degree of how much the fibrosis has advanced.

It is what it is...

Several folks have asked how I'm doing and I realized  that it's been awhile since I've sent out any updates about my health. (For those who don't know what I'm talking about, click Here .)

A couple of phrases that I learned while working up in North Dakota and Western Minnesota the past several years come to mind: “Keep on keeping on” and “It is what it is.” And that pretty much speaks to how I'm doing. I'm keeping on and it turns out that Pulmonary Fibrosis is what it is.

We've settled into an uneasy accommodation with this disease. For example, I take a “small” oxygen tank with me if I think I'm going to be walking any distance. I also do a much better job of planning ahead so that I not going to be caught breathless or decide that I can't do something because I don't have oxygen tanks with me.

So far I'm not needing to use oxygen when I'm at rest except on very unusual days. However it's difficult to know when a day is going to be unusual or not. That offends my need for  predictability but it is what it is.

I often find that I grow both physically and mentally fatigued in the late afternoon and more irritable. I'll be more forgetful and have a more difficult time finding the right word to say or write. Generally that's accompanied by an overall sense of weariness as well as a feeling of heaviness in my arms.

The antidote is taking a 30-45 minute “refresher nap.” I don't like to take naps because it tends to make a regular bedtime more difficult to achieve. But slowly I'm getting the hang of it.

All of these symptoms are very similar to what I experienced when Barb and I took the kids out west and visited Pikes Peak. The lack of oxygen at the top of the ascent caused exactly those same symptoms. So I've decided to rule out mountain climbing as a hobby for the future. Sorry, Mount Everest.

Shortly after the diagnosis, I started taking a medication called Esbriet. While others have reported physical side effects, I haven't experienced any significant ones. There is also a higher incidence of liver damage with Esbriet but my monthly lab results have been unremarkable.

Esbriet doesn't cure the disease but slowed down the progression of fibrosis for many (but not all) patients in clinical trials. In September I'll retake the pulmonary function test and we'll have a better idea of whether (or how quickly) the fibrosis is progressing.

Esbriet is a very expensive drug. The annual cost is slightly more than $100,000 and my copay would be about $7000. Fortunately there's an organization which provides grants to help cover the copays.

I was extremely happy to get the grant because they're very difficult to obtain. Applicants need to be singularly attractive and highly intellectual. Well, that's my story and I'm sticking to it.

So, we keep plugging ahead although my mantra when walking is now “slow and steady” and I often find myself filling the role of Tail-end Charlie when walking with Barb. That's a reversal so I think her legs have grown longer.

I'll write more in 6-8 weeks or if things change substantially.