A Brief Interruption for Peace of Mind...

Before I get on with the chronology of things so far, I thought I'd take the opportunity to answer a couple of shared questions that have been expressed - in the hopes of easing everyone's minds and facilitating understanding.

First, Pulmonary Fibrosis (for me any way) is not at all Cancer related, nor was my Radiation Therapy a contributing factor.

In the absence of any indicated cause it would seem I can attribute this to being hereditary. And when I think about it, can see several of the symptoms that I'd noticed my Mom had started experiencing to varying degrees, but was never diagnosed with anything.  Something else always seemed to take precedence.

There is no pain of any kind.  I did have a couple weeks of pretty sever back pain at first, but that seems to have been mostly getting used to a new way of sleeping and kind of re-learning how to breath. Ibuprofen and massage therapy seemed to resolve that problem.

I am not yet at a debilitated stage, just significantly limited with anything exertion related.  I'm fine sitting on the couch or at the computer.  Walking to the corner, shopping, raking leaves, sometimes even doing the dishes or taking a shower, well, that's a different story.

I'm committed to Supplemental Oxygen Therapy, and as such have an Oxygen Concentrator that I connect to with a Cannula every night to sleep.

Also in my "bag of tricks" is a portable Oxygen canister to use if I do anything exertion related.  I've actually walked in to town several times and other than being uncomfortable (ego wise) it does seem to work, although I have to keep to a moderate pace.

Additionally I've purchased a second hand Portable Oxygen Concentrator for flying or extended traveling, which is currently being refurbished.  I'll be renting one for my up-coming visit to Kauai (but that is another tale, for another time...).

  I also use a "steroid" inhaler (Q-Var 80) twice a day.



As for Hypoxia levels - most healthy people maintain a blood/oxygen level of 97~98%  If it drops to 88% or lower they consider that potentially life threatening.  At rest I run around 96% but it doesn't take much to drop mine below 90% - and if I'm not careful I can find myself as low as 81~82% and that gets a little scary, and I do my best to avoid that.

And I guess last on the list of most asked questions are Financially related ones.  Well, I'm fortunate I suppose to have pretty good insurance coverage.  After 6 years with Kaiser at $650+ p/month I just this year qualified for Kaiser's Senior Advantage plan which is $123 p/month and together with Medicare at around $130 p/month I actually have pretty good coverage.  What that translates to is my co-pays for Doctor visits vary from $33 ~ $45 depending on the specialty of the Physician, blood tests run between $23 & $48 depending on which ones and how many,  medications I seem to pay around 30% and other tests & x-rays vary - my share of this last CAT scan was $425. The Oxygen equipment and tanks is another $45~$50 p/ month... So, it does add up.

As for the Transplant, while the insurance will cover most of the transportation and lodging for both me and a care giver, most of the actual transplant operation, hospital stay and medications. I've been told, in order to cover meals, medications, up to three months waiting time and out-patient services, I can expect to have to come up with about an additional $24,000 on my own.  Truth be told I would have thought the figure to be quite a bit more, but regardless it's gonna take some figuring out, but that will keep until another time.


I'm also going to introduce here today the inclusion of my "Daily Quote" (or as daily as I manage to make a Post...).  I do have a thing for quotes, and have amassed a pretty good collection, or at least I think I have.  Anyway, they'll appear at the end of each post - take 'em for what they're worth.

"The love of family and the admiration of friends is much more important than wealth and privilege." - Charles Kuralt