Wednesday, December 12, 2012

More answers!

   I saw my doctor, who referred me to a pulmonologist. His office set the appointment and I got in this last Monday. She had most of his records and I picked up my chest X-ray; asked how I ended up there and when we were done talking I found out I don't have COPD after all. I have pulmonary fibrosis.
   There are two kinds of this; one is caused by an auto-immune system attacking the lungs and can be treated. Mine is the other's possible to slow the decline, but not halt or reverse it. I go in for a high-resolution CT scan on Friday (happy 36th anniversary) and as soon as they can schedule it a pulmonary function test; then I see her again between Christmas and New Year's. After that, when she knows more she said she may try to refer me for a 2nd opinion if we can get my insurance to cover it.
   Over the last 3 weeks I used up all my vacation from work and last Thursday they let me go as I can't do my job anymore. The pulmonologist more or less said that I probably aggravated this immensely by trying to get through work as short of breath as I was. Then numbers I've seen in forums and messageboards are very heartening to begin with...
   Today I finished the application for disability. In the meantime, the holidays go on and we've been trying to get shopping done and "stay in the spirit". The tree is up but the only thing on it so far is the USB cable that I've been using to print stuff as I file things. Kind of appropriate for the e-shopping I've been doing!

   I'll post more as I know more-may life be kind to each of you!


Friday, November 30, 2012

Things are a bit less fuzzy...

I've had 3 sets of tests now, but since the Dr. just got the last results yesterday I won't see him until Tuesday.

The first test was a stress ECG, but since walking from the parking lot into the hospital, riding the elevator up and then down the hall to the office knocked my O2 to the low 80's (though I was wearing my walkaround bottle), they wouldn't do the stress part and called my doctor, who told them just to do the ECG/sonogram part. Strange to watch the valves opening and closing and the whole thing beat while you're lying on the table!

The next day a respiratory therapist came to the house to do a respiratory stress test. Starting with it set at the 2 liters a minute my Dr. had prescribed, up and down my driveway once (250') had dropped me from 98% to 81% and she made me sit down on the patio. She turned it up to 3 and after my levels came back up and my heart slowed to normal, we tried again. That time it was 83%, and we stopped again, and kept going up until at 6 liters a minute, with her telling me to slow down (I was already moving much slower than I ever would have at work) I was at 89% when they want me to stay at 90%. (Below that does brain damage, apparently.)

So now I leave my concentrator in the house set on 2 unless I'm getting up to do something, then turn it up to 4 or 5 (max on it). If I'm walking I'm supposed to turn my little bottles up to 6 and walk slow; that means they last about 20 minutes. Riding in the car, 2 works; driving or talking 3 works, slowly sauntering through a store I can get away with 4 and drop to around 96%...

There is no way I can go back to work without the oxygen; there is no way I can do my job with it, so it seems I'm about to retire again..

The sleep test last Saturday night was interesting. Within an hour I ended up on a CPAP machine and for the first time in many years, I actually slept 4 hours straight! Supposedly I "qualified" for a machine, but haven't heard anything more.

So that's where things stand for now. The last of my vacation days run out on Tuesday and we'll see where it goes from there!

Meanwhile, I sleep 10-12 hours a day, nap in the afternoon sometimes and read and watch far too much news and play a few video games as I wait to be told what is really going on.

May life be kind to each of you!


Friday, November 16, 2012

Adding up the numbers...

after a week and half playing with an oximeter led to a doctors appointment this morning.

   I knew I'd experienced a decline in my lung function over the last year and it had been much more dramatic these last few months after a couple of rounds of broncitis/pneumonia this summer and one a few weeks ago. Buying the oximeter gave me numbers to put with it: sitting at rest, doing nothing, anywhere from 92-96%; doing most anything at all drops it into the mid-80's; continued activity into the low 80's and I've seen the numbers as low as 78-79 in a few instances. 2 weeks ago they sent me home from work as my lips were turning blue and I was coughing up blood as that last round of chest misery broke up. (Made me think of Mark and all the stories I've read of surfers getting slammed and how at least they were having fun before they got to that part!) The blood is supposed to be a side effect from the COPD and coughing too much, but the blue is what led me to research oximeters and find one for $34 that was quick and accurate.

   So going in with those numbers and the other symptoms have led to my being scheduled for a sleep test, along with a stress EKG to see if my enlarged heart is part of the problem. Also I'm being set up not only with oxygen to sleep under, but a portable unit that I'm supposed to wear to work, etc.. I'm not quite sure what my employer will make of that one!

   I just know I'm tired of being exhausted all the time and that my quality of life isn't what I wanted for my 90's, let alone my 50's!

   So that's where things are at here. I hope all of you are well and looking forward to the holidays with your loved ones gathered around you if you can! I know I am!

    May life be kind to each of you!



Saturday, September 01, 2012

I've seen the elephant!

   An old expression, from the guys that wandered this part of the West and further for when they'd "had enough".

   Very sorry for the long disappearance. I made the mistake of tying Facebook to my blog and when something came up I couldn't share with family I couldn't put it here either. Now, after over a year, everyone that needed to be told has and I can finally rear my ugly head again!

   When I had my physical last year, the blood work and all came back very nicely; it was even better this year. The curve ball come in being told I was in the beginning stages of COPD and have an enlarged heart.

   That explained what I thought was a "weight induced asthma" as I panted when I ran up the steps at work, or from the basement here at home; why the hot days were really hard on me (and this has been a wonderful summer for those).

   My oldest was in the process of changing jobs and I was told I couldn't tell him because it might influence his decision as to where he wanted to look for work. If I couldn't tell him, I couldn't tell other family members who might mention it accidentally.

   After 4 or 5 months I finally told my younger son because he knew I needed help with things I hadn't before. I had to swear him to secrecy, something I've always detested. I've never been one for keeping secrets or keeping things in! I remember a line from an old B.B. King/Bobby Blue Bland version of "Cherry Red" where B.B. tells Bobby "I ain't no refrigerator, I don't keep nothin' in". A much easier and I think healthier way to live life...

  Everyone in the family finally knows now, except for my Mother and there's not really any point to telling her as she would just figure a way to make it about her, anyway.

  My part time job is still called that, but they get 40 hours out of me and though I get two days off a week, they aren't together. It takes until the end of one to start to feel like doing anything and the next day I have to go back.

   One of the things that goes with the COPD is that respiratory bugs are harder to get over; they take longer doses of antibiotics and the first one last fall ended up with me also getting  a Ventolin inhaler. The first one lasted me 10 months. Between the heat and perhaps the worsening of my lungs, I've gone from using it once every couple of weeks except for when I'm fighting a bug, to using it 2 and even 3 times a day to keep that "elephant" I referred to above from sitting on my chest and making it so very hard to breathe.

   There are times that I can tell I have to stop for a few moments and let my lungs catch up with me because I'm either chuffing like an old locomotive, or I don't have enough breath to speak, or I can feel myself actually being confused from lack of air. There are times I wake up the same way in the middle of the night (one of the reasons I'm using the inhaler more often, as I seem to sleep better if I use it just before bed)

  To all who've left notes or inquired elsewhere, I'm truly sorry to have had to lie low for so long.

   May life be kind to each of you!