By Christopher Green
I think it is important to share with you all the day-to-day stuff that I have to do just to keep my health as stable as possible. It really speaks to the mundane banality that is a large part of keeping oneself alive under somewhat dire circumstance. Perhaps my musings may also give you some perspective about the lives of others you may know who are struggling and or suffering with chronic illness.
It’s April and since April is an even month, I am now spending the better part of an hour twice daily sucking on a nebulizer mouthpiece inhaling the anti-biotic Tobi. Short for Tobramycin, Tobi is an antibiotic designed primarily for people with Cystic Fibrosis. Tobi targets specific bacteria that fall under the classification Pseudomonas aeruginosa. It is a one month on, one month off treatment regime.
Why I take this anti-biotic is because people with Bronchiectasis, like those who are born with CF, have trouble getting rid of mucus from our lungs. These common bacteria are inhaled and then are trapped in the goop we cannot get out of our lungs and so we come down with lung infections at best and pneumonia at worst.
Since Tobi is a highly targeted drug there is no generic version as of yet. I can tell you this, generally I feel better as the “even” month progresses. That good feeling carries over into the next month. But around the around the 15th or so of the odd months, the little bastards start opening a beachhead, trying to take hold and I start to cough more and, what I call the creeping crud, reappears.
This treatment costs, last time I looked, over $1,800 for each month I am taking Tobi. If I didn’t have good Health Insurance, it would be very hard on my family. Without insurance and access to the Tobi, I would be forced to head off to the Emergency Room every time I came down with a bad lung infection.
The worst I can say about the Tobi treatments is that it leaves an awful taste in my mouth that lingers even though I gargle with Listerine. FYI, I gargle at least five times a day anyway to get rid of any extra bacteria that might be hanging around in my mouth.
One of the best-unintended consequences I get from doing the Tobi is I get to play my guitar while doing the treatment. This turn of events has greatly increased my practice ritual. I am getting pretty good.
I have looked over the list of potential drugs I will be taking after the operation and Tobi is not among them.
At least twice every day, I put on this fitted vest equipped with two bladders that press against my chest once I am strapped in. This Vest is then attached to a pneumatic sort of device via tubes. When I turn the machine on, the bladders inflate. After a slight pause, it sends rapid pulses, which causes the Vest to pound my chest. I do this to keep the goop or crud in my lungs moving around and hopefully out of my lungs. Each session lasts twenty minutes. In the old days, respiratory therapists would clap your back, which sent pulses of pressure into the lungs to try to dislodge gunk.
WhileI am strapped into the Vest, I use my nebulizer filled with liquid Alburterol to help loosen the stuff up even more. More about this vest later when I talk about renting vs. buying medical equipment.
Why I bring this up is to show you that some pretty smart people have been developing different ways to treat those afflicted with CF. Our free enterprise system, the good side not the dark side, made someone think that maybe this highly specific treatment could be used by people who suffer from diseases that present themselves like CF. In more crass terms, someone asked that most basic economic question, how can they expand their market.
Well I am glad they did because I am convinced that these two treatments have done a whole lot to help stabilize my health over the past six years. This, in turn, has kept me from having to undergo transplant surgery later rather than sooner.
I have been doing these treatments since the fall of 2004. I have also been taking an oral prophylactic anti-biotic three times a week called Azithromycin. Of course, I inhale the much advertised Spiriva and Advair. I also have to take Calcium supplements since one of or a combination of treatments was making my teeth week. They were cracking and I have lost three teeth since 2004. That seems to have stopped now that I am taking the calcium. Then there is good oldMusinex, which really helps even though one of my many doctors does not think it does any good.
Well, that’s my day-to-day medical regime. I look at it as the minor league compared to what will happen after I get my new lungs. I think the hour or two I spend now each day dealing with treatments is getting me prepared for all the drugs I will need to take to keep my body from rejecting my new lungs.