Monday, July 31, 2006
It's Still Only Monday?
P. G. Wodehouse
This morning started out a little rough. I was scheduled for a Tobramycin trough blood draw at the lab. The blood they took was for a CBC and metabolic panel. Hmmmm....that wasn't right. I got on the phone with the home healthcare folks and asked them to fax over the CORRECT lab orders. A frustrating hour later, I finally got the right bloodwork drawn. All it took was a little strong-arming from my doctor. I'm not quite sure where the problem was...whether it was was with the home health care people, the lab, or some other administrative fluke, but I'm glad we got it sorted out.
After that little fiasco I needed a Belgian waffle to calm down. Good thing it was still before 11a.m. or I would have been an unhappy camper. Coco's doesn't have hot chocolate though. Isn't that odd?
The next item on my agenda for the day was to see if I could get my optical prescription refilled. My prescription was still in the computer at JCPenney, so that was good. I ordered a new set of frames to replace the ones I lost. In two weeks I should be good as new. Actually, what made me good as new was the haircut I got. I hadn't had a haircut since May! My hair had gotten much longer than I'm used to and it was looking pretty sad. Within 5 minutes of sitting down in the stylist's chair, more than half of my hair was lying in clumps on the floor.
Ahhhh! What a relief to have a new, fresh hairdo. Topped it all off with a little retail therapy and I feel like new. What a lot of activity for me for one day. Doesn't sound like much, I know, but for me it was a big day. I can't believe it's still only Monday.
Sunday, July 30, 2006
Still a Little Out of Tune
I'm in the middle of a rather lengthy tune-up. The meds I was on in the hospital weren't quite doing the trick. I was sent home on Ceftaz infusion and oral Levaquin. At my most recent follow-up appointment at the CF clinic, my lung function still hadn't come back up much from when it was checked in the hospital. My weight really hadn't improved either. Basically, for the last couple weeks I've been just loafing around, hoping that my energy would come back.
The doc switched me out to different meds. I'm back on infused Tobi, and we've added Merrem. Merrem is a new one for me, but from what I've read about it, it should be a good one when combined with Tobi. The docs were concerned about Tobi because of its ototoxicity and the fact that I've already lost some hearing in my left ear. However, after a lot of discussion, we made an informed decision to go ahead with it. Clearly Tobi does work for me, and it has been a "power-play" in the past, so I'm hopeful that this time it will get be back in shape.
I'm disappointed that I won't be able to return to work just yet, but on the other hand, I'm thankful that I have such a flexible job that I'm able to stay home and recover fully. Another two weeks and I should be well tuned up.
Thursday, July 20, 2006
Settling In After the Move
Once you get a spice in your home, you have it forever. Women never throw out spices. The Egyptians were buried with their spices. I know which one I'm taking with me when I go. --Erma Bombeck
Our new home is beginning to take shape. I just wish I had more energy to get everything put away in its proper place. But, since I've only been home from the hospital for just over a week, I'm letting myself rest. I'm SO thankful that my mom moved all the kitchen stuff first while I was in the hospital. It's wonderful to have at least one area of the house all figured out. My sister-in-law has been a tremendous help as well in terms of helping unpack things while I supervise.
My natural inclination is to be busy, so it's very difficult for me to just sit here today and do only a few things from the comfort of the bedroom (which, incidentally, is HUGE and BEAUTIFUL!) I know that everything will be put away eventually. The most important thing for me right now is to make sure that I'm giving the antibiotics a chance to do their work. I've slept a lot the last couple of days, so that should help.
I'm only on two tune-up meds this time, which I think is why things are progressing more slowly than usual in terms of getting back up to baseline. I'm on IV ceftazadime and oral levaquin. I hope it does the trick so that I'll be back to work by the end of the month. As it stands today though, I'm not entirely sure if that's going to happen. I still have a lot of ground to regain with my lung funtion. Who knows. Maybe this weekend I'll really be able to turn a dramatic corner.
Current mood: complacent
Current snack: Lays Stax
Health-O-Meter: 70% of baseline, still tired but coughing WAY less
Wednesday, July 12, 2006
As I Live and Breathe--an open letter on behalf of CF patients everywhere
I can't recall a time when I wasn't interested in science. In 7th grade I got to participate in my first science fair. I elected to do a poster presentation about cystic fibrosis (CF) , a topic of very personal interest. My poster described how it is inherited as a recessive gene, what parts of the body are affected by it, prevailing symptoms and known treatments for those symptoms. That poster earned a disappointing C- along with a comment from the science teacher that it didn't provide enough information. The lack of information was not because of minimal effort on my part. The scientific community had yet to discover vital details about CF.
Despite my low grade on that science fair project, my interest in science remained strong. About the same time that the human genome project was well underway and heading towards major discoveries about the CF gene, I was headed for college.
I entered the University of California Riverside and majored in environmental science. I focused mainly on air quality studies. The more I studied chemistry and atmospheric science, the clearer my path became. Even as I struggled with my health and was sometimes unable to take a full course load, everything was falling neatly into place. When I graduated I had a job waiting for me with the air quality group at a prominent consulting firm.
I consider myself extremely blessed. I have gotten to do things that were once considered an impossibility for people with CF. I am married to a wonderful man, I work a full-time job, I'm active in my church, and best of all, I'm living in an age where others with CF have reached adulthood.
Where I am today, the life I have, is no accident. It's also not the result of any spectacular ability on my part. Every step along the path to today has taken considerable effort--and I don't mean my own. The hard work of each CF specialist, pulmonologist, and researcher has made it possible for me to live well with cystic fibrosis. In my lifetime so much of the treatment of CF has been and may continue to be a lot of guesswork. Fortunately, there are brilliant doctors and scientists who live and breathe to find a cure so that I and tens of thousands of others with CF can continue to live and breathe.
I hope that no budding scientists will ever earn a C- on a school report about CF due to "lack of information." It is my hope and my prayer that someday there will be a poster or presentation about the cure for cystic fibrosis.
There are many ways you can help. If you would like to know more about cystic fibrosis or would like to assist financially with the ongoing research, please visit the Cystic Fibrosis Foundation at www.CFF.org