Eleven years ago, I was sitting in my big shot Cedars Sinai doctor's office, where some B-list actors had actually sat and coughed in the same chair. My diagnosis was officially bronchiectasis, probably an adult form of Cystic Fibrosis. Despite my doctors cheery demeanor -- he referred to me by some nickname he made up --I knew I was in serious trouble. My FEV1 had dropped as low as 32%; At 5'4'', I barely weighed 96 pounds, and I had just been hospitalized for over two weeks with a raging pseudomanas infection after coughing up cups of blood. I was needing to go into the hospital or be on home IV more and more often. I lost my career as a television writer-producer which I loved more than anything, I couldn't play sports any more (I was a phys-ed major in college), I couldn't travel, if I went for a walk with my boyfriend and encountered a hill, he'd stand behind me and push me up it.
Now, here I was telling the doctor what was obvious --that I was just getting worse and worse. He replied quite matter-of factly, "Well, that's the nature of the disease. You gradually get worse." Hey, how about those Lakers? The upshot was he had no treatments, no advice, no new medications. I was using a nebulizer for albuterol, d-nase, and mucomyst which all seemed to do little. Every 3 months or so I was usually sick, but now I was also on inhaled Tobi all the time too, and still felt awful. Worst of all I was becoming resistant to most antibiotics.
My treatment up until then was not pro-active. The doctor would wait until I got sick, then give me antibiotics. Soon the antibiotics weren't going to work at all. Yikes! What to do? What to do?
Medicine as I knew it was clearly not going to help me. SoI started trying everything: Chinese Medicine, Chiropractic, Quack Alternative Doctor in Santa Monica, Macrobiotic Diet, Juicing, Saunas, Chili Pepper drinks -- you name it.
I was not going to give up.
That was eleven years ago. Today my FEV1 is 54%. (maybe not great, but I already had so much permanent lung damage.) But instead of my FEV1 going straight down, it started to go steadily up. I weigh 114 pounds. I work out. I take zumba classes (Google it!) I went back to work writing television. And recently I was diagnosed officially with Cystic Fibrosis. It's still not easy. It's a very tough disease. I know my health can turn on a dime. I still have my bad days but here's the amazing part --I have not been on I.V. medicine in 11 years. I am sensitive to most antibiotics again. I can travel --I just came back from a vacation in England which I thought would never happen again.
Was there a magic potion? A little known alternative treatment? A miracle?
That's the purpose of this blog. To share what I've learned. Although there is absolutely no cure for Cystic Fibrosis, perhaps the progression can be slowed. I did find something that changed my life. It is not a magic potion and I've had to work hard to get results. And I'm going to share this knowledge with other people who are suffering. And while I still have my challenges with this disease, I got a chance to get my life back.
Maybe what I learned can help you too.
No comments:
Post a Comment