Re: SPOC Much Too Slow

[Guest guest]

It is very easy to get frustrated, especially when one is not feeling well--I

know--been there! In order to get approved for xolair, I had to take the

initiative, stay on top of things, and in my case, I also had to talk to the

people at Medicare. I was fortunate to have a nurse who was interested in

helping me and my allergist referred me to the research clinic which took people

on medicare with supplemental insurance. I got my first shot three months after

my allergist did the initial IGE test and found out I qualified for the xolair.

The frustrating thing for me is that the summer before (summer of 2005) my

allergist sent me to a pulmonologist who ordered a fancy, one hour pulmonary

function test. The bottom line is that I have 30%-33% lung function on a

consistent basis. I have never smoked, never lived in a house with anyone who

did smoke, although I did work around smoke for a few years, but it was not

consistent. My asthma flared up 20 years ago, and the only thing any of the

doctors (I have three working with me) can say is that the asthma, over the

years has destroyed part of the lungs, or my acid reflux destroyed part of my

lungs before it was diagnosed and medicated to bring it under control.

The blessing in all of this is that from the first bad flare up 20 years ago,

my pft in the office has never been more than about 30% and almost from the

first my allergist would look at the test and say " Well, according to this

graph, you shouldn't even be breathing! But you are, so here is what we are

going to try. " And then he would try a new regimen of meds. Even after being

on rounds of pred. my pft has never been much more than maybe 35%.

I look back and the only thing I can say to anyone is that God has blessed me

with otherwise good health, generally, and only He is the answer to my being

able to teach school for the last 20 years (I'm now retired), and to be able to

do things with my family, (my children were teens when my asthma was the worst)

including travel all over Texas, and to Europe three times! I now take care of

my granddaughter--have since she was born three years ago--. I teach piano two

days a week, substitute at our church school, and play organ/keyboard at our

church every Sunday.

I did go to pulmonary therapy (my pulmonologist ordered for me at my

insistence) and it was one of the best things I did. I don't follow all of the

exercises like I should, but the breathing exercises they taught me really help

when I am having some difficulty. The pulmonologist and the therapist could not

believe I was walking, doing all of the things I do, and not an invalid on

oxygen. According to them, I should be bed bound on oxygen 24/7. I'm not! I

am still going strong.

I know this is all very long--but I hope it helps explain why I can understand

your frustration! I have decided that as much as doctors know about asthma and

lung diseases, it is only a drop in the bucket of what they need to know and

maybe will know in the future. I also know that knowledge of the lungs and

asthma and other lung diseases has progressed by leaps and bounds in the last

few years, but probably raising as many questions as have been answered. I also

know that in the 68 years I've been alive, the tremendous progress made in the

number and variety of meds for asthma is really incredible. My sister had

asthma from the time she was two months old, and from the treatments she

received as a child to the treatments available today is like night and day.

Had xolair been available 20 years ago, my sister might still be alive.

Asthma is still one of the most frustrating of all of the lung diseases,

especially to those of us who have difficulty breathing most days, even on the

maximum amounts of meds. And to top it all off, each one of us responds

differently to the various kinds of medicines. Reading some of the experiences

of people in this group has even raised more questions for me. But it has also

made me realize that my bouts with asthma are not nearly as bad as some of those

described here. I have not had to have my sinuses drained, I don't have

problems with my skin, while I have had some side effects with the pred., my

doctor gave me good advice from the beginning about taking calcium and a good

one-a-day vitamin, and I have had good bones--no problems there, and my overall

health, apart from the asthma has remained relatively good. So far my heart has

remained strong and unaffected by the asthma. My only problem is breathing

difficulty from time to time. But I have not had a

sinus infection nor had to be on prednisone for over a year, now. But I also

have to add that while we have had isolated days of heavy mountain cedar, it has

been relatively mild this season, due to many days of rain and extreme cold,

including some freezing rain.

Sorry this is so long. Just had to get this all out.

Again, sometimes we have to become our own advocates.

Adah

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