Thursday, April 19, 2012

weirdness...

A few years ago, after coming down with pneumonia and suffering a severe shortness of breath for about three monts - I was told I probably had emphysema. I had a pulmonary function test done, an ex-ray and was seen by a lung specialist.
Lung Specialist.
This doctor told me I definitely had emphysema, my lung capacity was at 51 percent, and every year the lung capacity would become less until I ended up having to go on oxygen...and from there you know the rest. It's basically a death sentence, albeit a long drawn out death.
Two years go by and my sons notice that I haven't gotten any worse. I, of course, attribute this to my stubborness and my forcing my self to breath deep every night....
Now I have severe shortness of breath when I exert myself - or if I try to walk and talk at the same time...some mornings I cough and cough and cough, lots of fun coughing and clearing out of ....stuff. Cold seem to go directly to my chest and lungs, making each cold an adventure and suspenseful (is this the one that's going to get me?)
I was sent to a lung doctor again, to see where I was at - now note - after the first diagnosis, no one told me anything else about having emphysema; nothing about living with emphysema. I tried looking things up on the internet and was so discouraged and depressed by the results, what I read that I had to stop trying to learn about this from the internet. There was no good news, unless you were rich enough to afford lung transplants (I'm not)
I was asked if I had any questions, which I didn't - mainly because I had no idea what to ask and was pretty stunned....
so I let two years go by - rarely using my inhalers because it seemed to just give me sore throats and I only seemed to really need them once in a while - besides they're expensive even with a co-pay.
I visit this new doctor, another specialist and first thing he says when he comes in is
"you don't look sick to me"
huh???
"you don't look sick, and your sats aren't bad for someone with emphysema...." (they've been between 93 and 96 percent)
Turns out...

I DON'T HAVE EMPHYSEMA.

I according this this new doctor, I do have a little bit of lung damage due to the history of smoking and the few times I came down with pneumonia....

BUT I DON'T HAVE EMPHYSEMA

What I do have is a paralyzed diaphragm - and this muscle has over the years compressed my right lung to the point where there's basically very little to no airflow - because the muscle that moves this lung doesn't work----at all.
My right lung is about a quarter of the size it should be. For the last few years I've been surviving with one lung.
Apparently my lung output was the same amount every time during my pulmonary function test and this should have been a clue to the previous doc that I had something else going on.

I DON'T HAVE EMPHYSEMA.

For the last few years I've had this death thing hanging over my head - every morning and everynight my first and last thought is my life has been shortened.
I've been living with the knowledge that I wasn't going to last very long, and that the ending was going to be kind of torturous with the whole unable to breathe thing....
Now, I suddenly don't have that hanging over my head.
I'm both angry and ecstatic
I still can't breathe - because I'm only using one lung...
but I don't have this suddenly shortened life span...
I have very mixed feelings about this.
Happy of course, and yet how could someone so blithely tell someone they're going to die without any other follow-up, and without really reading the results of the tests, along with the exray they took, a motion exray which PROVES that my right diaphragm was paralyzed and therefore not working at all....

I DON'T HAVE EMPHYSEMA.

I'm still waiting for the other shoe to drop - wondering if this new doc might have made a mistake, but he showed me the test results and explained them.
He showed me the exrays and showed me how small my right lung is. (no wonder I feel lopsided sometimes! *g*)
I still have spinal stenosis, and arthritis.
I still have the weak arms with the nerve damage from the staph infection and the general screwed up muscles in both arms/shoulders...
I do have lung damage, and I am still disabled with my breathing but it's not fatal.
Have Mercy!
Hallelujiah
{please don't be tricking me, fate}

5 comments:

  1. I had this feeling like I had to check up on you and see how you were doing this week. OMG. WHAT A POST. That is amazing - it's so maddening how doctors can get it SO wrong, but I'm SO HAPPY that you don't have emphysema! *hugs*. *dances*.

    Can they do anything with the paralyzed diaphragm?

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  2. Thanks Janicu - I'm still kind of reeling from this. Can't quite believe it, and I keep waiting for someone else to tell me the second doctor is wrong. I'm going for another pulmonary function test this coming Friday. We'll see what happens....but meanwhile

    Oh My God :) I feel sooooo relieved. Still can't breathe very well, but don't feel like I have a time limit on my life. :)

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    1. I'm glad and relieved too! *happy sniff*.

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  3. I too have a paralyzed diaphragm. I was told I had copd. In my case the Dr. lied ass he had botched a surgery. After 5 years of agony I found a surgeon that was able to transplant a nerve and reconnect my diaphragm with the phrenic nerve. I have not had any respiratory problems in 2 1/2 years. I usually had 4-5 cases a year plus phenomena. Walking was chore running as impossible. Today I run in 5k's and do the things that were taken from me for that unforgivable 5 year sentence that my Dr hung on me. Good luck and never be afraid to challenge a Dr. We hire them based on credentials with out ever doing background check. We assume wrongfully so, that they did well in medical school.not always the case.

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    1. I didn't even know a nerve transplant is possible. I'm going to bring that up - but unfortunately, my care is through Kaiser - where you go to the referred doc...although the guy I saw last I liked a lot better. Thanks for commenting here, you give me some things to think about. Glad you're doing so much better and you're right - some docs are lazy asses in disguise. :)

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