Friday, April 16, 2010

Day 11. History Lesson #3

New to this blog? You should start at Day 1...

History Lesson #3:

2006, 26 years old
I remember the first time I realized there was a bigger problem. I was standing in the door of my co-worker's office and said "Dang Jess, I'm really having a hard time breathing" She said it was probably from all the stress we were experiencing. The company I was working for had just landed a multi million dollar job and I was under a lot of pressure, but I didn't feel stressed to the point of not being able to breath. I shook it off and ignored it as best as possible.

2007, 27 years old
In 2007 I got the flu (influenza type A). I ended up in the emergency room, I told them I had been having breathing problems prior to getting sick and they did a CT scan on my lungs (which came back normal). At the time I was on birth control so their concern was that I might have a blood clot in my lungs. Shortly after I recovered from the flu I got a nasty sinus infection. This wasn't too surprising since the flu can make for a lot of drainage. The doc gave me antibiotics and ordered a chest x-rays and my first PFT (pulmonary function test). Like my CT scan the chest x-rays came back normal. The PFT did not. The antibiotics worked for my infection but sometime into taking them I got a huge canker sore in my gum line...the biggest one I've ever had, still to this day it takes the cake for the canker sores of all canker sores. This wasn't a real shock to me since I had had them sporadically my entire life. However, the size was very impressive.

2007-2010
Then I lost my health insurance...
Then I got health insurance but was pregnant (you don't always have accurate tests when you're pregnant nor will they do any good tests like imagery)
Then I lost my health insurance again...
Then I got health insurance again but I was pregnant...yes, again
Then I lost my health insurance again...

See a pattern? No worries...i have health insurance now, again.

Since the first one (2007) I've had 4 PFTs, once a year (when I have health insurance), they have all been normal with the exception of the "diffusing capacity", which was "significantly abnormal" at "56% of predicted with a good quality study." In lame man's terms; my lungs don't process the gases being drawn in which results in the wrong amount of gases coming out which results in being SCREWED. This has continued to be the problem over the last few years and is now worse. According to the chart notes from my last Rheumie appointment, it's 12% worse then last year (hence my Rheumies "shrinking lungs" description)...but I think there has been a mistake cause that's just plain crazy.

Today:
I'm in panic mode. I can't stand this anticipation. I want to crawl into a hole. Probably been doing too much research. Looks like people with Behcet's with Pulmonary problems have a high mortality rate, this would explain why I can't seem to find anyone that is experiencing the same thing as me. PS. I'm back on the Prozac, I'm just not that tough. I can't be falling apart watching Lily at dance class or constantly smelling Lucy's hair because I think it's the last chance I'll have. Feeling like a train wreck with a lot of casualties.

Later Today:
My day got better. Shortly after I wrote my previous post an old friend called and wanted to go on a walk. She hadn't read my blog but just felt she should give me a call. I love it when things like that happen. I needed the 10 mile walk and our 1 year olds played in sun while we visited. It was perfect.

2 comments:

  1. You may want to sit down for this. My name is Leslie & I have been very sick since April 2009 but just recently diagnosed with Behcets. I too experienced childhood ulcers in the same manner as yours few smaller ones spread out over long periods of time. Anyway, as of the June 31, 2011 I began having breathing problems...severe shortness of breath & chest pains. Numerous ER trips & hospital stays. Recent echo & PFT. Both showed what was causing the shortness of breath. My Rheu explained to me that my gas exchange is abnormal. I cant oxygenate my blood bc of the low amount of gas exchange. I definitely have restrictive lung disease most likely Pulmonary Hypertension & Ive got to see the Pulmonologist in order to know definitively.

    I know all about feeling alone. I am in my house for weeks & weeks sometimes without being able to get out. You are the only person I know who experiences the similiar lung involvement as I do.

    I have a website as well with my entire story & daily journal entries along w pics. If you would like to visit my site, you are more than welcome to & share with anyone as well. We need to educate as many ppl as we can, right? I absolutely will be following you & hopefully talking with you soon!! God Bless You

    caringbridge.org/visit/lesliekennedykeel

    ReplyDelete
  2. You may want to sit down for this. My name is Leslie & I have been very sick since April 2009 but just recently diagnosed with Behcets. I too experienced childhood ulcers in the same manner as yours few smaller ones spread out over long periods of time. Anyway, as of the June 31, 2011 I began having breathing problems...severe shortness of breath & chest pains. Numerous ER trips & hospital stays. Recent echo & PFT. Both showed what was causing the shortness of breath. My Rheu explained to me that my gas exchange is abnormal. I cant oxygenate my blood bc of the low amount of gas exchange. I definitely have restrictive lung disease most likely Pulmonary Hypertension & Ive got to see the Pulmonologist in order to know definitively.

    I know all about feeling alone. I am in my house for weeks & weeks sometimes without being able to get out. You are the only person I know who experiences the similiar lung involvement as I do.

    I have a website as well with my entire story & daily journal entries along w pics. If you would like to visit my site, you are more than welcome to & share with anyone as well. We need to educate as many ppl as we can, right? I absolutely will be following you & hopefully talking with you soon!! God Bless You

    caringbridge.org/visit/lesliekennedykeel

    ReplyDelete