Day 171-76 Undeniable truth.

The question that seems to be coming up is "Now what, are you going to come off the meds?" I don't think so. I need to talk to my doctors. If my results had come back unchanged it would be a much easier to throw in the Imuran towel. I have a feeling the docs will suggest I stay on for the duration of the treatment (full two years).

This is probably hard for many to understand, but the results were a little sad for me. I'm not ungrateful that my lungs are better but the results have solidified my pulmonary Behcet's diagnosis. There was always a part of me that was in denial. "Nah, my lungs aren't really being affected by the Behcet's, it's a coincidence. It's actually residual damage from some kind of environmental exposure." The fact that my lungs have got better with this treatment makes for an undeniable truth.

Day 168 - 170 What was your bet?

If your bet was anything but BETTER you LOST!!! Yes, that means I lost too.

Here's my diffusion capacity history for reference:

2/19/07
DLCO 15.2
56%

4/8/08
DLCO 16.6
60%

4/3/09
DLCO 18.0
66%

3/29/10
DLCO 15.8
60%

4/6/10
Started Imuran treatment

9/22/10
DLCO 18.9
74% TODAY!

My DLCO is significantly better! My lung volumes are also up.

Life is good!

Day 163-167 'You've got enough breath to bitch'

What you first need to understand is that my life is filled with humor and sarcasm and I wouldn't have it any other way. David and I were having a discussion about my symptoms and my appointment next week. I was harassing him, telling him that he didn't even know I had a PFT next week because he doesn't read my blog. He explained that he lives with me and doesn't need to read my blog to know I have a doctors appointment.

"Yes, but how can you place a bet when you don't read my blog?" I asked.

His response was "Well my bet is that they are better. Besides isn't it obvious? You've got enough breath to bitch!"

I gave him some big kisses in between my fits of laughter after that little comment. I love you David and yes Sweetie, i will always have enough breath to bitch!

Days 156-162 No email

Well I got side tracked and didn't send myself an email last week. Trying not to think about it too much. Trying to stay busy with things and stuff to keep my anxious mind at ease.

Lucy is having trouble sleeping lately and it's making for some really rough days. I'm tired on top of already being tired.

I mostly recovered from my flare but have had a couple ulcers linger. I think part of the problem is that I went two nights without my evening 50mg Imuran dose.

Not much more to report. My PFT appointment is next Wed but I won't be able to see Dr Russian (Pulmonary) till mid October. No worries, I'll be able to decipher the test results on Wednesday.

Days 149-155 All bets are on

My oldest daughter is back in school and we are back to rubber boots and alarm clocks...bummer! Along with September also comes my 6 month Pulmonary Function Test. The calendar numbers show that 'Day 180' is October 2nd which happens to be a Saturday, oh darn. So I'm cheating a little and shooting for the third week in September (around Day 170 instead).

I called to make my appointment today and of course my doctor hadn't put in the order. It took me 4 phone calls to find this out. Now I'm waiting on a call back from the nurse. What a fiasco! Nothing is easy!

To keep things upbeat for the next couple weeks I thought it would be fun to play a little game. I would like to know what you think has happened with my lungs after 6 months of being on the Imuran therapy. This is very simple, for instance; Better, Worse or Same. Now, to eliminate myself the embarrassment of only having 1 person (my mother) comment on this post you can just send yourself an email with what you think the results will be. Then when I post the results you can forward the email to me and I'll post the winners (minus your email address)! How fun right? Make sure the original self-sent email is dated prior to my appointment. I hate cheaters ;)

I'm sending myself my betting email right now!