Tuesday, September 1, 2009

The Current Health Update . . . "What's Goin' On? . . . Oh-ho . . . What's Goin' On-on."

This is where I will list my ever-changing health facts for all to see.

I live in new england.
I am 29 years old. I am a Gal.
I am active on the UNOS list for double lung transplant.
I have CF.
I do not have CFRelated Diabetes.
I have a history of Pulmonary Endometriosis.
I weigh about 100 lbs. and I'm 5' 1".
I just had my first Port-a-Catheter placed.
I can count 6 or 7 PICC-line placements in my life.
Prior to my first PICC line in the year 2000, I had not had a hospitalization since approximately 1988.
My health was managed with outpatient courses of oral antibiotics through my late childhood and adolescence.

The meds I take have not changed that dramatically since, I'd say, 1995.

I started a course of Lupron to control my pulmonary endometriosis in 8/09. This is my second course of Lupron ever. The last was in 2005.

As of November, we're down to 15% :(
As of 9/22/09, my darned FEV1 is back to 17 darned %.
As of 9/15/09, my FEV1 is 24%
As of 9/10/09, my FEV1 is 20%
As of 9/1/09, my FEV1 is 16%.
In May of 2009, my FVC was 31% Predicted (FEV1 22%) after a course of IV antibiotics.
Prior to that course, in October of 2008, my FVC was 43% (FEV1 28%) after a course of IVs.

I am single single single.
I have no kids and 2 cats.
I have very close friendships.
I have two siblings.
My parents are married and live far away from me.
My Csiblings also live far away from me.

My sister, CysticLady, has CF and is five and 1/2 years post-transplant. I believe that she and I carry the same CF gene (there are different variations, I believe we have the same one). My sister was transplanted at the age or 27.

My brother, CysticSibling, does not have CF, and I believe that he does not carry CF either.

There is no other history of CF in my family other than possibly a great great aunt on my mother's side who died very young.

I am a theatre artist and teacher by trade.

I work full time, though I'm currently on a leave to attend to my health.

Recent updates:
I am on continuous O2 that fluctuates greatly day by day. Today, I am on 3L at-rest, 3L sleeping through BiPap, more with formal exercise including yoga.

I wear a BiPap non-invasive ventilation machine at night. I have grown to like it. Sorta.

My diet incorporates lots of super foods like avocados, tomatoes and sweet potatoes.

That's all, folks. More later (I'm sure.)

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