Birt-Hogg-Dubé

 I saw the Oncologist yesterday. 
All looks well as far as she is concerned. 

I saw the Pulmonologist today.
He highly suspects Birt-Hogg-Dubé syndrome.

He took blood tests just to rule out Sjogren's Disease.
Those will be back in a week or so.

He is going to set up genetic testing for the BHD so I should know something in the next week or so.

He said my lungs, otherwise, look healthy.

If it is BHD, I just have to keep an eye on my lungs because if cysts form on the outside of the lungs they can make it dangerous to fly. If they burst, it can cause a lung collapse.

I do have one mid sized cyst on the outside but he said "go ahead and fly - just don't cough hard!"  lol!

The cysts are bizarre - just filled with air, and all inside my lungs. For as many cysts as I have, my lung and heart tests were excellent, so he says I'm otherwise in great health, just like the Oncologist said. If it is BDH I'll also have to get regular testing on my kidneys as one of the side effects is kidney cancer if left unchecked. 

I'll also have to let my children and grandchildren know so they can get tested. They have a 50% chance of getting the gene.

I'll post more when I know more. 
At this point, I still plan on leaving August 17 for Spain.

Love,

Annie

2026 Camino Frances Schedule

Here is the file in .pdf form.
Half Stage Camino Doc

A Little Glitch

 Sooooo... I've made my flight reservations from home to Pamplona in August, only to find I have cysts in my lungs that may prevent me from flying.

Apparently the cysts can pop and cause a lung to collapse. 
Sheesh!

This is after a year of complaining to my Primary Care Physician that I was having trouble breathing and pain in my upper chest. I finally had AI write a letter and requested it be put in my chart and THAT lit a fire under them!  Within 24 hours I had referrals for a plethora of tests. 

The CT with contrast showed a lot of cysts in my lungs and one large on on my liver. I'm request another CT of my right kidney as well, because I've also had pain on that side for over a year.  My grandmother and HER mother both had a kidney removed - so hopefully the CT will be approved. 

Who knows how long these cysts have been there. I've always had difficulties with my lungs, especially after a cold or flu - so this may be nothing new - but I'd like to at least know. I tried walking the Camino last Autumn and had to return because I just couldn't catch my breath. After an emergency room visit, was told everything looked fine. 
Riiiiggggghhhht!

It seems when you're over 70, the doctor just figures you're old and going to die anyway, so why bother!?  At least that's how it feels. 
Well up theirs!
I plan on living to be a healthy 103 at least!

I have appointments with my Oncologist and a Pulmonary specialist next week.

Keeping my fingers crossed. 
I REALLY want to take this trip

Stay tuned,

Annie