Tuesday, November 18, 2008

PH Awareness Day

I opened my email this morning to find a note telling me today is PH Awareness Blogging Day. You can find a list here of bloggers who are participating. This is something dear to my heart. Please take a look at the links and educate yourself. I'm quite sure there are lots of people out there misdiagnosed with some other lung problem when it's really PH.

In the beginning, when I first got sick, the powers that be thought I might have PH. My friend Karen who passed away in August had PH and it was ultimately what caused her death.

Part of the reason my blog has the word breathing in it is because when I started this blog nearly 4 years ago breathing was something I really didn't take for granted. On the worst days I could talk or breathe but couldn't do both at the same time. (Me? Choosing not to talk? What a concept!) It was a long road to a diagnosis. At one point a specialist stuck me in the hospital for 10 days and ran all kinds of tests. They even flipped me over to repeat one CT scan to double check for abnormalities in the vessels in my lungs. In the end they took the chance and put me through a risky heart catheterization, the gold standard test for PH. A risky test, because of my bleeding issues, which showed I was on the cusp of having PH. Had I been in the United States I would have been diagnosed and put on medication to halt the progression. The specialist told me there was no funding available for medication until my numbers reached a certain point. I looked at him and said, "You mean it's a crap shoot, then. Wait until the numbers rise so the government will pay for medication and hopefully it will halt the progression of the disease." He nodded. I felt very frustrated.

I don't know what happened. God only knows. A few years ago I had some prayer before I gave a talk at a retreat. I remember standing there afterwards and commenting to someone that I was breathing as clearly as I did when I was on oxygen. It felt surreal. A few months later my lung function tests showed an improvement. Eventually the specialist said I didn't need to see him anymore. Then, last year when I went to rehab and started dealing with a bunch of issues, my health improved even more. The days of having to count my spoons became a thing of the past. Our trips to town had previously very planned out, I was always dropped at the door and had to choose which stops were priority. These days I delight in parking as far from the door as I want. Yes, I still sometimes have rough days. Days when lifting my arms to shampoo my hair expends more energy than I can muster. Those days are very discouraging as I have no idea if they are temporary or the start of a downward spiral. Thankfully, they've continued to be temporary glitches.

It could have turned out so much different.
I try not to take my current health status for granted.
My friend Karen wanted nothing more than to live to see her 50th birthday.
For a long time I read the PH Message Boards for support and encouragment, especially when I had to deal with doctors who looked at me like I was just attention seeking. That if only I would lose weight and exercise my breathing problems would go away. They conveniently overlooked the fact that I had been doing just that when my problems surfaced. Please don't look at someone who is obese and on oxygen as if it's their somehow their fault. PH is high blood pressure in the lungs, which has nothing to do with diet, exercise, or weight issues. You can't prevent it. Skinny, fit people get PH, too. And there are others who look perfectly healthy but who struggle mightily to be out and about. So many times people would tell me I looked so good as if looking good nullified how I felt. I never bothered to tell them that on the very worst of days I never went anywhere, so they only saw me on my best days.

Take a deep breath and be glad you have the ability.
Trust me, if you can't breathe, nothing else matters.

1 comment:

Owen said...

Yoikes, too much scary health stuff going on in our lives!