Wednesday, October 25, 2017

The New Diagnosis, New Treatment Plan, New Life.

Going to a pulmonary hypertension center of excellence saved me from unnecessary surgery, and from a diagnosis that is incredibly serious. 

I can't say enough that if you are struggling with an illness that might be rare, or feel just like you aren't getting the care you need, your best bet is heading to a specialty center. 

After redoing my testing, the damage they were seeing in my lungs on my other scans appears to be minimal. More like what would be seen with obstructive sleep apnea. My first test for that was negative, but that will be redone as well. And a breathing machine at night may actually help with the episodes of SVT. (It also might not make a huge difference, but I'm hoping it will). 

If once again it's seen that I have no sleep apnea, the next thing to focus on would be pheochromocytomas, or "pheos". There was only one positive marker for that in the bloodwork and it's similar to what you'd see in patients with a sensitivity to that stuff anyway-so it's not a diagnosis, but just a direction to look toward if needed because the attacks are pretty similar in nature. 

Those are really rare, and surgery for that would be hard for me, so all money goes down on the restructuring of my heart and breathing issues being sleep apnea related for the time being. And I'm, for the first time in months and months, looking forward to GETTING. BETTER. It will take both the treatment and lifestyle changes, but it can get better. 

That was something I was told over and over again wasn't happening. I think I wore the terminal diagnosis sticker the best I could, but the best I could deal with it was probably not healthy. I swallowed a lot of the sadness. I feel like I tore certain pages out of the book of me. Changes were made during the facing of this ordeal to who I am. A lot of them are probably for the better. Some of them feel like scars. 

 I met a lot of wonderful people who are dealing with that specific illness, and their bravery is almost indescribable. 

With the right diagnostic tools and specialists, I found out I was lucky enough not to be that sick. And that's all it fucking is. Dumb luck. Emphasis on that first word. It could be any one of us. And we need to have more conversations about things like that; about the compassion needed, the research, the funding, the understanding surrounding these kinds of battles. 

That we live in a world where diseases like Pulmonary Atrial Hypertension still exist bothers me in so many ways. And I can't think of any damn thing to do now that I am clear of that diagnosis for the people still living with it except donating for funding research, and raising awareness of the condition and the need for fast and proper testing if you are suspected to have any kind of PH-related illness. 

A few months ago I was told I needed to get ready to be really sick, and then die. I was told there was no way I'd see my children grow into gangly teenagers and beautiful adults. I was told this was probably it. 

And it's not. 

And everything feels different. This is a different me. A different story. A different ending than I expected. 

Nothing is promised to any of us. 

But this is hope. 





Credit to the photographer for the background for the sketch:

                                                                                Joel Filipe



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