A bowling ball with a mustache- 4/20/2011

Hi All,

I debated writing up a note today because I don't have all the information that I would want, but I guess you can find out the rest when I learn it!

I had the PET scan on Friday and Monday I met with my nurse practitioner (NP) just to check in and see how I was doing since I'd left the hospital. I'd started to perk up by then and was having a lot more energy than I had since I was in the hospital.

The PET scan results were in the computer so I asked my NP to go over them with me. She was hesitant dig into them because my doc needs to interpret them, but we did go over the highlights. Basically, it did show some inflammation in my heart, which is what they would expect to see with sarcoidosis. My NP didn't know if having inflammation could be a result of something else, but is usually does mean sarcoidosis.

They also found two infarcted areas in my heart. (Yes, I know this is serious, but every time she said "infarcted" I snorted. Come on. That word is hilarious. Like top ten funniest words, I'd say.) An infarcted area is a place in the heart that is not receiving or pumping any blood at all. Basically dead heart tissue. Hmm. My NP didn't know if I already had one and the second came along with the heart attack, or if the heart attack caused them both. That is a question for the doc. Another question is about the size of the spots.

We then talked about sarcoidosis in general. If I have it, I'd probably have to start taking steroids right away. The steroids attack the inflammation and hopefully can get it to go into remission. I may be able to taper off the steroids in a few months, or I could have to be on them for a lot longer than that. They have a lot of really lousy side effects like hair growth, weight gain and more. Hopefully, my doc will have some ideas on curbing those effects, because they are really throwing me for a loop. I guarantee you, I'm going to try my best not to turn into a bowling ball with a mustache.

From what I can tell, the good news is that if they treat the sarcoidosis, they can possibly prevent my heart from getting worse. And if my heart does end up wearing out, having sarcoidosis wouldn't prevent me from getting a heart transplant.

Oh, and if I have sarcoidosis, it would likely mean I didn't get all these heart problems from a virus like we thought. That is kind of throwing me off balance. I've kind of made peace with that bit of bad luck, but having a whole other disease is overwhelming and hard for me to get my head around. I'm really trying to not think too much about it until I meet with my doc this coming Tuesday and get some solid information.

Nick has (as always) been there to hold my hand, calm me down, and let me soak his shirt with my tears. I made a total rookie mistake and went to Dr. Google to get details on this condition and medications. If I ever lend you any advice, please let it be this: Those message boards and homemade websites about diseases are way better at causing hyperventilation and stress headaches than they are at giving any worthwhile information. Don't read them- especially when you are confused, scared, and ill-informed. FYI.

Ok, well that's all I've got for now. I'd appreciate any extra prayers or good vibes you've got laying around. I really just need to calm down and wait for real information on Tuesday. *Breathe Jana, breathe*

Lots of love,
Jana
ps, We got word that our neighbor is making improvements every day! She has a very long road ahead of her, but she's moving in the right direction!