Friday, May 25, 2012

Gowns, and Needles, and Pacemaker Leads -- OH MY

So I thought about saving this post till after I got home, but I decided I needed to write. Get it all out. I came down, or maybe up, lol I'm so bad with directions. So I came down to Salt Lake City for my Rheumatology appointment and my six month cardiology check up.
Let me just say, this is the first time since 2008 that I made it six months between cardiology visits. I'm quite happy with that.

So as I said, I am the definition for directionally challanged. But I made it into Salt Lake and to my hotel without getting lost! Thank to my mom and google maps idiot proof directions. So I check in and go to meet a little boy who is in the hospital waiting for a heart transplant. I did not find Primary Children's Medical Center as easily. But I got there, and I found his room and I got to meet this sweet little boy. 

Anyways. Today was my appointments. After fighting with insurance having to get them to change the name on my card, which they misspelled I got called back. Almost right on time. My Rheumatolgoy appointment took about 2 hours. They asked a bunch of questions and then made me get into a gown for a physical joint exam
(sexy gown right!?)

And I got my diagnosis, Spondyloarthritis, which is an umbrella term, there are a lot of diseases that fall under it. Specifically, Psoriatic Arthritis. They found a patch of Psoriasis on my scalp. This Psoriasis that I didn't even know I had, caused the auto immune disease, Psoriatic Arthritis. Which is what is causing my swelling and pain.
(You have no idea how happy I was to finally know what the heck is going on)

So they ordered a bunch of blood work and xrays and hopefully I will be able to start my new medications on Tuesday. The medication I'm going to start is used to treat cancer, just a low dose of it. I asked "Will my hair fall out" they told me its a possibility but they are giving me folic acid to help prevent it. Fingers crossed I can keep my hair. I'll see them again in 3 months.

So I go have my xrays about 11 or 12 of them. I wouldn't be surprised if I turn into an awesome super hero. I took the led vest off before the xrays where done cause it was just to heavy. So I expect any day now I'll morph. My xrays took so long I barely had enough time to scarf down 2 bites of mashed potatoes before I needed to be in cardiology.

Cardiology went GREAT! NO HEART FAILURE! I go back in 6 months for a routine check-up and echo. My DR did want my pacemaker checked out though, even though that wasn't on my shedual. So the lady came down and interigated it. Which is where the first little bit of bad news pops up.

Appearntly the lead is showing a lot of noise. Which means it isn't reading right. Sometimes it reads that there is issues and paces because of it when there was really nothing. Sometimes it doesn't pace when it needs to. My doctor said its a mild to moderate problem. We need to keep an eye on it. He wanted me to come back in one month, but I wont have the gas money, so I'll come back in three since I see rheumatology again in three. One visit less gas.

My doctor also told me that it would be best, and easiest for him to see me in Salt Lake. So we are officially moving are my heart care to utah.

All in all, not a bad day. I'm quite proud to say I broke my record of viles of blood. My high is 6, but today rheumatology wanted 7 and cardiology wanted 2. I was quite excited!

 Two unexpected turns, I'm still having issues getting my mind around having Psoriasis. I was prepaired for the auto immune disease, but I was not prepaired for a skin issue.  It will take me a bit to get that through my head.
As for the pacemaker lead, that was unexpected. But I can deal with it. Another surgery might be sooner then we imagined to replace the lead, but thats okay.

I've got this.

1 comment:

  1. You have the BEST Attitude Jessica. I am amazed by all of the Special things for others. You always make time for so many. I get to call you "friend". I feel an Honor to this! ♥ Love you.

    Gina Cannata Luffman aka Casey's Mom ♥