The hard part is knowing where to start the story!
When I was 16 I went to All Children's Hospital in St. Petersburg, Florida with symptoms of high heart rate and dizziness. My BP on arrival was 188/110 and my pulse was 196. But what was really off was I only had a 6.7 red blood cell count. So I went under the test for pheochromocytoma and came back positive. I had 25 times the amount of adrenaline in my system than I should have had. They knew I was internally bleeding somewhere, but the first two endoscopies came back clean in the stomach area.
The photo at the right is me when I was 17 or 18, (2000-2001). When the GIST tumor was taking its toll I couldn't eat enough to gain weight. I got down to about 82 pounds (I was 5'3"). I consider this the time when I was the sickest before my pregnancy.
So for a year they treated the bleeding out problem with just blood transfusions, as their main concern was the locating of the pheochromocytoma. (I've been a member of a pheo forum for a few years now; it is a great sister site I think would help many members of this GIST site.)
In July of 2000 I had a left adrenalectomy, because they thought the pheo was there. (It was slightly enlarged, and was their best guess, so out it came.) Soon after I found out that the surgery wasn't successful, and I went back on the BP meds. They decided to figure out the bleeding problem and after the third endoscopy they found and bleeding ulcer and a CT scan showed a mass on my stomach. So in July of 2001 I had a laparotomy and they removed a 1 inch by 2 inch mass that ulcerated into my stomach and removed some of my stomach along with it. Dr. John F. Lee was my surgeon for both of those operations. My main doctor at All Children's failed to mention it was a GIST tumor, or I may have put the two things together sooner and been at this site sooner (lol).
I stayed on my BP meds for years and the bleeding problem was a thing of the past. They pretty much told me they couldn't find the pheo, and that I could live on the meds. I made the move to Minnesota soon after and then got pregnant last year (age 24) and problems arose right away with the pheo. I was introduced to Dr. William F. Young at the Mayo Clinic in Rochester then, and that's when they put all the pieces together and told me I had Carney Triad. I had to wait until the baby was born before I could undergo the tests to locate the pheo. That made the pregnancy high-risk. I had my baby Dec 27, 2007 (he's perfect ^.^) and underwent an MIBG scan here, and the tumor showed on my heart. I'm actually sitting in recovery now from the heart surgery that removed the paraganglioma (Thank god it was a success, and for the first time in 9 years I haven't had to have BP meds!) Dr. Young has told me I have one more surgery to remove my entire stomach because of the nature of GIST tumors, and that will hopefully be my last surgery for a while. But I have to heal first from this surgery before I go in for that.(So maybe the next op will be around Christmas.)
I've heard so much about Dr. Carney because he's here at the Mayo, but I have not met him yet. (Dr. Young promised he'd arrange it though ^.^) I guess the GIST tumors have always taken a back seat to my pheo, but now that I'm healing from that, the GIST side of Carney will be taking the foreground.
So that's my story in a nutshell. Sorry it's kinda long winded, but summing up 9 years of hospitals is tough especially with such a rare syndrome.
Below are Erin, her husband, and their son in 2008.