Health at Mayo Clinic Update

Hi everyone!

Ok so last I left off we have found out that i had severe anemia, due to an extreme iron deficiency. We had found out that my hemoglobin level was a 6.6, which means I had HALF the amount of blood as a normal person, therefore my heart/brain/body had to work twice as hard to pump the blood through faster to get oxygen through my body.

I have seen 3 cardiologists since I have been here, and all see to be in agreement. I definitely have POTS, which was diagnosed years ago. This just means that when I stand up, my heart inappropriately races. All 3 cardiologists also agree that the severe anemia is causing a tachycardia now, as well as what they call a "flow-mur". This is like a heart murmur but only happens because the body can't move the blood fast enough, therefore it causes it to skip beats.

I saw the kidney specialist who thinks the swelling in my legs is caused by idiopathic edema. This is caused by a capillary leak, and only occurs in young females.

I have also seen a endocrinologist since I have had elevated cortisol levels since the start of 2009. However he thinks that my adrenal glands are just working overtime to battle what my body is going through, and that they are not having independent problems.

I had an endoscopy of the Upper GI done last Friday, and that showed multiple (seriously probably over 30) ulcerations. They are basically just small, superficial ulcers in my stomach. These are thought the be the source from which I was bleeding. They said because they are so small, I was just oozing over a long period of time which I would not have noticed. They took biopsies of the ulcerations as well as throughout my stomach. Yesterday I found out that I have high levels of eosinophils in my stomach and small intestines...eosinophils are white blood cells. I have tentatively been diagnosed with Eosinophilic Gastroenteritis. This is perplexing all of the doctors here because the ONLY symptoms that I have of this disorder, is anemia and slight asthma. But having a high level of eosiniphils has been confirmed through blood work as well as biopsy results. But like I said this is a tentative diagnosis, there are a few other options it could be but we have to get the anemia under control before we know for sure (other things are a couple types of leukemia, blood clotting disorders, etc).

So if it is EGE, how are all of these symptoms related to it? The thought is that I developed EGE, which caused the ulcerations. The ulcerations slowly bled, until I developed the Idiopathic Edema, Flow-Mur, tachycardia, and elevated cortisol levels. So first we have treat the anemia before we can take care of the others!

Tomorrow I am heading back to CALIFORNIA!!!!!! I will be returning back to the Mayo Clinic January 4, 2010 to get to the root of the problem, after we get the anemia under control through at home blood work-up. Thank you to everyone for your support, concern and love. Of course I will keep everyone posted on what the final decision is in a few weeks, as well as plans for a future trip back to the Mayo Clinic.

Mayo Clinic!!

Monday was my first appointment at the Mayo Clinic in Scottsdale, AZ. I met with my diagnostic doctor, Dr. Windgassen, who was in charge of listening to my MANY complaints, and then deciding what tests needed to be run, who I needed to see, etc. She sent me immediately to get an echo cardiogram and blood work. I was provided with my schedule that she had put together so far, which looks like I will be here at least through Thurs. Nov 17 because she has every day filled with things to do.

When they drew my blood they took 15 vials of blood, which took FOREVER!!!! Less than two hours after that I got a phone call from Dr. Windgassen that I needed to immediately go to the ER for a blood transfusion, because my blood count was 6....and should be a 12! After 13 hours in the hospital, and 3 units of blood later, I was released at a 9. I was told today that I am at a 9.5. They have discovered that my severe anemia is because I am severely iron deficient! I literally have almost 0 iron in my body. So now in addition to all of the tests and specialists I was originally slated to see, we now have to figure out what the cause is.

On Friday I am scheduled to have a GI Endoscopy, which I will be under anesthesia for. Hopefully we can determine from that what is causing my blood count to be so low.

It's truly beautiful here, and such a relaxing place to be. I will be sure to post updates as they come along. Thank you to everyone for your love and support, this is a really difficult time for me and I really appreciate it!