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Nov 15, 2010 - 0 comments
Tags:

Evans Syndrome

,

ITP

,

aiha

,

spelenectomy

,

steroids

,

Lip

,

lymphocytic Intestinal Pneumon

,

insulin



March of 2000 I experienced my first go around with doctors. I had been experiencing severely heavy periods, and my Mom took me to the emergency room. They did a CBC showing my HGB was at 6, they decided to give me a blood transfusion. After the transfusion I was suppose to follow up with an OB, when I followed up they put me on BC. Continued on the BC until 2004. Around June of 2005 the heavy periods came right back resulting in another hospital visit. This time I waited entirely too long my HGB was at a 2 (yes I did say 2). After many bags of blood and plasma I was dx with ITP and treated with steroids. After a few follow ups I was in remission. Until November of 2007 when this time I just didn't feel well, my chest was heavy (no heavy periods). They tested my CBC to find out my HGB was down to a 6 once again, this time it seems as though I had AIHA. Turns out when you have ITP you can experience AIHA also known as Evans Syndrome. After the blood transfusion I was treated with large amount of steroids for several months with little to no improvement. I underwent IVIG treatments to prepare my body for a spelenectomy in Feb. of 2008. After surgery the steroids continued for several months, until I was finally cleared to begin to taper off. I have been off of the steroids for almost two years.
Sometime after my spelenectomy I felt a tender bump around one of my incisions and was asked to get a CT done to make sure there wasn't a hernia. The CT came back showing no hernia but the lower lobes of my lungs were captured on this CT and showed a significant amounts of scaring. Further test went on for over year until May of 2009 when I had an open lung biopsy to test for cancer and other casuse. Thank goodness there was no cancer, but I was then dx with LIP (lymphocytic Intestinal Pneumonia). Currently the lung disease doesn't seem to symptomatic, but in the mean time I visit the doctors regularly to check on my CBC and lung functions. Since March of this year I had really been trying hard to lose weight in preparation for my wedding. However working out three times a week at athletic level was only resulting in inches no pounds. Soon after the wedding I started to get this horrible achy feeling every mooring when I woke up. It would take most of the day for this to fade. There was also the constant fatigue and weight gain. After many complaints I was told it was because of my spelenectomy over two years ago. This was not only causing me to feel horrible, but also making my WBC increase. Needless to say with the spelenectomy I had already had to deal with pain from my severely enlarged lymph nodes, but now this.
I continued to see my primary doctor who often said it was a sinus infection and gave me a z-pack. Well November 9, 2010 I decided it was time to find a new primary doctor who would listen. Two days later and eight tubes of blood the test came back showing that my Insulin was double what it should be. Thank goodness a doctor who not only knows how to listen, but doesn't just hand out antibiotics. I began Metformin on November 11th and have stuck to the GI diet so far with no problems. I have already felt a little better in the ache department. I hope that this may be the answer to allot of my aliments!!! It hasn’t even been a week, but to know I was right something was wrong makes me feel allot better about my pursuit of finding a good doctor.


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