Living With Hereditary SpherocytosisI was born with Hereditary Spherocytosis and have delt with it all of my life. My Mom also has HS, but not as severe. At age 3, I had a Spleenectomy due to a super enlarged Spleen. In my first 10 years of life, I also had several siezures, several ear surgeries, many blood transfusions... With my seizures I was on tegretol, and I was rececitated 3 times. But I was able to grow out of the Siezures. I have been on PenVK since I was young, now that I am in my late thirties, I am up to 1000mg PenVk daily. About 5 years ago, several Dr's told me to wean myself off the PenVK due to their thinking that I would become Immune to the effects and with such a high dose, and I had Acid Reflux caused by the high dose of antibiotics. In following their recommendation, I became extremely ill and ended up in 2 different hospitals with a constant temp of 104 degrees Fahrenheit. I was then told that I would definitely need to stay on antibiotics for all of my life. During that time they became concerned with my large thyroid and hypotyroidism. I started taking Levothyroxin, although I was not great at remembering to take it daily like I was supposed to. 4 years ago I started getting sever abdominal/chest pains and spent alot of time going to the ER and specialists... including an air contrast barium enema, not fun. A year later while in the ER they realize that I had gall stones, two weeks later I had my gall bladder removed. The next year all my teeth were finally getting to the point of disrepair due to my acid reflux, so I bit the bullet and went ahead with a Full Upper Denture and removed all off what was left of my upper teeth. I made a plan to do the same with my lower part of my mouth as I only have 3 real teeth left on the bottom. During my last physical, my Dr was concerned with my Thyroid and the symptoms I was telling him, so he sent me immediately to my Endocrinologist. I was then told that my Thyroid was Impressive and needed to be removed. Right now I still am recovering From a Total Thyroidectomy, and I now have to consistently take Levothyroxin for the rest of my life. There are so many more details I have, but this is a general guide to my life with Hereditary Spherocytosis!
Jason120 36-40, M 1 Response 0 Mar 16, 2011