I am 29 year old male and I recently found out that I have Hereditary Spherocytosis. Apparently my parents knew that I had Hereditary spherocytosis since I was a baby, but didn't tell me, and I had to go to the ER for pnemonia to find out.
Child Abuse? I can't understand for the life of me why my parents didn't tell me. Also I have an enlarged spleen which makes matters worse.
I had my gallbladder removed at the age of 26, due to gallstones. I don't know if Hereditary spherocytosis and the Gallstones were connected, because I do have high biliburin, but there was no pigmentation that should occur with HS, and to be honest I don't really exercise and my diet is mostly junk food, but I am improving. So maybe Hereditary spherocytosis and diet lead to my gallbladder being removed.
As I said I found out about HS when I went to the ER as I had pneumonia and mono at the same time. For the past few months they have been running all sorts of tests, my Retic Auto is 8.3% or 420 Count. I recently did an ultrasound and my spleen is about 23cm, which is severely enlarged, but some of it might be due to the mono. My hematologist told me that I should wait a few months and take some more tests just to see my baseline. Also they are running tests, as I might have Thalassemia traits, which is really not of concern unless I marry someone with Thalassemia and pass it on to kids.
I just need advice from people that have had similar issues with HS. I am only anemic when I get sick, but normally my hemoglobin is around the low end of the standard range.
My concern is that I am always tired and fatigued. For a long long time, I have been tired and fatigued and knew that it wasn't normally. I would go to school and just pass out, I would come back from work and be dead tired. Just felt like complete exhaustion from doing things. It gets to the point where I don't think I can have kids, as it is so so hard for me to get up in the morning. I barely have enough energy for myself, let alone other people.
My doctor is thinking of recommending a splenectomy, due to the anemia and the fact that my spleen is so large that a rupture would be devastating. I am 29 and already have taken out my appendix and my gallbladder, and getting scared from another surgery at such a young age. I should be running marathons not going to doctors all the time.
I don't know if I have mild or severe HS, but just wondering if people with similar situations had a lot of energy after a splenectomy. Was quality of life better? I just want to live a normal life, but worried about the cons of a splenectomy, with the issues of being more vulnerable of some illnesses.