Archive | March 8, 2013

Solease hard lessons of Lupus

To continue with my journey with lupus. When I started dialysis I didn’t even know what that was when they told me. I was 21 years old and didn’t know anyone who was living on dialysis.  I was told at a local hospital that I was extremely sick and they would be surprised if I make it through the night. Lupus is very hard to diagnose and even harder to treat sometimes. Many doctors are unfamiliar with this disease and do not want to learn more leaving the patient to have to make big decisions. I didn’t have to make it. I had a doctor come in my room in the middle of the night and had me flown to UofM Medical Center. (The doctor who transferred me informed said that I needed to be with specialists. My lupus had become to severe and needed special care. I had a fever of 105 and they couldn’t break it.)

Once at UofM I learned I was no longer making blood thus begin my daily blood transfusions along with getting plasma also. Keep in mind this is all new to me and I’m learning all this very fast. I had no time to even think. I just had to learn it and decide treatment. I was supported with my family and they too was learning. I was told in the hospital that a cousin of mine had lupus and I never knew. I was learning hard lessons fast. Lupus can come and attack very fast and hard.  A team of about 15 doctors came in my room the next day and I found out then that I was different.  All my blood work was coming back fine accept for a few things, yet my blood count was dropping so I needed blood everyday and my kidneys didn’t work . They knew I had lupus they just hadn’t seen nothing like this before. I was asked to if they could use me as example in medical books. I said yes. It is not under my name.

This don’t sound real, but it gets worse before it get better.


I will be back to tell more later.