Living with HUS/TTP

I have had low platelets for a number of years and I wasn’t really worried about it because my doctor told me that sometimes people just have low platelets for no good reason, that some people have low platelets like others have low blood pressure. One day I got a call from my doctor’s office and they told me that my count was 25,000. They said I had to go see a hematologist.

The visit at my hematology office was frightening. I felt swept away. I was asked a million questions, gave about seven tubes of blood, the blood bank came and took blood and I was given a plastic bracelet that I was told had to stay on my arm forever because they would have platelets for my use in case of emergency. Then came the big Kahuna. I was told I had to go upstairs to outpatient surgery so that I could have a bone marrow biopsy. I almost fainted dead away. The hematologist told me that there would be no anesthetic, no conscious sedation or anything else to calm me down. He did agree to give me 0.5mg Ativan. Big deal.

Being a nurse, I knew how painful these experiences are. I elected to leave and “think about it”. I found another hematologist. One that would do the procedure with Versed. I made an appointment and went in. Meanwhile I was placed on thrombocytopenic precautions and was told I could do NOTHING. I was currently in a musical and refused to give it up. I had to wear a piece of lace around my wrist to hide my blood bank bracelet.

When I went to see my new hematologist, she was pretty and nice. She had the bone marrow biopsy done quickly and I was diagnoses within an eleven day timeframe. I have ITP. My body tags my platelets as “bad” and my liver pulls them out of my blood stream. Why does my body do this? No body knows. I was so upset when I was diagnosed that I thought my stomach would kill me. It hurt so bad due to nervousness that the only thing I could eat was hamsalad sandwiches. I lost 20 pounds. I was put on prednisone, but it didn’t help. My hematologist said that if my counts ever got that low again that I would have to have my spleen removed. My platelets eventually came up. Today my platelet count is 88,000. Not quite normal, but not too shabby, either.

I have learned many things.
1.) No Keflex. It is a platelet killer
2.) You can still have surgery if your platelets are higher than 50,000
3.) You can’t do anything fun, like go to water parks or play in the ocean if your platelets are lower than 50,000
4.) If your nose bleeds you better get a CBC
5.)Hematology clinics are the same as oncology clinics. Be prepared to see people in all levels of suffering.
6.) Not every phlebotomist knows how to draw blood. Tell them where the good vein is.

I am careful now, but I am healthy. I get monitored every three to four months.