Okay well I am about to lay it all out there for those that are asking me all kinds of questions…
I have, ” Idiopathic thrombocytopenic purpura”, or something like that. They are still in the diagnosing stages. But getting closer to knowing. We just know something is attacking my platelets. Normal platelet low is 150,000. At 40,000 they are concerned greatly at 30,000 you tend to start having problems. At 20,000 you are considered a bleeder and they are gravely concerned!!! My platelet count was at 7,000. What took me into the hospital to begin with was I was dizzy and my heart was pounding. I thought.. it was heart problems, since they run heavy in this family and I do have some also. But the VA is just exceptional for drawing blood!!! When you go into the Urgent Care. And they did… several times. They even thought the lab messed up and made them come back and redo the blood draw. Once results were back, I was sent to a 5 day stay at Sacred Heart. They gave me IVs for 4 days of prednisone and the I could come home the 5th day!!! The next text after the last does showed it was coming up, It had gone to 92,000!!!
Went the next couple of days with no testing and when tested it had come down to 15,000 ☹ so another week of prednisone. This time it only went from 15,000 to 32,000. And yesterday it was 48,000. Not good this go around. We found that my platelets are “prednisone dependent”. Which means IF I go off the prednisone then my platelets will crash.
Also found when my platelets go low, so does the magniseum and I need IV of that, because it messed with my heart and gives me massive headaches.
After every other day in the Urgent Care at the VA, I was sent back for a CT scan because of a possible blood clot. At the VA they found with prednisone that when my blood pressure goes sky high (because of prednisone reaction, I have high sensitivity to it and crazy reactions) that my oxygen levels would crash. It would panic them when it hit 60-70… (hypoxia), but I would sit there and talk to them and get my heart rate up and I would be okay. Well that is when they became concerned about a blood clot. So was sent to the hospital. Luckily no blood clot. Which is great. I don’t need anything more to deal with.
Then yesterday was my first appointment with the blood doctor, He is new and works at Cancer Care NorthWest. I don’t know about the good or bad of this place. But I was treated really good and I seriously like this doctor. He asks questions and digs deep for answers AND.. he wrote everything out for me on paper, so I had what he said and I wasn’t second guessing myself. That in its self is a miracle!
So I had to go back to the lab, because I had mentioned way back they said something about the HLA B27 gene. After 18 tubes of blood… hopefully Monday I have some very valuable answers.
We start tapering (stepping me down) off the prednisone and then next week I start a 4 week treatment of Rituxan. And that will help get me off the prednisone. Placing a lot of hope in one drug.
Oh and before I close… no it is not cancer, all the other blood level indicators that MIGHT signify cancer, are good. This is an autoimmune disease. Unknown type at this minute.
And yes, my trip to England/Scotland has been canceled. Its okay though. I would rater treat it here then get over there and not have my doctors or stuck in a hospital or.. who knows. So safer for me not to go.. besides I feel I am more important then a trip .. one which I can also make again.
Its all good.. Lets get this figured out and get my life back.. because I sure don’t like this.. prednisone is bad juju to me.. but I will take it. I WILL do what it takes. My will to live is way strong then the will to give up!!!
I will occasionally post updates.. and thanks everyone for your concern and well wishes.. ❤ ❤
Posting info below if you are interested: