Saturday, July 30, 2005

 
Hello Everyone!

Hope everyone is doing well out there. My counts have been good for the past couple of weeks. My hgb is hanging in the 12's and my hct is hoverring right around 35. I don't ever remember having blood counts this high and stay this high for a couple of months. Go red blood cells! Anyway, my prednisone has been decreased to 15/10 e.o.d. One of these days I'll get back down to 15 e.o.d. I've asked to have a bone density test since my bones are still hurting, but I have to wait for the referral to come through. I also meet my new hematologist this week. I have to get a new one because of insurance purposes. Sigh. This means I'm probably going to have to "train" another doctor. Fun for me.

Lissie

Tuesday, July 05, 2005

 
Hi All!

Hope everyone had a wonderful Holiday weekend. I had a wonderful Fourth of July at relatives. We had to leave before the fireworks began, but we got see lots of firework shows on the way home. Now we have some relatives here at our house. Having lots of fun since we haven't seen them in over a year!

Happy Canada Day on July First to all my Canadian friends. Hope you all had a good time as well.

As for me. I'm a little tired today, I think that's just from the holiday weekend. I'm hoping it doesn't mean my counts are dropping since I was just allowed to taper my medication a little bit. I don't want to up the medication again, I'd rather not gain anymore weight or have anymore bone pain.

I hope everyone out there is doing great!

Liss

Saturday, July 02, 2005

 

July 2, 2005

Hello!

My name is Melissa, or "Lissie." I have a rare blood disorder called Diamond Blackfan Anemia. There is an estimated 700 people in the world with this disorder. This is where I will keep you updated on my progress. This blog is intended to inform others of this blood disorder and to further awareness of it.

A little about myself --

I was diagnosed with Diamond Blackfan Anemia at the age of 3 months. I have been on Prednisone, a steroid, since then. I am now in my twenties. That's a long time to be on Prednisone. I have suffered some side effects of the steroids, but I have to remember that its the steroids that keep me alive.

My mother also has Diamond Blackfan Anemia. She has been in remission since she was 16. She was also on Prednisone for 16 years. She was diagnosed at the age of 2 months. She was told that she wasn't going to pass it down to her children, but we now know that isn't true.

For my progess so far --

My latest lab results this week were awesome! My hemoglobin (hgb) was 12.9 and my hematacrit (hct) was 35.5. Yay! I don't remember ever being this high in my life unless I've had a blood transfusion and it's been years since I've had one of those. However, I'm still on a slightly higher dose of Prednisone than I'd like to be (10mg/17mg e.o.d. - meaning I take 10 mg one day and 17 the next day and so on - I'm trying to get down to 10 mg e.o.d.). My bones are aching! :(. Saw my hematologist this week. I'll see my family doctor next week and I'll probably ask her to run some tests on my bones since I think may have osteopeonia or osteoperosis - a side effect from the Prednisone.

Anyway I hope you find this blog useful.

Liss

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