Lissie's Blog

2006-11-26T13:51:00.000-08:00

Hi everyone! It's been awhile, I know. Hope everyone had a good Thanksgiving! We had a lot of family visiting us. It was fun. I've also worked all weekend, which is not so fun. I've been in school since September. I'm in the progress of earning my teaching certificate and a Master's Degree in Education.

As for my counts, they're doing well. My hgb has managed to stay in the low 11's and upper 10's these last few months. I'm on 8 mg everyday, and have been so for the past few months. I'm begginning to think that might be my "magic" dose for awhile. Don't want to interrupt things while my blood is doing good and it's a much lower dose than I've been on in the past year or so.

Hope everyone is doing well.

Melissa

2006-01-16T21:21:00.000-08:00

Hello Everyone!

I know it's been awhile since I've updated. Hope everyone has had a wonderful New Year. I'm doing fine. I spent all of December and part of January with a broken foot. That wasn't a fun experience. My foot is still a little sore, but at least I'm allowed to wear shoes now. And after breaking my foot, by hematologist nudged my referral to get a bone density test along (since my general practitioner doctor referred me almost 6 months ago and my insurance uses only one facility and are months behind on their bone density tests). So I had one done this past week and I am expecting to get the results soon - I pretty much expect the test to reveal that weak bones, after 27 years of Prednisone, how could I not? Anyway, I will keep you updated on that front.

As for my blood, it has stayed fairly steady in the elevens the past few months. I've been tapered down to 10 mg/11 mg every other day. Still more than I want to be on, but at least I'm slowly being tapered down.

Liss

2005-09-16T18:10:00.000-07:00

Hi Everyone,

I saw the hematologist I've had for the past 3.5 years for the last time yesterday. It's sad to say goodbye, not just to him, but to all of his staff. I loved all the nurses and the office workers there. I had to change because I have different insurance. Sigh. I hate insurance troubles! But, at least I have it, and for that I'm thankful. And I do like my new hematologist, I just have to "train" him still. I've seen him twice so far.

My counts have gone back into the 12's. Yay! I hope this is a trend that keeps up. I get to reduce by one milligram again so I'm on 13/10 every other day.

Last weekend I started teaching the three year old Sunday School. It's my fifth year doing this, and they're all so cute! I have this weekend off. We rotate between four teachers. I might stop in to see if they need some assistance though.

Have a wonderful weekend!

Lissie

2005-09-02T21:53:00.000-07:00

Hope everyone has a wonderful Labor Day Weekend. I'm going to see my new baby cousin for the firs time this weekend :). I'm so excited about that.

I got my most recent labs back this week. My counts have fallen a little, so I'm no longer hanging around in the 12's. I'm in the 11's at the moment, which is still good for me, but since I did drop a little, my prednisone is staying the same for now. I'm hoping I'll go back into the 12's. I'm liking these higher numbers and don't want to slip back into my normal 10's and 9's I've lived with in years past. It's only been a few months that my numbers have climbed this high and and stayed. I'm hoping it lasts.

My prayers are with all of the victims of Katrina tonight. I hope the help and relief that is needed comes. It's so hard to watch such devastation.

Liss

2005-08-08T20:27:00.000-07:00

So I've been sick this past week. Not fun. Icky cold. I missed work for a day. I'm feeling much better now, thank goodness. I did have my blood checked, and my counts are still hovering in the near normal range, so that's good. I met my new hemotologist on Friday. He seems nice enough. Since my counts were good, and my cold didn't seem to be affecting them, he reduced me a little to 14/10. Still on the slow taper, we'll get down there soon enough. Not sure how far I'm going to get down, but something less than what I'm taking would be nice.

Liss

2005-07-30T11:01:00.000-07:00

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

2005-07-05T18:18:00.000-07:00

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

July 2, 2005

2005-07-02T09:30:00.000-07:00

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