So last Friday I had my fill-up. 2 units of packed red cells and 2 hours of Desferal. I'm feeling pretty good from the blood but I'm still feeling really weak and get tired easily. Driving me nuts!
It's a good thing I'm taking some time off from work as I seem to need at least two naps during the day...this after getting up at 10:30am. Sheesh. I feel like an old lady. I could get used to the whole "housewife" thing. If only we could live on one salary...
So far I've lost 7lbs while on Pred. It could be more but I'm starting to have intense cravings and I have to give in every once in a while. Like with these Ritz crackers I'm munching on...oh, and the aMazing bar I had earlier... oh, and the....
Still I'm proud that I've hung on with some weight loss...
I didn't get a call from my nurse today with the CBC results but I'm sure they are fine since I just had the transfusion. Will have to wait another week to see how I hold up. Until then I'm going to get back on track with the Weight Watchers and try to get more exercise in.
til later then...
Wednesday, April 20, 2005
Wednesday, April 13, 2005
Transfusion on Friday
I had my blood test this morning and was surprised by having blood bank orders written for me. My doc's office didn't call me last week with my count (7.8) because they didn't want me to get discouraged about the medicine.
Today, my count was up to 8.0 and my retic count (the reason for the Prednisone) was good! But I've decided to get a transfusion anyway on Friday. I'm feeling pretty terrible and I'm hoping that if I get a blood boost then the Prednisone will just take off and I can maintain at that level.
The short term disability has been good for me as I've done NOTHING for the last few days...probably the only reason I'm still chugging along...
Til next week then...
Today, my count was up to 8.0 and my retic count (the reason for the Prednisone) was good! But I've decided to get a transfusion anyway on Friday. I'm feeling pretty terrible and I'm hoping that if I get a blood boost then the Prednisone will just take off and I can maintain at that level.
The short term disability has been good for me as I've done NOTHING for the last few days...probably the only reason I'm still chugging along...
Til next week then...
Monday, April 11, 2005
Prednisone
It's been a while since I last posted - I'll try to do a Reader's Digest condensed version:
1. My bone marrow biopsy came back with good news - no significant changes since 2000! Hurrah!
2. My doc tested my iron/ferratin count a few weeks ago. It's raised up to 1400 - which is not great. I've been doing an infusion of Desferal after each of my transfusions for the past two years with the hopes of it keeping my iron level in check and it looks like it's not doing as well as it used to. The next step would be deferal at night - I don't want to go there.
3. So on 4/2/05, I started on 40mg/day of Prednisone. I have been reluctant to try it since my dad had gone on it when he was my age and developed all sorts of bad side effects (diabetes for one)...but I feel like this is my only choice right now and I'm hopefull that it will work.
This medicine is nasty stuff so I'm doing the following to counter the side effects:
a)Weight Watchers - so far I've lost 5.4 lbs! Not that I'm any less hungry while doing weight watchers - but as I'm keeping track of my points - I know how much I can eat. If I'm hungry after my points are gone then I just have to stop eating. Easier said than done - but I'm doing it!
b)Low carb/low sugar diet - this med elevates your blood sugar and can cause diabetes. So I'm eating a lower carb diet (not no-carb - that's not healthy) and I'm keeping away from desserts with one or two exceptions. If I need something sweet then I'm turning to the sugar-free jello and sugar-free fudgesicles.
c)Bananas - to keep my potassium levels up.
d)No caffeine! Prednisone makes your bones weak and caffeine doesn't help. So in addition to consuming a lot of calcium (including Viactiv) I'm off caffeine. Pretty much all I drink now is Diet 7up, Water and Sugar Free Kool Aid.
e)Antidepressants - there is also the crazy mood swing side effect - so I'm taking Zoloft. I've been taking it for a while now (pre-prednisone) but my doc is on alert that we may have to increase the dose. So far so good.
f)Aciphex - acid reducer...pred causes stomach upset/heartburn - so I'm taking this drug. No huge problems yet.
g)WATER and lots of it. For the salt retention and to avoid the water weight gain.
h)REST - My doc and I decided that it would be a good thing to take it easy while we are waiting for the med to work...so I'm on disability for the next few weeks. I'm having some sucky side effects like just being really tired and getting worn out easy..so the rest is a good thing.
My next blood count is on Wednesday - and I'll update then. Two weeks ago, I was at an 8.9...so we'll see...
1. My bone marrow biopsy came back with good news - no significant changes since 2000! Hurrah!
2. My doc tested my iron/ferratin count a few weeks ago. It's raised up to 1400 - which is not great. I've been doing an infusion of Desferal after each of my transfusions for the past two years with the hopes of it keeping my iron level in check and it looks like it's not doing as well as it used to. The next step would be deferal at night - I don't want to go there.
3. So on 4/2/05, I started on 40mg/day of Prednisone. I have been reluctant to try it since my dad had gone on it when he was my age and developed all sorts of bad side effects (diabetes for one)...but I feel like this is my only choice right now and I'm hopefull that it will work.
This medicine is nasty stuff so I'm doing the following to counter the side effects:
a)Weight Watchers - so far I've lost 5.4 lbs! Not that I'm any less hungry while doing weight watchers - but as I'm keeping track of my points - I know how much I can eat. If I'm hungry after my points are gone then I just have to stop eating. Easier said than done - but I'm doing it!
b)Low carb/low sugar diet - this med elevates your blood sugar and can cause diabetes. So I'm eating a lower carb diet (not no-carb - that's not healthy) and I'm keeping away from desserts with one or two exceptions. If I need something sweet then I'm turning to the sugar-free jello and sugar-free fudgesicles.
c)Bananas - to keep my potassium levels up.
d)No caffeine! Prednisone makes your bones weak and caffeine doesn't help. So in addition to consuming a lot of calcium (including Viactiv) I'm off caffeine. Pretty much all I drink now is Diet 7up, Water and Sugar Free Kool Aid.
e)Antidepressants - there is also the crazy mood swing side effect - so I'm taking Zoloft. I've been taking it for a while now (pre-prednisone) but my doc is on alert that we may have to increase the dose. So far so good.
f)Aciphex - acid reducer...pred causes stomach upset/heartburn - so I'm taking this drug. No huge problems yet.
g)WATER and lots of it. For the salt retention and to avoid the water weight gain.
h)REST - My doc and I decided that it would be a good thing to take it easy while we are waiting for the med to work...so I'm on disability for the next few weeks. I'm having some sucky side effects like just being really tired and getting worn out easy..so the rest is a good thing.
My next blood count is on Wednesday - and I'll update then. Two weeks ago, I was at an 8.9...so we'll see...
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