If you can spare some change - it looks like the citizens in the Deep South will need all the help they can get...
Salvation Army
Tuesday, August 30, 2005
Monday, August 29, 2005
9.5 last week
So I'm in my 4th week of work and 3 weeks post transfusion. My last count (8/24) was a 9.5. I didn't get called the prior two weeks so I have no idea what the 9.5 represents - stayed same, dropped alot...no idea. I wish they'd call me every week - but I know my nurse is super busy.
What I really wish is that my hospital would have a patient internet portal where I could log in and get my results. It would be so much easier...then they could flag if I needed to call the doctor. Anyway - being the data geek that I am - I would love to download my lab results and create pretty excel spreadsheets...
I need a hobby.
The other thing that is sort of DBA related is the weight gain from Prednisone. Now admittedly, I have not done the best at restricting my intake but the whole "STARVING" thing has hit me. So as of today - I'm on a quest to lose this weight. I've decided to do Slim-Fast for breakfast & lunch for two weeks. My god, does it SUCK! It's 12:24 - I've had my slim-fast and some fruit for lunch and I'm so hungry....I know it will get easier...but still. To make things worse - my office is getting new furniture and I'm typing this from our cafeteria. I'm about to gnaw off my arm. But my blood count gets better when my weight goes down so I know I have to do this. After the two weeks - I'm going to Slim-Fast for breakfast and slowly introduce healthy lunches back into my day...I'm hoping by then I will be able to make better choices.
Ergh...blood test this wednesday...I'll keep you posted.
Diamond Blackfan Anemia
Prednisone
What I really wish is that my hospital would have a patient internet portal where I could log in and get my results. It would be so much easier...then they could flag if I needed to call the doctor. Anyway - being the data geek that I am - I would love to download my lab results and create pretty excel spreadsheets...
I need a hobby.
The other thing that is sort of DBA related is the weight gain from Prednisone. Now admittedly, I have not done the best at restricting my intake but the whole "STARVING" thing has hit me. So as of today - I'm on a quest to lose this weight. I've decided to do Slim-Fast for breakfast & lunch for two weeks. My god, does it SUCK! It's 12:24 - I've had my slim-fast and some fruit for lunch and I'm so hungry....I know it will get easier...but still. To make things worse - my office is getting new furniture and I'm typing this from our cafeteria. I'm about to gnaw off my arm. But my blood count gets better when my weight goes down so I know I have to do this. After the two weeks - I'm going to Slim-Fast for breakfast and slowly introduce healthy lunches back into my day...I'm hoping by then I will be able to make better choices.
Ergh...blood test this wednesday...I'll keep you posted.
Diamond Blackfan Anemia
Prednisone
Friday, August 12, 2005
How to get a new job with DBA
I just started a new job this week. I was kind of nervous because it was the first job I had looked for after coming out of remission with DBA.
I know based on the Americans with Disabilities Act that you cannot be discriminated against for having a chronic disease and I'm the type that doesn't like to spring things on people. But at the same time I needed a job.
So I went through the interview process and, during the phone call where I was offered the job, I said "Oh by the way, I have this disease and I need to work out with you times for me to get treatment". I was told that there would be no problem.
My new manager said that this was the perfect way to handle it. So if any of you DBAers are looking for a new job and don't know when to tell your new employer - this way worked for me.
DBA
Diamond Blackfan Anemia
New Job
DBA
I know based on the Americans with Disabilities Act that you cannot be discriminated against for having a chronic disease and I'm the type that doesn't like to spring things on people. But at the same time I needed a job.
So I went through the interview process and, during the phone call where I was offered the job, I said "Oh by the way, I have this disease and I need to work out with you times for me to get treatment". I was told that there would be no problem.
My new manager said that this was the perfect way to handle it. So if any of you DBAers are looking for a new job and don't know when to tell your new employer - this way worked for me.
DBA
Diamond Blackfan Anemia
New Job
DBA
Sunday, August 07, 2005
If it's Friday, it must be a transfusion
Yep, I got filled up this past Friday. I had my counts done on Wednesday and I was an 8.3. Not low enough that I get a transfusion but I had been having the major symptoms (chest pain, shortness of breath, extremity pain, lightheadedness, etc...). So I talked my doctor into it.
I'm also starting a brand new job tomorrow and I didn't want to have to take a sick day on my first week...that would suck. So now I can go in tomorrow ready to tackle this new job. Funny enough, I'm going to work in a hospital. (IT related) You would think I was done with hospitals by now.
Transfusion went fine other than a minor inconvenience of my blood not being ready. It's usually matched and ready to go when I get there at 8am...but the orders weren't written correctly and they didn't start matching the blood until that morning. So I went home and returned to the hospital at 10am. Luckily it wasn't busy so I got my usual chair by the windows that has lots of room around it. We bought a portable DVD player earlier this year - so I watched movies all day and started reading "The DaVinci Code" (great book).
My favorite nurse is getting married in October and will be leaving the hospital in September to move to Northern California (WAAAAAAA!)... I need to find a new nurse...
The prednisone is wreaking havoc with my legs again. For the last week - my lower legs have been numb and tingly...starting today - they hurt. I have to get back to the gym and work it out. I've also gained 5lbs...have to get on top of that as well. It's all in my neck too! I feel like I have a teeny tiny face on this huge blob of a neck. ICK!
I'm also starting a brand new job tomorrow and I didn't want to have to take a sick day on my first week...that would suck. So now I can go in tomorrow ready to tackle this new job. Funny enough, I'm going to work in a hospital. (IT related) You would think I was done with hospitals by now.
Transfusion went fine other than a minor inconvenience of my blood not being ready. It's usually matched and ready to go when I get there at 8am...but the orders weren't written correctly and they didn't start matching the blood until that morning. So I went home and returned to the hospital at 10am. Luckily it wasn't busy so I got my usual chair by the windows that has lots of room around it. We bought a portable DVD player earlier this year - so I watched movies all day and started reading "The DaVinci Code" (great book).
My favorite nurse is getting married in October and will be leaving the hospital in September to move to Northern California (WAAAAAAA!)... I need to find a new nurse...
The prednisone is wreaking havoc with my legs again. For the last week - my lower legs have been numb and tingly...starting today - they hurt. I have to get back to the gym and work it out. I've also gained 5lbs...have to get on top of that as well. It's all in my neck too! I feel like I have a teeny tiny face on this huge blob of a neck. ICK!
Tuesday, August 02, 2005
A month later and lots happening...
Well, since my last happy-dandy post where my count had blasted up to a 10.0 - it's been steadily falling in the 8s. Last week I was at an 8.1 and I should have insisted on a transfusion. I guess I'm just way too optimistic that it will jump back up.
I have felt just TERRIBLE the last few days. Typical headache, chest pain, extremity pain. I called my doctor's nurse today and had her send in the paperwork for a type and cross to accompany my CBC+Retic tomorrow. I do that so I don't have to get stuck three days in a row (CBC on weds, T&C on Thurs, Xfusion on Friday). I'm hoping my count is the same or down because I REALLY want a transfusion...I just don't feel good.
On top of this, I'm having lower leg pain from the Prednisone (still on it at 40mg/day). It feels like there are rubber bands around my lower legs - just below my calves. Totally bizarre. Because of that - I have to go to the gym every day to make sure my muscles get exercised and don't disappear completely.
Luckily I like the gym. Especially since my leg exercises have resulted in the beginnings of a J-lo'esque back end.
I start a new job next week. When my new boss offered me the job - I told her about the DBA. I was pretty nervous because, since I came out of remission in 1999, I had only worked for people that knew me and about my condition. I think she was a little surprised but then told me that whatever accomodations I needed, we would work out. Hurrah! It's probably a good thing that I'll be working in a hospital. (IT related). The SUCK thing is that I'm not eligible for any benefits until December because they have a 3-month probation thing. So we are stuck paying 935.49/month for three extra months. This does not make my bank account happy.
The new job is another reason why I want a transfusion....it would be nice to go into a new job not feeling like total crap. It has been 4 months since my last xfusion - hooray for that!
Will try to post more often...until later then!
I have felt just TERRIBLE the last few days. Typical headache, chest pain, extremity pain. I called my doctor's nurse today and had her send in the paperwork for a type and cross to accompany my CBC+Retic tomorrow. I do that so I don't have to get stuck three days in a row (CBC on weds, T&C on Thurs, Xfusion on Friday). I'm hoping my count is the same or down because I REALLY want a transfusion...I just don't feel good.
On top of this, I'm having lower leg pain from the Prednisone (still on it at 40mg/day). It feels like there are rubber bands around my lower legs - just below my calves. Totally bizarre. Because of that - I have to go to the gym every day to make sure my muscles get exercised and don't disappear completely.
Luckily I like the gym. Especially since my leg exercises have resulted in the beginnings of a J-lo'esque back end.
I start a new job next week. When my new boss offered me the job - I told her about the DBA. I was pretty nervous because, since I came out of remission in 1999, I had only worked for people that knew me and about my condition. I think she was a little surprised but then told me that whatever accomodations I needed, we would work out. Hurrah! It's probably a good thing that I'll be working in a hospital. (IT related). The SUCK thing is that I'm not eligible for any benefits until December because they have a 3-month probation thing. So we are stuck paying 935.49/month for three extra months. This does not make my bank account happy.
The new job is another reason why I want a transfusion....it would be nice to go into a new job not feeling like total crap. It has been 4 months since my last xfusion - hooray for that!
Will try to post more often...until later then!
Monday, July 04, 2005
Update: 7/4/2005
Happy 4th of July everyone!
The heat here in Southern California is making me feel TERRIBLE! I was at my former place of employment last Thursday (picking up my final paycheck) and since USC Norris is in the same complex - I called my nurse to arrange for a CBC and possible transfusion last Friday. My HgB the week prior had been 8.8 and I was feeling miserable - so I thought I had gone down. I have job interviews this week and wanted to get perked up a bit for them.
So I got my cbc done: I'm at a 10.0!!!! So I feel bad because I went up 1.2 grams in a week. I'm also dehydrated. I started drinking gatorade and tons of water and I feel better.
A fun aspect of losing my job is that we have to pay COBRA now for health benefits: $935.49/month!!! At this rate - we'll be living in a box for Christmas (no, not that bad...) but still...I don't know how people afford it for more than a few months.
Next CBC is the 13th - I'm hoping it's up there!!!
The heat here in Southern California is making me feel TERRIBLE! I was at my former place of employment last Thursday (picking up my final paycheck) and since USC Norris is in the same complex - I called my nurse to arrange for a CBC and possible transfusion last Friday. My HgB the week prior had been 8.8 and I was feeling miserable - so I thought I had gone down. I have job interviews this week and wanted to get perked up a bit for them.
So I got my cbc done: I'm at a 10.0!!!! So I feel bad because I went up 1.2 grams in a week. I'm also dehydrated. I started drinking gatorade and tons of water and I feel better.
A fun aspect of losing my job is that we have to pay COBRA now for health benefits: $935.49/month!!! At this rate - we'll be living in a box for Christmas (no, not that bad...) but still...I don't know how people afford it for more than a few months.
Next CBC is the 13th - I'm hoping it's up there!!!
Saturday, June 25, 2005
My latest counts
No wonder I feel crappy. My Hgb came back as an 8.8.
I'm guessing that the stress of losing my job has something to do with it. It's been horrible the last few weeks. Even though my doctor says that stress has nothing to do with my counts- I think that is NOT TRUE! They say stress can kill you - so why can't it lower your Hgb?
One positive note - I went to the gym today and was able to walk on the treadmill for 1/2 hour with a heart rate of less than 100! For the last two weeks - I would start on the treadmill at 130 and go no lower than 120. This is with no incline and a speed of 1.3mph. So I know that not being at work is having a positive effect on my health (imagine that!).
Here's to hoping that my counts go back up! At least it's been 2.5 months since my last transfusion instead of 4 weeks.
Hurrah!
I'm guessing that the stress of losing my job has something to do with it. It's been horrible the last few weeks. Even though my doctor says that stress has nothing to do with my counts- I think that is NOT TRUE! They say stress can kill you - so why can't it lower your Hgb?
One positive note - I went to the gym today and was able to walk on the treadmill for 1/2 hour with a heart rate of less than 100! For the last two weeks - I would start on the treadmill at 130 and go no lower than 120. This is with no incline and a speed of 1.3mph. So I know that not being at work is having a positive effect on my health (imagine that!).
Here's to hoping that my counts go back up! At least it's been 2.5 months since my last transfusion instead of 4 weeks.
Hurrah!
Wednesday, June 22, 2005
Feeling the heat...
Just in time for the first day of summer - it got warm here in So Cal. At the time of this writing (7:20pm) - it is 83 degrees.
I'm having a really hard time with the warm weather. Makes me feel one step away from heat stroke. I went to the gym this afternoon and just about passed out on the treadmill. I've been feeling head-achy and faint all afternoon. I probably just over did it.
The problem is that I can't skip a day at the gym while taking the Prednisone. Causes my joints to hurt.
Also, I am totally stressed out over losing my job this week. (Laid off, not fired). I have COBRA coverage for health insurance but it is $904.48/month (AACK!) and with no one in the household having a job right now...it's going to be interesting financially. Time to break out the Top Ramen. DH has job interviews this week - we are hoping that one of them offers decent insurance so that I can still see my good doctors.
What a pain. Oh well, I have to have faith that all will end up well.
I'm having a really hard time with the warm weather. Makes me feel one step away from heat stroke. I went to the gym this afternoon and just about passed out on the treadmill. I've been feeling head-achy and faint all afternoon. I probably just over did it.
The problem is that I can't skip a day at the gym while taking the Prednisone. Causes my joints to hurt.
Also, I am totally stressed out over losing my job this week. (Laid off, not fired). I have COBRA coverage for health insurance but it is $904.48/month (AACK!) and with no one in the household having a job right now...it's going to be interesting financially. Time to break out the Top Ramen. DH has job interviews this week - we are hoping that one of them offers decent insurance so that I can still see my good doctors.
What a pain. Oh well, I have to have faith that all will end up well.
Diamond Blackfan Yahoo Group
I just want to make sure that everyone reading this that has DBA, takes care of someone with DBA or just knows someone with DBA, knows that there is a fantastic group on Yahoo! Groups dedicated to just this subject.
The link is HERE
Anyway - it's a nice place to post questions and sometimes just VENT a little! It's always nice to know that you aren't in this alone.
If anyone has questions that they want ask me (and not post a comment) - please use the email that is under my picture! I'm happy to answer questions.
The link is HERE
Anyway - it's a nice place to post questions and sometimes just VENT a little! It's always nice to know that you aren't in this alone.
If anyone has questions that they want ask me (and not post a comment) - please use the email that is under my picture! I'm happy to answer questions.
Sunday, June 19, 2005
Hey Fteam? Who are you?
I noticed that you put a link up to my little ol' blog... just wondering what you were all about...
Can't I just feel better for a second?
Well the muscle problems have subsided a bit but my joints hurt like heck! I feel like an old arthritic lady.
I have been under a serious amount of stress lately. I have been laid off from my job with the really good medical benefits. Luckily I can continue them under COBRA (for a grand total of $904.00/month!)...Pray that I get a new job soon. I'm in Health Care informatics if anyone has contacts.
So I think the stress is wearing me down. My last HgB (1.5 weeks ago) was 9.2. Doc still wants me to continue with the 40mg/day of Prednisone. Part of my problem is that I , admittedly, haven't been eating well. I've given into the stress and cravings and have gained 5lbs of my 11 back. I'm back on track today and hope that eating better will help (It usually does...)
Have another CBC this week. Here's hoping that it will be back up!
I have been under a serious amount of stress lately. I have been laid off from my job with the really good medical benefits. Luckily I can continue them under COBRA (for a grand total of $904.00/month!)...Pray that I get a new job soon. I'm in Health Care informatics if anyone has contacts.
So I think the stress is wearing me down. My last HgB (1.5 weeks ago) was 9.2. Doc still wants me to continue with the 40mg/day of Prednisone. Part of my problem is that I , admittedly, haven't been eating well. I've given into the stress and cravings and have gained 5lbs of my 11 back. I'm back on track today and hope that eating better will help (It usually does...)
Have another CBC this week. Here's hoping that it will be back up!
Wednesday, June 08, 2005
Feel icky...
Well I've gained some of the lost weight back. Mostly my own fault but I'm back on track today.
Because of my dizzyness, I skipped the gym from last Weds through this past Monday and for the last three days have felt like someone has been beating me up. I can hardly walk in the mornings. Through the day it seems to get better but I still hurt all over! Has anyone else felt this way on Prednisone?
Anyway - It's not helping my overall mood.
Haven't heard back from my CBC yet.
Because of my dizzyness, I skipped the gym from last Weds through this past Monday and for the last three days have felt like someone has been beating me up. I can hardly walk in the mornings. Through the day it seems to get better but I still hurt all over! Has anyone else felt this way on Prednisone?
Anyway - It's not helping my overall mood.
Haven't heard back from my CBC yet.
Monday, June 06, 2005
Test results
I went to my Internal Medicine doc last week and had him run a bunch of tests.
My glucose levels are fine but my BUN/Creatinine ration is off. Looks like I'm dehydrated and eating too much protein.
So I'm off the high protein diet and back on normal Weight Watchers. I also had an EKG done and that came out just fine.
No other news to report. Have another CBC this Wednesday.
My glucose levels are fine but my BUN/Creatinine ration is off. Looks like I'm dehydrated and eating too much protein.
So I'm off the high protein diet and back on normal Weight Watchers. I also had an EKG done and that came out just fine.
No other news to report. Have another CBC this Wednesday.
Wednesday, May 25, 2005
Prednisone Update
I've been meaning to post for weeks now...finally I'm actually taking the time to do it. It's a good day as well since I just saw my doctor this afternoon.
The good news is that my count is STILL at 10.1!!! It's been since April 8th that I've had my transfusion and it has held since then. I'm SO happy! My retic count is up from basically 0 to 2.4 (which is normal and means that I'm producing red blood cells). My doc is extremely happy. He was hoping for a higher blood count but we'll take what we can get.
I'm handling the steriods pretty well. I'm still on 40mg/day as he thinks it is too soon to start weaning me. I do notice that when I get a little depressed - it can spiral into MAJOR depressed very fast. So I am keeping an eye on myself. I go to my internal medicine doc next week and I'm going to have him run blood glucose, cholesterol and a liver panel on me - just to see where I am. I'm having to urinate A LOT - sign of diabetes - but I'm also drinking tons because of weight watchers.
I've also managed to lose 11lbs!!! My doc is pretty astounded.
Got some good news from Novartis this week: They have submitted "Exjade" for approval by the FDA. This is an oral chelator - used to flush excess iron out of patients that require lots of transfusions. Hopefully will be much less expensive than the subcutaneous Desferal. WhoooHoooo!
Categories: prednisone
The good news is that my count is STILL at 10.1!!! It's been since April 8th that I've had my transfusion and it has held since then. I'm SO happy! My retic count is up from basically 0 to 2.4 (which is normal and means that I'm producing red blood cells). My doc is extremely happy. He was hoping for a higher blood count but we'll take what we can get.
I'm handling the steriods pretty well. I'm still on 40mg/day as he thinks it is too soon to start weaning me. I do notice that when I get a little depressed - it can spiral into MAJOR depressed very fast. So I am keeping an eye on myself. I go to my internal medicine doc next week and I'm going to have him run blood glucose, cholesterol and a liver panel on me - just to see where I am. I'm having to urinate A LOT - sign of diabetes - but I'm also drinking tons because of weight watchers.
I've also managed to lose 11lbs!!! My doc is pretty astounded.
Got some good news from Novartis this week: They have submitted "Exjade" for approval by the FDA. This is an oral chelator - used to flush excess iron out of patients that require lots of transfusions. Hopefully will be much less expensive than the subcutaneous Desferal. WhoooHoooo!
Categories: prednisone
Wednesday, April 20, 2005
2.5 weeks on Prednisone
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...
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 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...
Saturday, February 26, 2005
Pranayama
My boss's mom brought back a DVD of a swami teaching Pranayama (yogic breathing) and swears that it will cure all ailments.
Not that I'm hoping for a miracle cure but breathing exercises sound a lot better than medicines. So I'm giving it a try.
Will keep you posted!
Not that I'm hoping for a miracle cure but breathing exercises sound a lot better than medicines. So I'm giving it a try.
Will keep you posted!
Bone Marrow Biopsy & Aspiration
It's been a while since I last posted. On the 15th of this month I had a Bone Marrow Biopsy and Aspiration. This is where a doctor sticks a big ass needle into your hip bone and a) chips off a piece of bone and b) sucks out a sample of your marrow.
Yes, it's painful.
Luckily I had a great doctor and it wasn't nearly as painful as it should have been. The initial shot of lidocaine hurt like hell but the rest of it was bearable pain. I'm very happy to be done with that.
This week my HgB is 9.3 (down from 10.5 the prior week). So we are looking at another transfusion around the 10th.
Haven't gotten the results back from the BMB - apparently he's read the slides but doesn't feel like he needs to see me. I'm taking that as a good sign!
Yes, it's painful.
Luckily I had a great doctor and it wasn't nearly as painful as it should have been. The initial shot of lidocaine hurt like hell but the rest of it was bearable pain. I'm very happy to be done with that.
This week my HgB is 9.3 (down from 10.5 the prior week). So we are looking at another transfusion around the 10th.
Haven't gotten the results back from the BMB - apparently he's read the slides but doesn't feel like he needs to see me. I'm taking that as a good sign!
Wednesday, February 09, 2005
And Yet Another!
I just had my second transfusion of the year this past Monday and it's only the 6 week of the year! UGH!
I also saw my doctor last week. He is "very worried" about me as having xfusions every three weeks is a new and not so good thing. So next Tuesday, the 15th, I'm having the dreaded test...
A Bone Marrow Biopsy
And yes, it hurts like a beyotch. I insisted on pharmaceuticals for the procedure and I will probably have to take the next day off as I won't be able to move around easily. I'm NOT happy about this.
He wants to see if my BM has gotten worse than from 4 years ago and I think he might put me on Prednisone to see if I will go back into remission.
ugh... my aching back...
I also saw my doctor last week. He is "very worried" about me as having xfusions every three weeks is a new and not so good thing. So next Tuesday, the 15th, I'm having the dreaded test...
A Bone Marrow Biopsy
And yes, it hurts like a beyotch. I insisted on pharmaceuticals for the procedure and I will probably have to take the next day off as I won't be able to move around easily. I'm NOT happy about this.
He wants to see if my BM has gotten worse than from 4 years ago and I think he might put me on Prednisone to see if I will go back into remission.
ugh... my aching back...
Monday, January 24, 2005
And another since then!
Well, I had another transfusion on 1/14. I get to see my doc on 2/2 to discuss things.
The biggest thing we will discuss is that I'm losing my job in June and might not be able to see him after that.
SUCKS!
I'm too upset to talk about it...just send good thoughts that my job is saved somehow...
The biggest thing we will discuss is that I'm losing my job in June and might not be able to see him after that.
SUCKS!
I'm too upset to talk about it...just send good thoughts that my job is saved somehow...
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