Living with Diamond Blackfan Anemia

time for my once a year update

2008-08-01T10:45:00.000-07:00

I was posting to another blog and realized that I hadn´t updated here in a year.

Sadly not much has changed.

I´m still doing desferal 5x a week for 12 hours at a time. I haven´t been very good about it but I´ve started doing it regularly since June. My doctor yelled. :( I also did realize that I´m slowly killing myself and I needed to take better care of myself.

I´m still getting transfused every 2-3 weeks. I´m being more insistent with my doctors and not letting them take my hemoglobin levels so low that I can´t work.

My diabetes is a mess. My blood sugars are related to my hemoglobin so nothing is ever stable. If I could get rid of one of my things...it would be the diabetes.

I´ll try and post more...promise!

Desferal, Smesferal

2007-08-07T22:36:00.000-07:00

Again with the every six months posting!

I've been keeping busy. Feeling like crap-o-la, not able to get my blood sugars under control. Every time I get the blood sugar thing licked, my blood count crashes and throws everything off.

Just came out of a three week haze at work. Totally. Stressed. Which did me no good. I fell into bad habits food and sleep wise and, luckily, I learned that I can't do that again. I don't handle extreme stress as well as I did when I was younger. As a result, I've decided to go back to grad school part time next quarter. I feel like a slacker but an MBA isn't worth much in the grave.

DBA wise, I'm doing okay. I'm still on every three week transfusions. Managed to go 4 weeks about a month ago and, lets just say, I didn't feel well that fourth week. My lips seem to be a lovely shade of lavendar and I have a killer headache so I will probably be going in for blood this Friday.

I've been on at-home Desferal since June. I (am supposed to)hook up to the pump for 12 hours a night/5x a week. The pump fits in my pocket, but they must think I'm a giant as they have at least 5 feet of tubing between the needle and the pump. I'm inserting the needle myself (MiniMed Sof-set #42) and it seems to be going well. I hook up at 5:00pm at work and unhook when I wake up at 5:00am. My only complaint is that the desferal seems to raise my body temperature and considering it is in the high 90s here in So Cal...I don't need medication that makes me warmer!

Getting my CBC tomorrow and hopefully they will put in a type & cross while I'm there so I don't have to go back tomorrow afternoon.

desferal transfusion

Big Fat Update...

2007-03-23T15:56:00.000-07:00

Wow. I've just realized that I haven't updated since last September. Shame on me!!! Well, I am still around and doing okay.

I've had quite a few transfusions - all around 3 weeks apart and getting 3 units each time plus the standard 2 hours of desferal. They give me a second dose of Benedryl prior to the third unit and I haven't been having any more allergic reactions. I did have a panic attack two transfusions ago - but we think that was stress related.

I just finished my winter quarter in grad school and I am taking a leave of absence until this Fall (September). My diabetes is getting out of hand with the transfusions and stress and I need to lose some more weight. Can't do all this plus school. I've also decided to only take one class a quarter instead of two.

My husband and I have also decided to start the adoption process this coming May. We don't want to chance having bio kids with DBA and we don't want to make me worse. We are going to adopt domestically and we want a sibling group of two girls under 8. Seems reasonable enough. I know that there are a lot of DBAers that may be interested in how it goes for us - so I will keep this blog updated and we will also have an adoption blog when the time is right.

Exjade seems to be working. My ferratin started at 7500 last year and is now down to the low 4000's. However, this isn't low enough so we may be looking at doing Desferal on top of the Exjade. I'm not sure how this is going to work yet as Desferal is a 12 hour a night infusion and there are at least 4 nights a week I'm not even home 12 hours due to my work commute and school. We may have to figure that out. I'm not taking my Exjade as I should. On the days I work from home - I get up late and need to take my insulin and eat right away - so no exjade. I'm getting really bad about it. Plus I still get massive stomach cramps and need to be near a restroom at all times - so it's not very convenient to take.

I think that is all for an update. Will try to post more frequently from now on!

Exjade Diamond Blackfan Anemia

Down, Down, Down....

2006-09-13T21:32:00.000-07:00

Had my weekly bloodletting today. I've been feeling rather ick this week - tired, worn out, heartbeat pounding in my head - so I knew that it was going to be time for a refill. Plus I'm going to Disneyland with the ENTIRE family (me, DH, mom, brother, sis-in-law and niece Lilli-pad)on Sunday and I will definitely need to be charged up for that.

After last time - I'm hesitant. I'm really not in the mood for another allergic reaction and I told the nurse this morning that I only wanted two units and not three.

OVERRULED.

I'm at a 7.5 hemoglobin and I'm getting three units of the red stuff. I'm unhappy about this and now I'm nervous that my tongue will swell again causing my day to extend to an ultra sucky 13 hours from the usually sucky 10 hours.

Or I could count my blessings that any treatment is available to me and just stop whining. At least I have a day of watching movies!!!

transfusion

One Unit, Two Unit, Three Unit, Floor

2006-08-30T10:25:00.000-07:00

Click POWER VIEW

I'm still alive...

2006-07-17T23:05:00.000-07:00

So sorry that I forgot to post my hemoglobin results after that last post - 4 MONTHS AGO!!!

I'm still alive...tired but here. I'm into my second quarter of Grad School and it is keeping me so busy. It is also beating the crap out of my hemoglobin. I've been on every two week transfusions for the last few months. I'm getting pretty tired of it.

I don't think the Exjade is working. My ferritin was 5500 in March and 7500 in June. Uhmm, isn't it supposed to be going down??? I might have to go on sub-q desferal soon.

Another side effect of Prednisone came up a month ago...Type 2 Diabetes!!! Whooo! No, seriously. I'm checking my blood 3x/day and doing insulin shots 2x/day. Apparently I can't take the pills because of the iron overload (which may also be a contributor to the Diabetes). Needless to say - my body is pretty tired.

Haven't seen my doc in about 6 weeks. Probably will see him before the end of summer...until then I keep on keeping on.

xoxo

Exjade and more transfusions

2006-03-25T23:09:00.000-08:00

Things have sort of sucked at the house of Pam. I needed a transfusion on the 10th of March and it looks like I might need one again this coming week. I'm getting the low hemoglobin headache.

I'm also moving and start grad school on Monday night... I'm getting frustrated that the time between xfusions is so short now. So is my doc - but I can't wrap my head around a bone marrow transplant just yet.

I'm thinking about getting a port put in. My last transfusion involved 3 nurses and 5 needle pokes to get the IV set. I've called my doc about it but he didn't mention it...will have to try again. I swear - the nurses must draw straws to see who gets to try me first.

I also started Exjade last Monday. The taste (dissolved in Orange Juice) wasn't terrible but seriously, 30 MINUTES to dissolve this stuff? I have to get up 1/2 hour early just to make my "Exjade Punch". I hope it helps. As much as I'm complaining - it's still better than 12 hours/night Desferal.

Will update on Wednesday with a hemaglobin report!

Outta Here Prednisone!

2006-01-22T13:10:00.000-08:00

Hurrah!

Last October, I had some tests done and the prednisone was elevating my blood sugar. So, as of 11/13/05 - I was off of it. The effects are finally starting to subside. I'm no longer starving and my face is not as puffy. I was seriously looking like Jabba the hut for a while. I'm also able to start losing weight.

The downside is that I'm having transfusions every 2-3 weeks. Hopefully that will work itself out as well!

Not thinking about DBA for a minute

2005-08-30T20:31:00.000-07:00

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

9.5 last week

2005-08-29T12:20:00.000-07:00

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

How to get a new job with DBA

2005-08-12T16:01:00.000-07:00

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

If it's Friday, it must be a transfusion

2005-08-07T18:34:00.000-07:00

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!

A month later and lots happening...

2005-08-02T21:40:00.000-07:00

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!

Update: 7/4/2005

2005-07-04T19:55:00.000-07:00

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!!!

My latest counts

2005-06-25T21:15:00.000-07:00

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!

Feeling the heat...

2005-06-22T19:17:00.000-07:00

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.

Diamond Blackfan Yahoo Group

2005-06-22T19:13:00.000-07:00

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.

Hey Fteam? Who are you?

2005-06-19T10:09:00.000-07:00

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?

2005-06-19T10:08:00.000-07:00

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!

Feel icky...

2005-06-08T10:57:00.000-07:00

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.

Test results

2005-06-06T12:51:00.000-07:00

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.

Prednisone Update

2005-05-25T20:54:00.000-07:00

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

2.5 weeks on Prednisone

2005-04-20T20:57:00.000-07:00

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...

Transfusion on Friday

2005-04-13T22:04:00.000-07:00

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...

Prednisone

2005-04-11T21:42:00.000-07:00

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...

Pranayama

2005-02-26T11:09:00.000-08:00

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!

Bone Marrow Biopsy & Aspiration

2005-02-26T11:05:00.000-08:00

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!

And Yet Another!

2005-02-09T21:44:00.000-08:00

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...

And another since then!

2005-01-24T13:35:00.000-08:00

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...

2 Transfusions since I last blogged

2004-12-17T18:47:00.000-08:00

Well...a week after my last post - my count had dropped to 7.6. So that Friday (11/19) I had a transfusion - 2 units plus 2000mg of desferal in a sloooow IV drip post blood. There were good things and bad things about it:

Bad:
Took SIX tries and three nurses to find a vein

Good:
Found a FANTASTIC spot that didn't hurt at all going in and was able to transfuse at a higher rate therefore getting me out of there early.

So the next week I spiked back up to a 10.1.

Now here I am - 4 weeks later to the day and I've just had another 2 units + desferal. My count has been going 1 gram a week - which for me is incredibly fast. I have gained a bit o' weight in the last few months and now I'm desperately trying to lose it in hopes that my count will level off. It seems like my count went to hell around the same time I gained the weight. UGH.

Today went great though - we found that spot from last time and the IV went in first time! I transfused at 150 and was out of there at 2:30pm! Usually I am there from 8am to 5pm...with this great new spot - I'm so happy!

In the last few weeks I've been prescribed Zoloft to deal with my anxiety...that has helped a great deal and doesn't seem to be affecting my count in a negative way. It's actually helping my blood pressure.

Anyhoo - the xfusion came just in time for me to go to my husband's families homes in Texas on the 26th. Happy Holidays!

Having a sinking feeling

2004-11-13T11:21:00.000-08:00

Well, I went in this past week and my count had dropped from 9.1 to 7.6! I didn't feel like crap so we thought it must have been a mistake...well..not...

I went back in the next day and my count was at 7.8.

I opted not to have a xfusion - really didn't feel all that bad. But today I feel terrible.

So I will probably go in next week and get filled up for the holiday week (which I have off!)

Off subject:
if you are reading this please say a little prayer for Jen and Jamaal who are having a bad time right now (medically speaking)

Irritable Patients

2004-10-27T13:29:00.000-07:00

Got my blood test today - haven't found out the count (or last weeks for that matter) but I'm sure it's fine.

The waiting area for the lab was packed full - I was 8th down the list of people not yet helped - so I took a seat and stared into space. A man in the room, late 30s, self important - was being so pissy. Kept looking at his watch then sighing LOUD - then he'd stand up and look at the sign in sheet - then sigh again - then mutter LOUDLY "this is ridiculous"...at one point he yelled out "I have TESTS you know!!!"

Now, I'm sorry...it's ALWAYS busy waiting for your lab draw...They tell people to get to the lab 1 hour before your appointment and I've never waited that long. So Mr. Impatience - get there earlier next time!

They called his name and then a second later called my name. His lab tech couldn't get blood out of him so I had to wait while my lab tech stuck him... The whole time he's grumbling about how long it's taking. Well...I'm sure he would rather them not rush...

Just irritates me...most of the people at the hospital are so nice and just know that waiting is part of the deal...every once in a while you get a snarky patient - and they just look like asses...

No one will jump on your bandwagon!!!

On another amusing insurance note: I haven't been billed by the hospital pretty much all year. I owe them at least $300. My insurance pays 90% of the negotiated amount and I pay the other 10%...so it works like this:

Hospital bills out $100 for a lab test
Insurance negotiates a price of $30 for lab test
Insurance pays $27 (90% of $30) to hospital
I get billed $3.00 for lab test from hospital.

My insurance has worked this way for 2 years and I'm still not getting billed correctly. The hospital is charging me 10% of the billed amount. So that would be $10 for a lab test instead of the $3. This wouldn't be a huge deal except I get these tests every week.
52 x$10 = $520
52 x $3 = $156

bottom line - definitely keep all of your correspondence from your insurance company.

Transfusion Today - I had a mean nurse

2004-10-08T21:55:00.000-07:00

Just had my 2 unit fillup today. So the countdown clock starts again...This time I made it 8 weeks between xfusions... I'm hopefull that I can go longer this time and maybe see some success with the Cyclosporin! I don't care if I get into normal ranges but if I can hang out in the 9s for the next few years - I'll take it.

Had a terrible experience today - totally reinforces that you have to be your own advocate. My usual nurse was gone and I got stuck with a fill in from the inpatient side. She didn't let me pick my own seat and stuck me and my mom in the middle of this really congested side of the hospital because it was more convenient for her. So after a few minutes...I just got up and told her that I was taking a chair on the opposite side where we had more space. She got pissy but relented (not like I was going to change my mind anyway). Then I explained to her that most nurses couldn't stick me - she poked around for a while and then went to get another nurse that I knew could do it. While Nurse 2 was poking around, Nurse 1 (now known as mean nurse) kept coming by and saying "are you done yet?" and getting in my face like it was my fault! Nurse two was about to stick me when I got hit with a panic/anxiety attack and started hyperventilating...so nurse two left to give me a minute and mean nurse came around kind of chastizing me and started poking aroundon my arm again..I'm still in a bad state - obviously not ready - when she slaps a tourniquet on my arm and says "I'm going to stick you here NOW"..I said "No I'm not ready" (politely)...then she grabs the needle like, I dare you to stop me, and I said again "NO!"...so she grabbed my arm and starts and I yank my arm away and said "YOU ARE NOT GOING TO STICK ME"... So she stomped off. Luckily Nurse 3 (who I've had before) saw this and told both nurses that she was taking over. She calmed me down and got me the first try. Mean Nurse only came over once more to tell Nurse 3 that I wouldn't let her stick me. If I see her again - I'm steering clear.

Later on , Mean Nurse had taken an IV out of the guy sitting near me and told him to just keep pressing on the cotton. He asked for a pressure bandage and she told him that he didn't need one! He finally just insisted on it. I'm sorry - you don't need a pressure bandage??? She is obviously insane.

Anyhoo - I'm sure you parents already do this - but if you see your child getting upset with a nurse or any other medical staff,...insist on
A) taking a break for a few minutes and/or B)changing the staff member. The whole process is upsetting anyway - you don't need to feel attacked.

I'm still pissed about it. I haven't decided whether to complain to the nurse manager or not. Bottom line is - if I see her coming towards me - I will refuse to deal with her.

Hope everyone else had a good day! I'm just glad to be home...

8.3 again...

2004-10-07T09:33:00.000-07:00

For the last three weeks I've been fluctuating: 8.3 to 8.6 to 8.3 (which is where I was yesterday).

I actually saw my doctor yesterday...I see him maybe once a year for an exam...otherwise we just do the blood tests. Anyhoo all of my organs were in the right place and not enlarged. He also drew 6 VIALS of blood for tests (hello, do you remember I'm ANEMIC!!!)

Two things:
1. I'm going in for a transfusion tomorrow. I'm a little high to be transfused but I'm on vacation out of state next week and we both felt a lot more comfortable filling me up a bit.

2. When my count plateaus again in the 8's - I'm going to start a trial of Cyclosporine. 300mg/twice a day for 6 weeks. Maybe it will help... I'm interested in trying something.

So that's all the news for now!

8.3...

2004-09-27T13:17:00.000-07:00

That's what I was as of last Wednesday. I feel like total crap.

It doesn't help that I'm stressed to the max and have had two straight weeks of non-relaxing days. Last weekend we had visitors (for a week : weds-weds) and even though they were great - we were GOING all weekend. Just as they go home- DH's car breaks down and we have to spend this entire past weekend shopping for a new car. (we did sneak in a USC/Stanford game and a quick trip to Disneyland). The car shopping saga continues and I'm hoping that this weekend will be event free.

I'm having pretty intense headaches and major fatigue. Just want to go home. Don't even get me started about stress at work...ugh...

Really Really down this week

2004-09-16T09:32:00.000-07:00

Hi folks...

Well my blood count plummetted to an 8.1 this week. I think it had a lot to do with how worn out I got from the USC v Colorado St game. Although I feel bad now...I had a really good time!

This week we have some friends staying with us which includes a trip to disneyland and the reagan library. Going to have to remember to take it very easy.

Cheers...

Too much I can't do...

2004-09-10T13:24:00.000-07:00

I'm bummed out today. Matt & I are having friends over next Wednesday for a week (from Colorado) and they sent us the list of things they want to do.

for example:
Beach - can't do it, I can't physically stand being in the sun
Magic Mountain - Can't do it, blood related heart issues
Universal Studios - same problem

We are doing Disneyland/Calif Adventures because I know that I will be able to do some stuff. We are also going to the Reagan Library - can take that slow.

But for most of the things - either I lack the stamina to do them (wouldn't want to make them come back early) or I have heart problems and can't do them anyway.

SUCKS!!

There are so many things I used to be able to do and now can't - I feel like an old lady telling people "Yes, skiing would be nice, but I don't have the stamina for it".

UGH!

I should be grateful - the other day at Disney I saw a little girl in a wheelchair who probably couldn't go on anything...I guess we all have our crosses to bear.

still blows...

9.9

2004-09-08T16:39:00.000-07:00

Nurse Gloria just called and I'm up from a 9.2 to a 9.9 - effectively pushing me out of "getting close to transfusion" range!

just had to share...

I am NOT a pincushion!

2004-09-08T15:29:00.000-07:00

Don't have my count yet from this morning but I do have the following:
3 needle holes
2 nice rashes in the shape of the tape they used on my bandage

Today was crazy in the phlebotomy lab. All the Monday patients were there for rescheduled appointments PLUS they started a clinical trial so all those patients were there when I went. So I waited 30 minutes just to get a chair.

Apparently there is no blood running through my right arm. Or at least in the two places they tried to stick me.

There was some blood running through my left arm but just enough to drip, drop by drop, into the vial. She could only take a 1/2 vial for my CBC - it was taking that long.

ergh...

Down this week...

2004-09-02T21:35:00.000-07:00

My nurse called and I'm down t 9.2...ergh...

Apparently my doctor is on vacation and wanted to make sure I'm doing okay. I feel like I am. I'm back on Weight Watchers and usually the decrease in fat and calories hits me for a few weeks but then I go down a few pounds and my count levels off... So for a few weeks of suck...I can get a few months of being transfusion free.

I also told her that my jury duty medical request was denied... So they are going to write me a note telling what I have and that I need constant medical attention. Hopefully the judge will excuse me.

I started doing Tai Chi this week - it's really helped with my tachycardia - I don't feel my heart beat thumping in my head anymore...can't hurt with stress either!

til next week

9.8 this week

2004-08-26T18:17:00.000-07:00

Got my CBC results in and I'm at a 9.8. I'm feeling pretty good except I'm having a serious issue with headaches...

I also had to take issue with the LA Superior Court system today - they denied my jury duty request. Ugh! When I felt better (in remission) I did my jury duty without complaint...and now that I've got a reason to not go - they get pissy. So I have to get a doctor's note saying that I have to go in for weekly blood tests and possible xfusions and I can't serve.

I know people are dealing with far worse things than jury duty - but for me, this is just really irritating..

2 units in and I'm feeling good...

2004-08-12T21:33:00.000-07:00

I spent all day at the day hospital at Norris today - got there around 8am and left just after 4pm. That is a quick day for me.

My veins suck and it took two tries, by my nurse Mindy, in my left arm to put the IV in....with no luck. I asked* for a different nurse and she,Erlinda, was able to get it set into my right forearm. That worked really well - it was in deep enough that I had little pain and was in such a position that I could move around easily. An added bonus was that I could have the blood transfused at a rate of 150 instead of my usual 125. After two units, I had two hours of a Desferal infusion. This is to get rid of extra iron in my system from the transfused blood.

*I've just recently starting being picky about who my nurse is for the day I'm there. I used to just get whomever (they are all pretty good) but there were only a few that could actually set my IV. So now when I check in - I ask where my favorite nurse, Mindy, will be that day and have myself assigned to her watch. Makes the whole process a lot easier. Although if she's not there - there are a lot of great nurses there to pick from.

The IV inserts are so traumatic for me that this time I added a sub-lingual Ativan to my pre-meds. It worked like a dandy. Between that and the Benedryl, I slept for all but the last hour of the whole day (ok, I woke up for lunch).

I feel pretty good right now. It takes about 24 hours to get back to normal so tomorrow night I should be feeling great. My only after effect is that I must have been holding my head wierd all week with my headache because I have a stiff neck.

Will check in next Wednesday (at least) with my latest blood count.

A Little About Me...

2004-08-11T19:36:00.000-07:00

My name is Pam. I'm 32 years old and I live in Southern California. I was diagnosed with DBA when I was 6 months old. My dad was diagnosed when he was 32 years old and my mom was 2 months pregnant with me. They were told that I would in no way get this disease. Well they were wrong!

I had a few transfusions (maybe 5 total) from age 6 months to 3 years. I was put on a short course of Prednisone at about 1.5 years old and that seemed to do the trick. At age 9, after multiple unnecessary bone marrow biopsies and CBCs - the folks at the City of Hope National Medical Center declared me " cured". Unfortunately I was just in remission.

I came out of remission in the summer of 1999. One day after work, I was walking to my car and had severe chest pain. My parents both have major heart problems and so the next day I got a full work up. They discovered that my Hemoglobin was under 11 and referred me to Dr. Feinstein at the USC Norris Cancer Center here in Los Angeles. I've been a patient there since.

I've had less than 15 transfusions in the last 5 years. My most recent one was in the middle of June with a Hgb of 8.6. I'm getting another one tomorrow as my HgB is now 7.0 and I'm very symptomatic (with chest pain, extremity fatigue and major headache).

I lead a full life - I'm married and work full time. I attend classes at the local Junior College when I have the time. I have a Bachelor's Degree from USC (Fight on Trojans!) and I was very active during my time in school. We think that I came out of remission due to an incredibly stressfull job in 1998 - it just took a real toll on me physically and mentally.

My father passed away in February of 2001 after dealing with DBA, Diabetes and other heart problems.

I hope this blog is informative to other folks dealing with this - feel free to drop me an email if you have any questions!