2 Transfusions since I last blogged

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

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

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

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...

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...

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

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...

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

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!

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...

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

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...

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...

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!