Good morning to all ! How is evey one feeling?

[Mister beagle bailey]

Good morning, after the crazy day we had yesterday let's get on with what's important getting to SVR.

I have a Dr. appointment today and I guess he will check my blood to see how my Thalassemia is holding up to the tx.  I hope it does not start dropping to soon, I still have 23 weeks to go.  I am lucky that I have Geno 2B, with this type of anemia I don't know how well I'll do.

To all my friends out there, have a great day!

     BB

[Mister beagle bailey]

That is great to have people at work willing to help you out if you need it, and you might be one of the lucky ones that sail throught this.

Thanks, I hope the CBC stays good and I don't have a big drop.  The Dr. today decided to do the blood test next Thurs.  But so far I'm doing fine.

BB

[Mister beagle bailey]

Hi,

I'm on 800 riba--120 mg  of peg

So far so go , just came back from the dr. and he will take blood next Thurs.

Yes, Barb told me she found that for you and that will be if yous get to Miami.  The house sale is going good, there is a couple who came this afternoon and they took all the info and Barb said they came back tonight.  So it looks good, I'm flying home Jan 28 for 10 days, then I have to get back to NY for the drs.  While I'm home we are going down south to look for a house.  Who know's we might be down there when yous are. If the house sells now we could be out in 4 to 6 weeks.

Bobby, if I remember right you are not suppose to be in the sun.  I think it was in the papers they gave me.  But you can still enjoy the weather.

Let me know how the procrit works out.

BB

[strator]

Hey Mrs. O -really sorry to hear your feeling down. Wish you were havin a better time with this. And hope you get the help with the anemia. That's what counts. But here's somtehin got me up through some tough days. Bear with me it'll sound irrelavant and egotistical, but it's all I got.

1969 As a 13yro entering high school I had wanted to go out for football because I'd played Pop Warner as a lineman. All summer I listened to everyone else though, I was too small for HS ball-4'10" and 96 lbs. So I trained to run cross country instead. But the day football tryouts started my best friend asked me to accompany him, just because that's how we were with each other. I went, ignored the laughter, signed up for halfback tryouts...made it to the 3rd cut. The coaches said some guys'll quit now that real contact starts so anybody that hung around might get a uniform. much to their dismay I did. THIS was where I wanted to be.(They had asked me not to even try out-I might get killed). Finally the day came when I was handed a full pad uniform. I was on the Junior varsity.
First day I'm in pads (2 tshirts in my helmet to hold it on, 3 yards of tape holding the knee pads at my knees instead of ankles, numbers 1/2 tucked in my pants. We are doing a 5 man drill where 2 defensive ends rush in to dump the quarterback, the running backs are suppose to stop him. This one 180lb. DE is running over everybody. Four guys had tried numerous times, each time he slams the QB down. The JV coach in frustration says" Hey isn't anybody here man enough to stop Tommy.' I thought he expected an answer so i raise my hand. EVERYBODY laughs. Cept my best friend, cause he's a nice guy. Coach looks at me smilin and says, 'Okay kid, line up."
We get in our stances, whistle blows. He charges, I charge right at him. BAM! He flattens me,exploded into me, levitated me. Slams the QB into the earth. Laughter explodes, cept my BF. I'm on the ground, my head is ringing, my chest feels gone, I can't breathe...and in those split seconds I thought how could I be this stupid, I can't play with these guys, everybody's right, I'm outta my league. I'm an idiot!

But then I heard the most beautiful words I've ever heard. They've been with me since. The JV Coach BARKS:
"QUIET. Okay Don, c'mon and get up and give it another shot."
Not, 'To the back of the line. Not 'next!.' Not you too small.or 'are you okay?'
He just treated me like any other guy. He was giving me a fair chance, same as everyone. No different. I'm on my feet smiling.

Into our stances, whistle blows. He charges, just as hard. I charge harder and lower. I go headfirst right above his knees. BAM! My head is ringing-but the field is silent. I turn and look, Tommy is flat on his back. Gasping for  air with the wind knocked out of him. Had flipped totally over in mid air. Disbelief on his face. The quarterback was really smiling.
The coach barks. 'Now, we're playin football! Tommy cmon get up give it another shot."
We went at each other 4 more times, I stopped him once, barely.
But that night in the locker room, nobody tried to stuff me in a locker, no one said much to me at all. They'd look and shake their heads. Whatever, I was never a star, only got in a handful of varsity games. Backup to the leagues leading rusher. But everybody knew I was there to play. Someone had given me a shot, and I gave myself a shot.

Mrs O this tx isn't kids on a ball field, this is serious and dr stuff. But when I've hit bottoms throughout my life, just when I think I can't go any further. I hear that coach, "Cmon kid..."
Be Well,
Forgive the babblin,
Don

[sindog]

I don't know if I can say anything that hasn't already been said but here goes. You said you went from 13.5 10. I'm supposing that is your Hemoglobin. According to my doc 10 or less is time procrit. Same for WBC less than 2, Hematocrit less than 30. As goof said the initial drop is a killer. I had full point drops and seriously considered going to the ER. You also may of caught some kind of bug that generally you wouldn't have noticed. I found out that any viral illness is intensified at least by 3 times. I had a very bad 10 days over xmas and felt like you. I really didn't want to go on. I know you've heard over and over drink water. For comparison, I drink about 1 1/2 go 2 gallons a day. Gaterade makes a sports drink in a blue bottle that has about 30 cal for 20 ounces, also good. Also, force yourself to get up a move. In the worst of my misery, I got up, went outside and forced myself to walk. Also, and this really sounds stupid, sit down and tell your body to produce red blood cells, and make it listen. The fact that your are feeling better is a great sign. And remember, when it gets tough hang tight. Of course if you do need procrit, get it fast.
Jim

[dyce]

Hi All.
Just got off work and I feel o.k.Glad to hear every1 just starting tx are doing fine! I hope if I do the tx I,ll still be able to work. I,ve talked to the people at work and their behind me if I need help.Mr B.beagle I,m praying your cbc stays stable thruout tx!
Rick

[NikoS]

you're just the sweetest thing ! thanks for you last message on previous thread...

I must say you're an inspiration if you managed tx, post tx & running a business. That's a huge mountain to climb.

Hey any advice on anit depressants post tx, I am still on them, the plan was to come off this month, but I feel like I want to keeping going until my next pcr results in March 06 ?

[MrsOckert]

Bobby - I think your supposed to stay out of the sun while on TX.  Someone correct me if I'm wrong but I'm thinking I read that on the papers that come with the drugs.

I don't think you can lay on the beach while on TX.  Sorry!  It might have to be your couch after all.

[GoofyDad]

Little known fact, but it's an evolutionary thing. We're built to be chasing mastadons through the mountains, not scraping baby poo off banana leaves and painting pretty pictures on cave walls. Only make sense that our bodies should tolerate adversity better. OK that was no fair. Sorry. ;-)

Hell... I dunno that men tolerate it better. Do they? Maybe menstrual cycles come in to play? No idea actually.

Turns out my Nurse dude hadn't gotten the labs from when I was running in the 7's. He sounded alarmed yesterday. Then he says well, as long as your not having symptoms. No symptoms? Well at least there's no additional fatigue. No fatigue? HELLLLOOOOOOO? You try walking around in this size seven suit for a day pal - then we'll talk about fatigue......LOL

[bobbyullc]

hey, sounds like you are sailing through tx so far. how much riba and peg are you on. i heard 2b's take 800 of riba and lower peg?
my hgb came back today and it went back up to 13.8 from 13.2 so i am relieved.barb sent me a site to get free procrit if i need it and that is a relief to think i may not have to cough up $2000 a month myself. me and nancy have been talkin of maybe spending a month in miami soon to get out of the cold and get a tan. i can suffer on the beach as well as on the couch. how is the house sale going?
bobby

[friole]

Definitely sounds like anemia.  I agree with what Goof said.  The initial drop is an absolute killer.  Probably your body has never had that little oxygen in the blood before.  You do adjust to it though, in time.  I got my hemotologist to rx procrit when I hit 10.8 and am extremely grateful that she did.  I hate to see you have to wait for that next lab and then a week after that to get on PRocrit.  I agree you need to call the nurse and see what their thoughts are.  Bet they never had hgb in the 10's.

frijole

[2irish]

hey, goof, how you doing today?  i was wondering what your take is on anemia in women vs men?  what i mean is, it seems that you handle it better than i ever did with a low hgb.  it seems, that women have a harder time, maybe the strength, muscle mass?  i don't like this anemia bus...i want to go to the SVR bus..i'll even sit in the back.

[GoofyDad]

Having been on the enemia train for a while - here are my observations, FWIW:  

The initial drop is killer - not that first gram or so, but the real drop down into the low teens. That improved for me in a week or two.

Subsequent drops would hit, then I'd adjust reasonably quickly - in a few days or so. I haven't gotten to where I feel good, nor can I think terribly straight, but I can slog through. I think you will find improvement in how you feel, regardless of the procrit situation.

I use caffein - and it helps. Also, I use a sleeping pill to get me to sleep earlier than I normally would, that helps me feel better for morning. Not a good way to manage it, but it works for me, coffee, coffee, coffee, lights out - sleeping pill.

Call that nurse - see what they're thinking!

[2irish]

once they give you the procrit it will make a world of difference to you.  i went from 13 to 9 almost overnight, so i understand.  it didn't quite take 2 weeks for me to feel better after starting the procrit.  take it easy until they give you something.  save your energy.  what week are you on?  sorry, i forgot.

[MrsOckert]

I was/am anemic this last week.  Went from 13.5 to 10 in 1 day.  Did call my dr & spoke to his nurse.  She was supposed to call me back last week.  It's been 10 days.  I'm due to have labs drawn tomorrow and my next apt is next week.  

I imagine he's waiting for these labs before he decides anything.  But it would have been nice for her to call me and let me know that instead of saying I'll call you later today and then not doing it.

It helped hearing all your comments.  Focusing on one day/week at a time is better than looking down the road.

But it is easier to do that when you're feeling better.  :)

But thank you all, I do feel even better.  And I'm not winded today walking from one side of the room to the other.

[RiverGal]

Kalio speaks great truth here:  "I would suggest trying not to think about it in terms of "35 more weeks" and rather focus on this one day, now."

What worked the best for me was looking at tx backwards...not so much on how far I had to go, but on how far I had come.  It was just too darned intimidating when I started to THINK how long I had left...it seemed to go faster when I could count the steps I had already taken.

Kalio, I can certainly relate to the dust bunnies!  I am terribly OCD (a standing joke in my family) and the house was going right to hell.  It was amazing how I could put a band-aid on that gaping wound!  Looked okay as long as nobody opened a closet or looked under the bed. I had great intentions, just not enough energy to follow it through the way I would have liked to.

Hope everyone is having a good day...

~River

[FlGuy]

There are a lot of nasty aspects to Tx. As suggested, have doc take a look at hgb and, if necessary, the drugs to treat it.  I was on borderline of low hgb and tired all the time.  As for the arguments with friends - during TX I sort of isolated myself from all but immediate family and turned down all social engagements to avoid questions, pity, comments but most of all to conserve any energy I could to stay focused on TX, family and work only.  It's your time to get better and recover.
Since you arrived at week 13 you have gone through diagnosis, fear, biopsy, getting ready to TX and the seroiusness of the whole thing.  13 of 48 means you are 27% done, plus all the other stuff behind you.  Looking back you've done most of hard stuff already. One week at a time - let the docs help with the SX's. Did you have a PCR yet?  Results?  I've been away for a few weeks and might not be up to date.

[amommy]

I'm sorry you are having a crappy many days.  I hope this is the end of it for you.  Sending hugs your way!  When was the last time you had your blood counts taken?  Please don't hesitate to call the doctor, I think they might be able to help you!  Lean on us, we will listen.

[NYgirl]

Do you have anemia? What is your hgb?

The ONLY reason that I almost quit was when I had that drop from 15 to 9 in a bit over a week. Then I fainted in the shower...couldn't get out of bed at all, was so exhausted oh my GOD I was MISERABLE.

But once they got the Epogen working in me...I recovered just fine and am so GLAD I didn't quit because it PASSED.

Has anyone explainned anything on WHY you could be feeling this bad this late? I would think there has to be SOME explanation for it that could be handled.

SO NOT FAIR!

Debby

[MrsOckert]

The absolute utter exhaustion the last week has gotten to me.  Last Tuesday taking a shower before work wore me out so bad I had to rest on the couch before I could finish getting dressed.

Still having to drag myself to work everyday and then doing nothing more than crawling into bed until the next morning.  Spending the last 4 days in bed has helped the exhaustion but it doesn't do anything for the mental part of this.  I don't want to be in bed.  I want to be able to load the dishwasher or cook dinner.

I'm still having a problem getting into arguments with my friends.  On Sat I had one friend tell me how great I looked.  Since I was feeling so crappy I said "it's not my face that's sick".

Today I am much less tired than I have been.  So I'm assuming I'm coming out of whatever thing I was in.

Valorie

[NYgirl]

What is the problems that are going on? Is there any way that you can get the doctor to help you get some relief for them?

I am going on week 16 now and finally have levelled out pretty much.  Some good days - some bad days.

I think I refer to doable more in the mental term, somedays of course are horrible and I just understand exactly what you mean.

It's not an easy thing treatment at all.  I am so sorry you are having such a rough time, I really thought at 13 you would be threw the worst of it. But the things do come and go.

As long as it's working...you keep on going no matter WHAT!

[MrsOckert]

It's my turn to be negative today.  This word doable that we use for TX is not working for me this week.

I have to admit I'm feeling better today.  But the last 10 days have been the worst of TX so far.  If I had it to do over again I would not start TX.  

I also have to say Congrats to all of you who have TX'd two three or more times.  I will not.  This is it for me.  I find out on the 16th if it's working.  Obviously if it is I will continue on, but if not I'll not go thru this again.

I guess it's doable on the good days and it's not on the bad days.

Sorry for being a gloomy gus here.  BTW it's week 13/48 and I just don't have any idea how I'm going to get thru the next 35 weeks.

[NYgirl]

I was joking because you called it a "blooB test".

I've never had one of them before.   Blood tests...every week bluck I HATE them!

[Fisheress]

I was having headaches in the morning, attributed it to sinuses.  I would take a washcloth and wet it and place in the microwave, then put it over my eyes and forehead.  Really worked.  And since I have placed a steam humidifer in my bedroom for my dry cough, the headaches are GONE!  Try it, can't hurt.....right?

  
The  Four Cats !

Four  men were bragging about how smart their cats were.  

The  first man was an Engineer,

the  second man was an Accountant,

the  third man was a Chemist,,,,,,and

the  fourth man was a Government Employee.

To  show off, the Engineer called his cat,

"T-square,  do your stuff."

T-square  pranced over to the desk, took out some

paper  and pen and promptly drew a circle, a square,

and  a triangle. Everyone agreed that was pretty  smart.

But  the Accountant said his cat could do better.

He  called his cat and said,

"Spreadsheet,  do your stuff."

Spreadsheet  went out to the kitchen and returned

with  a dozen cookies. He divided them into 4 equal  piles

of  3 cookies.............Everyone agreed that was  good.  

But  the Chemist said his cat could do better. He called  his  

cat  and said,,,,,,,,,,,,,,,,,"Measure, do your  stuff."

Measure  got up, walked to the fridge, took out a quart  of

milk,,  got a 10 ounce glass from the cupboard and poured  

exactly  8 ounces without spilling a drop into the  glass.

Everyone  agreed that was pretty good.

Then  the three men turned to the Government  Employee

and  said, "What can your cat do?"

The  Government Employee called his cat and  said,,,,,

"CoffeeBreak,,,,do  your stuff."

CoffeeBreak  jumped to his feet,,,,,,,,,,,



ate  the cookies,,,,,,,,,,,,,,,,,,,



drank  the milk,,,,,,,,,



sh*t  on the paper,,,,,,,,,,,,,,,,,,,,,,,,,,,,



screwed  the other three cats,,,,,,,,,,,,,,,,,,,,,,,,,



claimed  he injured his back while doing  so,,,,,,,,,,,,,,,



filed  a grievance report for unsafe working  conditions,,,



put  in for Workers Compensation...............and



went  home for the rest of the day on sick  leave.............

AND THAT'S WHY I WANT TO  WORK FOR THE GOVERNMENT.......
CRP  

[Mister beagle bailey]

The blood test you can get at your Dr.'s office.  Sparkie#2--you really should not have any thing with caffine, one Dr. said one cup is OK if I really need too.  I don't know why,  maybe some one ou there can shead some light on this.

BB