heavy breathing

[nikkihorseluvr]

I am a 1b Hepc, started at 13,000,000.  I do have almost all of the sides, and labs have ben interesting RBC went down 6 points, but doc says it isn't low enough at 12.  I still cannot make it across a room without having to stop and catch my breath.  I have come close to passing out.  All of my labs, both whit3e and red are low, but doc follows numbers only.  Perhaps this is normal.  I have received such kind words here.  Thank you all so much.  Shot 8 is next week, and I take 1200 riba daily.   Nikki

[MrsOckert]

Oh Nikki.  Yep.  Know the feeling well. I feel for you, sweetie.  My dr is the same way, took me to week 30 before I could get procrit.

The best advice I can give is to rest as much as you can.  Make sure you drink your water.  And just try to hold on.  Your body will start to adjust in a few weeks.

Has he checked your TSH levels yet?  If your thyroid is decompensating that will cause some of those problems too.

Good luck. Valorie

[Algernon]

Your symptoms sound like classic anemia.  Your hemoglobin can drop very quickly so you may be worse off than your latest numbers indicate.  I dropped 5 full points before I got Procrit (happened around week 6 for me).  The amount that you drop is almost as important as the hemoglobin level itself--in terms of the way you feel.

I ended up in the ER before I got Procrit.  It is your right to keep calling your doctor's office and telling them how severe things are and how they are getting worse.  Do not minimize your symptoms at all when you talk with them.

If you faint or feel chest pain--get someone to drive you to the ER or to your doctor's office.

Take care.  The anemia was the hardest part for me.  You won't believe how much easier TX seems when you are no longer anemic.  Also, remember that it takes a minimum of 2 weeks for the Procrit to kick in.  Best to you, Deb

[NYgirl]

We know how you feel, believe me.  I dropped 6 points from 15+ to 9 in just over a week and it destroyed my body which could really not handle the sudden reduction in oxygen.

Make sure you take it as easy as possible - it used to take me ten minutes just to make the 50 yard walk into my building here at work...but I went slowly and steadily and eventually at least did make it.

It does stink that they don't prescribe earlier = I don't really understand WHY I don't think anybody really does except the medication is EXTREMLEY EXTREMELY EXPENSIVE.  

Hang in there it's not easy but you CAN do it.

When I got down to 9 I kept fainting when I would try and stand up...be careful on stairs and driving and things - fainting is the oddest thing I've ever gone through, painful unpleasant and dangerous!

[FlGuy]

Last night my son told me about a tv piece that he saw about'fainitng goats'. I thought about you and your fainting when he described it. I had read about them before, when startled they go stiff and fall over. No real point to this other than they are usually good parents and provide excellent cashmere. I wonder if procrit...Nah, probably a baaaaaad idea.

[friole]

My that's a hefty drop in a few weeks.  I can see why you are dragging - a 6-point drop is just too much to handle.  As it probably won't get any better, perhaps you could discuss exactly when you can begin Procrit -- I really don't think you can wait until you are at 9. I suggest keeping a diary of any symptoms -- shortness of breath, dizzyness, any chest pains or palpatiations, inability to do simple tasks you normally can do, paleness.  You might google anemia to check on the symptoms. You might also call the insurance company to see if they will cover it and when.  

I started Procrit when I dipped into the 10's because I asked for it.  Otherwise they would have waited.  You have to make your case clear that your quality of life is impaired.  Ask for a referral to a hemotologist (blood specialist) if you have to.

MrsO -- I have been reading on some of the threads and it sounds like a really rough go right now.  I am sorry it is so hard right now.  It took you 30 weeks to get PRocrit?  What was the reason it took so long.  WIth 40% of hep C treaters getting anemia, I don't understand why the med profession is not on top of this.
frijole

[sunspot]

Make an appointment with a hematologist and bring your baseline blood test with you. They are more generous with the Procrit.

[Dale_Ray]

Sorry your having the problem. A number of things can cause it but with me it was just the drugs/meds. I can remember taking a shower and having to sit before I could dry off for fear of running out of air. Mine is somewhat better now but I dare not push it to much or I'll pay the penalty for a few days. I've never had to intentionally slow down or pamper myself but I am learning that to much physical activity and boom. No air and muscle aches to boot. I hope you get to feeling better soon. See that doctor. Dale

[MrsOckert]

I can really say I'm perkier today than I have been for quite awhile.

My HGB dropped from 15.5 to 11 during week 2 thru week 30.  At week 30 it was 10.5.  At that point he prescribed it for me.  It took a couple weeks for the ins to okay it.  

I wish I knew why 10 is the magic number.  I was already feeling so bad from the 11 thru tx that the .5 drop didn't make me feel any worse.

The sad part is that in talking to my ins co they would have okayed it months ago at 11.  It was the dr that wouldn't write the scrip till it hit 10.

Go figure.

[bobbyullc]

my test scores show 14 - 18 is normal but even with normal hgb and fair rbc wbc counts the severe fatigue was still there. it is a side most of us have according to my info. from peg sheets.

my sun sensitivity is getting better but not gone. i hate sitting at home when the world is at the lake. i went jogging today but looked like the guy in spy vs. spy.
my fatigue was much much better only days after the lst shot.halleluaea
thanks for asking.
bobby

[Kalio1]

Reference ranges for "normal" on my Quest results paperwork for  HGB are 11.5-15.5
I wonder why they aren't the same number ranges for normal, I didn't know "normal" range is varied even from the same lab, but maybe it is a different range for each gender?

[jmjm530]

"Normal" maybe but not correct. Many prescribe Procrit (epo) not simply based on absolute numbers but on rate of Hemoglobin (hgb) drop, i.e. a significant drop in hgb over a short period of time. On this basis, you appear to qualify for Procrit in Spades. I went on Procrit at hgb 11.4 due to close to a three-point drop over a period of a couple of weeks early-on in treatment. Can't put my finger on it now but there are directives/studies out there on this in black and white. Personally, I'd press your doctor on this issue and get a second opinion if you're unsatisfied with his answers or response. All the best.

-- Jim

[Kalio1]

Yes, I hear you. Even if you fall in the "normal" range you can still be experiencing debilitating symptoms of anemia. I have struggled with it too but never fell into the range they felt required medical intervention with support drugs. It sure puts a kink in your QOL.

Glad to hear it is slowly going away. Skin conditions can be a real pain to deal with as you know and summer makes it that much harder to cope with. I hope it resolves completely soon so your fun in the sun can continue.

Your spy vs spy reference made me laugh, got a great image of that one.

[Kalio1]

I just thought the "normal" range numbers would be the same on everyone's results but apparently they aren't, I wonder if the ranges are different depending on gender, I can't figure what other reason there would be for them to vary like that.

[mikesimon]

As you sated above, normal for men and women is different and that's why your range is lower. Mike

[friscosue13]

Saw a hemo/oncologist yesterday for my 9.1 rbc.  Gave me a shot of Procrit and said he wanted to see my neutraphil count before giving me Neupogen.  He said that under 1000 was the number.  My major complaint is of shortness of breath; difficulty with stairs.  The forgetfullness is now in full swing -- kind of fun, actually, not remembering that I forget to do something.  It's always a surprise to hear who answers the phone number that I forgot I dialed!

He recommended that I lay off tx for about two weeks until I get stronger, but, of course, will defer to my gastro.  His thought is that by toughing it out I will encounter even worse sx's.  He also said that Interferon is worse than chemo.  Tomorrow will be 16/24.  I'm waiting to hear from my gastro., but am keeping in mind everyone's advice to not interrupt tx if at all possible.

BTW -- my hands have been arthritic and tingling the last week and a half; the Procrit SEEMs to have allieved that overnight -- OR it's just a coincidence.

[Dale_Ray]

this is confusing - The sheet I have shows normal Hgb (Hemoglobin) range at 14-18 g/dl. No mention of gender.

The title is Liver function test: defining what's normal

If various counts are gender based does anyone have reference information? Dale

[jmjm530]

As Mike suggests, men need more hgb than women to stay in the pink. Makes one wonder why they don't give us some of theirs? I believe men also have a more sides on average to a sudden hgb drop then women. So who says we're less sensitive?

[bobbyullc]

unfortunately i had the same problems all throught tx. and my hgb was 12-13 the whole time. i would talk on the phone and have to sit down. now after only 2 days post tx it has gone. i just jogged 1 mile when i could not walk 1/4 mile on tx. keep an eye on your blood work but this is normal. the sides are better some weeks than others. my rbc and rbc were both very low also.
bobby

[NYgirl]

it's not just how far down you go but how FAST you go down as well - since it took that long for you to drop that's why they didn't prescribe for so long I'd imagine.

If you had had all of the drop in 4 weeks it would have helped you out getting the script I am sure.

Doctors dont tend to take it as seriously with hep patients believe me if you had cancer he proobably would have given it to you.


Now that I've been ON procrit for like 35 weeks my number is between 10.5 - 11 constantly and I have NO problems.  Your body DOES acclimate to the lesser amounts of oxygen eventually somehow.

But nobody should have to really.

[Kalio1]

I think with men, a 12 13 reading is still very low. I was told women's Hgb is generally lower than men's so a 12 reading in a man is a struggle but a 12 in a woman is not as bad as for a man.
Are you having any improvement with the rash and the problems from the sun? I hope they are easing up for you. Is your energy improving since you finished tx?

[mikesimon]

Quest hemoglobin normal range is 13.2 - 17.1. Mike

[jmjm530]

I'm assuming Mike uses Quest labs. My Quest report has the exact same hgb range 13.2-17.1

Maybe someone of the fairer sex who uses Quest labs would post the normal range from their lab report.

Now if I were a conspiracy theorist, I'd say this is a case where female run drug companies are denying men their Procrit by establishing similar standards when indeed men need their hemoglobin at higher hgb levels. The females do run the drug companies, don't they?

-- Jim

[mikesimon]

I would guess that different labs have different reference ranges. Quest's ranges are slightly different than are my transplant center's. There is no mention of gender on my labs except for patient information where it gives my age and gender. That dictates the reference ranges appearing on my labs. Mike

[FlGuy]

Although not so funny, several people with anemia have reported ringing in the ears. So in addition to not remembering who you dialed you may be in for answering a phone when no one is there at all. As for the forgetfulness, you could go thru tx reading the same book or watching the same movie over and over and it's still new to you.
Once, I was ready to go out the door for work and wondered if I remembered to shower.  The tip-off was that my hair was still wet and uncombed. Duh.

[Kalio1]

I posted the female range from Quest above but here it is again.. 11.5 - 15.5

I am not sure I believe that sides from anemia are harder on men than women, if you have symptoms from anemia it is hard regardless of gender.

[sunspot]

Check this out. At home HGB testing. Anyone for a group buy? ;>)
http://www.hansonmedicalsystems.com/products/anemia.html

[friscosue13]

What's REALLY funny is the heavy breathing that whoever the heck it is you called hears at their end.  Then after they hang up you have to try and remember who to call again!  Maybe that's why my doctor hasn't returned my call yet...

[NYgirl]

SAID: He recommended that I lay off tx for about two weeks until I get stronger, but, of course, will defer to my gastro. His thought is that by toughing it out I will encounter even worse sx's.


NO DONT DO IT!

Everyone in here gave me a pep talk and I NEVER dropped my meds. It was hard but I FOUGHT THREW It AND THEY SAID i COULD...AND I DID! I was a 9.0 and at times I thought I just couldn't make it (like when I fainted in the shower and stuff)BUT in a FEW SHORT WEEKS it will GO AWAY and you will be so happy you did not stop Treatment!

It may hurt your odds of success big time to STOP for a couple of weeks so try try and keep trying not to. If you need you can call me at home and commiserate - anything I can do to help. I dont want to see your chances hurt in any way.

PS (When I was at 9 taking Epo once a week KEPT me at that number (but oddly I started feeling better as I got used to being so low) and it was ONLY when I got it TWICE a week 40,000 x 2 that my HGB went UP.  You might need that too as low as you've gotten - if you do you ASK right away!

[mikesimon]

If you are a man then it's harder for men, but if you're a woman then it's a whole different story because then, it's harder for women. It's based on my fundamental axiom: there's no pain like my pain. Mike

[can-do-man]

Dab blast it, i read the thread title and thought oh oh a gutter thread. Maybe next time? Just took my procrit, whats with these Doctors anymore? No balloons or suckers.

[goldyn]

My Doc told me that men have a harder time with tx than women, from what he has seen....

[friscosue13]

Can-Do-Man:I asked the guy for a lolli after my first Procrit shot yesterday, too.  He said, "This is gonna hurt."  I turned my head when he put the needle by my arm and said, "It didn't hurt at all," to which he replied, "I didn't do anything yet!".  Then he did and it did!

[friscosue13]

Can-Do-Man:I asked the guy for a lolli after my first Procrit shot yesterday, too.  He said, "This is gonna hurt."  I turned my head when he put the needle by my arm and said, "It didn't hurt at all," to which he replied, "I didn't do anything yet!".  Then he did and it did!

NYGirl:  My gastro called a while ago telling me to lay off a week, but he really just sounded like he was covering his a**.  Then I saw your email.  I'm leaning toward toughing it out.  I think that would be the consensus on this board.  Right?

[can-do-man]

I know, they asked me where i wanted it. I told them where i did NOT want it, and for the lolli's, Even crying don't help. I know.

[jmjm530]

Kalio:I am not sure I believe that sides from anemia are harder on men than women,
-----------------
But I never said that. What I suggested was that at any given hgb level -- let's say hgb 10 -- men will feel it more, because: (1) their baseline hgb was probably higher therefore more of a drop; and (2) My understanding is that men are more sensitive to an absolute hgb drop. But, yes, anemia is anemia, once the process starts. Moving on Goldyn, said her doc told her men generally have more sides than women. I've also heard this anecdotally as well. I emphasize *anecdotally* :) Since you use Quest and your range differs from Mike's and mine, then I think it fair to assume that the labs differntiate normal range based on gender.

-- Jim

[sfbaygirl]

If those dang ins. co's (I am SURE they are run by men lol) use the same number 10 for BOTH men and women, then it seems to me those men are playing favorites by using the same number.

I get REALLY worked up over this random 10 number. I haven't heard anyone but me who gets procrit at 11, all the time. I am glad I get it, but Grrrr It makes me angry that all of you have to suffer with horrible anemia for sometimes months at a time. It just isn't fair.

If the ins. co will pay for it what do the doctor's care? Geez, it's not like we WANT to take this stuff. I can think of a whole lot of things I would rather take than Procrit or Neupogen. Maybe they think we're all addicts and are getting high on it or something.

[jmjm530]

sf: f those dang ins. co's (I am SURE they are run by men lol) use the same number 10 for BOTH men and women, then it seems to me those men are playing favorites by using the same number.
------------------
OK. Assuming you're right and the insurance companies are playing favorites by using the same cut-off company for men and women -- then they're favoring women, not men, because men generally start off at a higher hgb level then women. That's why I'm guessing the insurance companies are all run by women :)

[sfbaygirl]

I believe there are studies that show men are treated more often with the same conditions than women. If a man goes into the dr. with pain, he gets pills. If a woman goes in, she gets the hypocondriac lecture.

[jmjm530]

SF: I believe there are studies that show men are treated more often with the same conditions than women. If a man goes into the dr. with pain, he gets pills. If a woman goes in, she gets the hypocondriac lecture.

----------------------
I believe women are running these studies :)

[sfbaygirl]

I like the way you cut off the i in quoting me. LOL  So true. Yes, you are right about that favoritism but in general I think men are treated for heart disease etc. more often.

Okay, we need to get Brian Fog and charge those Femi-Nazi insurance companies!

[MissMiss]

What a conversation you two are having!  lol

Seriously tho, I think women are expected to put up with anemia more so than men.  After all, we have Aunt Flo every month and anemia goes hand in hand with pregnancy.

I am a substitute custodian now (not working right now tho)  As the sides began to kick in and my hgb dropped to 8.9 I got a call to come to work.  Brian Fog flowed out of my mouth and I said "Oh, I am just too anemic right now".  The caller scoffed and said under her breath, "Anemic!  Big deal!"  To her benefit tho, she didn't know I was on tx.

Sorry, Jim.  I vote the prejudice goes against the women!

miss

[jmjm530]

I guess you haven't met Brian's sister, Brenda Fog. Actually, I dated her, several times really, but it's interesting that each time she gave me a different name :)

On a more serious -- and highly speculative note -- regarding anemia and women -- I didn't realize women were anemic when pregnant, but I've heard that women can become anemic during heavy periods. Maybe this is why anemia effects men more, as they have no natural programming for it. For example, studies show women in general have more pain tolerance. Some speculate that is because of child birth. Other speculate that is because they tend to marry men :)

[sfbaygirl]

Brenda and Jim, hmmmm...quite a pair I hear.

Women with heavy periods and otherwise get anemia more often than men. It is much different than I remember. Sometimes I would have to take iron. If it was really bad I would take hormones. So the tx was a lot different. It sure feels different. Yes, I got tired. I never felt breathless, panting weak in the knees etc... (Hmmm that sounds like something else altogether)  LOL

[friole]

Mrs O -- I am learning more and more that it is important to contact the insurance company first. Many times during treatment my doctor has said the insurance co wouldn't pay for something (like the 4 week PCR or the extended treatment).  Fortunatley I was assigned a case manager by my insurance co and he has helped me each time.  It is a dang shame you were not given Procrit earlier.  Not that tx is easy, but it is much easier if you don't have to dea with anemia.

On the blood work -- my lab shows a M/F range for hgb.  --14-18 for males, and 12-16 for females.

Now I have a lab question.  Just got my LabCorp 48 week PCR results back.  Clear, thank goodness -- but my question is regarding the sensitivity.  I ask for QuantaSure.  Last time, the sensitivity was to 2 IU/mL (or 5 copies/mL).  But this time the test was called the QuantaSure Plus and the range (only shown in IU) was 10 - 100,000,000 IU/mL.  Anyone else with this experience?  I wonder if they found out their tests were not really sensitive to 2.  When I go to the LabCorp sight, it doesn't show the 2 - 2,000,000 test anymore.
frijole

[sfbaygirl]

Did you notice how Brian Fog is a man? Fitting I think. Can you imagine what Brian Fog would do if he charged those femi-nazi's? He would probably show up and think he was at speed-dating night along with those pole cats hitting on him to buy their services. Talk about some heavy breathing!

Instead of finding wallets on restaurant tables, he would most likely hand over his life savings.

[sfbaygirl]

I like your idea about contacting the ins. co for when dr's can order labs or drugs. That makes the most sense, duh! As much as you and I pay for our Cobra, we should get any test we want. Don't you think?

Interesting about that sensitive test changing. Perhaps too many people with that test were relapsing or something.

How's the sun tx'ing you? I am going to the tanning salon to get a little more of a base before Jamacia. I have been sitting outside for 10-20 minutes w/o a problem, so I figured I would try half of what I usually do in the tanning booth.

[Kalio1]

My sun test has been a grand success. I eased in, doing 20min. and no more each day and no problems at all. I am now getting back to my normal tan status. I was born and raised on the beach and the stay out of the sun part has been very hard on me, so I am glad I gave it a try. Today is a perfect Santa Barbara day,sunny and should get up to 80ish. I am going to the beach before the crowds arrive for the weekend. Usually we stay away from downtown and the beach on weekends, too many noisy touristas. The rest of the time, the beach is practically empty!
Hope all goes wel at the tanning salon, I think you are smart to get a good base tan before the trip. I do that too if I am going somehwere tropical because if I dont I tend to get burnt to a crisp on the first day or two and then I have to hide out in the shade. Hope those bone aches are easing up for you. It teaches us what it is to "hurt to the bone"

[sfbaygirl]

How 'bout them old bones! They seem to really bother me in the morning and then at night they don't hurt. It makes me want to get up and run around at 2am.

I am REALLY glad to hear about your sun success. It gives me hope for the tan. I sure don't want to get burned. I know I would if I don't prepare.

Santa Barbara is beautiful. I haven't been there in 30  years, it was pretty sleepy then. I don't remember anyone on the beach. I love our California weather, don't you?

I named one of my kittens Frieda Kahlo and I thought of you.