Breathing

Sometimes I feel like I can't breath, even when I'm lying on the sofa watching TV.

And sometimes I do an involuntary gasp/yawn/breath as though I'm starved for oxygen but there's no tightness in the chest.

My HgB is now 11, down from 15.5 pre TX but it's hovered around that number for the past 5 months.  I know that's not considered a low level.

Anyone else have this SX?

wyntre

[NYCMark]

Yes, I have this exact same symptom. My hb hovers about 12, but it started at 17, so it did take quite a dive. I have trouble walking quickly and going up stairs - I get winded immediately and it takes me quite a while to catch my breath. My doc says this is a common symptom even with a hb that's not dramatically low. It's nice to know that other people have it, but really doesn't help you get through it!

Gee, the list of side effects of this stuff is endless!

Mark

[wyntre9]

Years ago I had very bad asthma and ended up in the hospital on oxygen for hours.  

The Dr.'s said if I hadn't gone to the ER I could have died.  But I didn't have nearly as bad sx as I'm having now.  It's strange and scary.  Sometimes it feels like I'm gonna pass out . . .

I have had breath tests and apparently my lung function is normal.   I would have thought this sx would have gone away by week 42.

So how are you doing?  The countdown is on for you, right?

wyntre

[debnevada]

serious SOB doing ANYTHING.  Even though my numbers are good (13 plus). I was almost 17 at the start.

also, when i do go shopping or anything, if i stand for any length of time, not doing anything, the sweat ROLLS off me.

do you think itcouldntbe is nerviouskid?

[wyntre9]

Hey!

Don't forget you're addressing the mentally challenged, here.  *LOL*

I say, WHAT!!!!

'do you think itcouldntbe is nerviouskid?'

Please tell me that's a Typ-O and if not, translation, pleeze.!

wyn

[NYCMark]

Yes, the count is on. #72 coming on Friday!  Seems like this would never end.

I'll be a nerviouskid for the next 4 weeks fer sure!

Mark

[debnevada]

HAHAHA
CLOSE CAPTIONED FOR THE MENTALLY CHALLENGED INCLUDING MYSELF
SOB=Shortness of breath
I was saying i wonder if the kid you posted to earlier today about the bleeding finger and basketball (YOU SAID 'NO") is the same kid who posted a while back under the name "nerviouskid".

NYC:  What a stud.  I can't believe you went this far.  I'm thinking about calling a halt to the proceedings at 36.  WOOOOOOOHOOOOO

[wyntre9]

Mark!

WOW!   Last shot this Friday!  That is fantastic!

You'll have to let us know how your post TX sx go.

A big congrats to you!  Didya ever check the link I posted with the "Parrots Hilton" pic of the Quakers nesting in the entrance gate towers of Greenwood Cemetary?  it's so cute.

Deb,

You are WAYYYYY too subtle for me!  :)  These days ya gotta hit me over the head a couple a times with a sledge hammer before i get the connection between A and B and even then there's no guarantee.

I know whatyamean about TX - I wish i could stop in 6 weeks at 48 instead of 72.

But after reading all the disappointments around here recently, i'm gonna press on.

wyn

ps - even I got SOB.

[R Glass]

I thought it might have been the "Paper Towel Guy" again but, I chose to be quite this time.

[CMcH]

Can you please clarify what the SX are during RX? I know they probably vary but I have not started yet just getting the biopsy next month. Did anyone have symptoms before RX like jt. stiffness, blurred vision and poor memory or does that just come on with the RX? The reason I ask is because I already have these things before RX and I know they will get worse  w/RX but is there light at the end of the tunnel? Does it ever get better? In checking out this forum it seems like you get a lot more problems that sometimes don't go away. This is pretty scary stuff but I like to know what I am getting myself into.

[wyntre9]

It's TX for treatment!  *LOL*

Don't be scared off by us.  Everyone has different symptoms and everyone reacts differently to the meds.

And maybe the biopsy will show little or no damage in which case you won't even have to RX, I mean TX.  (Just kidding)  :)

But, seriously, why are you scheduled to begin treating when you haven't yet had a BX?  (biospy)

wyntre

[orphanedhawk]

I found my breathing worsened once I started taking neupogen. But even after I stopped the neup I'd get winded really easily. Luckily, once I stopped tx, my breathing has improved. I'd suggested deep breathing exercises. You can do them lying down!        

BTW: I'm doing much better,painting, writing, feeling like a human being. I'm even looking into getting a short story I wrote about a couple of monks from Burma, published. Free Burma! My latest obsession. No bird report today.

[zazza]

My thoughts were going the same direction. Probably not FearfulOfDisease though, but somebody else with OCD. Seems to me like you are starting to recognize the symptoms of that disease!

[hippygem]

Hi, sometimes without thinking we can actually be holding our breath, not realising it, experiencing  anxiety which can bring on the breathless, catch of breath feeling. Take slow deep breaths and relax or meditate to alleviate this problem.

[nygirl7]

You know 11 when you're coming down from 15.5 is a BIG drop in hemo and I wouldn't be surprised at all if the anemia isn't the culprit.  Even when I was on Epogen I could only get up to around 10.5 (which is close to the 11) and I still had some difficulty breathing.

you have anemia numnuts!  it might not be below 10 to get you on the Epo but I'd bet it's exactly what the problem is.

You have a LOT less oxygen in your blood then you are used to - of course that would make it harder to breathe!

:)  (ONly joking on the numnuts comment just wanted to point out!)

[geterdone]

In the beginning of TX and up to week 20 I also had this problem of being very winded and fatigued and started procrit at week 5 because of anemia. It took 3/4 weeks to kick in and the hg came back up slowly but the windedness still persisted like a brick sitting on my chest. Now mind you, I also had a very severe case of bronchitis at this time and had been taking antibiotics. After this cleared up, the griping windedness was still very hard and dreaded walking up hill to my car in the evening. I had complained several times to the doc about this over the course of the next 3 appointments or (12weeks) and he more or less said this is the way it’s going to be through the rest of TX. Saying to my self, (I don’t think so doc), I can not function like this and we talked about lowering the riba because by then the pcr’s had been <10 and the ast and alt had been in the 20 to 30 range, so to me it was a no brainier because by then I had been reading this board and the many threads pertaining to this very subject. I had convinced the doc to lets just do it and see what happens. That was 11 weeks ago and am going into week 31 this Friday. It had worked! “Lowering the riba was a two fold decision” because of loosing 35 lbs; the riba was too strong for “ME” and the fatigue and heavy windedness in my chest along with the heat of summer I was experiencing. Now after 11 weeks of reduced riba I am able to work a full day but do get tired by mid afternoon unless I exert myself beyond what I should. So, from my personal point of view and experience it was the riba causing breathing problems and will find out if I have jeopardized or compromised my TX by the latest blood work which include a pcr. Hope this helps, and is my own personal experience through this part of the stinking SX of the TX.  Boy, that was more than 10 words, lol!

jasper

[wyntre9]

NYG,

OK.  What's numnuts?  Is it a gender specific ailament?

thanks for pointing out that the drop from 15.5 to 11 is quite severe although not in anemia range.

Hippygem,

It's not anxiety;  I've had enough of those attacks to know the difference.  The deep breathing is something I've been doing for many years, both as a woodwind player and a longtime yoga practioner.  When I was playing flute and soprano professionally I could hold a note for up to a minute and a half.

What's disturbing is that I get the breathlessness WHILE lying on the sofa doing absolutely NOTHING!  But I have noticed it's worse the 3rd to 5th day after injection.

geterdone,

Wow.  you lost 35 pounds!  that's a lot.  that's exactly what it feels like, BTW, a pile of bricks on the chest.

Can't drop riba either coz I'm only at 1000 mg.  Plus, with all the bad news on forum lately I'd be afraid of reducing chances of SVR.  I'm 1A and on week 43 of the 72 extended TX.

Luckily for me, i'm not working right now.  Otherwise there would be no way i could continue treatment.   Thanks for the suggestions.

wyntre

[JodyLynn]

About 3 weeks into treatment this happen to me, all i have to do is move and i cant breath....i ask the nurse she said shes never heard of this as a side effect...well i ask the drug store and they said B** S*** it does the shots and pills used together can cause this. Sometimes i feel like im gonna die.

[wyntre9]

What a gorgeous pic that is!  :)

Yeah, the SOB when I'm walking around or trying to do some housework or shopping or something physical i can understand.

it's those attacks that happen when I'm essentially sedentary that I don't get.

wyn

[GrandmaA]

Hi,
For SOB or breathing problems hold the inside of both knees (medial side) with your hands.  You can hold the knee caps and drape the fingers to the inside. You can do this up to 1 hour a day. It is the prime mover for the body and will help get things moving. Later you can also sit on both hands for overall better health. I just came from 5 days in a bodywork class and it was great. I got worked on every day and the teacher did a body reading on me yesterday. The swelling on my first knuckle index finger left hand has gone down half way now. I'm still working on it. He said it is related to my loss of hearing the past year 30%. That would be nice if I didn't need my hearing aids anymore.
I hope your breathing improves.
Take good care.
  

[chevyelcam79]

I have the same prob.  My hemo is 11.3 but WBC are 1010.  Just walking back from hanging out clothes yesterday about killed me.  Humidity is a bit@* also!  I get coughing so bad I see stars sometimes.  

Inhalers are a bit of a help!

Shari

[JodyLynn]

Why thank you.

[wyntre9]

Grandma,

thanks for the tips but I can't manage to do anything for more than an hour a day except sleep!  *LOL*

That sounds wonderful, being 'worked on' every day!  Hope the hearing aids are history, now.

Chevy,

Guess I've pared down my expectaions so much the past 10 months that I don't even expect to be able to do much walking without severe SOB.  But the breathing issues while in a comotose state lolling on the sofa are weird.  it must have something to do with peg coz today, 2 days before injection #43, i feel better.

I used to have inhalers for asthma but I haven't had any wheezing. . . it's hard to describe the sensation . . . it's like when my parrots start opening their beaks and sucking in air, or like fish puckering their mouths - it's weird, involuntary . . .like why would I need more oxygen when i'm not doing a darn thing????

wyntre

[GrandmaA]

With conventional medicine (drugs) we are used to fast results. With natural remedies it often takes as long as it took to get where it was when it bothered you. I had hearing loss before I was on tx for 2 years but not bad enough to wear hearing aids. It is slowly improving. I look 10 years younger when I get up from a treatment. He was amazed at how different I looked.

The practitioner was very good as telling what you are lacking in your body. He said I need to take more oil. I got the best whey protein and ordered some sea salt. He said you need salt for electrolytes. He said you cannot utilize your calcium if you are too acidic. I need to be more alkaline.

He also knows how to get rid of the colloidal silver in my knuckles with clay, etc. He gets rid of lots of things on his body that way. It's very interesting. You end up with a foot soak. I'm so glad he gives me a discount. I just had a very costly repair on my car and I need the discount.  

Wyntre you must have air in order to stay alive, even if you are doing nothing.

[wyntre9]

Wyntre you must have air in order to stay alive, even if you are doing nothing.

*ROTF*

Can I quote you?  :)

wyn