anemia and exercise ?

[redsurfer]

hi everyone.. i am on week 15 of 24 week triple with incivek .. been very anemic so i was told not to exercise at all by my dr.. i usually exercise at least 1 hour every day..bike surf or hike... i miss it so bad.. i miss being outside.. does anyone know what a safe hgb level would be to start exercising a little bit again.. i know i cant surf cause of the potential for bruising and possible drowning cause im so weak..(haha) anyway ..i cant get a straight answer from my dr ..normal for me was 14.5 before tx now  im up to 9  from a low of 7 and still out of breath and weak but i feel better and maybe want to take a walk..what do you guys think? does anyone have any advise ? anyone else want to go for a walk?

[redsurfer]

wow you are doing great !! that is awesome .

.i went for a little walk today..it was ok....but i have run half marathons....amazing what anemia will do to you.. i'm just going to do a little every day ..
and your so right about the water..thanks for the reminder.. i'm going to drink more .. i drink gatoraide too idk if thats supposed to be good for us .....but i like it and its pretty colors !! probably a bunch or chemicals ...but pretty
going to do my procrit shot now..
hope everyone has a nice weekend !

[belle19]

i would listen to your body.  i am on my 17th shot and still do 3x/weekly cardio workouts.  i do low impact because i'm a little anemic.  i don't push myself too hard.  but when i don't go to the gym and i lay low  my sx seem to worsen.  so i believe in exercise.  i don't go surfing anymore.  but cardio and walking are my thing now.  also don't forget to drink LOTS of water.  sx worsen when i don't drink as much as i should.  i totally notice the difference.  take care, belle

[pjhep80]

ya its a day by day thing some days are much better than others i take the dog out everyday and just do what i can ... tried the atv again today and didnt crash woot woot lol...i never really got out of 3rd gear though...lol

[R Glass]

I would do what your Dr. advises.
I truly believe if I wouldn’t have pushed myself so hard during Tx. and took better care of myself (at one point he advised me to either quit work or tx), it wouldn’t have took me over 3 years to recover (still not at 100%).

[nowhine]

This looks like a positive group of bloggers here. Sometimes reading this stuff gets depressing. I am also a fitness nut. Love to work out. I am a "newbie" here starting tx next week. Did soc for 13 weeks previous and failed. No way I could work out on that stuff. I did try to keep moving and stay active and involved with things to keep my mind off how crappy I felt. It's a bump in the road and we will get through it. Heck they are getting over 90% cure on some of the new meds. Stay positive -that SVR is in site.  

[redsurfer]

thanks for your answer.. this makes perfect sense .. i keep thinking ..well im just out of shape i need to get back in shape... but i have anemia .. the good thing is im actually thinking about going outside so i know im getting better ..

[rockymoe]

I say do what your body tells you. i said when I went for my first nurse and social worker for this round, that I was going to keep doing Zumba 3 to 4 days a week. Yeah right I go upstairs and I'm sucking pond water and my muscles burn. they put me on marinol as the first 3 nausea helpers worked. I'm not 100% but better. My theory is do what you can when you can!

[redsurfer]

hahahaha .. i know... what the heck am i thinking? my brain just wants to do stuff my body always used to do... and my body cant even stand up for 20 min...but actually i just started week 16 and i finally got that incivek **** out of my system and i feel better.. not good or anything but i think im gonna walk my dogs around the block today and see if i pass out or not...wish me luck

i hope you get better too ..

oh and ps i tried to ride my bike at week 5 and i almost killed myself too..

[pjhep80]

exercise... ha ha ha... you are funny... i take my dog out every morning for a walk/run used to walk at least 30-45 mins and do at least a few miles, now at week 5, im lucky i can even get around the corner and back lol.. i also ride ATV's went out last weekend for an hour and almost killed myself no strength to control the bike and i was not even riding hard...cant wait until this is over...

[redsurfer]

hi,
i have been on procrit since week 8 ..i guess it has prevented me from getting a transfusion but its not a dramatic change..im still hovering in the high 8's low 9's ...worth trying ..some people have dramatic results ..
have you tried prilosec or prevacid for the burning.. i swear it helped me not have the burning bowels and my stomach was not so acidy .. it really made a difference for me..they have prescription strength too ..pepcid ac was not strong enough.. as your dr about it ... the burning got way better when i took it..

[TripleCrown]

Hang in there. I go to a restorative yoga class 3x a week. Sometimes I modify things that like down-dog or any thing that makes me dizzy. But love the benefits, mentally and physically. Meditation, visualization and intention help me stay on track and gives me a healing focus. Yes and sometimes I just lie on the floor.
Got some procrit coming my way. What is your experience with procrit or transfusions? Have they helped? Im hoping it will. Sometimes my head is spinning and my vision is affected.
And the sore throat and sore butt give whole new meaning to "go for the burn."

[redsurfer]

yes .. t street ..good eye ! i take it you have been here?
actually i hate to say this but chemo was nothing compared to this..with chemo you get a dose and you feel bad for 3 to 7 days then you get a break and you build your strength back before you get nailed again.. this is constant assault and it wears you down..sometimes i can bairly get out of bed ..i hope i'm not scaring anyone.. it will be worth it in the end..im getting better.. almost done with week 15 !
thanks !

[James10500]

Wow redsurfer you are one tough lady !  Is your Avatar looking north to T Street in SC ?

How do you compare the tx you're on now to the chemo you were on for breast cancer.

As far as exercise I only did 2x last year at this time. I did what I could 30min of cycling at a geriatric pace. When winter roller around I skied a few runs and hung out a bit. Did what I could. Hang in there.

[redsurfer]

i am tired of doctors right now .. but they told me not to exercise cause of lack of blood volume and oxygen ..my muscles shut down i cant even lift the kitchen trash can... the doctors want me to wait till its back up to normal .but they wont give me a specific number.. they are very evasive on this subject...
i kind of think it will make me stronger to do something.. and i might try some yoga .. just mild stretching ...good idea.. thanks !
.

[orphanedhawk]

How about yoga? Or mild pilates?
All of our bodies need to move, as you well know.

I've never had anemia so its hard for me to address that one particularly.
Why don't you call your doctor and ask what exactly is his reasoning behind cutting back on exercise with low rbcs?
Speak up, you or your insurance is paying him. I email my doctor and phone my nurse whenever I need answers.

However, I understand staying out of the Ocean.
When I had cirrhosis, the salt water would give me ascites. Not one doctor I talked to thought swimming in the sea would do that because you aren't swallowing it. But they were wrong. Our skin absorbs it!

[redsurfer]

yeah... i dont think my doctor looks like he does anything besides walk around his office and an operating room.. he looks at me like i'm crazy when i tell him i want to surf ..and your right about the lack of energy stopping you from doing too much.. i think i will try my eliptical machine when i hit 10 ... to celebrate.. oh man its gonna be hard...last time i was on interferon and riba.. i could still work out the whole time.. not as much but that incivek kicked my *** for sure..thanks for sharing!

[redsurfer]

thanks crossroadsec! .... yeah i know we will get back after.. ive been through this twice before and i'm also a breast cancer survivor did 4 surgerys chemo and radiation.. and i always bounce back.. the radiation took longer but the hep c tx wasnt long...i cant wait to be free !! hoping for a healthy second half of my life with no doctors or surgery ever again...
and yeah billy i will wait to do much till my hgb hits 10 ... then at least i know i'm getting some kind of oxygen.. thats a good goal i think... hopefully soon i will hit 10...
how is your rash now? its been almost 3 weeks post incivek  for me and...my skin is almost back to normal..such a huge relief.. that itching was the worst..
hang in there we will be strong again soon.. im still not gonna carry 100 lbs on my shoulder tho... not gonna happen ..haha

[yodennis]

I'm into week 7 on Incivek triple tx. with a hgb just above 10 which I am reading every 1 to 2 weeks. I am undetectable with cirrhosis and I am as fatigued as most are on our subjective continuum with this "curse from heaven' type therapy. Most M.D.s (other than sports medicine specialists) seem pretty cloudy when it comes to exercise advice. I work out with weights every other day dividing the muscles I work between workouts so I only work the same muscle group every 5th day. this helps me maintain some of my musculature from years of working out. I am disciplined by the amount of energy I have and could't "overdo it" even if I wanted to. Does my RBC/oxygenization/ nitrogen balance on a high fat diet support this choice? Who knows? I just know that the same endurance that galvanizes my resolution to stay on this life sucking protease inhibitor (in terms of energy- not effectiveness) galvanizes my endurance regarding exercise.........p.s. walking up the steps is harder for me than being stationary  on an exercise machine which is probably a dual outcome of the Incivek and the Ribovarin. d

[working dog]

i hear ya...i'm on week 14 and glad to be doing what i can at hgb about 9s...i exercise hard normally but i'm done when my hgb goes under 10...i wouldn't risk overdoing with low hgb...i'm outside so much normally in all kinds of weather...now i can finally go out but can't do much...every time i lift something i feel it...i can put 100 pounds on my shoulder for 15 seconds and then thats it..normally i carry bundles of shingles up a later no problem...not now...i could do one but it would really be a drag...i'm trying hard to keep calm about this punky feeling...so out of shape...it will be over soon...hope none of these sx plan on sticking around..good luck.....billy

[crossroadsec]

I go as hard as I can whenever I can. And i sleep when I feel like it. I walk a lot at work... In heels n love the quad burn. But sunshine still makes me itchy. So I stick w mild yoga unless it's cloudy. I personally feel better the more I do. My dr said to find my own balance.. Listen to ur body.
I figure worse case we'll have to work hard after tx to get in shape.. I love my bike... :)