Little late reading this thread but have to add my 2 cents.
I never fainted but got pretty light headed every time I worked in the yard -- had to go sit a few minutes.
I just started doing everything a lot slower - walking, talking, stirring the pop on the stove. Started shuffling, ya know. I don't envy you with the traveling. Just pace yourself.
We went to Cloudcroft one weekend and that was a real challenge. I love to hike, but all we did was car tour, and take short strolls herea and there. I really felt O2 challenged that weekend.
I would still push for Procrit if I were you. 11s are still high, but maybe not for your constitution.
frijole
(still got some of them alien green chilies)
Yep, we call it the Riba Shuffle around here.
Ya just put both feet on the floor and DO NOT lift feet off the floor as you move forward. You might fall.Be sure to hang on to your walker, cane or what ever object is reachable to steady you (Strangers will do). Sit in your walker every 10 feet or so to catch your breath. Put tan makeup on so you don't scare those passerby's. Make sure you comb what hair you have so the looney tunes truck doesn't come to pick you up. Use duct tape (clear) so your mouth doesn't gape open and pant. Be sure you remember to wear matching clothes and shoes, so not to call attention to yourself. Try not to slurr or drool, you may slip on your drool. Drive as close to wherever you are going, it will prevent passing out. Catch rides with those little carts as often as possible.
Any additions welcome!
PS
I get my aranesp at 11+, I learned the above shuffle rules when I was above 11. I think you need some procrit
Signed,
A panting, drooling, out of style, spiked hair, hitchhiking shuffler.
The thing about the importance of the title of the thread is that when it is archived someone searching for info. can find it easily if it is titled appropriately if it is titled off topic the information gets lost and can't be of use to anyone later on. It doens't work that great here because often the title doesn't even end up matching what the conversation was originally in the thread anyway! It's nearly impossible to do because so many are new they don't know how to post or how to title it or how it works on a board so they open a new question every time they have a question. There should be some instructions or something on the first page. I guess the best way to access info here is to google it rather than use the "search/browse archives" feature. That way it will come up by subject but if you try to find info by looking thru thread titles you can't find it by titles. Often people dont realize they have to go google the subject rather than find it within the site. It's free and has it's quirks and limitations but still I think it gets info out there to those in need, warts and all. Plus gives us flat on our butts a way to connect with others in our situation.
Also if you title it with something inappropriate (p**p thread for example) the admin will yank it for that reason. They also yank them if they have a famous person's name in it or other and sundry reasons.
You are correct about the titling of threads. I learned this while trying to search for some issue and couldn't find it. Too many threads names "Hep C" that have one has no idea what is contained in the conversation. Of course, that happens anyway around here. Perhaps our fogged brains can't stay on one topic for too long. LOL
The problem with googling for the topic you want is it only seems to show recent posts here. Sometimes there were topics I remember from days or weeks ago and they don't come up on Google.
Yeah Bob but you are one of those special people who are always first to the finish line...just like you are beating me with the SVR!
hee hee
It's true that hemo can go so FAST when it happens - I can't imagine how people who start can be ordered only a monthly PCR or something. I mean it was OBVIOUS something happened to me and I had to go in to the doc but...if I wasn't smarter I might have just thought it "normal" or something, a side effect - cause it really wasn't what was explained to me would happen.
Thank God for the forum, how would we ever have made it this far?
Your right, the forum has made us all smarter and helped guide us through tx. Without this forum I may never had finished tx.
Bob
Yeah, the old thread system had it's merits, but I remember feeling very uneasy when people or newbies who didn't know would post multiple threads. I would worry that they were going to be taken up. It seemed that we made the best of them anyway. Who cares if the thread was titled no one understood? Like Fish Poop, or we NEVER would have had Brian Fog. Can you imagine life without Brian and his family? that didn't seem to stop us posting our hearts out. LOL I do worry less now though, but man is it hard finding anything around here. I always think I am going to remember who and where I posted something. The next day I come back and have no clue the name of the thread, the person I posted to, or if it was all a dream. So many threads are disappearing lately that my I think there is a conspiracy to keep us all under Brian's control!
I fainted badly but...my hemo had gone from 15+ to 9 in just ten days - way too drastic a drop for my body to handle.
Since it'sn ot just the NUMBER but how fast you get there...it's so important for us to make sure we know what is going on with our bodies. Sometimes it happens too quickly to even be diagnosed in time.
Ditto, debby your right it's more on how fast the HGB drops. I dropped so fast that I was on procrit the second week of tx.
Beagle
strator- glad to see your still checking in. Your poetic soul is one that I truly miss around here. I guess the results of the thread are we really rarely follow through to the ground, just do lots of threatening!! keep checkin in, start your own thread to say hi so we can find it in this mess!! I am not with JmJm on this, I hate the new format, rarely read more than one or two threads a day, which means 20 get overlooked...
beamer- you bring up a good point, do they ever put us on 02? seems less drastic than a transfusion, but maybe ifthere is nothing to carry 02, it wouldn't help...
goof, be very careful with your humor, as one of the ones with an A+ sense of humour... your posts are the next to go......
I ran with pretty low hgb (7's and 8's) for a long time. I never fainted - got some nice rushes though when I'd stand up too fast. I had to walk slowly, avoid stairs, and pay attention to light headedness.
If it gets too bad, just lie on your back. I'm certain this will work, since try as I might, I never had a gal get light headed an swoony on me when she was layin' on her back. Frustrated? Sure. Dissappointed, you betcha. Light headed and starry eyed? Only when I farted.
yall have made me feel better. Its nice to know 1) you just feel like your gonna die but your not ( sounds like shrooms) and 2) you just feel like your gonna faint, but rarely do from the HBG. I'm just gonna get the boss to one side, and say "lets not make a big deal of this, but you need to cover me"
beagle, I went into town today to do blood, rather than wait until friday....dr is gonna do every two weeks now instead of every two months!!
thanks compadres, for the support...
Believe it or not no blood, but the hemo. doc has been doin cbc's every other day. No work til I straightin up from this alittle. If I didn't own everthing I got I would have had ta get the blood , to work, ya know how it is. Alotta rest til then.
I never passed out from the anemia. I don't think it's necessarily how low it goes (mine never got much over 10.6 even on the procrit) but how fast it goes down! You probably won't pass out, just walk slow and take your time. Not that you can hurry while your gasping for breath! May your trip be uneventful!
good point, we sit at 3500, definitely gonna have em drop me at the doors...boss signed me up for death valley in November, I'll probably feel great there!!!
Believe it or not I'm still afraid of taited blood.
It's nice to know I'm not alone with this, I'm embarrassed to tell anyone, they'll say things like don't be such a big baby, that kind of stuff, and nurses can be such Colonel Klinks' about it all, while they are weilding this big ole needle, they either act really annoyed or just plain psst off...
I understand that, it is illogical and it is their job and they want to get it over with, but that's my deal and you'd think they'd show a bit more compassion, luckily there are some nice phlebotomists (don't know how to spell that word) at that Quest place that a lot of people go to...if they are doing blood draws and the person misses a vain, OH LORDY do I freak out, if they start pokin and pokin...I start hyperventilating and I do that tunnel vision too at times, it's awful and I'm so embarrassed on top of everything....
I know I have to get over it cause when I do treatment I know that that is going to be a big part of my life, getting poked!!!! I went to this web site about it, and I read up that a lot of people have this fear, and they have these little machines that you put on your arm and it desentisizes (god knows how to spell that one either) your arm, but it's just not the pain for me, it's the whole process...them tying me off, getting the needle ready, it's making queasy just thinking about it...I hate phobias!!!!
Course, overthinker that I am, I've tried to analyze it to death, I think, maybe it's cause I tried injecting a few times when I was a kid and it got me this disease, I'm making some kind of extremely negative, unconscious connection, whatever...
My shrink says the theory has to do with primeval man, and their fear of animals with claws drawing blood...that's certainly a more creative, less boring way to look at it, but dang if knowing this stuff intellectually helps me when I go get a blood draw...
Oddly enough, other kinds of needles don't bother me AS much, little needles like the interferon needle might not be too bad for me, I'll jump that bridge when I cross it, ha ha! It's blood draws that have me barking at the moon! I'm actually listening to tapes on it now and they do help a bit...thanks so much for sharing with me, it makes see that people can get through this and prevail...you've shown some real compassion, thanks, all the best to you...(sorry I went on and on, it's just so good to share this with someone who knows)
thats not funny, bro, thats reality!! I said the same thing to my GI when he said he would transfuse and prescribe procrit at the same time.... I said "bad things live in blood"..... ask all the folks that got my blood, I have no issues with needles, i donated all the time, and then ten years later, there was worse things, and what will they find in the next ten years...I would just as soon avoid it if possible....
so can man, how bad is the bone pain associated with procrit?
Ha girl, what about vampires sucking yur blood.
Dealt with the IRS years ago now, they can't audit me again for a few years at least...he he...
Sorry to the way your feeling. What your doing through is what happened to me when my hgb was low, I increased the procrit and took B-12 shots. You might be lower then the 11.8 of 3 weeks ago. I would have your HGB checked, if around 10.0 you might be ready for procrit. Hope you are resting enough.
Beagle
Procrit tomarrow bb, thankgod guy. How are we today?
Now thats anuff ta make a body pass outLOL.
ha ha ha ha!!!! you Dyceman you! Just hope Fishdoc finds a good way to deal with this...