If i were a horse ..

[KICKSTART]

you would have shot me by now ! Well apart from a permanent cough , a mystery virus that has hung over me for nearly 5 weeks now and a hemoglobin of 7.2 everything is just rosy !

One or two of you mentioned having a low hemoglobin and possible blood transfusions. What i wanted to ask was , how long did it take for the hospital to treat you ? I have been told i need to build my iron stores up firstly , then reduce my b.p. then start on epo. The thing is, i have had only one lot of iron since.I even rang to ask if i was coming in this week for more , but no one knew (and i havent been called in) I am just finding it difficult at the moment living on my own , the tiredness is worse , but ive noticed my breathing is hard work and i cant walk the same distances i could a few weeks ago , without having to stop and rest. They have already told me it will take time to build my iron levels back up etc , but its never going to happen if they dont give me any or make me wait weeks between times. What was your treatment like ? when did you notice a difference ?

[paris]

Hi Kickstart, I have had iron infusions to help build the iron stores.  The infusion itself took about 4 hours.  It then took awhile to start noticing a difference.  I started getting the epo shots before the iron infusions.  My numbers kept going up and down for over a year.  Now we seem to have found a good routine and my numbers have stabilized.   I hope they can figure out a good solution for you.  It does take awhile and patience is NOT my virtue!  Hope you start feeling better soon.

[Deanne]

I can't answer your question, but I'm glad you aren't a horse!

[twirl]

If I were a horse....... I would want to belong to Tim McGraw

[monrein]

I had a series of 10 iron baggie drips in a row(into my lines during D) and I get an Aranesp shot every two weeks.  My BP used to be really high and I was on 5 different meds, pretty high doses foe each.  Since starting dialysis my BP is low (post dialysis standing pressure today was 108/59) and I now take only one half tablet of a beta-blocker med and that may go too after my next clinic appt.  I do want to ask again if I ought to be taking an active form of vitamin D but last time I was told there was no need. 

Your hemoglobin seems really low, no wonder you feel super fatigued etc.  I think I would try again to get a hold of someone with a clue or two (not easy I know) to discuss the scheduling, the exact outline of how this situation with you is going to be treated and handled.  You want dates, a timeline of what is going to happen when with the iron infusions because it sounds a bit like you're slipping between the cracks some where along the line.  I was given the iron infusions starting two days after it was determined that I might benefit from some iron.  I've personally never heard of all the things you have to wait on first before they'll start the Epo but others on this board might have a better understanding of the reasons for that than I do.

I wish for you to get this straightened out soon and to start feeling better.  It is especially hard doing it all on your own and attending to meals etc while feeling weak, tired, virusy and worried.
Any chance of a new doctor under your medical system there???

[boxman55]

if I where a horse I would look like my avatar...Boxman

I got iron shots prior to starting dialysis I think it was once a week (not sure, maybe every 2 weeks) can't remember if they did any good I suppose they did but, I was on the downward slid to dialysis fairly quick so my breathing, walking, fatique, etc never really rebounded

[twirl]

and Boxman you would be a beauty of a horse
my answer about iron shots would match Boxman's
but those shots hurt and I got them every other week
I just got worse and then got on D

[frankenarm]

I have had a problem with anemia and my iron stores since I was a pre-teen, they tried to get me to take oral iron for years and I just couldnt due to the... tummy side affects. Currently I get iron and epo at my center (epo every run and iron once a week.) Usually when they said you need your iron stores up before they can give you blood its because well, you just dont have iron in your system to support the new blood. However, if its getting as bad as you say (and im not doubting! Ive totally been there, it sucks!) then they really need to boost you anyway. Its not safe to leave it.
Try again! Start yelling at people to pay attention... though that does take a lot of energy so make sure your sitting down! lol

[KICKSTART]

Thanks everyone ..my treatment does seem a bit hit and miss , a week of IV iron here and a week there. I did ask when my next one was due bout no one knew , im going to try again to see whats going on.

[twirl]

I changed my mind, I'd rather be Clint Black's horse and live on his ranch in Willis, Texas----- right down  the road

[carson]

...I have a horse...his name is Carson....He is my therapist and holder of all secrets!
My name is actually Lisa

[Sugarlump]

if you were a horse you'd probably eat me !!!
Prior to starting dialysis i had four iron fusions lasting about an hour each one a week to
boost my iron levels then epo injections twice weekly which did help.
Now that my kidney transplant is failing i have the same problem my hb is now 8 and
i feel exhausted all the time so you have my sympathies. I yawn all the time (lack of
oxygen) and my brain feels sluggish too.
I'm starting epo injections this week again which will hopefully improve my levels or i'll
have to go back on dialysis soon...
Don't try and do too much while your hb is so low, apparently it puts a real strain on
the heart to try and get oxygen round your body.
Best wishes