Just got out of the hospital

[Adam_W]

For the last few weeks, I have been getting unusually tired, and I could not figure out why. Then last week I saw my nurse and drew my monthly labs. The first thing my nurse said when she saw me was that I looked very pale. The following day my nurse calls me and she's just about in shock. My hemoglobin was only 4.7! She was amazed that I wasn't laying on the floor unconscious. She said I needed to get to the hospital right away for a blood transfusion, so I went. The staff there were just as shocked as my nurse was. They ended up keeping me for four days (yuck!) and giving me four units of blood, and they got my hemoglobin up to 11.6. I'm home now, I have normal energy again, and my skin colour is back to normal. My doctor made some BIG changes to my EPO and my iron doses, and we'll see how it goes. That is NOT something I care to repeat!

[boswife]

WoW!!  Im so glad it was caught but why not sooner???  Do you know why it went down so far?  are you leaking somewhere? Infection somewhere?   or is it just the 'adjustment' was needed back a few weeks ago...  Geesh.  WE too just had a stay for what we thought was low.  Bo's was 7.2 and he felt awful!!   When will you get checked again?  And what are your doses now?  It's so worrysome to go so low and i cant believe you went that far.  Did you see a downward trend... Dang, hope it's going to hold and all, and sorry you had to go through 4 days but so very glad that ya caught it.  Bos is comming up so the 'adjustment' for him IS working.  Hope to hear your doing well and holding...   

[Jean]

I am with Bo's wife. You must be one tough cookie to go that low and still be upright. Hope it is permanently straightened out for you now.

[Adam_W]

It seems to have gone that low simply because it was time to change my dosing, but it should have been done long ago. I'm now on 20,000 units of EPO three times a week. That's a lot of EPO, but I'll do what it takes to keep this from happening again. Looking back on the last few weeks, I should have seen the sings, but I didn't. I was losing a lot of energy, even though I could still function. My skin had begun to take on a pale, grayish colour, but I didn't connect that with anemia, and I was also bleeding a lot from my nose, which was another sign of severe anemia. I just didn't see it coming, when I should have, so I didn't tell my doctor. But with a hemoglobin that low, I should not have been able to move, let alone be up and active, driving my scooter around town like normal, and mainly feeling "a little more tired than usual".

[willowtreewren]

Good grief! 

You must have the constitution of an ox!

I hope this doesn't happen again, and at least now you will know the warning signs!

 

Take care!

Aleta

[texasstyle]

ggad to see you're feeling better!. Yes, i can imagine with that little oxygen in your bloodstream you were feeeling like you did.

[boswife]

hey Adam, do you have plenty of Iron to soak into that epo?  I am having to give Bo iron interveniously every other treatment for the month.. WOW .. he had eaten up all his reserves...  He's taking 9,000 epo once a week and i thought THAT was alot.. Gee wizz...  So do you do blood every other week?  It'll be good to see how it is then.  Surly an awful thing..  Ya know, 2years ago, bo had a transfusion as well.  He was emediatly feeling great. This time, it's taking a while to pick back up.  Im so glad it came right back to you!!!!

[fearless]

I can relate.  When i was about to start dialysis, my hemoglobin was that low.  The doctor seemed totally unconcerned, but when i went to the hospital to resume my epogen shots (I was receiving it pre-dialysis until my insurance ran out) the nurse wouldn't let me leave until I received two pints of blood.  I felt SO WEIRD.  It was November, and I realized I hadn't really felt warm since i couldn't remember when.  It's like my very bones were cold and i couldn't generate any heat.  Hard to believe I was walking around that way.  The transfusions only brought me up to 8 or 9, but it was enough to make a BIG difference until I could get the epo going again.
 

[rsudock]

Adam have them check your EPO level every other week until they get it more regulated...it seems like very low or high is dangerous for dialysis patients. Also (and forgive me if you have already explained this. I have not read your introduction) you are aware that everytime you get a blood transfusion it is raising your PRA correct? My brother has gotten a lot of blood over the years and his PRA is in the 90s, making it virtually impossible to find a kidney that matches...not to scare you, but to keep you informed friend. There are things you can try to lower PRA though...

Glad you were able to get out of the hospital quickly. Neil was in for the same thing over the spring and he was in for 2 weeks...he had a bleed though too...

xo,
R

[billybags]

Adam so glad you are feeling a lot better. I think that people on dialysis feel crap most of the time and take feeling tired as the norm, it will go away but the bloods say different. Look after your self.

[kristina]

Hello, Adam,

I do hope this does not happen again and
I am glad you are feeling better now.

Best wishes from Kristina. 

[sullidog]

I had a similar situation but didn't go that low. Mine was the FA at my old clinic lieing saying that he cut it off because of the new FDA regulations but mine was below that. Then he tried to say my body only can get by with one dose of epo before my hg goes back to normal. So glad I'm out of that center.

[lmunchkin]

Glad to have you back, Adam! Sorry this happened!  Im sure it was frightening for you!  Keep an eye on it.  If it goes below 10, have it checked, don't wait on Doc's to discover it, you bring to their attention!  Glad you are ok now!  Wow, that was Loooooow!

lmunchkin
 

[Whamo]

Anemia is a big drag, but it's great to feel better.