Blood Troubles

[Brightsky69]

 
Does anyone else have this issue?? My hemoglobin is low…low very low. It was 6.4 the other day. My neph said that he thinks I should go in for a bone marrow biopsy. I see my hemo doc tomorrow. I did a ton of labs with him and hopefully he will have a plan.

My neph says it’s possible that I may have a ‘disease” completely separate from my kidney problems. My kidney is actually nice and stable right now. I am just having major issues with lack of blood.
I can’t imagine what the problem could be. I hopefully it’s something simple.

[jeannea]

That is confusing. If you have a working transplant your hemoglobin should be higher. I hope they can figure it out for you.

[SugarBear]

Within my first month I did need epo shots because my Hgb was low.  How long has it been since your transplant Brightsky69?

[Chris]

When I was hospitalized on a few occassions my HbG was low and they gave me epo again, which I hated due to the way the nurses gave it, bruised my arm to heck! Plus I am on iron also.
 
Hope your other doc has a plan.

[amanda100wilson]

I was on epo too while my transplant was working.

[Brightsky69]

The hemo doc has me scheduled for 2 units of blood. He gave me a shot of Aranesp today. He also took a myeloma panel and has me scheduled for a skeletal survey.

My creatinine has always run 2.0  since I received this kidney a year and a half ago. He has me on Aranesp every two weeks. Today was my first shot.

If it isn't one thing it"s another! 

[okarol]

I hope they figure it out. I am sorry you have had this challenge! That low hemoglobin can really make you feel tired!
I found this, maybe much of it you already know http://www.aakp.org/aakp-library/Low-Hemoglobin/
Good luck - take care! 

[Brightsky69]

Okarol – thanks for the article.

I just got out of the hospital a couple of days ago. They think I had a mild flare up of diverticulosis. Not fun….
While I was there they also did the work up concerning my hemoglobin. I had the bone marrow biopsy and have yet to hear any results. They pumped me full of iron and blood and antibiotics. My arms are torn up from the IVs. I HATE being in the hospital more than 48 hours. I was in for five days. 
I felt worse coming out than I did going in.

[Brightsky69]

Oh and in the meantime my creatinine was stable as usual.

[olivia]

Sorry for your problems. Sounds like they are trying to figure out the problem. I had pernicious anemia as a child, needed iron and vitamin b's after a blood transfusion.
After my transplant I had to have my first epo shot. Then had to have a blood transfusion. I hear others say they still need epo shots and iron after transplant. I hope you feel better very soon and I hope they find out if it is a problem other than kidney disease. Do you eat red meat, I try not to which is an issue too, cause red meat is supposed to be helpful for red blood cells. Good luck to you. 
Olivia

[Brightsky69]

I do try to eat red meat at least once a week.

I still have no results. This last trip to the hospital tore up my arms. None of the nurses on the floor were good at inserting IVs. A couple of them even admitted they were crappy with IVs. For one IV they had to call a nurse from ICU to put in my IV. I've been told I have excellent veins.

[Chris]

That usually happes at my local hospital, but I do have crappy veins in my arm. To bad they can not use the left, those veins are a poppin! The bad part is that you have to gothru X amount of nurses before they actually go get someone who is a pro. That nurse usually goes wt* is their problem, why can't they learn to do this right? is what I see in their facial experessions and breathing sounds.
 
Hope this is starting to turn around at least a little.

[Sax-O-Trix]

I have been anemic my entire life it seems, but mine has always been managed with OTC iron pills.  As far as I.V.'s  go, I am a hard stick.  I am VERY clear with the nurses who come at me with the I.V.  that they get one try and that they had better be the best on call.   I ask for the I.V. Swat team and never let a nurse stick me who has to look past the crook of my inner arm for a spot (same goes for blood draws).   When they start looking at my hands and upper wrists, I get real nervous and freak out.  I tell them to get someone else at that point.  I have usually scared them off by then anway, lol.  EMLA works if I pick the correct spot or if I am lucky enough to get  a lidocaine shot.

I hope you get to the bottom of your problem and the treatment is easy for you.  Keep us posted!

[Brightsky69]

Good morning -

I have been diagnosis iron deficiency anemia.

And my arms are still bruised up. They did use my left hand for an IV....NEVER again!! I am left handed.....my hand still feels swollen and puffy in the mornings.

[justme15]

well at least that is treatable.  I have severe anemia also... just got a blood transfusion on monday due to a hgb of 6.5.  they don't have an explanation other than kidney disease.  my iron levels are normal. i had a bone marrow biopsy that was also normal.   procrit shots weekly...sigh...yet i still need blood transfusions every few months it seems.  this sure does get old.

[Chris]

That's somewhat good news, good that they know the problem and hopefully the cause.


I am not a fan of IV's in the hand and wrist either

[Brightsky69]

Justme15 - my hgb was also that low. AND your right it does get old real fast. When I was in the hospital they gave me blood and iron.

I still haven't herd the results for the bone marrow biopsy. I see that doc on July 5th. I just want to stay out of the hospital for more than 7 months.
Seems like I am in for one thing or another every 7 to 8 months for 3 to 5 days. UGH!! enough already.
I am begining to see why some people are reluctant to get a transplant. Granted, I felt like crap on dialysis and the transplant makes me feel 99% normal. At least on dialysis I wasn't stuck in the hospital everytime I turned around.

[Chris]

Quit turning around and never look back Brightsky69 

[Brightsky69]

I have been in the hospital twice in about a month. Both times were stomach trouble 
While in there they did the bone marrow biopsy and I get the results tomorrow. (I hope) Last week when I was in the hospital my neph stopped in to say hi. He casually mentions that he saw the results of my biopsy and said it showed a small abnormality.  I am thinking WTF? I see the hemo doc tomorrow and hopefully he will lay it all out for me.

 

[Brightsky69]

Just back from the hemo doc.

Seems I am in the gray area of either having smoldering myeloma or myeloma. Or I could have MGUS. Of course they want to do more tests and I have to go for a second opinion up at UVA. My hemo doc doesn't think i have myeloma since my blood levels are so great right now.  We shall see.

It's always something. 

[cassandra]

Oh I'm sorry to hear that Brightsky69. I so wish that Drs would just keep their mouths shut about 'gray areas' for whatever, if they don't know. What your hemo doc says sounds more plausible.
I hope the next test are not very invasive, and that the solutions will present themselves.

By the way, just asking, why do you eat only once a week red meat?

lots of luck, and love Cas

[Brightsky69]

Thanks cassandra,

I have to go and get a skeletal survey and do yet another 24 urine collection and who knows what else down the line.

For awhile I had no appetite for read meat. Ground meat would upset me stomach. Usually I would have chicken. However, I think my appetite is changing...just got back from Smokey Bones restaurant. 

[okarol]

  How are you doing Brightsky?

[cassandra]

Brightsky how did you get on?

[Brightsky69]

I am still here. I had my visit with the hemo doc at UVA. He has diagnosed me with smoldering myeloma. They are not going to do much except keep a close eye on me. I will see my local hemo doc tomorrow. Ugh!!! I hate to go because he LOVES to take a ton of blood from me.    It's funny...they wanted to figure out why I was anemic by taking a gallon of blood from me for tests every other day.     

Right now they have me on Aranesp to keep my blood levels up. So far I feel pretty good. The kidney seems to be hanging in there too. I am still drinking a ton of water. 

If it’s not one thing it’s another.