Anyone have problems with low white blood cell counts post-transplant (heart)?

I know this is a strange question, given the fact that we are all on immunosupression drugs. I almost 10 months out from my transplant surgery and since March I have been having trouble maintaining a white blood cell count that my doctor was confortable with. At one point I even had what was essentially zero white blood cells but it has bounced around since then. I was taken off of Cellcept, and it was replaced with Arava, and my prograf has steadily been lowered (2mg twice a day now). But I'm still having trouble. Just yesterday, my doctor discontinued my Valcyte prematurely and halved the Arava dosage because my wbc was still creeping down.

Has anyone else had this problem? Was a reason discovered? What was the course of action? I trust my doctor, and he isn't too worried, but continues to try and fix it. Any insights?

Thanks
Michael

Tags: blood, cell, count, white

Views: 4382

Reply to This

Replies to This Discussion

Hi Michael,

I had quite a few problems with a low white blood cell count. I think I was about 3 or 4 months post transplant (kidney pancreas) they took me off antibiotics that I was on, eventually took me off of Cellcept (I was only taking Prograf for quite some time I think about a year), and eventually they gave me injections of Neupogen to bring up the WBC levels. Still with all that I had some troubles. I did however end up with CMV my donor was positive and I was negative. CMV can lower the white count and also the Valcyte you have to take to treat it lowers the count as well. It eventually straightened itself out, but it is just baretly at or above 4 now and I am 2 years post transplant. They just put me back on Bactrim 3 times a week so we will see how that goes. I'm not sure of any other ways they treat this condition and of course you have a heart transplant so I am sure there must be differences there as well. I know at one time my white count was coming up, looking pretty good so they did some kind of blood test and further broke down the white count they kept giving me Neupogen even though my count was acceptable to bring up some value that I don't know the name of. Had something to do with the bodies production of white blood cells. Okay not sure if I have helped any or not! I certainly hope they get it all figured out I know how frustrating that can be!

:-)Heather
Michael, it's not a strange question :) My white blood count dropped really low too! The doctors found out if was from cellcept, so they took me off that and switched me to rapamune. I took a little while for it to get back up there though. That was the case for me, but as you know everyone's body is different. Also, since your only 10 months out, it could be your bodies reaction to all the new meds they are stopping/starting...? Hope your wbc starts rising soon...take care.
I am currently having problems with my white blood cell being too low. I feel like crap from all the neupogen shots. :( I am in extreme pain.
yeah they took me off cell cept too, but didn't replace it with anything. and i'm on 2mg of prograf twice a day. you ever hear of that girl from austrailia....her white blood cells were low, she got sick, and her blood type switched to the donors blood type. That's insane.

RSS

Photos

Loading…
  • Add Photos
  • View All

Latest Activity

Alicia winter left a comment for Karen Weddick
"Hey how are you doing? How's your week going and thank you for add! Alicia"
17 hours ago
Alicia winter and Karen Weddick are now friends
17 hours ago
Fay is now a member of TransplantCafe.com - The Gift of eLife!
yesterday
Lili Feldman commented on Lili Feldman's group The Funny Bone
"I'm mailing you a white flag."
yesterday
Karen Weddick commented on Lili Feldman's group The Funny Bone
"Brilliant idea David!"
yesterday
Transplant Links Community posted a group
Thumbnail

New kidney - new life

For those people who have received a kidney transplant and it has turned their life around. Please share how your kidney transplant (recent or now) has made a difference to your life and those around you.See More
yesterday
David Goodman replied to Walter s's discussion what anxiety meds have you used after transplant ?
"What A. Front said..."
yesterday
David Goodman commented on Lili Feldman's group The Funny Bone
"I've torn out my alarm system & d-registered from the NeighborhoodWatch. I've got two Pakistani flags raised in my front garden, one at eachcorner and the black flag of ISIS in the center. The local police, State Police, FBI…"
yesterday
David Goodman commented on Lili Feldman's group The Funny Bone
"Frank always looked on the bright side. He would constantly irritate hisfriends with his eternal optimism.No matter how horrible the circumstance, he would always reply, "It couldhave been worse."To cure him of his annoying habit, his…"
yesterday
David Goodman commented on Lili Feldman's group The Funny Bone
"Cute, Karen!"
yesterday
A. Front replied to Walter s's discussion what anxiety meds have you used after transplant ?
"I've found things like yoga and meditation to be better for anxiety than drugs but. . . if cannabis is legal in your state, you could go to a dispensary and tell them that you are specifically looking for something to help with anxiety, My…"
yesterday
Alicia winter is now a member of TransplantCafe.com - The Gift of eLife!
Tuesday
Ali Barton left a comment for David Goodman
"Thanks for the sweet message David~ You are also an inspiration!! :)"
Tuesday
Ali Barton and David Goodman are now friends
Tuesday
Lili Feldman commented on Lili Feldman's group The Funny Bone
"I'll keep that in mind. Thanks David"
Tuesday
David Goodman commented on Lili Feldman's group The Funny Bone
" Old Butch    Fred was in the fertilized egg business. He had several hundred young pullets,' and ten roosters to fertilize the eggs.   He kept records, and any rooster not performing went into the soup pot and was…"
Tuesday

quick links!

 follow transplant cafe:

Find us on Facebook Follow us on Twitter Subscribe to TransplantCafe

Meet Members by Transplant Type

Heart Kidney
Liver Single Lung
Double Lung Pancreas
Intestinal Bone Marrow
Tissue Kidney / Pancreas
Other Transplant

Badge

Loading…

© 2014   Created by TransplantCafe.com.

Badges  |  Report an Issue  |  Terms of Service