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: 4886

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

Kim Bradshaw is now a member of TransplantCafe.com - The Gift of eLife!
12 hours ago
Audrey Clark posted photos
19 hours ago
Clare mcgee commented on Clare mcgee's blog post Prograf hair thinning.
"Hi Vikie, Only just found your comment. not been on for a while too! Glad you got sorted. me well that is another story, I got desperate from the ongoing painful scalp & continued hairloss with no let up for 2+ solid years! I tried to go over…"
yesterday
Audrey Clark left a comment for Linda Desi
"I am sorry about your loss of your husband. Beside the septic shock incidents, are your new lungs treating you well?"
yesterday
Clare mcgee posted a blog post

Just once it would be really nice to get new medication and read the label WARNING " may cause permanent weight loss, Removes wrinkles & increase energy levels " Lol.. Oh boy that would be a refreshi…

Just once it would be really nice to get new medication and read the label WARNING " may cause permanent weight loss, Removes wrinkles & increase energy levels "Lol.. Oh boy that would be a refreshing change!!See More
Wednesday
Jona commented on Carol Jean Posner's blog post 40 years!
"Congratulations!! "
Monday
Jona liked Carol Jean Posner's blog post 40 years!
Monday
Jona and Karen Weddick are now friends
Monday
Susan Quinn is now a member of TransplantCafe.com - The Gift of eLife!
Sunday
David Goodman commented on Lili Feldman's group The Funny Bone
"A Tennessee State trooper pulled over a pickup on I-65. The trooper asked, “Got any ID?” The driver replied, “Bout whut?”"
Mar 21
David Goodman commented on Lili Feldman's group The Funny Bone
"The owner of a golf course in Georgia was confused about paying an invoice, so he decided to ask his secretary for some mathematical help. He called her into his office and said, “Y’all graduated from the University of Georgia and I need…"
Mar 21
David Goodman commented on Lili Feldman's group The Funny Bone
"On the average, an American man underage 75 will have sex two to three times a week, whereas a Japanese man the same age will have sex only one or two times a year. This is very upsetting news to most of my friends, as they had no idea they were…"
Mar 20
Carol Jean Posner posted a blog post

40 years!

I just celebrated my 40th Anniversary, post transplant last Sunday! These days it's more common for a live-related donor but still pretty darn good for a cadaveric transplant, especially considering when I got the transplant I was told it would last about 8 years, 15 at best!! Thanking God for the era I was born in and His grace and mercy on me. My mother was a WWII nurse and people with kidney failure just died back then. I am feeling great, I'm doing my bookkeeping work and working with the homeless and needy in the church, Bollywood Dancing and everything else I love. The performance season will start for me next month- so excited!! Tonight I'm going to a special dinner out with my husband to celebrate my 40th. Still with every year that passes, I wonder about the donor and how I could find out who he or she was.... See More
Mar 19
David Goodman commented on Lili Feldman's group The Funny Bone
"A painter by the name of Murphy, while not a brilliant scholar, was a gifted portrait artist. Over a short number of years, his fame grew and soon people from all over Ireland were coming to the town of Doolin in County Clare, to get him to paint…"
Mar 19
Carol Jean Posner updated their profile
Mar 19
Carol Jean Posner is now a member of TransplantCafe.com - The Gift of eLife!
Mar 18

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…

© 2015   Created by TransplantCafe.com.

Badges  |  Report an Issue  |  Terms of Service