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: 5517

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

Karen Weddick left a comment for ATUL YADAV
"Hi Atul: I’d like to welcome you to the Transplant Café. You are now a member of a warm, friendly, supportive, caring, understanding, sensitive and informative site. If you have any questions please don’t hesitate to ask and…"
10 minutes ago
Karen Weddick left a comment for Kim Jacques-new profile
"Hi Kim: I’d like to welcome you to the Transplant Café. You are now a member of a warm, friendly, supportive, caring, understanding, sensitive and informative site. If you have any questions please don’t hesitate to ask and…"
11 minutes ago
Profile IconKim Jacques-new profile and ATUL YADAV joined TransplantCafe.com - The Gift of eLife!
4 hours ago
ATUL YADAV posted a discussion

Resons for Kidney rejection after 5 1/2 yrs.

What are the probable reasons behind rejection of transplanted kidney after 5 and half years ?See More
13 hours ago
Karen Weddick left a comment for Dawn J. Adams
"Hi Dawn: I’d like to welcome you to the Transplant Café. You are now a member of a warm, friendly, supportive, caring, understanding, sensitive and informative site. If you have any questions please don’t hesitate to ask and…"
Wednesday
Terri Lynne posted a photo
Monday
Dawn J. Adams updated their profile
Monday
Terri Lynne replied to Terri Lynne's discussion 23 year liver transplant rejection in the group Liver Transplants
"Hi, still in rejection, posted update on my page. I wasn't sick or anything. I felt fine, just went in for labs like usual and here I am 3 months later. Thanks for the concern and checking in on me! I am getting labs again Thursday. Terri"
Monday
Terri Lynne posted a blog post

STILL IN REJECTION

I haven't posted since this started but still in rejection. September 11th, it will be 3 months since this started. It kind of was getting better so doc lowered prednisone to 15mg and let me go a month till next labs. I had those labs August 17th and they went up, a lot. He raised my Prednisone to 40mg for 7 days, 30mg for another 7 days. I am almost done with the 30mg and it will go back to 20mg. I am getting labs again Thursday. I've pretty much been getting labs every two weeks since this started.You can go to my main blog to read the updates to this.http://terri7291.blogspot.com/Current med listPrograf 3mg twice a dayCellcept 500mg twice a dayPrednisone 30mg once a dayMotropolol 25mg once a day (blood pressure)Terri24 Year Liver Transplant SurvivorSee More
Monday
Terri Lynne updated their profile
Monday
Dawn J. Adams is now a member of TransplantCafe.com - The Gift of eLife!
Monday
Miguel sewer and Karen Weddick are now friends
Sunday
Miguel sewer left a comment for Miguel sewer
"Thanks so much for your encouragement after 27 years post transplant,  please let me know how I can encourage others. Miguel"
Sunday
Janet Hart and Paula Maine are now friends
Sunday
Don Kosolofski liked Karen Weddick's profile
Sunday
Profile IconMiguel sewer and Paula Maine joined TransplantCafe.com - The Gift of eLife!
Saturday

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