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: 4303

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 Pamela Sigmon
"Hi Pamela: 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…"
3 hours ago
Pamela Sigmon is now a member of TransplantCafe.com - The Gift of eLife!
yesterday
Caring 4 Carrie posted a blog post

The Month Of September is 'National Hispanic Heritage Month.'

According to Life Scan, Diabetes is the 6th leading cause of death among Hispanics/Latinos in the United States and the 4th leading cause of death among Hispanic women and elderly. Nugget: Exercise =Prevention.See More
Sunday
Caring 4 Carrie posted a status
"Someone's Story: This is Teresa. She's seeking a kidney donor. Kindly consider to visit her Facebook page. Thanks! http://j.mp/YyjiQ9"
Sunday
Lili Feldman commented on Lili Feldman's group The Funny Bone
"Gotta love him!"
Friday
Profile Iconolivia, Salma Jihyun Ahmad Qureshi, RogerGarage and 1 more joined TransplantCafe.com - The Gift of eLife!
Thursday
Parent of B replied to Parent of B's discussion Cardiac biopsy - how often?
"Tx for reply, Wendy! How often do you run Allomapping blood test? Allomapping is not yet the gold standard suggested/used by NewYork-Presbyterian, nor is it available where we're at now, so it's not really an option for us. My key…"
Thursday
Parent of B and Wendy are now friends
Thursday
Wendy replied to Parent of B's discussion Cardiac biopsy - how often?
"Wow I had to only to the biopsy for 6 months then they did the allomapping test. They now can tell if I have rejection thru blood work. Those are so uncomfortable! Prayers do her!! My transplant was in Nov 2013. Methodist Hospital in Houston Texas."
Thursday
Wendy liked Ali Barton's profile
Thursday
Wendy is now a member of TransplantCafe.com - The Gift of eLife!
Sep 24
Wendy liked Parent of B's discussion Cardiac biopsy - how often?
Sep 23
Caring 4 Carrie posted a status
"Someone's Story: This is Micah. He's seeking a kidney donor. Kindly consider to visit his Facebook page. http://j.mp/XJdwdO"
Sep 21
Caring 4 Carrie posted a blog post

The Month Of September is 'National Hispanic Heritage Month.'

According to the National Diabetes Educational Program, one in ten Hispanics over the age of 20 have been diagnosed with Diabetes. However, small changes in lifestyle living, e.g., healthier eating & exercising are key. Nugget: Exam=Prevention.See More
Sep 21
Ramona replied to Stefan's discussion Hello, I am new here
"Stefan, Hang in there - I have been caregiver to my husband for 7 years, and he's been through many surgeries and illnesses....and we both have our worries and down days.  I will keep you in my thoughts - and hope for the best possible…"
Sep 19
Parent of B posted a discussion

Cardiac biopsy - how often?

Hi,First post folks. I'll begin with quick background: My 15-year old daughter had a heart transplant 6 months ago after having severe dilated cardiomyopathy with left ventricular noncompaction (now known to be a result of a genetic mutation original to her). Anyway, transplant was at the highly acclaimed Columbia/NewYork-Presbyterian Hospital - to which we moved for waiting for the heart, transplant, and follow-up care. Now, 6 months after transplant, we moved back to our home. Our medical team has a different protocol for checking for organ rejection.Whereas NYP's protocol is cardiac biopsy every month for first year, every 2 months for second year, and every 3 months for third year, our hospital's protocol moves to every 3 months after 6 months, then every 6 months after a year and every year after 3. Bottom line- much fewer cardiac biopsies.I'm wondering if you know the different protocols in checking for solid organ rejection / heart - and how they differ from different medical…See More
Sep 19

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