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: 4813

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

Prem Dayal replied to Prem Dayal's discussion Having a single Peg of Whiskey after liver transplant, will it kill me?
"Hope you take the same road for the health and live a long healthy life"
7 hours ago
Prem Dayal replied to Prem Dayal's discussion Having a single Peg of Whiskey after liver transplant, will it kill me?
"I had my transplant in September 2010 as well, I do live on a controlled life, and Now I have started enjoying it as well. I made a point to myself to stay happy and strong and somehoe that's really affected my health as well. It has just gone…"
7 hours ago
Suzanne Giacherio posted a status
"My liver turned 5 y/o on 2/11/15! Grateful to be alive and to have my wonderful husband. He has been with me every step of the way."
8 hours ago
Suzanne Giacherio replied to Prem Dayal's discussion Having a single Peg of Whiskey after liver transplant, will it kill me?
"Good for you! Be very careful with that new liver you have received as it will serve your body well. I was transplanted in 2010 and doing rather well but in a much more slower pace than ever before. Continue to celebrate life just take it easy on…"
8 hours ago
Prem Dayal replied to Prem Dayal's discussion Having a single Peg of Whiskey after liver transplant, will it kill me?
"Hey, I'm doing great. I did go ahead with the limited amount of consumption twice in January. Both times it was a good whiskey (Blue Label) and till now nothing bad has shown up."
8 hours ago
Suzanne Giacherio replied to Prem Dayal's discussion Having a single Peg of Whiskey after liver transplant, will it kill me?
"How are you doing now? I know this forum can be sketchy on being current - but here it is a little over a year later and there are no new comments from you Prem."
8 hours ago
Profile IconShankargouda Patil and Brittany Offutt joined TransplantCafe.com - The Gift of eLife!
11 hours ago
Charles Pruitt updated their profile
yesterday
Karen Weddick left a comment for Vince Abron
"Hi Vince: 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…"
yesterday
Karen Weddick left a comment for Catherine Lynn
"Hi Catherine: 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…"
yesterday
Jennifer Harris-Roush joined Terri Lynne's group
Thumbnail

Relationships and Dating

Having a transplant, or waiting for one can affect a relationship and if you're single, makes dating interesting. Here is a place to share your stories, questions and anything else about these topics.
yesterday
Misty Mountain and Mohamed Rouibah are now friends
yesterday
Misty Mountain posted a discussion

Anyone experience acute rejection past the 1 year mark with double lung transplant?

My dad had a double lung transplant 1.5 years ago after suffering with bronchiolitis obliterans organizing pneumonia and pulmonary hypertension for over 7 years. Last week he was submitted to the hospital for acute rejection. His doctor told us that they only see this in 1% of patients. I'm wondering if anyone here has experienced this or knows of someone who has and what the outcomes were? Right now my dad's biggest fear is that there will be permanent damage to his lungs and he will be back on oxygen permanently. I honestly think he fears that more than dying. As you can imagine this is devastating to him and my family. On top of the emotional devastation comes the heavy burden of financial stress. For a shameless plug: if you are able to, please donate to help pay for his medical expenses and/or share the below link with your network.We are truly grateful for any help, support or prayers that you can offer for my family.Thank you!…See More
yesterday
Misty Mountain posted a blog post

Acute rejection 1.5 years after double lung transplant

https://www.tilt.com/campaigns/the-mountain-familyMy dad had a double lung transplant 1.5 years ago after suffering with bronchiolitis obliterans organizing pneumonia and pulmonary hypertension for over 7 years. Last week he was submitted to the hospital for acute rejection. As you can imagine this is devastating to him and my family.On top of the emotional devastation comes the heavy burden of financial stress. If you are able to, please donate to help pay for his medical expenses and/or share the below link with your…See More
yesterday
Vince Abron is now a member of TransplantCafe.com - The Gift of eLife!
yesterday
Lili Feldman commented on Lili Feldman's group The Funny Bone
"Oooooh noooooo!"
Sunday

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