Question: bone marrow biopsy after transplant

[Gardner-NY]

The kidney transplant appointment yesterday did not yield good news for my spouse as we hoped about his declining hemoglobin numbers the past 6 months and now white blood count went down from 7.27 last month to 1.59 yesterday. CMV blood lab taken yesterday (last time negative and hope this is negative again). Anyway, my question is: has anyone had a problem with low iron stores/low hemoglobin for 6 months or more and the bone marrow biopsy showed a problem? Thanks.

[Dara3351]

My wbc went down very low and my meds were changed. Prednisone was added but only 10 mg. Mycophenolate was reduced. Tacrolimus was adjusted 1 mg in am and 1.5 in the evening. I also adjusted my diet looking for iron rich foods, as well as going back to a plant based diet.

[Gardner-NY in reply to Dara3351]

Thanks Dara3351 for writing. the high iron foods have been frequent for 6 months now. WE know if the CMV test comes back negative 'again', then they plan to reduce slightly with care his 'cellcept' antirejection med. He is on 195 mg iron pills a day for a month now hoping his low iron stores and low hemoglobin would improve (6 month problem now) and so far this is not helping, so he's instructed to do it for another 30 days since he is tolerating it alright, and if does not work, next step is infusion of iron by IV several times a week for ? weeks. His creatinine climbed in the past month too from 1.6 to 1.99, so that is being watched too. IT's just been hard for me emotionally at times . We both say this is a harder journey than when he had chemo for 9 months 30 years ago. I see muscle atrophy happening slowly the past 6 mos too. Each day I play mind games to keep positive, but yesterday I did poorly at that. thanks for writing, I have faith that things will improve, but not on my timeline.

[Dara3351 in reply to Gardner-NY]

It’s a journey. I look at it as a gift. I too have good days and bad days but stay positive. I was going through these bursts of vomiting each month. Not sure if it was the meds or what I was eating. I was worried with the vomiting what it was doing with the immunosuppressant drugs. So now I went back to eating plant based foods and walking more. So far it has been working. Still getting labs each week and seeing improvement here and there. Take one step forward and two steps back. Hang in there. We are all supporting each other!

[Gardner-NY in reply to Dara3351]

Thanks for your response.The first 2 months after transplant, my spouse was using my treadmill 3-4 times a week and that all ended early FEb when a PKD cyst burst and then later in Feb he had his first low grade rejection and put in hosp a week. That is when hemoglobin low was found and it has stayed low despite all the changes. So no more walks he is doing. Thanks for sharing, it means a lot.