White blood count below 1.5 for five weeks:Neupogen not working well

[Gardner-NY]

Have you experienced WBC super low? It took 7.5 months for my husband's hemoglobin to go above 10 (it was stuck at 7.4 despite my giving him 3X a week retocrit). A new problem came about in August and still with him low WBC. In Sept it got to .51 so I gave him his first Neupogen shot and the count climbed up but plummeted down, so shot#2 on 10/12 I gave him and the number is barely moving above 1.4. Today he is 11 mos post transplant and the past 9 months he has had many serious problems. On top of it all, 'out of the blue' we found out his military medical insurance "Tricare select" was removed from use b/c we did not know he must take Medicare plan B with plan A. He was 59 when Medicare was started and we thought we knew what to do with the options, but were not told if he did not take Plan B, he'd lose his military benefit. Working on that now to reverse. I'd like to hear from anyone with similar stories. Thanks for your stories and support.

[Tri4life]

Yes! I have had the white cell

count issue, I ended up in the hospital with sepsis. My hemoglobin took over 2 years to normalize. They finally figured everything out and I am doing good now. I wish you the best. Hang I there!

[Gardner-NY in reply to Tri4life]

Thanks for responding Tri4life. I appreciate your writing that you are doing well. My spouse has had many problems 'blood chemistry wise' and one rejection in FEbruary all since Feb 2019 to present time. His CMV virus came up positive in August and just last week got that number down to 0 with high doses of Valcyte. the hope now is the lowered Valcyte will improve the low WBC. We'll see. I rarely hear about people with a new kidney having so many problems as my spouse has had for the past 9 months nonstop. thanks for being honest. I wish you all the best.!

[Tri4life in reply to Gardner-NY]

Hang in there! I have heard of and known others who have had a ruff start. Our bodies are asked to a lot! Some respond quicker than others.

[Gardner-NY in reply to Tri4life]

HI Tri4life, I agree our bodies after a transplant are going through 'alot'. The first 2 mos after transplant, my spouse was doing amazing hemoglobin and WBC great, creatinine great and then it all went downhill in early FEbruary when a cyst in his PKD kidneys' burst for the 'first time ever' and 2 wks later he had his first low grade rejection and ever since all this, major blood chemistry issues. After a while, you feel like you are the only person that sits on a couch many hours a day due to extreme fatigue,low hemoglobin then months later that improves a lot then WBC goes super low to .51 to 1.25 now you cannot be outside even with a mask on and no visitors. I am my spouse' only careprovider and physically able to do everything needed for him and for our home and work full time still, but emotionally all this grates on you for the past 9 months b/c the transplant team will not say, patient X also had a rough 9 months and this was their outcome. I understand every one is different, but 'we' feel like a bottle in the ocean floating about. WE are super patient, but its not easy. He had chemo for 9 mos 30 yrs ago, and that was a walk in the park compared to this experience. Also his brother also had his kidney transplant for same PKD and journey was very different for him. So everyone Is different in their journey. I appreciate your writing me back.