On July 29th I celebrated my one year transplant anniversary! This is such a joyous occasion. I feel great. Labs were ran this Tuesday and creatinine came back at 0.72. Amazing.!!
The disappointing part is that I also found out that I am neutropenic. Again. I first developed neutropenia in October 2019 (three months post surgery). Resolved over the next two months with a reduction of Myfortic to 180mg twice a day (with higher dose of Prograf), removal of Valcyte, and one injection of Neupogen. Once things were stable we started to increase the Myfortic. Mid-April we increased it back to standard dose - 540mg twce a day.
Labs were ran twice in May, once in June and once in July. WBC count was between 4.5 and 6.5. Then this week my WBC count dropped to 2.5! I am flabbergasted as to why. There have been no med changes since April. Has anyone experienced a drop like this that isn't directly correlated to a med change?
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danielleblock
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I was severely neutropenic in January ( transplant 20/09/19) They removed Co- Trimoxole then MMF and nothing happened for 5 months . They monitored me. I think Neutrophils were at 0.8 at worst. Had bone m arrow biopsy a course of iron sulphate and then it improved. I was told that it improved itself without the aid of the extra iron.
I felt fine the entire time , but more anxious especially surrounding
Perhaps mine will return like yours and umm just prone to it. Blood tests later today will show wether I’m still stable.
. 72 Creatinine is very impressive - happy for you. In my case somewhere around 6th month, the WBC count dropped to 3K, but the Creatinine held out at 1.10.
The Team reduced the Mycophenolate to 500 mg X 2 / day (2+2 tablets) from 3+2 tablets prior, apparently 2+2 is known as half the dose. (Typically done after 1 year) & WBC bounced back to 7.5K
I just completed 1 year on July 24th still on same dose for Mycophenolate 500mg twice a day and Tacrolimus has been reduced to 1mg x 2 per day... as the Tacro levels exceeded the threshold in May 2020 and there was sudden reduction of GFR to 57 from 79. Then the Tacro got reduced to 1mg twice a day the GFR bounced back into the low 80s and WBC is holding out around 7.8K. ..
Frankly I am not sure on the logic of your Team to increase the Tacrolimus - as too much of it can impact the GFR adversely. Ask them the recommended Tacrolimus levels for year 2.
Perhaps the Mycophenolate equivalent needs to be reduced (don't listen me ... I am not a Dr. but I read a lot (prior/post transplant)
ALSO be super careful in your external interaction.. as your WBC is LOW, we all have to be cognizant of not making stupid moves of over confidence ... don't know what infection the next person around has. Good Luck and keep us posted. This a valuable thread of info.
Update: Myfortic is being reduced from 540 mg (three tabs) twice a day to 180 mg (one tab) twice a day. No change to Prograf. (Initially thought they may want to increase to make up for the decrease in Myfortic).
Labs will be drawn Tuesday to see if there is any improvement. Also checking for Epstein-Barr. Thankfully CMV and BK were checked last week and both negative.
On the subject of EPV/CMV/BKV loads (assuming that you had a live donor) was the IGg positive for the donor prior to transplant and for +ve for you after the transplant ? or -ve for both, in our case my wife and I both were lucked out - we both were -ve and so farI have been -ve post transplant, if the loads increase , they can possibly impact the GFR adversely.
I was IGg negative for CMV while my donor was positive. Had to take Valcyte for a while to prevent an infection. I was also able to take part in a CMV vaccine trial because of our mismatch! We both were IGg positive for EBV. This is the first time I will have my EBV viral load tested. No symptoms, but my doctors wanted to check due to the low WBC count and low neutrophils (0.65).
Yes, your team will need to keep an eye on viral loads. My wife & I wish you well. The important thing is that your creatinine looks good. which is Big Plus, the way I interpret is that these viral loads are dormant....and hope they always stay that way.
Hello danielleblock and Congratulations on your one year post transplant anniversary! My spouse of 42 yrs had to be put on Neupogen due to severely low white blood counts about 9 months after transplant. I believe it was a shot form and I gave it to him (this was last fall so my memory is shady due to him having so many medical problems 14 months post transplant). This medication was given twice and it did not work fast, but maybe its not supposed to. His white blood count numbers were very low Aug-December then it finally came up to normal. The medication was not given on an ongoing basis during this timeframe. I hope this is useful.
Thank you! I ended up going to the ER for some tightness in my chest on Sunday and blood work was done. Everything turned out to be fine, just a strained muscle. What was crazy is that blood counts came back completely normal!! Doing labs again this morning. If counts are still stable we will just count last week a a fluke I guess 🤷🏻♀️
I am sorry you had to go to ER, but glad you know what was wrong. I truly wish you good health. Kidney transplant can be a long road to full recovery. My spouse is 20 months after transplant and we wait for him to feel good. He feels worse now than before transplant which was Nov 2018. His energy and stamina are very lacking too, so we wait and see how things with the donated kidney work in the months ahead. He & I say often "it is what it is". The transplant for our lifestyle has turned our world upside down though. I wishyou all the best
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but I read a lot (prior/post transplant)
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