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Message |
Gene
Member
Username: Gene2x
Post Number: 46
Registered: 11-2011
| | Posted on Friday, December 20, 2013 - 10:59 am: | 
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I posted about my bout with the BK virus last March and how quickly it came on and spiked my creatinine from around 1.6 to 2.5. The first treatment is generally reducing your anti-rejection meds. In my case it was eliminating Cellcept until I tested clean. That took about a month as it was caught relatively quickly and was still at a low level. My creatinine remained high until around October when it returned to under 2. My last test this week was 1.6, which for me is just fine. I'm relieved that there seems to be no permanent damage to my kidney.
I'm posting again because I hope everyone is diligent in insisting on getting tested for the BK virus. It came on so quickly between my monthly blood work that damage was done before I had any idea something was wrong. I didn't feel any difference and had no symptoms. When something like this happens, it's a helpless feeling that I hope no one has to go through.
Kidney Tx - Aug 4, 2011
VA Pittsburgh Health Care Center
Follow UPMC non-steroidal protocol
Live donor was my radio operator in Vietnam
1/6 match |
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Michael
Member
Username: Cheerfulmichael
Post Number: 2
Registered: 11-2013
| | Posted on Friday, December 20, 2013 - 10:40 pm: |
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I am nearing the end of my first year with a kidney transplant - I was transplanted on 1-10-13. I had a rejection episode after having severe neutropenia in April. At that time, I got BK virus (about 50,000 copies). I had two prednisone pulses a week apart and am now doing well. Getting regular lab tests can be very helpful. I was switched to rapamune after the rejection at my request. But I did have rapamune toxicity in the fall which was only detected by lab tests. |
Alaskagal
Member
Username: Cheathers
Post Number: 174
Registered: 06-2011
| | Posted on Sunday, December 22, 2013 - 07:00 pm: |
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Thanks for sharing this Gene and Michael! I have been tested every other month for BK, and it has been negative, and have been testing last summer, and this last week for CMV by PCR, waiting for the results. I don't have much symptoms right now, other than pretty tired, and if I am not religious about my diet, can get thrush and herpes pretty bad. This last week my regular labs revealed that my WBC is down to 2.5 again, and lymphs are high... I don't know what the heck it could be, but living in Alaska, while my transplant center is in Seattle is a pain.
How low was your WBC?
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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Michael
Member
Username: Cheerfulmichael
Post Number: 3
Registered: 11-2013
| | Posted on Monday, December 23, 2013 - 12:26 am: |
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On March 19, 2013, I was informed that my WBC were 1.3 and to reduce my Cellcept from 2000 a day to 500 a day. After two weeks it was 1.6. Then they took me off it totally. However, 5 days later it went to 0.8 and I was hospitalized. Since April and since being on Rapamune, my lowest WBC has been 4.8. I am thankful for having switched off of Cellcept. |
Alaskagal
Member
Username: Cheathers
Post Number: 175
Registered: 06-2011
| | Posted on Monday, December 23, 2013 - 02:20 am: |
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Wow, thanks Michael. In August they dropped my Myfortic down to only 1/3 of what it was... and I immediately started getting better, after thinking I was dying.... but then monday, my labs were back down. We shall see....
| Kidney tx Aug. 23, 2011 Seattle Swedish Hospital. |
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Gene
Member
Username: Gene2x
Post Number: 47
Registered: 11-2011
| | Posted on Monday, December 23, 2013 - 12:41 pm: |
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Hey Heather,
My white count was never in the normal range even when I was my healthiest as a younger man. It was always around 3.5 to 4. It currently is around 2.2 and that's lower than it was before I was switched from 5mg of Prograf per day to 3mg of Prograf and 3mg of Rapamune. The switch was made because I have peripheral neuropathy in my legs and feet (which I attribute to Agent Orange exposure in Vietnam) but my attending nephrologist thought it might be aggravated by the Prograf, which lists neuropathy as a side effect in some cases.
Haven't had any problems lately (knock on wood) but with my low white count I make sure that I'm tested for the BK at least monthly. If you're on a bi-monthly check and were to contract it shortly after blood work it would have almost two months to proliferate without a test. That's way too long for me. You might spot a rise in your creatinine at the next monthly check, but that could be caused by a lot of things and could take a while to pin point the BK. These viruses are scary stuff and I would rather error on the conservative side. I don't worry to much about CMV, which I know is a big problem for some of our group, as neither my donor nor I tested positive for it prior to the transplant.
As an aside, my transplant team is in Pittsburgh and I'm in Colorado. I've spoken or emailed to them maybe 5 or 6 times in the past 2 plus years since the transplant. I work with a local nephrologist as my attending doc and he consults with Pittsburgh when necessary. He's the go to guy when I have a problem. I don't know if you can do that where you are but it's a lot more convenient than dealing with someone 1500 or more miles away.
Kidney Tx - Aug 4, 2011
VA Pittsburgh Health Care Center
Follow UPMC non-steroidal protocol
Live donor was my radio operator in Vietnam
1/6 match |
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