tag:blogger.com,1999:blog-8221974742406865423.post5018640935305032352..comments2023-07-24T07:15:06.767-05:00Comments on Surviving PKD: BK Virus: A RecapDavidhttp://www.blogger.com/profile/05425896520724063588noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-8221974742406865423.post-49213854353478582232015-09-17T01:29:17.571-05:002015-09-17T01:29:17.571-05:00Sorry to be so long to reply, Diagnosis was confir...Sorry to be so long to reply, Diagnosis was confirmed after a kidney biopsis in June. After a series of cidofovir treatments, the virus was totally eliminated by December.Davidhttps://www.blogger.com/profile/05425896520724063588noreply@blogger.comtag:blogger.com,1999:blog-8221974742406865423.post-33475044868113785592014-12-07T23:19:41.738-06:002014-12-07T23:19:41.738-06:00How long was your battle from beginning to end?How long was your battle from beginning to end?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8221974742406865423.post-28331422517526152922014-10-27T05:09:34.561-05:002014-10-27T05:09:34.561-05:00The kidney in the human body is too vital an organ...The kidney in the human body is too vital an organ to be ignored. Their principal role is to cleanse the blood off the impurities that accumulate as a result of other organ activities.The Manipal Group of Hospitals has extensive facilities for treating <a href="%E2%80%9Dwww.manipalinternationalpatientcare.com/our-treatments/transplantation/kidney/polycystic-kidney-disease-treatment/%E2%80%9D" rel="nofollow">Polycystic Kidney Disease</a> symptoms<br />Maniapal-Internationalhttps://www.blogger.com/profile/04803322520132694730noreply@blogger.comtag:blogger.com,1999:blog-8221974742406865423.post-38906111421813965962014-04-14T15:28:25.728-05:002014-04-14T15:28:25.728-05:00Thank you for this post. I was feeling alone in th...Thank you for this post. I was feeling alone in this.<br />In January BKV showed up in my urine with numbers of 936,109. Creatinine 1.10. BKV not in plasma. March BKV numbers in urine 372718924 and 1600 in plasma. Now today numbers are 92532764 and plasma is 5568. Creatinine is 1.19. What are acceptable BKV numbers? And how much did you doctor decrease your Prograf by?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8221974742406865423.post-55526108670420627052014-03-25T00:22:26.032-05:002014-03-25T00:22:26.032-05:00Thank you for the information. I just got diagnos...Thank you for the information. I just got diagnosed with BKV. It is good to know what your experience was and how long it took to get your levels back down. It is also good to know your creatinine levels. I'm so tied to that number, it makes me nervous to see it go up. Any problems with muscle pain and/or weakness? There are days when I can barely walk. Other days I seem to be fine though.daybydayhttps://www.blogger.com/profile/16367177902510696984noreply@blogger.comtag:blogger.com,1999:blog-8221974742406865423.post-50698825676245666652013-10-29T14:04:19.784-05:002013-10-29T14:04:19.784-05:00Hi Dave my husband is about to begin Cidofovir did...Hi Dave my husband is about to begin Cidofovir did you have problems with medical insurance coverage? Did you have reaction to the drug? We are very discouraged as this is 3rd kidney transplant with my donor kidney and BKVN only 4 months post transplant.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8221974742406865423.post-66274147566509871922013-06-18T16:04:33.273-05:002013-06-18T16:04:33.273-05:00Anonymous, I really feel your predicament. My gues...Anonymous, I really feel your predicament. My guess is that his doctor's reluctance is due to the damage that Cidofovir does to the kidney. Four treatments knocked my virus out, but my creatinine was over 5 when all was said and done. I wish I could do more than comiserate. Good luck.Davidhttps://www.blogger.com/profile/05425896520724063588noreply@blogger.comtag:blogger.com,1999:blog-8221974742406865423.post-9855895717291380062013-05-11T21:58:37.509-05:002013-05-11T21:58:37.509-05:00Hi, my father has the bk virus and received treatm...Hi, my father has the bk virus and received treatment four times now. His levels are still high (25k), and the doctor doesn't want to do another treatment. What are our next steps?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8221974742406865423.post-22847120969331662122012-06-13T12:09:57.509-05:002012-06-13T12:09:57.509-05:00Hi Debra. High Blood Pressure was a constant strug...Hi Debra. High Blood Pressure was a constant struggle and I learned to dread it. Push the doctors to be aggressive in treating the blood pressure. I'm not sure my team made the connection between the rise in blood pressure and the BK Virus, but I think they're connected! Good luck, stay in touch.Davidhttps://www.blogger.com/profile/05425896520724063588noreply@blogger.comtag:blogger.com,1999:blog-8221974742406865423.post-52369224033898313362012-06-11T08:45:13.025-05:002012-06-11T08:45:13.025-05:00My husband has been diagnosed with KK virus they h...My husband has been diagnosed with KK virus they have him on Leflunamide and have greatly reduced immune suppresant drugs now he has developed High Blood Pressure and last read was 161/92 as of 8:30AM Blood pressure medicine Norvasc 5MG is not workingDebra Simpsonhttps://www.blogger.com/profile/18131216822588084003noreply@blogger.comtag:blogger.com,1999:blog-8221974742406865423.post-7555509344732099642012-05-09T20:33:55.835-05:002012-05-09T20:33:55.835-05:00Thank you for this info! I have had the BK virus f...Thank you for this info! I have had the BK virus for around two years but my creatinine is 1.1. Leflunomide doesn't seem to be working well so now my doctors are checking into other treatment options. I am glad you are doing better!Melissa W.http://www.lovelyandroid.comnoreply@blogger.com