I received my kidney transplant 8 1/2 months ago. The surgery went so well and the transplant has been a new lease on life in so many ways. As I have posted here, I have dealt with a near-constant onslaught of infections (C-dif x2, UTI, Sepsis, BKV, CMV), the most recent resulting in 2 weeks spent in hospital for both BKV and CMV. I am happy to say that the CMV is gone, although I continue to take medication for it prophylactically. Both viruses made their home in my transplanted kidney. A week and a half ago, I went to the transplant clinic for a follow-up appointment during which I had another Doppler ultrasound and met with a nephrologist. The trajectory of my transplant does not look good given the ongoing nature of the BKV. I was told that I may have my kidney for another year or possibly two, but the likelihood of my Creatinine returning to baseline is unlikely and the best I can expect is to get the BKV down to a low enough (undetectable) level to preserve kidney function for a while. I was gutted. I asked if there was any treatment whatsoever, and so far, a few treatments have been tried experimentally, but nothing with clear success. One possible treatment involving immunoglobulin (blood) is being studied (somewhat), but it relies on blood donated by thousands of people, and it is something I am not comfortable with in this current climate. If anyone here has had BKV in their transplanted kidney and has managed to hold on to their transplant, I would love to hear from you, especially if you were the recipient of any novel treatment or what have you. Thanks!
Transplant and BKV Realities: I received... - Kidney Transplant
Transplant and BKV Realities
I don't have experience with BKV but just wanted to say I'm sorry you're going through this and to send you a virtual hug and wish you and your kidney the absolute best.
Thank you, Blurple. Hugs are much appreciated. Blessings to you.☺
Sorry to hear this. I am waiting to go on the transplant list after a year in haemodialysis. I was extremely naive and just presumed a transplant was the answer to our prayers. Unfortunately I am now learning the reality of it all and its not the "golden ticket". If there is one thing I have learnt on this journey..its one step forward and about five back. Yet you keep going. I really hope things improve for you Blueskyangel 🙏. ...you have been through so much. Keep fighting my friend xx
Thank you, Ziggy. My father had two kidney transplants, due to PKD, and so I had a good idea what I was in for. It's being immuno-suppressed that makes transplantation difficult. It seems that I am going down the same path as my dad. This being the case, I must also be as determined as he was to never give up. I appreciate your prayers and I wish you all the best, Ziggy.😊
Sending Prayers and positive tnoughts that a successful treatment is found.
Hello BlueSkyAngel. I have BKV. The same kind of situation except I had no other issues with my transplanted kidney. It worked perfectly immediately. I was so elated. I finally had a normal creatinine level.
About the same time as you I found out I had BKV.
I started with an infusion of IVIG then about a year of another infusion every two weeks (I can’t recall the medication) and a pill,again, I don’t recall what it was (I’ll look back at my records). The other I’m still on is Levaquin 500 mg pill every other day.
My kidney is 10 years old! I finally don’t have any BK showing in my blood but it still shows in my urine.
I had my transplant and treatment for BK at Rush University Medical Center in Chicago.
Maybe your team can reach out to them for advice.
Don’t hesitate to PM me if you want to.
Unfortunately, I was just diagnosed with bladder cancer, I pray I don’t lose my kidney during my treatment!!
Metalminded, thanks for reaching out to me. I know of IVIG, but in this current climate (CV) I am not willing to put foreign blood products in my body. I read a study on it yesterday, so I am aware it has efficacy and you are further proof. Congrats on keeping your kidney for 10 years! I am sorry to hear of the cancer. I will keep you in prayer. Thanks for the PM offer. I may have questions as I continue to look into BKV. Blessings to you!
What concerns do you have about IVIG?
Let's put it this way: Not everyone bought the dominant storyline of the past few years. I am one if them. IVIG is composed of blood components (immunoglobulins) from a multitude (1,000 to 100,000) of people. Therein lies my concern.
My BKV got up to a half a million they did infusions once a week for a couple of months and hot it down to a range of 180 to 210
Hi Alkaline. Thanks for sharing. I take it you are referring to IVIG infusions.
My husband had his kidney transplant 4.5 yrs ago and had many serious problems the first 14 months after surgery; but he never had BKV. I just wanted to convey that I am so very sorry to hear about all this you are going through. I will add you to my prayer list that answers will be found to help your situation.
Thank you, Gardener. I really don't want to lose my kidney. Your prayers are most welcome.
I don't wish you to lose your kidney either. Big hugs that answers to help arrive soon.
UPDATE: I received a call from my Transplant Nurse who informed me that my DSA (Donor Specific Antibody) Test results, which is a biomarker predicting rejection, indicate that my kidney is not rejecting at present. So, this is a good piece of news that offers me encouragement. 😅
Hey, this is most excellent news. Sorry for the delayed response here. Been dealing with a bad case of Covid. Keeping my fingers crossed that the little guy keeps you going for a VERY long time!
Hi Ron! Thanks for your kind wishes. I remain hopeful that my little bean will prevail!!!👍🙏☺
PS. I hope you are well on your way to recovery! Remember Vitamins C and D and Zinc. I also recommend Quercetin if your doc approves. I will put you in my prayer list.
Hey thanks for the suggestions. I'll look up Quercetin to see what it is and ask my neph about it.
Hi. I thought I would post an update to my initial post. I am feeling well and am doing projects around the house that I have wanted to do for quite a while. It feels good to be able to do these things and I feel grateful. I don't share a lot with others aside from my husband. So, I have been grateful to have this forum to post about my experiences on this CKD journey. Thank you all who responded or even just read my posts. All we can do is "carpe diem"! Those of us with a history of kidney disease tend also to be anxious. I certainly go down that rabbit hole. So, thanks again for being here and offering support to one another. I wish you a beautiful week ahead.💐
hi , I got BK virus pretty soon after transplant they stopped one of the anti rejection tablets straight away and my levels dropped. I have my kidney 3 years and 3 months and have only ever been on Prograf 1mg twice a day and 5mg steroid daily. I was never told it would affect the lifespan of my kidney . Good luck !
Hi Winner! Thanks for your post. Wow! You are on some pretty low doses! That's wonderful! Did you receive a kidney from a live donor/relative? Your creatinine must have stayed at a good level, I'm guessing. I am glad for you! My creatinine remains elevated, so I think this is why I was given that prognosis.🙂
Hi,
It was a deceased donor and not a perfect match either. In Ireland they measure differently so my creatine has stayed around 150 ml and perfect is under a 100ml so not too bad I think 😂 Maybe go back to your nephrologist and have another look at your meds.
I hope it gets better
Hello, I just read your post about having BK virus. I am 15 years out from my first transplant, about to go back on the list once I get my screening tests reviewed and approved. I had somewhat high BK levels right after the transplant. The doctor said that me or my wife (my donor) may have had a false-negative pre-transplant BK test results, resulting in my high levels. I met with one of the nephrologists and he suggested IVIG or Leflunomide, which is a small pill to take daily. Interestingly, he suggested that I read up on them and choose myself, since both have about the same 50% odds of helping. I ended up doing both over time, and Leflunomide was one of my two immunosuppressants for most of these 15 years along with tacrolimus. They also lowered my immunosuppressant doses slightly when the BK was first found to help my immune system fight it. Over the years, if the BK started to come back, they would again adjust my dose slightly. I wasn't aware of what was actually in the IVIG, which you mentioned, just that it was something that they gave by IV over a few hours, and that the IVIG dose had to be mixed and made by a pharmacist based in part on my weight. It was a long time ago, but I think the IVIG came with 45-60 minutes of IV of saline, then a couple hours of IV for the IVIG itself, then another 45-60 minutes of more saline, something like that.
Hello OldTrekkie! Thanks so much for sharing your experience with me. This is the first time I have heard about Leflunimide, which a quick look online showed me that it is intended for arthritis but has been repurposed for BKV. (It makes me wonder what else is out there!) I have an appointment in 3.5 weeks and I will discuss it with the nephrologist. I wish you all the best with a 2nd transplant. Your story has given me some encouragement to know that your kidney lasted as long as it did in spite of having BKV. I appreciate your insight.☺
I can only say, I am sorry what you are going through. I have had my transplant for one month and a half, and I m terrified it will stop working and I’ll have go back to dialysis and that would be so very very depressing. I wish you all the best.
Hello ShyeLoverDoctor! Thank you for your kind response. I have been waiting for my upcoming appointment, which is in 5 days, to post an update here. I am doing much better. The first 7 months was difficult and I was beginning to feel discouraged, to be honest. I will say more soon. I congratulate you on receiving a kidney! Unless one lives out CKD, failure and transplantation, one never really understands the deep emotional experience and, speaking for myself, the transformation it brings about. I encourage you to move past fear and try to stay in gratitude. It is healthier and freeing - if this makes any sense! Send love and good vibes out to your new organ and celebrate the second chance you've been given. There will be ups and downs. It is part of the journey. Honestly, I think being positive, yet realistic, is important in such cases. I wish you the very best!☺
Thank you so much! Yes, people tell me to be positive, and I am! When my kidneys started going south, I asked my nephrologist, Should I be on the transplant list? And he said, No, no! But I talked to a renal nurse and she said get on that list and start racking up the days. I listened to her and she was right. Thanks to her, I had 9 months’ preemptive time. My nephrologist really didn’t think my kidneys were going to fail, but they did. He let me get to GFR 6 and I told him, I’m weak and tired all the time. He said, That’s the most common complaint I get, your numbers aren’t bad. I got a new doctor and went on dialysis. Since I live in Los Angeles, I got listed at UCLA. For my blood type, 7 to 8 year wait. Some people just sit and the list and do nothing. My sister was tested as a donor and failed. My college friend tested and failed. I decided to go to the Mayo Clinic in Phoenix, Arizona, where I am now. I found two strangers willing to give me their kidney! One was 60, and not surprisingly, she failed, her GFR was 80. But I was positive I was going to get a kidney this year!!! The second one was trying to get tested at UCLA and hadn’t even been able to make an appointment for an entire 5 weeks yet when I got “The Call.” I said yes! I was only on dialysis for 11 months and 3 weeks. The first week here was fantastic. Kidney started making urine immediately but not filtering. I only needed one week for dialysis until it was working, for most people it’s 2 - 3 weeks, I was discharged from the hospital and came to the clinic the next day. The medical assistance came to bring me back and looked shocked. He said Most people are in a wheelchair and you’re not even using a walker. Let me know if you get tired and I’ll bring you a wheelchair. The doctor said I was doing excellent. And then, it all went south. Five days later I had a complication, had to be re-hospitalized, and they almost had to remove my entire colon. Spent 4 days not eating with a nasogastric tube down my nose. Apparently my body metabolizes drugs fast, so they had to give me huge doses of tacrolimus, as in, 25 per day, wasn’t enough, they went up to 60 g. Yes, 60. Of course I got all the neurotoxic side effects - dizzy, tremor, nausea , mental confusion, sedation, blurry vision. They switched me to envarsus and it wasn’t any better. Insurance wouldn’t cover it so I paid out of pocket - $1,700 for one month. They tried to discharge me and I said I am drowsy and dizzy all the time, I can’t go home. They said, hire a driver and get a walker. I refused. So now I’m trying cyclosporine. The first two weeks my fiend C took care of me, then my friend L came, and C was supposed to come back but got sick with a fever and cough. C also posted a horrible facebook post calling me an indolent hypochondriac, and told the rest of my life’s story, using only my first initial. I was shocked and betrayed and asked him to remove that post. He flat out refused. My sister came for 2 days, then left. So now I am totally alone, in a strange city, where I have been for the last week, with one more week to go at least. Oh yes, and I have a huge collection of fluid in my abdomen the size of a softball, which they recommend doing noihing for, and will go away in 4 months. I really, really hope it gets better soon. No one told me it was going to be easy, but I didn’t think it would be this hard! If I wasn’t being positive, I’ve be in the corner crying. The only thing I’m dreading about being home is, everyone being so happy for me and my still feeling rotten.
I hope your next appointment goes well!
I am so sorry you are a cytochrome p450 fast metabolizer, that is indeed very uncommon so no doctor assumes it after a typical transplant operation. I hope you are feeling better with the new drug regiment.Do you have a good team of doctor back home for your continued care?
Actually I’m taking a drug called NuVigil, off label as an antidepressant. It’s a moderate inducer of the metabolism of certain drugs, we think that is what’s going on. I’m not giving up my antidepressant, I do not need to be messing with that! Nor am I willing to decrease the dose and just see what happens and maybe have to start a new drug. No thank you. We will have to work around my psychiatric meds, I do not want them changed. I actually got DNA testing done on Friday to see if I have the gene for fast metabolizing or is it just the NuVigil and will be so curious to get the results.
I am still waiting for the envarsus to work its way out my system. Couple more days! The dizziness is gone so that’s great.
Yes I like my nephrologist a lot, had him for about a year. He’s sharp, doesn’t talk down to me. If I send him an email, he usually responds the next day. The problem has been making an appointment at his office, he is super busy, takes about a month, but he told me, Send me a message next time and I’ll try to get you in sooner. Haven’t tried that yet.
My gastroenterologist knows me a long time,. He lets me text him.
My hematologist has known me a long time. If I call her office and leave her a voicemail, she’ll usually call that same day at the end of the day.
My dermatologist knows me well, been her patient since 1996, she found my melanoma 5 years ago. I’m a little worried because she’s talking about retiring, hopefully not!
Funny story. Many of my doctors are in the same huge medical buildings. I went to one office but it wasn’t open, still closed due to lunchtime. My nephrologist’s office never closest since he nibbles throughout the day and doesn’t take a lunch break, so I just went to his office and sat down to chill in the waiting room. After about 10 minutes, the medical assistant called my name, I look up and she’s holding my chart, waiting to take me back! I said Sorry, I don’t actually have an appointment, I’m just hanging out here.
Wow, ShyeLoverDoctor! You, indeed, have been through a lot. I was stunned to hear you were told you would have a 7-8 year wait! And to have had to travel to another state, too. Wow. You know the old saying, I am sure: What doesn't kill you only makes you stronger. I am glad you reached out to share your story. It can be cathartic to share, especially among those who get the struggle. I will keep you in prayer. ☺
Thank you. I had a ton of people praying for me, like, a ton. UCLA where I was on the list has one of the longest wait times in the country. Blood type there O is 9 to 11 years. California in general has really long wait times - too many people. The national average is 3 to 5.
Sorry to hear that you are in an unknown situation with BKV. Its so hard not knowing. I had CMV really bad 12 years ago…just 2 years after transplant. I was on Gangcyclovere infusions twice a day for 4 weeks in the cancer unit. My counts were 185,000 & docs were very challenged to save my life. After I got over the meds & the blood clot…they took me off of Myfortic …as it was too strong & they put me on Immuron. They put me on an antiviral med called Valcyte for 6 more months. I ate lots of green veggies, got good rest, & ate a real healthy diet to try & heal my gut from the virus. I have PKD & so I had both of my own kidneys removed. Its caused low blood pressure problems…but I keep my fluid intake up, stay well rested & exercise often. Eating healthy is our biggest & best option for our kidney I feel. I wish you all the very best. Think good thoughts…& do your best.
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