About
My name is Jeff, and I was born in 1963. I married Jackie in 1990 after we met in a psychiatric hospital (we both worked there). Kevin is our teen-aged son.
RN since 1989. I currently work as a Medical Home Case Manager in a very busy primary care clinic.
Dog lover. We have 3 dogs: Digger (GoldenDoodle). Chloe (Lab/Weimeraner), and the newest addition, my son’s Pit Bull Titan.
I have 2 major chronic illnesses: Polycystic Kidney Disease and Charcot-Marie-Tooth Disease (a form of muscular dystrophy). I’ve also had gastric bypass surgery successfully (I’m 200 lbs less than my pre-op weight from January 2002), and most recently received a kidney transplant on May 3, 2008 at Geisinger Medical Center, Danville, PA. Thank you donor and donor family!
Philosophy: Chronic illness is all in what you make it; it is what it is, and I won’t let it limit what I do…
Feel free to send me an email: jsheridan81 at gmail dot com
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Chronic Positivity RSS
CHRONIC POSITIVITY - Life with Polycystic Kidney Disease 
Hi! I tried to send you an email, but your link to your email address doesn’t work. I love your blog and lab table. I just received a kidney transplant on 7/5/08. I would like to ask you a few questions if you could email me or fix the link to your email address so I can email you.
Thanks!!!
Donnia
The email isn’t a link, it’s a graphic, so you have to enter it in manually. This was done to prevent spambots from getting the address.
Check your email.
Hi:) I came across your post with the random blog-search. I just wanted to leave a note, saying I find it incredible what you do. Even more so because you’re strong. You have my full admiration. Keep on keeping on. Take care.
Jeff,
Thanks for your comment on my blog. I like your blog title, a good start for a book perhaps. You are a fighter like Armstrong and a very good writer.
Mick
Thanks Mick. My “political” blog is at http://bohicaville.wordpress.com/. Check it out when you get a chance.
Hi, Jeff!
I just saw your blog.
Have you checked out HopeSquare at
http://www.hopesquare. org ?
Perhaps we can “meet” there!
Peace!
That’s
http://www.hopesquare.org
I like your blog very much. I am 4 weeks out from transplant and it helps to read your posts of those days. My stent comes out in 3 weeks, how difficult will it be? I;d like too read aboute keeping positive attitude but didn’t find it. Is it at thee old site?
thanks, Gayle
Gayle,
Congratulations! I hope the kidney is working well.
The stent removal was not bad a all. It took less than 5 minutes for me. The doctor inserts the scope, pulls out the stent, and you’re done.
I do have quite a bit of content at LiveJournal; most of it was from before and during dialysis. Keep us posted.
Jeff
Thank you, that is reassuring about the stent. Like you I lock onto numbers, the surgeon said take it out in 6 wks., the nephrologist said 4-6 wks. and it could get infected. I’m set for week 7, so I started to fret about infection and if it will hurt etc. I am learning lots from your blog, thank you!
Hi Jeff, your blogs are very inspiring to me and hit very close to home since I had a kidney transplant in summer 2006. I hope your sister feels better soon! My thoughts are with you both.
Natalie Curry
Thanks Natalie.
I’m still amazed at how much better I feel after the transplant; I’m getting more things done this past year than probably the previous 5 years.
Hope your kidney is working well. Thanks for reading my blog.
Hi Jeff…adding you to our blog roll as well. big hugs & Health Destiny & Derek
Jeff,
I am a nurse too. I have PKD. GFR above 60 and creatinine 1.0. My nephrologist prescribes Vit. D 50,000 IU per week. I say that is too high. My level was 67 so she reduced it to 50,000 IU every week skipping one week a month. I am nauseated and constipated. Toxicity? I’m putting a call thru to neph’s office.
Jessica
Jessica,
Thanks for posting.
Check your email.
For those looking for Vitamin D info, check this out: http://www.vitamindcouncil.org/
Jeff
Dear Jeff,
I happen to come to your website googling for side effects of prograf. I had a new kidney 3 years back. Doing good since then.
You have a really inspiring site. Wish you best for years & years to come.
-A
Thanks. I hope you’re doing well. The only thing bothersome for me with Prograf is hand tremors. It’s very noticeable within 1-2 hours, but fades as the day goes on. Good luck, and I hope we’re able to stay off dialysis!
Jeff, just found your blog and I have found it very informative and uplifting. I am 42 and have pkd. It has not yet progressed to the point on needing dialysis. Currently my creatinine level is around 1.6.
Having just finished reading your blog I have a new attitude concerning this disease and do not dread the future as much as I did. The main message I get from your experience is life does continues after a transplant and can actually improve. Best of luck and I will continue to follow your blog.
Thanks
Mark
Great site, thanks. It’s nice to have your insight into the labs. The numbers come and the numbers go and they get fuzzy over time. It’s been 20 years since diagnosis, 3 years since dialysis and 1 year since transplant. I did 13 years with one lousy kidney, and 1 year with no kidneys. Until transplant I had no idea how bad I felt. Best of luck to all! Dialysis and transplant are truly modern miracles.
Same with me; the transplant made me realize how poorly I felt as my kidneys went bad. Now, if only my appetite would decrease instead of increase!
HI, I had a VERY BAD reaction (late March 2012) to a medication which sent me into RENAL failure…a friend on another site shared your site with me. Thank you for the info.
Hello Jeff. I am a PKD patient and had a living unrelated donor kidney transplant on April 15th, 2009. I had a preemptive transplant when my GFR was 15. I have been very fortunate thus far with no detection of BK, Ceatinine levels between .8 and 1.1 and my only symptom being tacrolimus tremors and Tacrolimus aches and pains when my levels were high in the first 6 months post-transplant. On Wednesday of this week, I returned for my 4th anniversary checkup and I had >5,000,000 detection level of BK in my urine. The lab had orders to draw a BK blood plasma test and forgot. My Doctor clled the lab and ordered it and for some reason, the lab must have been unable to do so. My Doctor and I were both shocked that after 4 years of no detection, BK suddenly appeared. My GFR is still greater than 60 and my creatinine is still at 1.2 so for now the kidney appears to be stable. I am scheduled to return to the clinic next Wednesday for a dermatology apointment and BK blood tests and my Doc has already trimmed my Tacrolimus from 1.5 am and 1.5 pm to 1 am and 1.5 pm and Mycophenolate from 2000 am and 2000 pm to 1500 and 1500.
I always believe that knowledge is power and i do not fear what I know, I only have occasional fear of what i do not know. My question: I am uncomfortable not knowing my blood levels of BK. because I am on Coumadin I would need 4 to 5 more days to wean off of Coumadin to prepare for a biopsy. Is it a big deal to wait another 5 days for BK blood tests and another 5 after that if a biopsy is needed ? Thanks Jeff. Sorry about the length of my post. Blessings to you, Scott
Congrats on your transplant! You are a little over a year behind me; I received mine May 3, 2008 (cadaver donor).
I was negative for BK 11 months after transplant, and turned positive July 2009 with >39,000,000 copies in my urine, negative in the blood. I was on Tacrolimus 4/3, and Mycophenalate 500 mg every 12 hours. At first, they decreased the latter’s dose to 250 mg every 12 hours, and then stopped it. I had persistent BK in my urine up until a few months ago. Then, out of the blue, I had >1 million last month (urine, negative blood). I did a repeat today, and will have the results next week (urine only).
I’ve had times where my Serum BK (blood) has been positive, but the majority have been negative.
They have tried various treatments (there is no standard treatment for BK), such as Cipro and Leflunomide, but I still have it. I had low urine levels on the Leflunomide, but had to stop it because it caused damage to my peripheral nerves (probably due to a hereditary neuropathy I have). Since going off, the levels didn’t seem to be affected. Currently, I am on Tacrolimus only, with a goal level of 7-9 (trough). My current dose is 3 in the morning and 2.5 in the evening.
Your doc is on the right track; from what I have gathered, cutting back the Mycophenalate is the best way to treat this.
I have yet to have a biopsy; they have strictly been monitoring my creatinine, and it is at the same level as post transplant; 1.2 to 1.3 (usually 1.2, depending on my hydration status).
I asked my Transplant Surgeon (who manages my meds) about which levels are worrisome; he told me 2 million or over. Unfortunately, I didn’t ask if that was urine or blood, but I think it’s blood.
As with anything, I would discuss the biopsy with the physician. What will you gain by having a biopsy, and what does he plan on doing with the results? IF the answer is that he will know then if it’s affecting your kidney, but he wouldn’t do anything different, is the risk of the biopsy worth it? It may very well be, but maybe it isn’t.
Again, there is no standard treatment, and backing off the Mycophenalate seems to be the best way to deal with this. Your creatinine is still great, so it’s not likely that the BK is uncontrolled. Think trend here; if the BK is trending upwards, then that may be a concern. The one treatment that seems to be held in reserve for when BK is a threat to the kidney is Cidofovir, an IV anti-viral that has a potential to damage your kidney. Anecdotally, I’ve heard that it works with sometimes as few as 1 dose, and I’ve also heard of people where it doesn’t work.
IIRC, the BK Plasma is a qualitative test; it doesn’t give the exact number of BK copies, while the Serum does (quantitative).
I wouldn’t be too concerned about the blood test not being done. The important thing is that it’s been identified, and your doc can work on bringing the levels down. That seems like a huge dose of Mycophenelate; maybe he can shoot for a higher Tacrolimus level and lower the Mycophenalate?
It does seem unusual that you would turn positive this far out, but BK is, from what I have read, the result of an infection, usually a childhood respiratory infection, and the virus goes dormant in the urinary tract (an analogy would be the chicken pox virus going dormant in the nerve tracts and reactivating, which is known as Shingles).
BK virus has not been well known until recently, so it hasn’t really established enough of a track record to know if it is unusual to surface so far out from transplant.
I am much like you, in that I want to know the details of what is going on; knowledge is power.
I hope this helped. Feel free to write again if you have any questions, and best of luck.
Jeff
I received a phone call from my transplant coordinator yesterday. She had good news for the weekend. The lab had indeed processed my blood serum BK levels and they were negative for BK. The lab neglected yo enter that particular data in the system until Friday.
The reson my Mycophenolate doseage was so high is because I was offered a choice at the time of my transplant to be one of 50 patients to participate in a non-prednisone protocol. I have not not taken any prednisone at all in my 4 years. To compensate for no prednisone, the transplant center uses some additional Mycophenolate.
The plan now is to retest drug levels next Wednesday and retest BK in 30 days.
I began to workout on a treadmill faithfully 5 to 6 weeks ago. While it can’t be proven scientifically to this point, apparently higher levels of exercise can have a significant impact on how we metabolize our medications. My transplant coordinator said they see this frequently. Consequently, for me, the exercise partially caused my Tacrolimus levels to rise from the 5 to 6 range to 8.9 which in turn may have surpressed my immune system long enough to allow BK to reappear. My plan is to continue the exercise and retest for medication levels frequently. I figure the exercise and the lower drug dosage will both offer additional longer term benefits. Thank you Jeff for your time and efforts and willingness to share so generously and openly. I totally agree with you that our willingness to be open is power to those who share our PKD journey. Blessings to all, Scott
Scott,
Great news!
It’s interesting to see how other transplant patients are managed, and proves that there are wide variations (not saying that any particular approach is wrong). I had a “tolerogenic immunosuppresion” regimen as well. IV Campath during the surgery, 2 IV doses of Solu Medrol 500 mg (steroid), and absolutely no steroids since. I had to stop CellCept (Mycophenalate) due to the BK, and have successfully been maintained on Tacrolimus only(with a goal trough level of 7-9; currently 8/1) with no apparent rejection (again, I have yet to have a biopsy).
Your situation with the higher Tacrolimus level certainly makes sense as to the sudden appearance of BK. Remember, BK is dormant in the urinary tract of many people, although from what I read, it’s not clear whether the re-emergence is due to the donor kidney or the recipient’s own body. Interestingly, I’ve seen an article suggesting that BK may be a “co factor” in the development of Prostate Cancer.
I’ve had BK for almost 4 years now, and in the beginning, I used to be overly concerned about it and anxious to see my results. I’ve learned that for me, BK is a marathon, not a sprint, and am a little more lassaiz-faire about it, although realizing that potentially it could be problematic.
I’m glad people are using this blog as a forum for discussion, as I get people replying as far away as the Phillipines and Singapore. There’s not much info out there, so this information can hopefully help others.
Jeff