CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

I’m sure THAT got the attention of all of the doctors, PA’s, NP’s, and RN’s who tirelessly tell people that antibiotics don’t get rid of viruses. But in my case, an antibiotic is being used to suppress a virus.

I’ve been positive for BK virus since July, 2009. The previous April, when they were still testing my level of immune suppression (when the insurance still paid for the Immuno-Know testing), I was overly suppressed, so they cut back my dose of CellCept, and 3 months later, my BK urine was positive for >39 million copies. They stopped my CellCept, and it dropped precipitously, but never cleared. My blood also had BK present as well. I was treated that Fall with Cipro, and it cleared from my blood. My transplant coordinator was not at all aggressive, and let it slip. I eventually was put on Leflunomide, and that brought my levels down even further.

This past Spring, when I had my Prograf toxicity and renal failure, the levels went way up. This was a direct result of the negligence of my Transplant Coordinator, who never told the doc I was put on Fluconazole, which put my Prograf level in toxic range and caused Acute Renal Failure, and thus, the oversuppression of my immune system. So, I “fired” her, and chose a TC who I KNEW was very compulsive, and thus would manage my transplant appropriately. She began addressing the lingering BK, and my Leflunomide was doubled last month to 40 mg daily.

I had my labs done this week, and my BK urine level dropped from 34k copies to 600, and 100 copies in my blood.

So I got a message today to call her, as the Transplant Surgeon wants to start a 2 week course of Cipro again, and also get labs again in 2 weeks, including a “lymphocyte subset”. I don’t know why, but my first thought was “cancer” (a risk of the Prograf, which is used to suppress my immune system and prevent rejection of the kidney I so love). When I spoke with my TC, she explained that this lab will specifically check my CD4 level, and thus give an idea of the level of suppression. Phew……

My problem is that I analyze too much. There is a risk of achilles tendon rupture with Cipro, and I actually know of a case where a patient was on a prolonged course of Cipro, and this happened. (and no, he/she is NOT one of my case management patients) So, I thought about it, and the risk of tendon rupture (and neuropathy, which I already have), is less to me than the risk of losing my kidney to BK virus.

As the field of BK virus is still in it’s infancy, there is no standard treatment, but Cipro (and other quinolone antibiotics) are used successfully; Leflunomide also seems to suppress the virus as well. since this virus is dormant in the urinary tract for life (similar to the chicken pox virus being dormant in nerve tracts for life), I will never get rid of it, but hopefully will be able to suppress it into dormancy.

As for my other labs, that’s a different story. The proverbial black cloud made a visit to me this past week, and among other things, the lab did not collect all of the blood that was ordered. My BUN and creatinine were done, along with my Vitamin D and Lipid panel (all good; creatinine still a 1.1, which is my baseline). They didn’t get a Prograf level, and my BUN/Creatinine were added on after the fact.

As mentioned in my previous post, I started a new job. Same company, but I’m “embedded” now in a Medical Home site, rather than covering for a variety of offices. It’s been tough lately, as we are getting a LOT of new patients, and my caseload is already just about maxed out. I’m working 45-50 hour work weeks; fortunately, I still love my job.

Good news on both fronts.

I recently had labs done (although it seems like I am ALWAYS having labs done).  I’m on an every-other month schedule for blood work, but still get monthly checks on the level of BK virus in my urine. My creatinine is rock stable at 1.1, and my BK virus levels went down quite a bit since October; from 9200 to 1200, which is great! Hopefully, I’ll soon be seeing negatives. If/when that happens, it will be interesting to see if they want to put me back on CellCept. I haven’t taken it since July 2009, and there are no signs of rejection in my labs (I’ve never had a biopsy), so I’m hoping they’ll just keep me on “monotherapy” (Tacrolimus/Prograf). My Tacrolimus level is holding steady as well; 7.5 last month and 7.2 in November.

This past week, I went for my final Orthopaedics follow up from my April foot surgery. I’m walking great,and all I wear know on the left is a hard plastic shoe insert. I have to go for a slight adjustment for that, but it’s working out fine. It is a little weird being able for my ankle to bend while I’m walking, but I’m used to that now. I still wear the orthotic on my right, which keeps my foot in a set position, but I’ve been wearing that for 5 years now, so I don’t even notice that.

They did x-rays of my left foot before my appointment this week, and I was able to get a copy of before and after films, which I’ve posted below. (clickable thumbnails)

The doctor was a little disappointed that my left foot isn’t fully corrected, but I’m ecstatic with the result. He was only able to correct the first 2 foot bones, as I had an infected ulcer on the outside of my foot; doing so would have risked infection of the hardware.

I just finished a course of antibiotics.  Several weeks back, the day after the “big” Nor’easter, I was on my way into the house where I work as a nurse, and slipped on some black ice.  I landed on my back, and my elbow came down pretty hard on the road.  I had a superficial laceration of my elbow, and it hurt, but I just cleaned it out and went on my way.  2 weeks later, I went to my doctor, and was diagnosed with cellulitis of the elbow and bursitis.  The pain is finally gone, but it’s still a bit red, so I’ll have to keep an eye on it for now.

I am also going less frequently for transplant follow up; every 4 months, rather than 3, so my next appointment is January. I’m hoping that there won’t be any more repeats next year as I had this past year (unplanned surgery, acute renal failure).

On the work front, I’m switching positions within the same job. Rather than being a “float”, I’ll be working permanently at a clinic near my home.  It will be nice to have a set caseload of patients, rather than covering different offices each week.  I was supposed to also be doing case management in West Virginia (via phone), and even received licensure in that state, but that went by the wayside when I took the new position.  Ironically, I used to be a teacher in West Virginia, in the same area as the setting for the movie “October Sky”.

I had my monthly labs this past week, and my creatinine of 1.2 is now back to normal!

The BK virus is another story.  Although still low at 84k copies in my urine, it is up from last months 1,100 copies.  At that time , they had lowered my Prograf dosage to 2mg/1mg (every 12 hours).  At the beginning of June, they resumed the dose of 3mg/2mg that I had been on prior to my hospitalization for the Prograf toxicity/Acute Renal Failure.  This current 84k reading reflects the current dosage, and illustrates how reducing immunosuppression will reduce BK virus.  But balancing immunosuppression and BK virus levels is a tightrope.  Too high a dose of Prograf means elevated BK levels; too low a dose risks rejection of the kidney.  So, as long as my levels of BK stay low, and don’t cause any kidney damage,  I’ll be ok with that.

Despite the problems afterwards, the foot surgery was a definite success.  I finish physical therapy, and although it’s still swollen, I can walk on it without the pain I had prior to surgery (and even prior to the infection).  I saw 6 sthe Orthopedic surgeon this past week, and he is pleased with how it turned out. I did get a peek at the x-ray, and I have 6 screws and 2 plates at the first toe foot bones on the top of my foot, and a 3-4″ threaded bolt going straight up through my heel and (presumably) into either the tibia or fibula (leg bones).  I sure would have liked to see a video of THAT surgery.

I’m still wearing the Bledsoe boot, but was fitted for a shoe insert on Wednesday.  I’m fairly sure that this will be enough support, so that I will no longer need the AFO that goes up to just below my knee, as I used to wear prior to surgery.

Well, I’m almost 6 months into my new job, and I’m just now able to do things without asking questions every 5 minutes. I was very comfortable in my previous job, having done it for 17 years, but this job is definitely more intense.  In addition to the volume of work, I’m also having to learn the adult disease processes, as well how to do case management. There were several nights this week where I came home from work, and after supper, did another 1-2 hours.  But it’s not bad when you have a job that you love.

There is a delicate balance involved with a  kidney transplant, as proven by my recent “medical adventure”.

As my readers know from last month’s post, I recently had foot surgery that involved removing part of the outside bone of my left foot due to infection (along with major reconstruction of my foot).  Having been on antibiotics for close to a month, I developed a yeast superinfection in the deep tissue of my foot.  The Orthopedic Physician’s Assistant consulted with an Infectious Disease physician, and the recommendation was to place me on Fluconazole 200 mg daily for a month.  It turns out that there is a major interaction between that drug and Tacrolimus (Prograf), and I was hospitalized for Acute Renal Failure from Prograf toxicity.  When the 2 drugs are used together, a dose adjustment may need to be made on the Prograf. (after my transplant, I was on Fluconazole 150 mg  once weekly for 4 doses; in this case, a dose adjustment was not necessary)

Everything is returning to normal: my last creatinine was 1.3 (my baseline is 1.1-1.2), my Prograf level is 5.2 on 2 mg/2 mg (previous dose 3 mg/2 mg), and the BK virus is once again out of my bloodstream and a level of 11,000 copies in my urine (it had been 912,000 copies in my urine and 1,000 copies in my blood last month when I was hospitalized).  The only physical residual effect that may be related to the Prograf toxicity is that I’m still having burning and numbness in my hands (although that could also be from my peripheral neuropathy, Charcot-Marie-Tooth disease).

There are some lessons to be learned from what happened to me.

First, TRUST NO ONE.  I had emailed my transplant coordinator the day I was placed on Fluconazole, and she replied back that she would tell the surgeon.  She did not do that.  The PA who had prescribed the Fluconazole apparently failed to heed the interaction warning, and despite me asking, also had not touched base with the transplant surgeon before prescribing it.

Second, BE VIGILANT WITH ALL OF YOUR CARE.  I failed to look up Fluconazole before taking it.  And while it’s up to the healthcare professionals involved in our care to ensure that these things don’t happen, mistakes and oversights can and do occur.

Third, USE ONE PHARMACY.  I made the mistake of having the Fluconazole filled at a pharmacy closer to my home.  This pharmacy had no record of me being on Prograf, and thus had no reason to warn the doctor  of the interaction.  Had I driven another 15 minutes to my regular pharmacy, the interaction may have been caught.

And while there have been many advancements in the field of kidney transplants, there is, and always will be, the possibility of error.

We all must take ownership of what is done to maintain our transplant if we want to keep our kidney healthy and functional.

My kidney transplant has now temporarily taken a backseat to another chronic problem-my foot.

Within the last 2 months, I’ve had 2 bouts of foot and leg cellulitis (infection) that just wouldn’t clear up.  Due to the peripheral neuropathy (Charcot Marie Tooth disease) and a pressure point on the outside of my left foot from a protruding bone callus after a fracture from 15 years ago, I developed a pressure ulcer on the bottom of my foot.  It turns out that the cause of the cellulitis’ was an infection of the foot ulcer, which turned out to be a superficial infection (Osteomyelitis) on the 5th metatarsal (foot bone).
I had gone to my PCP for initial treatment, and he thought the infection was due to an open are of skin on my shin.  I was on Keflex, and it seemed to resolve, but within a day or 2 off of it, the infection was back.  I went in for 2 days of IV antibiotics (Ceftriaxone) to the clinic, and it didn’t really do much.  I had then gone to the Podiatrist, and he debrided the ulcer, noting that it was fairly deep, and was draining amber colored fluid. He switched my to Doxycycline, and it was 90% improved from Friday to Monday. He debrided it and then packed it, and it was back to where it was before within 2 days.  I was then sent to the Orthopaedic Surgeon, who immediately diagnosed it as Osteomyelitis, and planned surgery.  But first, I was casted, and made non-weight bearing until the surgery (10 days).

In addition to debridement of the infection, he felt that I would need some reconstructive surgery as well. He brought in a colleague, who felt that it should be a 2 stage procedure, so as to avoid infection of the reconstructive aspect of the surgery.  The surgeon (Dr. Cush), felt that I should get it all at the same time, to avoid pressure on the original site of infection.  I opted for a single stage surgery, but for a different reason. The Transplant Surgeons always told me to avoid unnecessary surgeries.  Dr. Cush assured me that the reconstruction would be away from the infection site.

So on Tuesday, I had debridement of the pressure ulcer and bone, removal of part of my 5th metatarsal, shaving down of the protruding bone callus, osteotomies (bone removal) of toes 1 and 2 along with placement of screws and plates to straighten them out, a screw (and maybe a plate-can’t remember) up into my heel, lenghthening of the Achilles Tendon, and transfer of the Peroneal Longus tendon to the Peroneal Brevus tendon to straighten out/strenghten my foot.

The pain (and nausea) after the surgery were severe; I didn’t have a PCA pump (patient controlled analgesia), and I think that would have made a difference).  By Wednesday, I was feeling better, although still on rather frequent Oxycodone and IV Morphine, and by Thursday, I was ready to go home.  I’m doing well now that I’m home. It’s difficult not being able to bear weight on my left foot at all. We take our 2 legs for granted until we can’t use them.  Getting out of a chair is not easy, nor are steps.  I’m fortunate that there is a device called a knee walker-much easier to get around than crutches.

I just received a call today from the surgeon’s office, and the culture grew out yeast.  So, I will now be on fluconazole for the next few weeks.

As for my labs, my creatinine is stable at 1.1-1.2 (it was 1.2 this week, but my hydration status wasn’t the best).  My BK virus is up slightly from last month to 7700 copies in my urine.

Till next month….

The level of BK virus in my urine is down again; from 11,300 to 9600. Fortunately, my creatinine is still stable at 1.1.  All of my other labs are stable as well. I’m a little late posting this month, mainly because it took me over a week to get my results, and also with being busy with other things going on.

Last week, I had the first major infection since my transplant in May, 2008.  I had a very small break in the skin of my left shin, and a scab formed over it (about 2-3 mm).  My leg started hurting on Thursday, and I thought it was a combination of my orthotic being too tight, and possibly a recurrence of phlebitis.  I was in class that day at orientation, so I took off my orthotic at lunch, and continued on.  It was a little bit red by Thursday night, so I had planned on getting an appointment with my PCP for Friday.  I texted my friend the next day, and she got me an appointment. I went in to work, and then left for my appointment, expecting to be gone for only an hour or so. However, my leg had gotten worse in just 2 hours, and by the time I got there, my leg was angry red, hot, and painful from my foot to halfway up to the knee-I had cellulitis of my foot and leg.  I was given IV Ceftriaxone in the office (an antibiotic), and a prescription of Keflex to start the next day. I went back to work, but my co workers told me to go home and rest my leg (it was my first day off of orientation. I rested it all weekend, and by today, I still have some pale redness and minimal swelling, so it’s definitely much better.  Given my immunosuppression, I’m lucky I sought treatment when I did.

My new job is going very well. There is still a lot to learn, but I’m positive I made the right decision.  I figure it will take a good 6-12 months until I’m comfortable doing it, but I expected that going in.

I miss my co workers at my old job, but still get to see them on occasion.

As I sit here typing, my wife is on the couch sick with a sinus infection and probably a cold on top of it.  It made me think back to when I had a cold last, and I can’t remember when I did.  When my kidney function began worsening and I started Calcitriol, I began researching Vitamin D.  I’ve found several articles (although not much research to back it up) that suggest that Vitamin D has an antibiotic type effect.  I started taking Vitamin D supplements after my transplant (2000 IU daily, plus another 800 IU in my calcium and multivitamin). Could this be the reason I don’t get colds?  Having worked in Pediatrics as an RN for the past 22 years, plus 3 years prior to that working with children on an inpatient psychiatric unit, I surely have been exposed to much more than the average person, but yet my immune system is suppressed by the meds for my transplant. And yet, I don’t get colds (I do, however, get sinusitis).  Could it be the Vitamin D?  I’ve had my level checked, and it’s in the low 30 range (normal), so my supplementation is appropriate.

That’s all until next month.  Stay healthy, and Happy St Patrick’s Day!

I had my quarterly appointments this week with the Transplant Surgeon and Transplant Nephrologist; everything is stable (except I’m up a few pounds since my last visit; have to work on that).
The BK virus level in my urine plummetted down to 11,300 from last month. Yea!
I start a new job on Monday (1/31-ironically, my very first job ever (as a paper carrier), was started on this date in 1974.  I will be an RN Case Manager for an HMO doing disease management over the telephone.  After almost 22 years in Pediatrics, I’m switching to the “adult world”.  Some might ask if I’ll be able to do well with adults, as all of my experience is with children.  However, I have 17 years experience in phone triage; those who take this job may have experience working with the elderly, but no telephone experience, so I consider myself even with them.
My last day (obviously) was Friday, and it was bitter-sweet.  It’s really tough leaving my co-workers (office staff, nurses, and docs), and to be honest, I’ve had pangs of guilt, feeling as though I am abandoning my coworkers.  But to be honest, my Charcot Marie Tooth (peripheral neuropathy) is gradually worsening, leading to more of a loss of fine motor skills.  Being that I sometimes have to draw blood, start IV’s, and other tasks, I felt it was time to look for a position where I don’t have to depend on my physical skills. I rationilzed my decision when explaing to coworkers that it was time to move on, and the new job has more opportunities for advancement (which it does), but when I really thought hard about it, it’s more the fact that I need to depend more on my brain, as my phsical abilities are decompensating (although I was concerned that my job would eventually be eliminated, and still believe that it’s a possibility, although low).
I’ve triaged patients on the phone for almost 17 years now, and I feel that is my forte; this job depends highly on telephone assessment skills; thus, it is a perfect fit for me at this point in my career.  Anyway, it was tough saying “goodbye” to all of my co-workers (even though I’ll be employed by a different “arm” of the health system I work for now).  And there were several times when I almost became “emotional” (i.e. tears) on my last day.  However, I feel that I made the right decision.
My coworkers overwhelmed me on the day before my last day (the “penultimate” day). They had a very nice congratulations/good bye lunch for me.  When I entered the room, there was a single gift in the middle of the table (I honestly didn’t expect a gift).  When I picked it up, I thought it was a large book. When I opened it, it turned out to be a 32 GB 3G iPad!  Needless to say, I was beyond shocked.  On the back, was a very nice inscription, and upon reading it,  I had to hold back tears. I take my work seriously, and try to do the best I can, and it was apparent that I was appreciated more than I ever could imagine.

I had my labs this week, and although my blood work isn’t yet available to view on MyGeisinger, I received a message that my BK urine PCR is up to 77,500 copies of BK virus from last month’s 41,200 copies.  I’m not too worried about it, as it does sometimes fluctuate, and it’s much better than the >39 million copies when I was first diagnosed with BK. 

My feet are in much better shape than a year ago.  I have the pressure ulcer on my left foot under control, and have a new orthotic on that leg (the other one broke).  I plan on getting a new one for the right as well, as the new one offers better comfort and support.  It’s made of a different material, and is higher up on my lower leg.  It took a few weeks of adjustments and getting used to, but overall it is much better than the one I had. 

I received an email today with a link to a site that looks to be a dialysis activism site.  It contains a link to a database that allows dialysis patients to compare dialysis clinics on 15 key measures, ranging from mortality and hospitalization to transplant rates and infection control. I looked up the dialysis clinic that I went to, and it got very good “grades”. 

Next month I have my quarterly appointments with the Transplant Surgeon and Transplant Nephrologist.  Not much else to report, but when talking about my transplant, boring is good.  Merry Christmas and Happy Holidays!

I had labs last week (my first BK urine in a while, as the last 2 serum tests were negative), and I have 41,200 copies in my urine.  Not bad, considering that I had over 39 million when first diagnosed.

My other labs are great-creatinine of 1.1, BUN normal (it had been in the high 20′s up until the past few months, although BUN isn’t a specifically reliable kidney function indicator) and a stable hemoglobin.

Since I’ve been getting emails and posts here with questions on BK (which I welcome), I’ve decided to start a discussion group on BK Virus at Yahoo.  If you would like to join, the address is http://health.groups.yahoo.com/group/bk_virus/

In other non-kidney news, the ongoing saga of my neuropathy continues (Charcot Marie Tooth).  I was working outside, and my left orthotic cracked.  I heavily depend on my orthotics to be able to walk somewhat normally, although I can go without  them (with increased risk of tripping, and my gait is very tentative).  The Orthotist did a temporary repair, and fitted me for a new one.  Although it took a few trip back for adjustments, my new orthotic is great!  He made it so it covers most of my lower left leg, thus giving me more support.  My left orthotic I say is a “Cadillac” while my right now feels like a “Yugo”.  I plan on replacing that sometime next year (they are almost $700, although insurance covers a good chunk of that).  The new one is on the foot that I had a pressure ulcer previously, and the design is much better at relieving the pressure at the pressure point where the ulcer is, and I’m thus taking a lot less Tylenol now, so that’s good.

For my US readers, Happy Thanksgiving!

Busy end of summer, so I missed posting last month. I’ve had 2 straight months of negative BK in my blood, so next month, they will just  check the BK level in my urine.  I’m still on the Leflunomide; not sure how long I’ll be on that.

I had my quarterly appointment with the Transplant Surgeon and Transplant Nephrologist 2 weeks ago, and everything else is fine.

I did discuss the surgery to revise my dialysis fistula, and I decided to not go through with it yet, as it’s not causing any problems; it’s just huge, bumpy, and curvy-I can live with that.

My creatinine is holding stable at 1.1, and my blood counts are fine.  My urine protein and creatinine are still slightly elevated, but the Nephrologist wasn’t at all worried about it.  See the image below.

In other news, I’ve been walking without my AFO’s (ankle foot orthoses),and that’s been rough. I was stepping over something, came down on the forefoot, and my orthotic cracked.  I went to the Orthotist, and he temporarily fixed it, and fitted me for a new one.  The new orthotic won’t be ready until next week or the week after, and being that I’ll be on my feet a lot at work this weekend, I’m not wearing the AFO’s in case the fix doesn’t hold.  I can get by without them, but I’m likely to trip, and without them, my knees are starting to bother me as I don’t have the support of the AFO’s, and thus my knees are in a different position than when I wear them.

We live in a rural area, so we tend to put a lot of miles on our vehicles.  My wife only drives about 3 miles each way to work, but I drive 23 miles each way.  Thus, I tend to keep our vehicles until they die.  My 17 year old Chevy Astro (with 206k miles) finally went to it’s eternal rest, so we just bought a 2008 Chevy TrailBlazer with 18k miles on it.  It’s nice to once again ride in style.  In addition, it has 4 wheel drive, which will be useful when I have to go to work in the snow.

‘Til next month……