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”.

It’s been a busy end of the summer, and I haven’t posted in a while, so here goes.

Everything is going well-uneventful is good.

My BK virus levels have been variable, but overall are low.  The latest is 9200 copies in my urine.  The previous had been 25,700 (August 31), 36,600 (August 3), 80,300 (July 5), and 1100 (May 31).  My last Prograf (Tacrolimus) was 7.5, and creatinine 1.1.  My Acute Renal Failure from May has totally resolved, and hopefully did minimal damage to my kidney.  I’m over 3 years out from my transplant (May 3, 2008) and have yet to have had a biopsy.

I had my quarterly follow up in Transplant clinic at the end of August, and now only have to have labs for blood work every other month; they still check a BK Urine monthly, as they want to keep close tabs on that.  Another plus is that my transplant follow ups will be every 4 months rather than every 3.

My BP is trending slightly higher (I haven’t had any BP meds since I was on dialysis over 3 years ago).  I attribute most of that to stress, as I’ve started a new job in January, and it’s very intense.  Now that my foot is better, I will be able to start exercising (walking), so that should help.  I had my yearly exam with my PCP today, and my weight is 8 lbs less than this time last year, so I’m on the right track with that.

I had an appointment with the Vascular Surgeon back in July, and he recommends that I have my fistula tied off.  Not sure when I’ll do that, but probably will have it done in the upcoming months.  It’s a simple procedure, and the anesthesia will be conscious sedation (no general anesthesia unless they run into a problem).

I’m thrilled with my new Transplant Coordinator (similar to a Case Manager). She is your typical anal retentive RN, and does an excellent job. I have complete faith in her judgement, and she is able to answer my questions (my previous TC oftentimes either didn’t have a clue, or didn’t bother to find out the answers to the questions I had).

I’m thrilled with the repair on my left foot.  I saw an x-ray after the surgery, and have a bunch of hardware, including a 3-4 inch threaded bolt going straight up into my heel, as well as some plates and screws below my 1st and 2nd toes at the metatarsals (foot bones).  With my neuropathy, I have “hammer toes”; these were corrected on the first 2 toes, and they are now straight.  I no longer have to wear an AFO; I just have a solid plastic insert that I wear in my shoe.

I continue to receive messages from people with PKD and/or BK virus, and am happy to answer any questions posted for me.

As for my (fairly new) job, I love it!  I’m a RN Case Manager for a large health insurer dealing in disease management.  In addition to my knowledge base, I’ve also been able to put my personal health experience to good use.  I’m very open with my personal health issues, and this has helped immensely in several ways: understanding what my patients with chronic medical problems are going through, assessing potential problems with their meds and kidney status, and making suggestions that are helpful.  Case Management is a burgeoning field, and I plan on working on Case Management certification over the next 2 years, and possibly going on for a Master’s Degree in Case Management.  I’m 48 years old, and will probably be working another 20 years or more, so it’s not too late in my career to do this.

For those who are interested, I’m now on Twitter.  My posts are for the most part links to articles related to medical studies and discoveries related to renal, transplant, heart failure, respiratory, osteoporosis, and others.  I’m still working on figuring out Twitter, but hope to be posting more as time goes on.

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.

What a difference 3 weeks make (since my last post).  At that point, I had just gotten home the day prior from the hospital after my foot surgery, and had been prescribed Fluconazole (aka Diflucan).

This past Wednesday, I went in for my routine quarterly transplant appointment that had been postponed a month due to my surgery.  It wasn’t a good week; our 15 year old Springer Spaniel died on Monday, and my son locked the keys in our vehicle when I was going to my transplant appointment.  When the Transplant Nephrologist came in, he looked at my labs, and had a look of surprise on his face.  While my creatinine usually runs between 1.1 to 1.3, it was 2.1, with a GFR of 34%!  I was admitted to the hospital that day for Acute Renal Failure, and was in for 2 nights.  I had a renal ultrasound, and there was no obstruction, and my transplanted kidney has good blood flow.

It turns out that I went into failure from Prograf toxicity (level of 21.8!).  In addition, my BK virus, which was 7000 copies in my urine last month (mistakenly reported at that time in last month’s post as 7700), shot up to 912,000 copies on Wednesday, no doubt from the oversuppression from the high Prograf level.  This was all due to an interaction between the Prograf and the Fluconazole.

At this point, they decreased my Prograf from 3mg in am and 2 mg in PM, to 2/1.  I will have labs next Thursday, and if my creatinine is improved, they will probably just watch it for now. If it isn’t improving, I’ll be getting a kidney biopsy. “Chronic disease with a positive attitude”  is a bit difficult this week, but I’ll keep trying.

Until next time….

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 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!