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.

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!

I had my labs 2 weeks ago, and another negative BK level in my blood. Yea!

My creatinine is 1.1, and all of my other labs are stable.  My Prograf level went from 9 in April,  to 7.7 in May. Not worrisome, as the goal is 6-8.  Still on Leflunomide, and they will be checking a Leflunomide level in June.  (Leflunomide has anti-viral properties for BK virus). I will also start getting urine BK virus levels next month, which should be interesting.  When I was diagnosed last July with BK virus, I had >39 MILLION copies of the virus in my urine.  I last had it checked this past winter, and it was down to 229,000 copies.  That major drop was most likely from not taking CellCept, which is notorious for causing the immunosuppression leading to BK virus.

Since my last post, I had to go back to the Podiatrist, and I had another pressure ulcer on my foot.  It was only pinpoint, so I caught it early.  He debrided the callus on my foot, which has helped.  That day, I also went back to Susquehanna Valley Prosthetics and Orthotics (the company that molded my orthotics and whom I HIGHLY recommend), and at the suggestion of the Podiatrist, they added a material called Plastizote to the area of the orthotic that was causing problems with my foot.  It has greatly helped the problem, and I now have minimal to no pain!  I think this is the answer to the problem.

My sister is in the hospital again.  Over the weekend, she had vomiting, severe back pain, and chills.  They don’t know the source of the infection, but were apparently worried that it was either a gall bladder or kidney infection.  She had pain in her right side, which is the side of her transplant, thus the worry of an infection in her transplanted kidney. It’s also possible that she has an infected cyst in one of her native kidneys.  Cyst infections are difficult to diagnose.  The infection is within the cyst, so a urine culture wouldn’t necessarily show an infection.  I probably had a cyst infection prior to my transplant when I was on dialysis, and was on Cipro for almost 2 months.

She did have a nuclear scan today, and the gall bladder apparently is not infected (although she has stones again). Not sure what the plan is, but they are holding off on antibiotics until they know the source of the infection.  Her temp was only 100.2 today, but her white blood cell count is elevated.  She’s had a rough year since her transplant, so I hope they can figure out what is wrong.

I’m back working weekends with the home nursing agency I worked for before. I’m happy with the case I’m on; the family is very nice, and the client is a pleasant little girl.  This case is different, as the client is a family member; the previous case, the clients were adopted.  It makes a big difference.  I’ve been doing home care as a side job for a total of 11 years now, and do enjoy it; it’s a different kind of nursing from my full time job.

Hard to believe it’s been this long, but Saturday was the 21st anniversary of my job as a nurse with my current employer; I started the job right out of nursing school.

I had my monthly labs this week, and the level of BK virus in my blood has increased the past 2 times.  It started out at a level of 7200 this summer, reached it’s lowest in September at 961, was 1200 last month, and on Tuesday it is 2500.

The Transplant Nurse called me today, and I’ll start on a 10 day course of Cipro.  Even though Cipro is an antibacterial, and BK is a virus, the Cipro has the effect of inhibiting viral replication (the process of a virus making copies of itself).  I will have both my blood and urine levels checked in 2 weeks again, and hopefully, the level of virus will decrease.

My other labs are good. My creatinine is still 1.2, and my Prograf level is 9.5 (expected range 6-9).  Even though it’s a bit high, it’s acceptable, and they probably are keeping me on the high side, since I’m temporarily off CellCept.

If the Cipro doesn’t work, my guess is that I will then be put on Leflunomide.

The BK isn’t a major problem at this point, as it was caught early, and my kidney function (creatinine) is unchanged. I haven’t had a renal biopsy yet, and am not sure if that’s in my near future; it hasn’t been mentioned.

I’ve managed to survive Swine Flu season without getting the flu.  The only infection I’ve had is a mild cold, and didn’t even get a fever.

I added a new blog to my Blogroll, Because I Can.  It’s the ongoing story of Ashley Baltazar, a 19 year old with Polycystic Kidney Disease who developed a brain aneurysm near her brain stem. It’s written by Lori Schneider, a features editor for a local community newspaper.  Lori is chronicling Ashley’s long journey through this devastating struggle via the blog, and she is also in the process of writing a book about Ashley.

For those who aren’t aware of the various complications with PKD, brain aneurysm is one of them.  They are usually familial and occur in up to 10% of PKD patients.  Other issues include diverticulosis, kidney stones, hypertension, abnormal heart valves, and liver and pancreatic cysts.