CHRONIC POSITIVITY – Life with Polycystic Kidney Disease

For the second time in less than a year, I had another episode of acute renal failure. 

It all started with my surgery on April 10 to have my dialysis fistula ligated (“tied off”).  The surgery went well; it was done under conscious sedation (no general anesthesia), and I felt great leaving the hospital.  My arm was hurting, as expected, but the pain medication was effective.  Being that there was no more arterial flow into the vein (which had several pseudo-aneurysms), the blood clotted and caused a thrombo-phlebitis.  Now, the fistula is very hard, probably because it’s non-functioning, and has calcified. 

The weekend after my surgery, I developed a fever of 102.1 and shaking chills during the night, so in the morning, I went to the Emergency Department on Sunday morning.  From there I was admitted, and that’s  when the problems started.  I was diagnosed as having cellulitis, and being that I just had surgery, was treated aggressively with Vancomycin, in case I had MRSA.  The dose was set by the pharmacist for this kidney toxic drug, and was rather high.  My first dose was 3,000 mg, and the doses every 12 hours after that were 1,750 mg.  The next morning, they checked a Prograf level, and that was high at 12 (unrelated to the Vancomycin).  When they checked a Vanco level Monday night, it was almost double what it should have been, so they stopped it.  My baseline creatinine is 1.1, and when I was admitted, it was 1.3, probably due to the Prograf being high, and being a bit dehydrated.  By Tuesday, it was 1.6, and my Prograf level was 16! (it should be 6-8).  Rather than do anything, they decided to discharge me with an elevated Prograf level and Acute Renal Failure!  I had a rather blunt discussion with the hospitalist, and she decided to not discharge me.  

The next morning, the Nephrology Fellow (a doctor training to be a Nephrologist) came in and told me I needed IV fluids and an adjustment to my Prograf dose.  He ordered IV fluids at 50 ml/hr (which would be a maintenance dose for a 10 year old), and the next day, came in and told me that if my creatinine was unchanged or higher, I would need a biopsy of my kidney (which, after 4 years, I have never had/never needed).  At that point, I sent an email to my Transplant Surgeon, and he was in my hospital room within an hour (he didn’t know I was admitted).  He made recommendations (500 ml of saline followed by saline at 150 ml/hour, no Prograf that night) and by the next day, my creatinine was 1.5 and my Prograf level was 7.2.  I was discharged on that day, and my creatinine is now down to 1.3.  I did NOT need a biopsy, and my creatinine should return to baseline.  The surgeon was shocked at the amount of Vancomycin I was given. 

It took until today, 10 days later, for me to start feeling almost normal.

Lesson learned-whenever I’m admitted, the Transplant Surgeon WILL be consulted. 

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.

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.

I had a transplant surgery appointment yesterday that went very well, and helped clarify some things.  I had been having burning and numbness in my hands, so the doctor wanted to see me. I also met with my new transplant coordinator as well (RN).

I thought the burning and numbness was from the Prograf toxicity, but the doctor told me it wasn’t; only hand tremors are a side effect of that.  Between my email asking about that and my appointment, the symptoms are mostly gone; just some numbness, which could be from my neuropathy.

I had a Prograf level last week, and it was 5.2.  Being that I’m on “monotherapy” for almost 2 years now (they put my CellCept on “hold” because of the BK virus), they want my Prograf level higher, so I’m back on my original dose of 3mg in the morning and 2mg at night; that should bring my level to the 7-8 range, which is where they want it.

When my coordinator looked everything over, she was a little concerned that I had been off of the CellCept for so long, and have been on Leflunomide for quite a while as well.  My surgeon was initially concerned as well (I had been seeing another surgeon for the past few quarterly appointments; it’s a group practice, and they see whoever is on their schedule. Consequently, I had been seeing other surgeons since I had last seen Dr. Varma).

But once they looked everything over, everything looks great.  The Leflunomide is a low dose (20 mg daily), and my liver functions and Leflunomide are all normal.  Ideally, they like to have their patients on Prograf and CellCept, but the treatment for BK virus is to drop the CellCept to get the virus levels down.

Dr. Varma assured me that I’ve “bonded with my kidney”, since I haven’t had any signs of rejection, and Prograf alone in my case is fine.

I thought my urine BK level was 11,000 last week, but I misread it; it’s 1100, which is practically negative!  I have to say that when I saw the level of 912,000 last month, I was worried.

I’ll be drawing another Prograf level and BMP (basic metabolic panel, which includes a creatinine and BUN) on Monday, to check my level after the dose increase, and to check my kidney function.  I felt good leaving the appointment-much more reassured that everything is better now.

I have an appointment on June 17 with the Vascular Surgeon.  I was scheduled for a balloon fistuloplasy in May 2008.  However, I got my transplant a few days before.  I have areas of narrowing in my fistula, so they were going to insert a balloon in it much the same as they open up coronary arteries in a cardiac cath.  But they use IV dye for this, and that could have damaged the new kidney, so they wouldn’t even do it at a later date.

It’s important to keep my fistula, as I may need it some day (hopefully not).  In addition, I draw my labs from it (I inserted my own dialysis needles prior to transplant), and the veins in my other arm are just about shot.  Being that I still get monthly labs, that could create a problem.

As a result of the stenotic areas (narrowings), my fistula has gotten much larger with pseudoaneurysms.  So I’ve decided to see the surgeon to see what he says.  If he doesn’t feel that it needs to be fixed, that’s fine.  But I don’t want to let it go to the point that they can’t fix it.  At least I’ll be “plugged in” with him and can take care of any problems.

This is the radiographic image of my fistula before "ballooning". Note the various segments instead of a continous blood vessel. The areas between the segments are narrowing (stenotic areas) of the blood vessel, which cause enlargement of the areas to the left of the stenosis.

As for my foot, I’m doing great.  I have a Bledsoe boot, and am full weight bearing. I had my first PT appointment today, and have range of motion exercises to do, and eventually will do strenghthening.

Things are looking up.

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.

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….

I’ve stopped putting “BK Virus” in my blog post titles, as it’s apparently something that’s not going away soon.  The BK is still in my blood; my level went from 1000 viral copies to 1400, despite the Leflunomide. These levels are still low, but I have to wonder if they are doing any damage to my kidney.  I’ve been off CellCept for a year now, but I’m still on Prograf.

Most of my other labs are good:  Creatinine 1.1 and Prograf level 7.  Interestingly, my Prograf levels have been fluctuating.  The last 5 readings (latest to oldest):  7.0, 6.0, 8.7 (first level after starting the generic Tacrolimus), 7.7, and 9.0.  The target range is 6.0-8.0, so they are still in range.

One lab value that may be concerning is my Protein/Creatinine ratio.  Normal range is 0-0.14.  This month it’s 0.2, on 7/13 it was 0.24 (it went down at least from then), on 4/28 it was 0.1, on 11/10/08 it was 0.11, and on 8/12/08 (3 months post-transplant) it was 0.17.  Not sure what to make of it.  Could it be that my hydration status is not as good, given that it’s so hot out? Is there something going on with the kidney? Is the Prograf damaging the kidney? The BK causing damage?  Hopefully it’s my hydration.  My hydration is good when I get my labs done, as I usually have 45 oz of fluid in each morning before 8am, but my urine has been more concentrated overall this summer.  Have to do a better job keeping up with the fluids. Keith, my PCP, told me it’s probably nothing to worry about, and just to drink more.

I had a problem with my foot again.  We were on vacation 3 weeks ago, and the padding in my orthotic wore down, causing the infamous foot to become irritated and calloused.  It’s just now feeling better, but it was quite painful when it happened.

I never cease to be amazed by some people’s perspective.  I was talking to a person 20 years older than me, who’s only problem is a little bit of osteoporosis.  She is on no meds (other than supplements and vitamins), and yet was complaining about her stomach problems, which apparently are self induced (she eats too much dairy).  She went on and on about how terrible it was.  And yet she doesn’t have heart problems, she’s not on any meds, she’s able to walk without any problems, her kidneys work, etc.  Those of us with kidney problems would only wish to have that as our only hurdle  I’m certainly not one to complain; I deal with what I have, and yet what I have is small, in comparison to the child with cancer, the adult with Lou Gehrig’s disease, the baby born premature who’s lungs and eyes are crappy.  It’s all about perspective, people.

I have most of my labs back from last week, and they’re a bit perplexing.  My past 2 monthly serum BK virus levels were negative, yet last week, I had 1,000 copies of virus in my blood. My urine BK virus levels were only 17,000; when I was first diagnosed with BK Virus, I had over 39 million copies in my urine.  Overall, this is good; I just can’t figure out why it is back in my blood.  The only lab that isn’t back is a drug level for Leflunomide, which I’m taking to inhibit the BK virus.

My other labs were great.  Creatinine 1.1, Prograf level 8.7, Hemglobin 13.6.  Also, my BUN was 15; it has been YEARS since it’s been under 20!

I had a big hassle with my labs this month.  Since I draw my own blood (through my dialysis fistula), the phlebotomist in my clinic processes it as far as ordering it in the lab computer system.  I find out from the Transplant Coordinator (RN) the month before which labs are needed, I tell the phlebotomist the day before, and she places the order, as long as there is an order in my chart for that specific lab.  Apparently, one of the orders expired, and she had to call the Transplant Surgeon’s office to find out if that particular lab was needed.  Unfortunately, she gets this information from the secretary, who looks in my chart, and then passes on which labs are needed.  Well, she got it all screwed up, and sent lab slips over for labs I had in April, which weren’t needed.  It turns out, the labs I told the phlebotomist to order were correct.

I ended up emailing the doctor through internal email (I usually email through my chart, as the health system I work for and am also a patient of has an electronic medical record).  I mentioned the “scare” I had before related to wrong labs being ordered, and told him I wanted to avoid it happening again.

I ended up getting an apology from the Transplant Coordinator (I don’t need an apology; I just need the right labs ordered), and I hope that I won’t go through this again.

Back to the Podiatrist in another 2 weeks, as I think I’m getting another pressure ulcer on the outside of my foot.  It’s manageable now, but I don’t want to let it get out of hand.  The new padding in my orthotic is working great, though; the ulcer would probably be noticeably worse without the padding.

Tomorrow, it’s off to the dentist for a root canal.

That’s all for now.

I had my monthly labs last week, and overall they were good.

My creatinine is still 1.2, my blood counts are stable (my hemoglobin will never be in the normal range due to my Thalassemia; it’s in the high 12 range), and my Prograf level is 8.2 (right at where the docs want it to be, although at the high end of normal)

The level of BK virus in my blood dropped a bit, from 800 copies to 500 copies. It’s obviously still a concern, as I’ve been off my CellCept since last Summer, and I still have BK virus in my blood and urine, but it’s a low level of virus.  I’ll discuss this with the Transplant Surgeon at my appt later this month, but I’m sure that if they were concerned, they would be more aggressive with this.

Despite the immunosuppression, I am able to stay free of most infections, despite working as a RN in Pediatrics.  It’s not the common infections that are worrisome though, such as colds and stomach viruses, but rather the opportunistic infections like fungal infections or unusual viral infections (such as BK virus).  But I don’t worry about those; whatever happens happens, and I just do my best to avoid the ones I can, and keep on keepin’ on.

The only remotely recurrent problem I have is with my sinuses, and even that isn’t too bad.  I take a nasal steroid daily, and that helps.  However, I end up on antibiotics once or twice a year.  I recently read a report that many sinus infections are of fungal origin, and not bacteria. Unfortunately, I can’t find the link to the article.  When I find the article,  I’ll post it to the comments below.

I have a new online friend (Nancy), who donated one of her kidneys to her father.  She’s a regular reader of my blog, and found me doing a search on BK virus.  Her father just had a kidney biopsy, and they found BK in his kidney.  He’s thankfully doing better; please send out your prayers and/or positive thoughts for him.

BK is becoming a hot topic in the Transplant Community, but not a lot is known about it.  I think we’ll be hearing more about it.  Knowledge is power, and we need to be aware of this issue to be better informed, so that if/when it happens, we can deal with it better.

My foot continues to be a small problem (pain every day), but I’m now able to go for my daily walk.  I feel better doing so, and the benefits of walking outweigh the daily pain.  I still have a small superficial pressure ulcer, but it’s not worsening.  I just have to monitor it, and if it worsens, I’ll be back to the Podiatrist.  Just a speed bump along the way….