Lab Error

September 13, 2012 2 comments

I had great news today.  Apparently, the last urine BK virus specimen that came back with >700,000 copies. was a lab error.  Or, as my transplant coordinator called it, a “fluke”.

I had a repeat urine done on Monday, and there are only 500 copies of virus in my urine.  Not 500, 000, but 500.  I was diagnosed with BK virus in July, 2009, and at the time, I had greater than 39 MILLION copies in my urine.  Since then, it has intermittently been in my blood as well, but my serum BK was negative last week.

So I have to wonder how effective the Leflunomide actually was.

Now, I’ll get my urine checked for BK monthly.  That’s a BIG load off of my mind!

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I Dodged the Bullet

September 9, 2012 1 comment

I had labs a week ago, a serum BK.  I’ve found in the past when I’ve had  5 digit BK levels in my urine, I would have it in my blood as well.

However, my serum BK was negative!  I had myself all worried about having to go on IV Cidofovir (a nephrotoxic drug), but at this point, I’m not.

I spoke with my Transplant Coordinator Friday, and she told me the good news, and for now, no Cidofovir.  She said it’s not unusual to have a high BK level in the urine, and then for it to be much lower the next time.  So, to the lab tomorrow to have my urine checked again, and hopefully, it will be down.  ‘

I dodged the bullet this time, but IV Cidofovir remains a possibility in the future.

I’ve done some reading, and it’s not known whether the BK comes from the donor, or whether it was in the recipient’s urinary tract.

It’s a virus that usually affects children as a respiratory illness, and my donor was 16 and in a group home.  Maybe she had a respiratory infection before she died? I’ll never know, and it’s academic at this point.

Decisions, decisions…..

September 1, 2012 2 comments

More speed bumps since my surgery, although unrelated. (speed bump is my turn for a medical issue that I face, deal with, and move on, as opposed to looking at it as a problem that consumes me; it’s all in the approach).

Through the Spring, I had been having a subtle increase in numbness/tingling, tremors, and loss of fine motor skills in my hands. Right after my April hospitalization, it noticeably worsened, to the point where I was having significant burning pain as well, and the one day, I wasn’t even able to get my key into our front door. I racked my brain, and then figured it out. I had a dose increase of my Leflunomide back in January; this is the drug used to treat the BK virus in my transplanted kidney. I looked it up, and sure enough, one of the side effects, although rare, is neurotoxicity. Paired with my existing hereditary peripheral neuropathy, Charcot-Marie-Tooth, this explained my symptoms. I notifed my Transplant Coordinator, and she referred me to a Neurologist but told me to CONTINUE the Leflunomide. The symptoms worsened, though, so I stopped it.

It took 3 months to get in with the Neuromuscular Neurologist, but I finally saw her (for the first time) in mid-August. My suspicions were confirmed-it was the Leflunomide, and the symptoms were mostly irreversible. So she started my on Inderal LA for my hand tremors (my new wonder drug), and did a bunch of labs to check several of my vitamin and mineral levels, all of which were good.

I had my routine transplant labs this past week, and got a call from the Transplant Coordinator; the BK virus level in my urine has skyrocketed since going off of the Leflunomide. In June, the number of BK viral copies in my urine was 2300, and this past week, I have 733,000. They told me to go back on the Leflunomide.

Of course, I refused to do that, given what I went through. I was a bit annoyed when the response to that was “don’t you want to save your kidney?” Yes, of course I do, but I also want to be able to be able to use my hands, so that I can continue to function. While we were talking, she still continued along the same “save your kidney” path, so I finally asked her, for the sake of argument, that if Amoxicillin was effective against BK virus (it isn’t, but Cipro is), and I was allergic to it, would she/the doctor still put me on it? She got my point (I think).

So, she went back to the doctor, and later called me back, telling me that the doctor is “very concerned” (and I’m not?), and he wanted me to get blood work to check for BKV in my blood (I’ve had BKV in my blood before, so I suspect it will be positive), and is considering other treatment.

That treatment would most likely be Cidofovir IV every 2 weeks to try to “clear” me of BKV (which I’ve had for 3 years, albeit controlled prior to this).

The problems are that 1. there is no set treatment for BKV, as it’s discovery has been very recent and 2. IV Cidofovir is potentially toxic to the kidneys.

So it’s come down to this: use of my hands and feet, or saving my kidney.

I’m hoping that I can save my kidney and prevent further damage to my peripheral nerves, and have confidence that I will, but it would be really easy to to let this consume me.

In between all of this, I was in the Emergency Department last month for a foot cellulitis. Every few months, I go to the Podiatrist when needed so that he can pare down the recurring callous I have on the outside of my foot. The callous occurs due to the way I walk-with most of the pressure of each step on the outside of my foot. This is a result of the CMT, which causes gradual loss of nerve conduction, and thus shrinkage of the muscles that keep the foot in a natural position. I wear a padded hard plastic orthotic, but still get a callous. It took a month to get in to the Podiatrist, and 2 days before my appointment, my foot became infected due to an ulcer underneath the callous (much like last year, which led to a bone infection in my other foot and then surgery). However, this time the ulcer was not deep, and it is just about healed now.

So, it’s wait and see for now in regards to the BKV. I hope to blog much sooner to keep you all updated on what happens.

Acute Renal Failure, Round 2

April 30, 2012 3 comments

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. 

An Antibiotic for a Virus

January 12, 2012 Leave a comment

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.

Foot Surgery Update and Labs

November 24, 2011 Leave a comment

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”.

BK Virus/Transplant update October 2011

October 13, 2011 5 comments

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.