An Antibiotic for a Virus
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
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
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.
That Pesky BK Virus
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.
Getting Back To Status Quo
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.
Delicate Balance
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.
Hospitalization May 2011
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….
Foot Surgery, April 2011 Transplant Labs
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….
March 2011 Transplant Update
The level of BK virus in my urine has gone done considerably since last month-9600 copies in February , and now just 2600 copies! It will be 2 years in July that BK was first discovered, and at that point, the number of viral copies was greater than 39 MILLION. It’s taken almost 2 years, but there is a light at the end of the tunnel (although once in remission, it can still pop back up).
My other labs aren’t available for me to look at, but I don’t anticipate any major changes.
I once again have a cellulitis in my foot (I had it last month in the foot, extending half way up my lower leg; this time, it’s just the top of my foot). I have chronic issues with my feet due to the neuropathy, and my PCP thinks I have have an infection under a callus on the side of my foot. I’ve been on Keflex once again for 2 days now, and will see the Podiatrist on Monday (2 more days). Hopefully, he’ll be able to get to the bottom of this, so that it doesn’t recur.
Short post this month. Happy Spring to all of my readers!
February 2011 Transplant Labs
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!
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