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.

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.

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 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.

Happy Kidney-versary to me; it will be my 2 year anniversary of my transplant on Monday!

I had my quarterly Transplant follow up today with the Surgeon (Dr. Maloo) and Nephrologist (Dr. Schultz).

Dr Maloo was a bit miffed that I hadn’t been treated yet for the BK virus (other than the course of Cipro last Fall).  I’ve been BK + since last July, and have been off CellCept since then.

So, today I start Leflunomide. This is a drug used for Rheumatoid Arthritis, but also has anti-viral properties.  It’s also starting to be used for BK Nephropathy (damage to the kidney from BK virus).  While it’s not know if or how much damage I have from BK, I think that Dr. Maloo is using this since the virus is remaining in my blood, although at a low level (with higher viral levels in the blood, they treat with IV Cidofovir).  For those following my blog that are interested in more detail, the dose is 100 mg for 3 days, then 20 mg daily.  I had a BK level done today, but it’s not back yet from the lab. I also have an ImmuKnow Immune Cell Function pending as well.  This is done in order to get an idea of the level of immunosuppression. Much like a Hemoglobin A1C for diabetics, this test gives an overall idea of my level of immunosuppression over the past few months.  From what I gather, it’s a way for the docs to also monitor those who aren’t compliant with their medication (some will start taking their meds a few days before labs and then stop for awhile).

I was the last appointment of the morning, so Dr. Maloo was sort of rushed.  I discussed my dialysis fistula with him, because lately, it’s gotten much larger, and I get some intermittent pain with it.  At the time of my transplant, I was scheduled to have a balloon fistuloplasty/stenting done, because there are areas of stenosis (narrowing) along the fistula.  This causes other areas behind the stenosis to get larger.  Dr. Maloo was in full agreement that I should keep the fistula, in case I need it in the future; fistulas are usually good for 20-30 years if properly cared for (his colleague wanted to “tie it off” when it became a problem).  Another reason I want to keep it is because I am able to draw my own labs from the fistula.  This is very important, because the veins in the other arm suck, and with getting monthly labs, that will quickly turn into 1 big monthly ordeal.  I’m hoping my kidney lasts my lifetime (or at least until retirement), but there is always the possibility it won’t.  If I had to do dialysis again, there wouldn’t be many more options for another fistula site (other then my thighs), so keeping this is best.  I had asked him to have it fixed, thinking the Interventional Radiologist would balloon and stent (similar to what they do with people whose heart arteries are blocked), but he thought I meant surgery.  He said my idea was ok, but after thinking about it, I’m going to wait until my next appointment in July to discuss my options; surgery to fix it may be better in the long run.  Having it stented in IR would run the risk of an infection at the stent, so I’m leaning more towards surgical repair.

I also had my first appointment with the new dentist today.  I had a filling that fell out and broke part of my tooth, and will probably need a root canal.  That will be done this summer (unless I have problems beforehand) and he also prescribed a prescription toothpaste with a higher concentration of fluoride to use once at night (and use regular toothpaste in the morning).

Despite the BK, everything is going well, and hopefully the Leflunomide with put the BK virus in remission.

For those whose immune systems aren’t suppressed, you probably have BK virus dormant in your kidney as well (it’s a respiratory virus that most get as a child). The difference is that a non-suppressed immune system will keep it dormant.  This is similar to chicken pox-once you have it, it’s dormant in the nerve tracts (reactivation of chicken pox virus is called Shingles).

Labs:

Creatinine         1.1
Prograf            9
PTH                72
Hemoglobin         13.4
Immune Cell Function:     Pending
Serum BK Virus        Pending