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 labs last week (my first BK urine in a while, as the last 2 serum tests were negative), and I have 41,200 copies in my urine.  Not bad, considering that I had over 39 million when first diagnosed.

My other labs are great-creatinine of 1.1, BUN normal (it had been in the high 20′s up until the past few months, although BUN isn’t a specifically reliable kidney function indicator) and a stable hemoglobin.

Since I’ve been getting emails and posts here with questions on BK (which I welcome), I’ve decided to start a discussion group on BK Virus at Yahoo.  If you would like to join, the address is http://health.groups.yahoo.com/group/bk_virus/

In other non-kidney news, the ongoing saga of my neuropathy continues (Charcot Marie Tooth).  I was working outside, and my left orthotic cracked.  I heavily depend on my orthotics to be able to walk somewhat normally, although I can go without  them (with increased risk of tripping, and my gait is very tentative).  The Orthotist did a temporary repair, and fitted me for a new one.  Although it took a few trip back for adjustments, my new orthotic is great!  He made it so it covers most of my lower left leg, thus giving me more support.  My left orthotic I say is a “Cadillac” while my right now feels like a “Yugo”.  I plan on replacing that sometime next year (they are almost $700, although insurance covers a good chunk of that).  The new one is on the foot that I had a pressure ulcer previously, and the design is much better at relieving the pressure at the pressure point where the ulcer is, and I’m thus taking a lot less Tylenol now, so that’s good.

For my US readers, Happy Thanksgiving!

My sister is doing better, but has been through a lot.  She is coming up on her 1st anniversary of getting her kidney (April 30), but has had problems afterwards.  Her kidney is working well, but she’s had diarrhea to the point of becoming malnourished.  After the “million dollar workup”, she was found to have gall stones and sludge in her bile duct.  They did an ERCP (a scope inserted down past the stomach and into the bile duct of the gall bladder), and removed the stones and sucked out the “sludge”.  Unfortunately, it didn’t help her appetite, and she worsened.  She ended up in the hospital last week for 3 days with dehydration, they changed her meds around, and she now feels betterher appetite is picking up.  They probably will eventually take the gall bladder out, but with her nutritional status, it’s too dangerous now, as she wouldn’t heal properly.

For those who post comments, keep them coming. I’m also a little late approving them, but I did just approve those that were pending.

I had lab work done last week, but just got the remaining results today.

The level of BK Virus in my blood continues to drop.  It started at 7,260 copies in July, and after stopping CellCept at that point, was 2,257 in August, and this month there are 961 copies.

My cholesterol is 156, but I need to get my HDL up, as it’s low.  My Prograf level is elevated at 9.9.  I’ve asked several nurses and doctors what the level is, and I get different answers.  The doctor told me 6-8, but the nurse today told me 6-9.  I’m going to hold off on more blood work for now, and discuss it with the Transplant Surgeon at my appointment next month.

I had been exercising daily up until my episode of phlebitis in July.  I’ve really cut back since then, hence the low HDL.  I started back up this week by riding my recumbent bike, and then will get back to walking again.

You may have noticed the SiteMeter map on the sidebar.  I get various statistics on visitors (I use the free version), and it’s interesting to see the locations of some of my visitors.  Other countries include (in the last 100 visits) Netherlands, Peru, UK (several different locations), Costa Rica, India, and Jamaica.

Good news; the BK level in my blood went from 7,260 copies last month to 2,257 copies of the virus this month.

A co-worker had BK as well (coincidentally, she has Polycystic Kidney Disease as well), and she was off the CellCept for 7 months, the virus was finally controlled (it never leaves the system), and she’s back on her CellCept.

Everything else is going well.  The episode of phlebitis that I had hasn’t reared it’s ugly head since last month.  I think it happened due to a problem with my orthotics.

The pic above is similar to what I wear.  However, I had a strap put on right above the ankle as well.  I had been doing some intense walking during my lunch hour every day, and the strap was too tight.  It caused the vein in my inner ankle to become inflammed.  I’ve since took the strap off, I’m riding my recumbent bike instead, and no more phlebitis (phleb=vein and itis=inflammation).

Another problem I had in my left foot is some significant pain from an old injury.  About 12 years ago, I fractured the outermost foot bone.  A callous formed on the bone, and juts out of the side of my foot.  It constantly presses against the side of the orthotic.  I’ve dealt with it now for a while, and finally came up with a solution.  I bought a Dr. Scholl’s gel heel pad, cut it to fit, and have it placed so that it cushions the bone.  My pain is much less now (it will never be pain free), and those 12 hour shifts in the hospital should be a lot more tolerable.  I’m stuck as far as pain relievers, as I can only take Tylenol and narcotics.  I don’t like to take narcotics unless I’m desperate, so I was trying to get by with Tylenol Arthritis.  It helped, but the cushion will be much better.

In the kidney patient community, Swine Flu (H1N1) is certainly on our minds. As of now, it is a worldwide pandemic.  Bill Peckham’s blog (Dialysis from the sharp end of the needle) has an interesting post regarding how an overwhelming surge of cases will be handled (basically, who is treated, who is not treated).   Bill’s blog is also a great resource for other issues related to dialysis, and he has a regular listing of blogs in the kidney community.

The Department of Health and Human Services has a website that also may help answer questions at flu.gov.

I must admit that I had a misconception that I cleared up through flu.gov.  I thought that all of the vaccines for Swine Flu were live viruses, therefore making me ineligible for the vaccine. However, it appears that the injectable form will not be live (the same as the vaccine for seasonal flu), and there will also be a live virus vaccine as a nasal spray.

As with any decision, it’s risk vs. benefit.  I’m concerned that although there are clinical trials being carried out on the vaccine, they are not as comprehensive as normally would be done – obviously due to the time factor.  I haven’t decided yet whether I’ll get it, but after finding out that it isn’t a live virus vaccine, I may end up getting it.

As many of you transplantees may already know, CellCept is now available in generic, and Prograf has lost patent protection (although I’m not aware of any generic versions yet; correct me if I’m wrong).

I discussed this with my transplant surgeon at my last appointment (BEFORE I found out I had BK virus and was taken off CellCept). He said he preferred me to take brand CellCept, but that if my insurance didn’t cover it, I’d have to take generic.  I pressed him as to whether there is an appreciable difference between brand and generic, and he eventually said “no”, but that he preferred I’d take the brand.  (huh?)

I discussed this with a pharmacist I work with, and he explained that in some drugs, if there’s a narrow therapuetic index (the difference between therapuetic and toxic), then it may be an issue, but with CellCept, it shouldn’t be an issue.  (I hope I got that right)

Anyway, I had read somewhere on an internet forum that there may be up to 15% variability between brand and generic as allowed by the FDA, but this is apparently FALSE. Given that there is only a low single digit difference between the 2, it’s not a concern, especially as there are OTHER factors with absorption, such as interference from foods and minerals. In other words, your drug levels will be pretty close each time you take a med, but never exactly the same.

I plan on taking generic when I’m back on CellCept.  My rationale:

• My insurance has a “lifetime limit” of drug coverage. By taking the lower priced med, I will reach that later rather than sooner
• I have periodic ICF’s (Immune Cell Function) done; this should pick up on any problems

For those who will stay on brand CellCept, here is a link to some help with co-pays (unless you are on Medicare or Medicaid):  click on “Click here for details” at the CellCept for Living website.

For those on Prograf, check out the Prograf Value Card program.

Thoughts on this?

I received a call from the Transplant Nurse on my way in to work today.  She called to give me the results of my blood work from Monday regarding the BK virus.

On the surface, the results don’t look good-I have BK virus in my blood. However, I expected that, being that there was over 39 MILLION copies of BK in my urine.

But it was actually good news: there are only 7600 copies of the virus in my blood, and the only treatment is that which I’m already doing-stopping the CellCept.  No need to treat with Cipro or Leflunomide; they are just going to monitor my blood monthly for the number of copies of the virus, and once my blood is clear, they will monitor my urine.  When the urine is clear of the virus, I’ll go back on CellCept.

When they didn’t screen for this, BK killed off a lot of transplanted kidneys.  I’m very fortunate to have been screened, as this will prolong the life of my “new” kidney.

Of course, the week wouldn’t be complete without ANOTHER problem popping up; this time, unrelated to my kidney.

On Tuesday morning, I was awakened at 4:30 out of a sound sleep with pain in my lower leg near my ankle. I’ve had a similar pain in the opposite ankle before, and given the problems I have with the Charcot Marie Tooth disease, I passed it off to a musculo-skeletal pain, assuming it was probably tendonitis (I’m a nurse, not a doctor).  I went to work, and the pain increased. When I took off my orthotic (splint) and sock, the area of pain was BURNING like mad, and was red.  At that point, I thought it might be the start of Shingles, given the quality of the pain, the redness, and the fact that I’m immunocompromised.

Working in the same clinic as my primary doctor has it’s advantages (which I do not abuse), and I got an appointment right away. My self-diagnosis was wrong, and it turns out I have phlebitis (an inflammation of the vein). My theory is that the strap on my orthotic was too tight, along with the fact that I do some intense walking over lunchtime, which caused the phlebitis.

It’s still flared up. When I stand or walk for over 10 minutes, the pain returns. In fact, standing in line 20 minutes today waiting for my picture license was a killer, but I elevated it once I got to work, and it was better.  It worsens then when I’m driving, since it’s putting strain on the vein.  Elevating it for about 30 minutes calms it down, so I’ve been limiting walking.

The problem with medication is that the traditional treatment, Naproxen or other NSAIDS, is a big no-no with having the transplant, as these drugs are notorious for damaging kidneys.  So I’ve gotten by with Tylenol Arthritis (great drug; even better than Extra Strength Tylenol), and an occasional Percocet (3 in the past 2 days).

I’ll be sure to post an update with my labs in a few weeks, and will probably have a kidney-related post as well.

The Transplant Coordinator called me today with the results of my urine test for BK virus from last week; I have greater than 39 million copies of the virus in my urine. (they only test up to 39 million, so I don’t know the actual number; whatever it is, it’s a lot).  Anyway, I drew blood today (I still have my fistula and still draw my own blood from it) to check if it’s in the bloodstream (it most likely is).

The plan for now is to totally stop my CellCept, and continue on my current Prograf dose of 3mg in the am and 2 mg in the pm (my Prograf level last week was 7.9, and the desired range is 6-8). Depending on the blood result, I will probably be put on a 10 day course of Cipro, which inhibits the virus.  Hopefully, going off the CellCept will once again allow my immune system enough “power” to prevent further replication of the BK virii (I think that’s plural for virus), and once it is not detected, to go back on CellCept.  There will be a monthly urine indefinitely to monitor the level of BK in my urine, along with my monthly routine lab work to monitor my Prograf level, blood count, and kidney function (Basic Metabolic Panel).

I’m still not worried.  The advantage I have is that I’ve been monitored for BK  since my transplant, and 3 months ago it was negative, so it hasn’t apparently had time to do any major damage, as my creatinine is still 1.2, which is where it has been since getting the new kidney.

I’ll have the results of today’s blood work by early next week, and will post again when I find anything out.

I had my quarterly visit to the Transplant Surgeon on Monday, and everything at the visit was good. My creatinine is 1.2, hemoglobin is stable, and blood sugar normal (sometimes Prograf can cause elevated blood sugars).

However, I received a call today from the Transplant Nurse, and my urine tested positive for BK virus.

For those unfamiliar with this, BK virus is present in 80% of humans, but remains “latent” due to the immune system keeping it at bay. In those like me who are immunosuppressed, BK can “reactivate”. The problem is that BK can cause damage to the kidney.

So, I just gave a urine sample which will be a quantitative test for BK (they will count the amount of the virus present in my urine). If the number is over 2,000,000, they will then check to see if it’s in my blood. The treatment is usually to decrease the CellCept dose. However, since mine was just decreased from 2 capsule every 12 hours to 1 capsule every 12 hours, they may stop mine for now, and I’ll just be on Prograf.

My guess is that when I was over-immunosuppressed this past spring (my immune cell function was in the 70′s, which is very low, and an indicator of over-suppression), and that is how it reactivated; my last immune cell function was in the 200′s, which is where they want it. It is what it is, and I’ll just deal with what I have to. However, I’m not too worried, as I’ve talked to patients who this happened to, and they did fine.

My sister is still in the hospital (she’s 2 weeks post-transplant today), and awaiting placement in rehab (physical rehab).  The Rehab Hospital on campus can’t take her, because she needs a private room, so the plan now is a local Rehab/Nursing Home until she is able to walk.  In addition to the weakness brought on by 2 weeks of being in bed, her feet are swollen at least 3 times the normal size, so she can’t get her Orthotic on her foot, and thus can’t walk well.

She’s also not eating and drinking very well, and still has the central line (IJ line) in her neck.  They were going to put a PICC line in, but the nurse didn’t do it, due to it being in a vein that formerly was a fistula site (that didn’t “mature”).  The doctor cleared her for that, so the plan is apparently to remove the IJ line and insert a PICC for intermittent IV fluids, blood draws,  and to give IV Lasix (to get rid of excess fluid).  Her creatinine is still in the 7 range, but the docs apparently are confident that the kidney is working, and just needs to “wake up”.

The chronic constipation that she had (that most, if not ALL dialysis patients have, including me) is now the opposite, thanks to good ole’ CellCept (one of the drugs used to suppress the immune system).  The fluid retention and diarrhea are both things that happened to me, and I assume are normal.

Since she isn’t drinking well, she had a NG tube (Feeding tube) put in from her nose to her stomach, and they are giving her water every 4 hours through it).  I was there to visit today, and she is urinating more than before, so that’s good.

I had my last of 3 weekly labs last week, and just found out the results of my Immune Cell Function; it was 243, which is right where it should be.  They cut my CellCept dose in half when it hit 71 back in April, so that apparently did the trick.