And Yet Another Surgery

I’m headed for another medical first for me: 2 surgeries in 1 year.  The first surgery I had this year was when I had my dialysis fistula tied off in April (along with the associated debacle in the hospital several days later).

The previous April, I had surgery on my left foot due to an infection in my foot bone (osteomyelitis) as well as a deep tissue infected from a foot ulcer, and the associated debacle 3 weeks after THAT surgery that put me in to the hospital with Acute Renal Failure from an interaction with my Tacrolimus (I was prescribed Fluconazole for the Candida Parapsilosis in my foot, which caused my Tacrolimus levels to go to 33, leading to ARF).

I just now got back from the Podiatrist, and had the persistent ulcer on my right foot debrided, and given Cipro for the beginning of a cellulitis.  It never really healed well from the cellulitis I had last month, and started “acting up” again over the past week.  He told me I probably have a multiple organism infection, which if not treated, would most certainly become much more problematic, especially given my immunosuppression.

This is all a direct result of my Charcot Marie Tooth peripheral neuropathy.  The muscles in my leg have deteriorated over my 49 years, and although I use a fitted lower leg orthotic, there is a lot of pressure on the outside of my foot, which caused an ulcer.  It will never probably heal well, so my Podiatrist suggested I talk to my Orthopaedic surgeon about reconstructive surgery on my right foot.  I had it done on my left foot last year, and I’ve had no problems at all on the left since my surgery.

I knew this was coming, and although I’m hesistant to do it, I know I need it, and will have it done.

But, there will be 2 conditions I set before having it done (doctors HATE to hear that).

First and foremost, I will insist on a PCA pump, aka Patient Controlled Analgesia.  When I had my left foot done, the Anesthesiologist wouldn’t do a nerve block (rightfully so, being that I have neuropathy).  Thus, I ended up getting “bolus” doses of Morphine and Dilaudid, with much nausea/vomiting and poor pain control.  They did this because they planned on only an overnight stay, but it ended up that I was in for 2 days.  I had PCA for my kidney transplant and gastric bypass, and had excellent control of my pain with little to no nausea.

Second, I will have the Transplant Surgeons consulted while in the hospital to avoid any errors that put my kidney at risk.  They are the ones who manage my Tacrolimus, so they will be the ones to ensure that my kidney is safe.  After my hospitalization this past April when they gave me too high a dose of Vancomycin, I want somebody watching over the meds I get.

So for now, I’m hoping the Cipro helps, and will hopefully get an appointment to see Dr. Cush within the next several weeks.

As for my readers, feel free to contact me via the comments section.  There are people from around the world who read this blog, and I’ve had questions in the past, particularly about BK Virus treatment.  Thanks for reading and following.  I hope someone finds my posts helpful.

BK Virus Role In Prostate Cancer

A team of Swiss investigators has found a link between the polyomavirus BK and prostate cancer.

It’s an interesting concept.  Viruses are well known to be linked to development of cancers.  For example, those of us who are immunosuppressed, either purposely through medications, as in the case of transplant or to treat autoimmune diseases, or through disease, such as HIV, are more prone to Lymphoma via Epstein Barr Virus (commonly known to cause mononucleosis).

With more research, there may be the impetus to find a treatment for BKV, given the prevalance of prostate cancer.

As kidney transplant patients are now being screened and monitored for BKV, it will be interesting to see if Prostate Cancer affects male kidney recipients moreso than the general population.

Link via ScienceCodex

Lab Error

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!

I Dodged the Bullet

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…..

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.