Posts Tagged ‘cellcept’

Foot Reconstruction A Success!

December 7, 2012 2 comments

I made it through my 2nd foot reconstruction with flying colors! On November 19, I had a cavovarus foot reconstruction of my right foot, to fix the the deformities caused by Charcot Marie Tooth. As I posted before, a non-healing neuropathic foot ulcer necessitated me having the surgery at this point. I knew I would have to eventually have it, but I was hoping I would have been able to put it off a little longer. However, I’m glad it’s now behind me.

For those familiar with medical “lingo”, the procedures I had done included a Dwyer calcaneal osteotomy, peroneus longus to brevis transfer, first metatarsal losing wedge osteotomy, 5th metatarsal head ex osteotomy, Jones transfer, posterior tib release, toes 2-4 hammertoe corrections.


As you can see from the pics, the surgeon did a LOT of sewing!

I had a similar “reconstruction” done last year, although I didn’t have the hammertoe corrections.

The pain has been manageable this time. Due to the neuropathy, the Anesthesiologist didn’t do a nerve block, but due to excruciating pain (despite a Diluadid infusion/PCA pump), I was taken back to the PACU that night and another Anesthesiologist did 2 nerve blocks, which made the pain tolerable. Now, I’m able to get by with Tylenol and an occasional Tylenol #3.

I’m looking forward to FINALLY getting back to walking. I haven’t been doing any due to the pain from the pressure on the outside of my right foot while in my Ankle Foot Orthosis; there was an extreme amount of pressure on the outside of my foot due to the deformity. I can now get rid of the AFO, and once the cast is off, will be put in a “boot” (Bledsoe?) for a few weeks, and after that, will only need a hard plastic in-the-shoe orthotic insert.

My hemoglobin did drop down to 10.1 post op, but as of last week, I’m back up to 11.8.

As for my kidney transplant status, no “medical misadventures” this time. (here and here)

As you may remember, I had gone off of the Leflunomide back in May, which was used to keep the BK virus suppressed. I had a jump in BK in October from 600 to 5100, and was mildly concerned that it may become a problem, but as of my last check (last week), NO BK! If I’m not mistaken, this is the first that it was negative since April 2009!


I’ve been off CellCept since August 2009, but since my kidney is doing well just on Tacrolimus, the Transplant Surgeon told me that he probably won’t restart the CellCept, even if the BK goes into remission.

I sure hope that I’m done with any medical “speed bumps” for the foreseeable future.



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.

November 2010 BK Virus update

November 17, 2010 2 comments

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

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!

February Labs

March 9, 2010 2 comments
I had labs 2 weeks ago, but am just now getting around to doing a blog entry.
My kidney labs are fine; Creatinine 1.2, BUN 23, and GFR >60.  My blood counts are normal (for me, that is; I have Thallasemia Minor, a form of anemia)-my Hemoglobin is 12.9.   My Prograf level is 8.6, which is within the range they want.
As for the BK virus labs, they are puzzling.  BK is still detectable in my urine (as expected), and it’s once again detectable in my blood (last month it wasn’t).  The puzzle is that the number of viral copies in my urine decreased from 226k last month to 196k this month, yet it went from no copies last month in the blood to 800 copies this month.  BK usually appears first in the urine and then the blood. I don’t know why it decreased in the urine yet increased in the blood. Not a big deal; I’ll just have to wait to see what it does next month.
My CellCept is still on hold due to the BK, but the plan is to resume it once the BK is once again dormant.
I’ve been having problems over the winter with pressure ulcers on my foot.  For those not familiar, I have a hereditary neuropathy which causes degeneration of the nerves in the arms and legs, leading to muscle shrinkage.  I wear orthotics that give my legs support and allow me to walk normally without holding on to anything.  When you see me walk, you would probably not be able to notice this, unless I’m not wearing them.   I don’t let it stop me, nor do I think about it.  It is what it is, and life goes on.
I had a fracture on the outside of my left foot years ago, and the bone healed with a bone callous protruding out the side (it looks like a bump); I have a thick skin callous in the area that rubs against the orthotic, and in December, I developed a pressure ulcer there. I’ve been going to the podiatrist every 2-3 weeks, and had a visit last Friday.  After multiple visits to shave the skin callous, and 2 visits to the Orthotic tech and Orthotist, I have my Orthotics adjusted to a comfortable configuration, and I don’t have to go back to the Podiatrist until needed in the future.
Now that my Orthotics are fixed, I have started walking at lunch time. I’m hoping to get the “winter pounds” off, and get back into better shape.

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.

September Transplant Labs

September 21, 2009 Leave a comment

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.

BK update for August labs, Swine Flu

August 22, 2009 3 comments

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

I must admit that I had a misconception that I cleared up through  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.

Transplant Meds – Brand vs Generic

July 30, 2009 8 comments

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?