Archive for the ‘Uncategorized’ Category

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.


Decisions, decisions…..

September 1, 2012 2 comments

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.

Acute Renal Failure, Round 2

April 30, 2012 3 comments

For the second time in less than a year, I had another episode of acute renal failure. 

It all started with my surgery on April 10 to have my dialysis fistula ligated (“tied off”).  The surgery went well; it was done under conscious sedation (no general anesthesia), and I felt great leaving the hospital.  My arm was hurting, as expected, but the pain medication was effective.  Being that there was no more arterial flow into the vein (which had several pseudo-aneurysms), the blood clotted and caused a thrombo-phlebitis.  Now, the fistula is very hard, probably because it’s non-functioning, and has calcified. 

The weekend after my surgery, I developed a fever of 102.1 and shaking chills during the night, so in the morning, I went to the Emergency Department on Sunday morning.  From there I was admitted, and that’s  when the problems started.  I was diagnosed as having cellulitis, and being that I just had surgery, was treated aggressively with Vancomycin, in case I had MRSA.  The dose was set by the pharmacist for this kidney toxic drug, and was rather high.  My first dose was 3,000 mg, and the doses every 12 hours after that were 1,750 mg.  The next morning, they checked a Prograf level, and that was high at 12 (unrelated to the Vancomycin).  When they checked a Vanco level Monday night, it was almost double what it should have been, so they stopped it.  My baseline creatinine is 1.1, and when I was admitted, it was 1.3, probably due to the Prograf being high, and being a bit dehydrated.  By Tuesday, it was 1.6, and my Prograf level was 16! (it should be 6-8).  Rather than do anything, they decided to discharge me with an elevated Prograf level and Acute Renal Failure!  I had a rather blunt discussion with the hospitalist, and she decided to not discharge me.  

The next morning, the Nephrology Fellow (a doctor training to be a Nephrologist) came in and told me I needed IV fluids and an adjustment to my Prograf dose.  He ordered IV fluids at 50 ml/hr (which would be a maintenance dose for a 10 year old), and the next day, came in and told me that if my creatinine was unchanged or higher, I would need a biopsy of my kidney (which, after 4 years, I have never had/never needed).  At that point, I sent an email to my Transplant Surgeon, and he was in my hospital room within an hour (he didn’t know I was admitted).  He made recommendations (500 ml of saline followed by saline at 150 ml/hour, no Prograf that night) and by the next day, my creatinine was 1.5 and my Prograf level was 7.2.  I was discharged on that day, and my creatinine is now down to 1.3.  I did NOT need a biopsy, and my creatinine should return to baseline.  The surgeon was shocked at the amount of Vancomycin I was given. 

It took until today, 10 days later, for me to start feeling almost normal.

Lesson learned-whenever I’m admitted, the Transplant Surgeon WILL be consulted. 

Foot Surgery Update and Labs

November 24, 2011 Leave a comment

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”.

Delicate Balance

June 5, 2011 4 comments

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.

January 2011 transplant update, new job

January 30, 2011 Leave a comment

I had my quarterly appointments this week with the Transplant Surgeon and Transplant Nephrologist; everything is stable (except I’m up a few pounds since my last visit; have to work on that).
The BK virus level in my urine plummetted down to 11,300 from last month. Yea!
I start a new job on Monday (1/31-ironically, my very first job ever (as a paper carrier), was started on this date in 1974.  I will be an RN Case Manager for an HMO doing disease management over the telephone.  After almost 22 years in Pediatrics, I’m switching to the “adult world”.  Some might ask if I’ll be able to do well with adults, as all of my experience is with children.  However, I have 17 years experience in phone triage; those who take this job may have experience working with the elderly, but no telephone experience, so I consider myself even with them.
My last day (obviously) was Friday, and it was bitter-sweet.  It’s really tough leaving my co-workers (office staff, nurses, and docs), and to be honest, I’ve had pangs of guilt, feeling as though I am abandoning my coworkers.  But to be honest, my Charcot Marie Tooth (peripheral neuropathy) is gradually worsening, leading to more of a loss of fine motor skills.  Being that I sometimes have to draw blood, start IV’s, and other tasks, I felt it was time to look for a position where I don’t have to depend on my physical skills. I rationilzed my decision when explaing to coworkers that it was time to move on, and the new job has more opportunities for advancement (which it does), but when I really thought hard about it, it’s more the fact that I need to depend more on my brain, as my phsical abilities are decompensating (although I was concerned that my job would eventually be eliminated, and still believe that it’s a possibility, although low).
I’ve triaged patients on the phone for almost 17 years now, and I feel that is my forte; this job depends highly on telephone assessment skills; thus, it is a perfect fit for me at this point in my career.  Anyway, it was tough saying “goodbye” to all of my co-workers (even though I’ll be employed by a different “arm” of the health system I work for now).  And there were several times when I almost became “emotional” (i.e. tears) on my last day.  However, I feel that I made the right decision.
My coworkers overwhelmed me on the day before my last day (the “penultimate” day). They had a very nice congratulations/good bye lunch for me.  When I entered the room, there was a single gift in the middle of the table (I honestly didn’t expect a gift).  When I picked it up, I thought it was a large book. When I opened it, it turned out to be a 32 GB 3G iPad!  Needless to say, I was beyond shocked.  On the back, was a very nice inscription, and upon reading it,  I had to hold back tears. I take my work seriously, and try to do the best I can, and it was apparent that I was appreciated more than I ever could imagine.

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.