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Eventful week

Posted Jan 08 2010 8:09pm

A lot has been happening lately, leading to an eventful-no, actually a stressful week.  My kidney is doing fine; creatinine of 1.1 and my BK virus level decreased since last month, from 800 to 600!

However, I developed a pressure ulcer on the side of my left foot last week.  As I’ve mentioned before, I have a hereditary peripheral neuropathy called Charcot-Marie-Tooth disease.  I have Type 1a, which is the most common, and one of the least severe.  It results in a deformity of the feet from birth (high arch and high in-step).  Over time, the nerves in the limbs begin to deteriorate, leading to weakness, muscle wasting (since the muscles aren’t getting nerve impulses), and further deformity (mainly the feet, but it also affects the hands as well).

I was diagnosed with this prior to Kindergarten; I remember going to DuPont Clinic in Wilmington Delaware as a young child for the diagnosis.  I also remember periodically going to the “Wyoming Valley Crippled Children’s Clinic” (do you think THAT name would be acceptable today?) and seeing the Neurologist and Orthopedic Surgeons.  Back then (late 60’s/early 70’s), the treatment was a brace consisting of a boot like shoe, and a metal  bar attached parallel to the leg, extending to the shoe and up to a strap below the knee).  Needless to say, they were hidden by me in my closet after a few short weeks.  I also had wedges placed on the outer sole of each shoe to attempt to straighten out my foot.  Neither of these worked.

As the years went by, I tried various shoes, and the only ones I have yet to find that work for me are New Balance tennis shoes.  I wear out the outer sole in about 2 months, and then have to replace them.  About 4 years ago, I started tripping and falling on my knees, sometimes even at work when I was escorting a patient to a room.  I was seeing a Neurologist at the time (due to a seizure after brain surgery to evacuate a Subdural Hematoma), and he referred me to a Physical Therapist, who then referred me to an Orthotist.  I had custom molded orthotics (aka AFO or MAFO), and they have been a godsend.  I’ve had them for 3 years now; when I’m wearing them, I walk with confidence.  When I don’t wear them, my walking is very tentative.

Gradually, my left foot has worsened, and more pressure is on the outside of my left foot is increasing it’s degree of supination. The right is as well, but due to an old fracture of the outermost foot bone, there is a bone callous on this part of my foot that sticks out, and consequently, an excess amount of pressure, as well as a very thick callous of skin.

Over the past few weeks, I’ve been having increased pain in this are, and the day before New Year’s Eve, noticed a pressure ulcer on this area.  I saw a doctor in the practice I belong to, and he referred me to the Podiatrist, as well as to an Orthopedic Surgeon.  I had the latter appointment 3 days ago, and told him up front that surgery would be a last resort; I was just looking for a consultation to find out my options.  He offered me 1 non-surgical option and then 4 surgical options; I chose the non-surgical option for now, which is to see the Orthotist for an adjustment to my AFO or possible have a new one made for my left foot.  The surgical options, from “least invasive” (his words, certainly not mine) are to cut the 5th foot bone out, tendon transfersosteotomies, and finally, a fusion of the foot bones called a “triple arthrodesis”. I think eventually there will be surgery in my future; how long, I don’t know.

I saw the Podiatrist today, and initally, he thought the ulcer would be extensive underneath the callous, but after debriding the callous, found that it wasn’t. For now, I’m just keeping a dressing over it and applying Vaseline to soften the skin and minimize further future callousing (a word I just made up), and will see him again in 2 weeks for more debridement.  I see the Orthotist next Wednesday.

As for the stress, obviously this has been on my mind.  But our son has been having a very rough senior year in school.  I won’t go into details out of respect for his privacy, but suffice it to say that it stems from a very unprofessional action by one of the supposed professionals in his school.  This has spawned a multitude of other issues, and we are trying to deal with them now as best we can.

I’m still keeping my positive attitude, although it is difficult at times.

I have my quarterly Transplant Surgery appointment in 2 weeks, and am really looking forward to it, as I finally get to see the surgeon who put in my kidney (usually I see the other surgeon, who I like just as well).

And finally, January 14 will be my 8 year anniversary for my Gastric Bypass surgery!

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