My Story -- with a little better ending

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My Story -- with a little better ending

Postby patoco » Sat Jun 10, 2006 3:29 pm

My Story -- with a little better ending

Rob Muirhead

originally posted 02/23/2004

Hello from Orlando Florida. Here’s my story, which I hope will be of some assurance to you. I apparently was born with primary LE way back in 1948. But it took until about 1994 for it to blossom into a secondary, and eventually horrific, manifestation.

It all started with a trip to the dermatologist, about 10 years ago, for what appeared to be a rash around my ankles. I had always had thick ankles and calves, but no one associated it with anything but obesity. After two years of unsuccessful treatments, my dermatologist became suspicious and referred me to a vascular surgeon (sound familiar). The VS looked at the rash and developing edema and pronounce his verdict -- LE!

The next three years I struggled with worsening symptoms and a 4-chamber bio-compression circulator that did little good. Of course the doctor blamed it on me (sound familiar). Four hours a day, then six, in the circulator wasn't enough for him. I think he believed I was lying. Finally the durable goods supplier who sold me the BCC said that he could not get boots any larger, so I dumped the BCC, and the doctor.

My second VS told me a similar story about LE not being curable and that I would eventually have to undergo something like "de-bulking" (sound familiar) somewhere like the University of Florida Shands Medical Center. My gut said, "HELL NO!" The LE continued its triumphant march onward.

In 2002 I realized things were spiraling out of control. My right calf was now 41-inches and the left was nearly 39. My weight over 7 years ballooned 150 additional pounds. Now I was over 400 and I’m only 5’7”, if I really stretch! Everyone began to excitedly murmur around me – “what to do, what to do?” But, there were no rational answers.

Then I got a break during the summer of 2002. My daughter’s mother-in-law attended a medical seminar on wound care in Orlando. She is the head shift RN at the local ER. They talked about causes and solutions and mentioned a VS at the University of Miami by the name of John Macdonald. “Trapper John” or “Doctor Mac,” as he is known down there, specializes in LE and wound care. He also studied the Vodder method in Germany. “A possible angel from heaven,” I prayed mightily. My hopes soared as I prepared for my trip to Miami. I was not let down this time. I had finally been steered to a professional with knowledge, skill, AND empathy.

Doctor Mac’s first counsel to me on my initial exam was, “Forget everthing… everything you have been told.” He then explained LE to me with specificity that I had never heard before. His countenance and reassurances exuded the fresh air I hadn’t breathed in almost a decade.

His regimen, however, was tough, but promising. About a year of intensive MLD and Compression Therapy, by a Vodder trained Physical Therapist in Orlando is what he prescribed. If I religiously adhered to this 365 day program, I would be mobile in a year, he predicted. I came home charged and excited. But I discovered I had a few obstacles to overcome. I quickly found several Vodder trained PT’s, but their availability was going to be a problem. Two were on maternity leave and two were working for local hospitals, but were pregnant. What were they all drinking! Then I discovered that my health insurance plan was only going to cover about 100 visits over the 2002/2003 period. The doctor said I would need 270 to 360 treatments. But I was not deterred. I knew in my gut this was the right course for me and I had to make it work, somehow.

My PT was wonderful, empathetic, and very skilled. Again, I was blessed. I felt the fluids leaving my lower extremities with every visit. We became good friends, but she had a family and a baby on the way in nine months. Her involvement would have to decrease as her due date approached, and of course I had limited health insurance coverage for her treatments as well.

I turned to my church and fellow saints next for ideas, support, and prayers. A group gathered at my house in the Fall of 2002 to counsel with me on my needs. Amazingly several recently retired, able-bodied men, and a remarkable retired RN, volunteered to assist the PT, and be trained to support my prescribed therapy. They would come to my home six days a week on a rotation, and perform the MLD and wrap my legs. How could I have been so blessed, I contemplated! Surrounded by all this wonderful support I stuck to the program to the letter, and centimeter by centimeter the results became evident almost immediately and continued over the next 12 months. In addition, I lost nearly 90 pounds of fluid, which obviously did my heart and body good. In June 2003, I added the Atkins Diet to my routine (I like meat and salads) and will soon be back to my 1996 weight. After that I still need to lose another 70 pounds, but I can see now it’s all achievable, with commitment.

Do I believe in Vodder MLD and CT? You bet! And I thank heaven everyday for being lead back to a fuller life and mobility. I still have a ways to go, mind you. And I know MLD and CT will be a lifelong life-style adjustment, but to have been lifted from the state I was in to where I am now has convinced me to always stay the course.

Rob Muirhead
Altamonte Springs, Florida
23 Feb 2004
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Postby joanne johnson » Fri Jun 23, 2006 3:01 pm

Hi Rob,
What an amazing story and the ending is even better. Many of the things you wrote about did sound familiar. I also have leg lymphedema and used the pump which proved to be a waste of time and money!

You are certainly blessed by your very giving church friends. Continued good luck to you!
joanne johnson
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Joined: Sat Jun 10, 2006 12:23 am

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