Meet Limb Loss Survivor Marc Paffhausen
Location: Bozeman, Montana
Job: Director of Development – MSU Alumni Foundation
Overcoming a limb challenge and amputation
Limb Preservation Foundation (LPF): How are you doing now? What progress are you most proud of?
Marc: My journey has been mainly positive since my diagnosis at age 25 and I am most proud that I was able to continue a very active lifestyle. I am now 57, and have been so very fortunate to raise a family and see 2 of my 3 kids through college at this point. I have been an active college and high school football and basketball official for nearly 35 years. I ski, hike, mountain bike, and float the Montana rivers. I enjoy fishing and hunting in the great outdoors of MT, CO & WY. I’ve kept a positive mindset over the years and overcame adversity with faith, hard work and determination. I’ve mentored a few folks over the years faced with similar challenges and feel that my story is a positive one to share realizing many diagnoses and subsequent treatments do not turn out as well as mine did.
What would you want other people in the same position to know?
The initial diagnosis and suggested surgical procedure(s) do not always mean that is exactly what will be found to be the actual clinical diagnosis or the planned treatment in each case. Having faith that your care is in the hands of some of the brightest minds and best care staff goes a long way in keeping a positive mindset. I was only 25 years old at the time and I know what it’s like to be scared and hear a doctor tell you “we may have to amputate your leg at the hip depending on the biopsy results”. I was lucky as my tumor, although massive in size, was benign. I was determined to not let the physical challenges that I was left with keep me from doing everything I had always done as a very active person. For the most part, I’ve accomplished that goal over the past 32 years thanks to the first-class care that I have received and by keeping a positive mindset.
What kind of support did you appreciate most?
I spent the first 6 months of 1990 away from family and friends while recuperating with daily physical therapy and undergoing radiation treatment from the results of the initial surgery based on the clinical diagnosis. The people at the University of Utah Huntsman Center were amazing during that time and key to my rapid recovery to normal life and activities. I have received the same “family-type” support from my Denver area team of doctors since 1993 in conjunction with my general practice doctors wherever I have lived across the country.
What has been the most challenging part of your journey?
The costs associated with medical care were daunting. I was able to pay all of my debts on my own that were not covered by insurance over several years under a payment plan that allowed me to still have a decent lifestyle. Today, I personally donate when I can to the LPF in order to help those less fortunate be able to cover some of these costs – every little bit helps!
What was something you didn’t expect on your journey or in recovery?
I did not expect to be faced with some of the related health challenges that were potentially linked to my initial diagnosis. Keeping a positive mindset can help you get through many of those challenges later in life on this journey. It is a marathon, not a sprint. Trust those doctors and care providers who are part of your team as you are in it together!
What are your hopes for the future?
I am hopeful that my care team can coordinate a plan to give me a normal-looking right leg in my later years in life. The continued atrophy makes it difficult to wear clothes with confidence. I want to continue with a very active lifestyle as I near my retirement years.
Why would you recommend that other people facing a limb challenge reach out to the Limb Preservation Foundation?
It is a first-class organization. There are options to help you physically, financially and psychologically through your difficult time. Reach out!