Patient Stories: John J Heffner

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My name is John Heffner, and I have a disease probably most of you have not heard of. It’s called RSDS - Reflex Sympathetic Dystrophy Syndrome/Chronic Regional Pain Syndrome. It’s a disease that takes control of your nervous system and your muscles, causing chronic pain seven days a week. It can go from mild to severe in an instant.

Back in 2002, I was in a work accident where 1500 lbs of steel came loose, pinning me down, doing a lot of damage to my body. One leg was twisted all around and the accident also injured my back. After many different surgeries and much therapy, I was so glad to get out of my wheelchair - even though I still suffer from relapses which put me back in there occasionally.

To be able to get around I have to wear KAFO (Knee Ankle Foot Orthosis) braces, which go from the top of both of my legs down to my toes. These have been made by Dankmeyer. I also use forearm crutches. I can’t stand for very long, nor can I sit long, but without the equipment that Dankmeyer makes for me every year I would be permanently stuck in a wheelchair. I appreciate the good products they make and quality of care that they provide.

I am working on a fundraiser for RSDS - it is the second annual Virtual Walk Event on June 26, 2021. My team is the “Jay Heffner” team, and you can join me by clicking on this link. - John Heffner


Mr. Heffner’s orthotist is Rebecca Frost, CPO, in our Cumberland area office. Becca has provided some close up images of KAFO examples. You can also see Mr. Heffner wearing his KAFOs in the photo he provided below. Becca explains that a KAFO supports muscle weakness affecting the knee, ankle, and foot. This would include knee buckling, joint laxity or muscle balance causing hyper extension, deformity, etc. Muscles affected would include everything BELOW the hip - the front and back of the thigh, the lower leg, and foot.

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Patient Stories: UPDATE: Dr. Andrew Rubin and Infinite Biomedical Technologies

Dr. Andrew Rubin has shared his story with us before. A patient of Mark Hopkins, CPO, Dr. Rubin is a writer and English professor who has had an amazing, almost unimaginable journey that eventually brought him to the research team at Infinite Biomedical Technologies (IBT). Dr. Rubin, Dankmeyer, and the IBT team have worked together in a collaborative effort to bring about some very positive outcomes in this story. Dr. Rubin is featured in a recent article on the I-Biomed website, which we would like to share here as well. Please click here to read “Andrew’s Story.”

Patient Stories: Kleyton Feitosa

Some people know Kleyton as Pastor Feitosa. That is because he is currently serving as pastor at the Living Word Seventh-Day Adventist Church in Glen Burnie. (All are welcome to visit!) The path to his congregation in Glen Burnie is a long one that covers at least three continents and four languages.  The website for the church summarizes this pretty well:   

“A native of Brazil, Kleyton grew up experiencing and enjoying the cultural diversity of his vast country. He enjoys ministering to people of different culture and ethnic background. His passion for cross-cultural ministry has taken him and his family to minister in four different countries – Brazil, The United States, Egypt and Sudan. Kleyton is fluent in Portuguese, English, Spanish, and knows some Arabic as well.

During his years of work he has served as a teacher, a school chaplain, a youth, associate, and senior pastor. He has also ministered in leadership positions as Conference Executive Secretary and Mission President. Kleyton earned a Bachelor’s degree in Theology from the Latin American Theological Seminary in São Paulo, Brazil, a Master of Arts degree in Missions and a Doctorate in Evangelism and Church Growth, both from Andrews University.

Born and raised in a minister’s home, early in his life he felt called to serve the Lord as a pastor. He is passionate about serving God and serving people and is looking forward to the second coming of Jesus. He is also passionate about his family and enjoys spending time with his two sons, Derek (16) and Malton (14). Kleyton is happily married to his High School sweetheart Delma, an educator and counselor.”

What this summary doesn’t tell us is his journey through cancer and the amputation it led to, and his subsequent choice of a relatively new procedure known as osseointegration to get his prosthesis.

Kleyton was serving on a mission in Cairo, Egypt when he had to return to the US for his health. He had a reoccurrence of cancer in his left leg. After multiple recurrences and several surgeries, surgeons at Johns Hopkins were at the point where they could no longer spare his limb. The resulting residual limb was very short – ending so far above the knee that making a prosthesis was going to be a very difficult effort. Where most patients with amputation would have received a temporary prosthesis in three months after surgery, he could not. He was better off with crutches than the difficult prospect of trying to fit a prosthesis. This was not a satisfactory solution for Kleyton. When his physician mentioned the possibility of osseointegration (OI), he consulted with Dr. Jonathan Forsberg at Johns Hopkins Osseointegration Clinic.

Pastor Feitosa visited an osseointegration clinic at Sibley Memorial in DC., a Johns Hopkins institution, to begin the process.  He went about learning just what osseointegration is. For an excellent video about the technique and its benefits, watch this short video from CBS Sunday Morning. It is an innovative procedure to attach an implant directly into the bone of the residual limb, in order to allow a prosthesis to be attached without the traditional socket.  There are many benefits to this option – solving issues such as excessive sweating, pain, pressure, chafing and skin sores.  Not everyone is a candidate for this, but Kleyton was and chose to proceed with the method.  Paramount to him was regaining the kind of mobility that crutches did not allow.

There are many different types of implants and there was a decision to make as to what type should be used.  Kleyton chose one that Dr. Forsberg developed, which at the time required quite a bit of paperwork and an approval process.  What would normally have taken three months to get your first temporary traditional prosthesis turned into a frustrating two year effort.  Kleyton trusted and prayed for the right outcome, and he eventually received a different implant.   

There are those who might shy away from this process, that is, having something attached directly into your bone.  Kleyton says he felt like he was fighting for his life, and in this context, he had no qualms about getting it done and allowing him to walk again.  He was super excited!  He watched YouTube videos and educated himself about this rare procedure.  Everything he saw and heard told him that osseointegration was an amazing improvement over the traditional socket and was the way for him to go.

The process involved two separate surgeries for this particular style of implant: one to put in the implant and close it, then wait for healing.  Then, because of COVID restrictions he had a delay of six months to have the second component put in – this is the part that shows on the outside where the prosthesis clicks in.  He was still on crutches waiting for this to happen – couldn’t carry anything, or move things around.  He had to be creative to carry things, often wearing a backpack just to carry his computer.  He wanted to get off those crutches and free his upper limbs!

Right after that second surgery you start bearing weight, and in six weeks he was ready for the prosthesis.  The feeling after standing on two feet again was amazing.  It was a process – learning how to walk again.  Those with osseointegration have to take care of the implant site to avoid infection, but gaining mobility was a worthwhile tradeoff for that vigilance.   He also has to be concerned about impact sports because of the implant into the bone.  His surgeon doesn’t want him to run or jog, so soccer is out of the question!  He can go to the gym and work out.   

He is happy to be able to walk again – visit his congregants and stand at services.  Interestingly enough, those with osseointegration have what is known as osseoperception, or the ability to sense the world through the limb, and osseoproprioception, or the ability to sense where the prosthesis is without looking at it.  Kleyton says when he walks on the grass, he can “feel” the grass.  He can “feel” the ground through the prosthesis.  

He communicates often with the worldwide community of others with osseointegration via Facebook and Instagram.  These forums are available for everyone to share information with other osseointegration users and those interested in the process.  One day, when COVID doesn’t control so many of our international travel options, he hopes to visit those people and places.   In the meantime, he would like for others to know that while OI is new, it will change your life for the better forever.  He doesn’t regret having done it, and has never heard regrets from anyone else who has done so.  It has improved his life 100%.

If you are thinking about being an amputee, remember it is not the end of the road, it’s just a detour.  Don’t get discouraged.  We are all on a road trip in our lives, and we all go through detours that are there to teach us life lessons.  We need to have courage and faith and determination. We take the detours, face these challenges, and we just have to come back to the road to continue the journey.  My faith has helped me greatly.

If you want to “meet” and hear his testimony about his cancer and faith, you can watch this video of Pastor Feitosa on YouTube by clicking here.

Patient Stories: Dawn Miranda and Joe Maese

This story is from our own Dawn Miranda, Dankmeyer Prosthetist Assistant, who is also a below knee amputee. You can read Dawn’s monthly blog here on our website. This is a special first time ever, team patient story - about Dawn and Joe Maese and their experience together, which they call Amputees Supporting Amputees. They were accompanied on this adventure by Danny Weiser, Dankmeyer Prosthetic and Orthotic Resident who also happens to be a professional photographer. Danny took all the photographs for this story at Gold’s Gym. COVID safety measures were taken. All workouts at the gym were performed in a private area (thanks to other clients for clearing space to make this possible), all equipment was cleaned, and masks were worn except when spotting each other or working out alone, or for brief photos.

Brothers and Sisters

Brothers and sisters can be defined as more than blood. Brothers and sisters in our world are built of carbon fiber, aluminum pylons, tubing clamps, screws and silicone. Our bond is forged from trauma, disease, pain - lots of pain. It is these things that makes us a unique community, one that is unbreakable.

Our community is limb loss.  The parts that replace our flesh and blood give us strength, after first breaking us down. It is our journey, our shared stories, that make us whole again. We are mothers, fathers, doctors, lawyers, athletes, homemakers, truck drivers, trainers, farmers - our list could go on for days. The one thing we share that is undeniable is our stories. Whether it is in person, or online, we are amputees supporting amputees to overcome limb loss and find our new normal.

This week I had an amazing experience with a friend who happens to be a patient within our practice. We shared an afternoon of workouts, which was captured by our Prosthetic and Orthotic Resident and professional photographer here at Dankmeyer, Danny Weiser. The pictures tell it all:  two friends, amputees supporting each other through a tough workout. This was my first day back into a gym after moving here from San Antonio, Texas a little over a year ago.  We were at Gold’s Gym for this workout to show how amputees support each other.  There was a lot of sweat, iron, and laughter that filled our afternoon as Joe helped me through some weight training and Danny Weiser captured it with his camera and keen eye. 

I am no stranger to hard work as I was raised on a farm in upstate New York. My days began early and consisted of the gym mother nature provided. My gym in my early years consisted of hay bales, tractor tire repairs, wheelbarrows, and one of my favorites - the haymow rope. There was always plenty of snow to move to get to our barns as well. I have had health up and downs. I had a bad running accident at 18 that left me with a fused ankle and a total of 16 surgeries and later a total ankle replacement that sadly failed. Then between those years, two bouts of Non-Hodgkin’s lymphoma (my toughest battle), which I won, but it created some hearing loss in the process.

Fast forward to three and half years ago when I needed to make a decision after all the surgeries. Everyone told me it had to have been the hardest decision to remove my left leg below my knee. I just responded that beating cancer was a lot tougher than that decision. My surgery took away the pain, terrible crippling pain, and gave me relief, like I was reborn pain free and given a second chance on life. After moving from San Antonio, I came to Dankmeyer as a relatively new amputee to start a new professional chapter in my life. It’s through my job as a Prosthetist Assistant at Dankmeyer that I met Josepi Maese - Joe as I call him.

Joe is a quiet man on first introduction, but once you get to know him he is funny and you can see his passion for helping people reach their goals to be their best, healthy versions of themselves. You can Google Joe and up comes a wealth of information. Many of you may recognize his name, as he was an NFL player here in Baltimore with the Ravens. He has a proud history of playing college ball, then he was drafted by the NFL.  Joe played many years of league football then went on to be a professional firefighter and EMT here in Maryland. Joe’s life changed a few years ago when he faced a traumatic motorcycle accident. This accident made him have to make a tough decision like I had to do - remove his left leg below his knee. This never stopped him. He tackled therapy and getting into his first prosthesis like a champion. Joe continues inspire people though his training business 59 Athletics

Gold’s Gym served as our space for our day of workout adventure. Joe has a sweet canine companion who joined us at the gym. Dozer is Joe’s service dog, but Dozer is more than a dog - he is family and he was happy to check out the action. We got set up and Danny suggested some great cross training and weight lifting sessions. We were two people who share the same difference but that day we were just two people getting our workout on!

The warm urban setting was a perfect backdrop for Danny to capture our day. We were socially distanced away in our own areas in the gym and only came near each other’s space for safety when spotting. We cleaned after each use of our equipment as you should always do. Our workout was full of kettle bells, pull up bars, squat racks and battle ropes. We flopped tractor tires too.  As we were finishing up, Danny suggested pushups. Joe came up with one better! He suggested a push up but with me standing on his back!! When Danny showed me our pictures for the first time, with Joe balancing me on his back (he with his prosthetic leg providing a base of strength for him, and me with my leg balancing with stability on his back) I knew then we truly were amputee supporting amputee in both a physical and emotional way. Thank you, Joe, Danny, Dankmeyer and Gold’s Gym for a day I think we all will never forget. 

You can read a previous story from Joe Maese about his experience shortly after his amputation by clicking here. After reviewing the slideshow below, if you would like to know more about Danny Weiser’s inspired photography, you can visit his website by clicking here.