Dale Dedrick - phaware® interview 400

Jan 25, 2023

Dale Dedrick is a retired orthopedic surgeon who was diagnosed with lupus and pulmonary hypertension. In this episode, Dale, former United States Paralympic Equestrian Team member, discusses an infection that resulted in a partial amputation of her foot and why it's important "to get back on the horse."

My name is Dale Dedrick. I am in Chelsea, Michigan, which is just north and a little west of Ann Arbor, Michigan, which is west of Detroit. I was diagnosed with pulmonary hypertension either secondary to lupus, which I've had for many years, but I've also had multiple open-heart surgeries and I have a stiff heart. It may also have a certain amount to do with heart disease, because I have heart failure with a preserved ejection fraction. So I have a very stiff heart that can't squeeze easily all the blood out. It fills the blood really nifty, it just can't squeeze it out again.

I have been an athlete all my life. That was what led us to discovering the problem because my athletic performance kept dropping. I was getting older, but it was dropping far faster than would seem normal. I was getting short of breath getting dressed, taking a shower. They finally investigated and discovered, "Well, here's the problem. You have pulmonary hypertension."

That slowed me down some but didn't stop me. I was doing really quite well. Last winter, this time of year, found me in Florida with my horse. I drive a carriage now. I used to ride. But when my heart said it really didn't want to ride anymore, I said, "Okay." So I started driving a carriage. Now, a horse drawn carriage sounds like something out of the old west. It's really as far removed from that as a modern Tesla is from a Model-T car. So the old wooden buckboard that people traveled west in… today, modern carriages are made of aircraft aluminum and have French racing breaks and suspensions on them from motorcycles.

There's a sport called combined driving which was started by Prince Philip, the former Queen's husband in England. As he aged out polo, he liked going fast, doing a somewhat dangerous sport, but he and a number of friends had aged out and they really couldn't do that anymore. So they decided, "We have lots of horses. We have all these antique carriages lying around. Let's go bashing around the countryside in horses and carriages and see what happens." So they invented a new sport. Prince Philip was always very funny when he would say, "And I did very well the first few years. I won a variety of international competitions because after all, I'd made up the rules."

As he developed the sport and they broke a lot of antique carriages and it became harder and harder to find people to rebuild the carriages, they designed modern carriages of lightweight materials, and put modern brakes and steering on them that enabled people to go cross-country up and down over hills, through water, bouncing over rocks and gravel relatively safely. I say relatively because whenever you're driving a carriage, unlike a car, when you put your foot on the brake of a car, the car stops. It doesn't question the request on your part.

But when you're driving a horse, the horse says, "Go right. No, I don't think that's a good idea. Let's go left." And you say, "No, no, no, I really want to go right." And then you say, "Stop right now we're about to go off a cliff." And he says, "Well, maybe we could just slow down instead," or, "I see an opening over there. I can't possibly go that way even though you want to." So you're having a constant conversation with your vehicle. That's very unlike driving a car and makes carriage driving and even horseback riding difficult for adults who are used to a vehicle obeying everything they say.

I was carriage driving with a very lovely horse that I have, and I had taken him to Florida with me and I was using a borrowed carriage and we were competing. All was well, but I had gotten a dopey little wound on my foot while driving to Florida from Michigan. I didn't think a lot of it, but I did seek medical attention and got good care, and kept it bandaged and changed the dressings. Did all the things, took antibiotics. But as January, February, March went on, it kind of wasn't really healing. April, I get home and I went to the cardiologist and I said, "I'm really not doing as well as I think I should be doing. I don't know what's wrong, but my heart doesn't seem quite right." The doctor drew a bunch of blood work and there was some odd things wrong but we couldn't quite get things fixed. I kept getting slowly worse and worse.

So by June, I was really quite a bit worse and my heart failure was becoming a distinct problem, but I still had this hole in my foot that was not healing. When I got to the hospital and they admitted me for heart failure, they said, "This hole in your foot is now involving the bone and we suggest amputation." That's what they did. They got my heart failure under somewhat control. But unbeknownst to everyone, there was more infection in the foot than anyone ever realized. It turns out on closer inspection, I have some kind of genetic abnormality that is not yet fully understood where I really don't have a much functioning immune system. I guess I've not challenged it that many times, but this challenged it. While my foot never got red, hot, swollen, any of the signs of infection, no elevated white blood count, no elevated laboratory studies that the doctors were looking for, somehow the infection ate an entire bone.

By July, this was obviously much more of a problem. I was hospitalized, and took a bunch of antibiotics for that. Antibiotics today, many of the powerful antibiotics contained sodium. What are heart failure patients supposed to avoid? Sodium. So the sodium made controlling my heart failure very difficult. For six weeks on the antibiotics, it was difficult to control the sodium and keep my heart failure and breathing in check. But we managed and stopped the antibiotics. The wound seemed like it was maybe improving, but it certainly wasn't any worse. I was sent home and I tried to get back to normal activities, but they didn't want me to walk on my foot. I have other arthritis in my hands and it means that I can't walk with crutches or a walker. So I was wheelchair confined. At the moment, I'm slowly getting up out of my wheelchair and allowed to walk a little bit, but I've been in wheelchair confined now since June of last year.

The infection smoldered. But all the laboratory studies looked good, and I really didn't do well. I never could really get back to feeling good. My heart failure was a problem. My breathing was always a huge struggle. Finally by October, I had gone to see people about using hyperbaric oxygen to try and heal this wound. Well, in order to do the hyperbaric oxygen, you had to be evaluated by the wound clinic. Well, the last thing we did was one of the docs said, “This foot bleeds freely when you cut into it or puncture it. But when you listen to the blood vessels themselves, you don't hear the same blood flow that you should in a normal leg." I thought to myself, well, that's really not terribly surprising. I mean, I'm 67. I've been confined a wheelchair now for most of the year. They said, "No, no. We think we can make this better." So in come the vascular surgeons, and they say, "We think we can go in through the vein and make this blood flow better."

Well, I didn't really realize how big a surgery it was going to be. So we went with it. At the end of the surgery, the vascular surgeons were elated because they've been able to make it virtually back to normal. Since then, the wound is healing up like gangbusters. I'm entertaining the thought of joining my horse in Florida as soon as this stupid hole finishes healing, and continuing with my carriage driving crashing around the countryside. So the bottom line is if you think there's something wrong, keep bugging your doctors, your nurses. Don't take a simple, "No, there's nothing wrong here," for an answer. Sometimes you really have to dig deep and push everybody to try new and different ideas.

I'm now missing the fourth toe all the way back into the center of the foot. So you wouldn't notice it. It doesn't look any different except that the fourth toe is kind of not there if you think about it.

I think one of the things that stops many people from pursuing or continuing to pursue a sport or an activity after they've become ill, and maybe they're carrying an oxygen tank around, it's not as easy and as simple as it was, is they're worried about not looking like everybody else. We stop doing things because we don't fit in. People today are so worried about what they weigh, what they look like, do they fit in? I think if you throw those norms to the curb and say, "Nah, it doesn't really work for me."

I have a girlfriend who is missing both hands and both feet from a childhood house fire. It happened when she was two years old. She carries on perfectly normally. Ger face is horribly disfigured. Does she let that bother her? Oh no. She drives a car. She goes to work. She's an artist and she carries on. But does she look like everyone else? No. When I do the sport, do I look like everybody else? No. But I don't need to. I just need to get it done at the end of the day.

I think animals are brilliant for that because the horse or the dog doesn't care if I'm walking on two feet or rolling on two wheels. They just know I'm with them. Does the horse care if I pull on the reins or if I use my voice to tell him what to do? It makes no difference to him. People inherently, if you're comfortable in your own skin and the way you're doing things, everybody accepts you. There's nothing wrong with being a horseback rider who has their oxygen machine thrown in a backpack that they wear when they ride. I think you need to just say, "I'm going to do what works for me and give it a try anyway." I can't ride a horse anymore. My heart lungs don't work that well. But driving a carriage, all I have to do is steer and be a little braver at times.

I don't see myself as being any different than anybody else. I do realize and I accept the fact that I can't walk down a hall or through a store and keep up with anyone. I'm quite accustomed to telling everybody, "Oh, you guys go on ahead. I'll get there eventually. I'm just taking the slow route." I don't worry about it. I just cut myself slack and I don't really think about it. I thought that nobody really noticed until I didn't interview for something I was doing and they photographed my hands. I guess I hadn't realized how much my hand deformities look odd to other people.

But that wasn't really what bothered me. What bothered me was they took a video of me walking from behind and I thought I was walking really well. What I didn't realize was that I walked with sort of a lurch and a real hitch to my get along that's extremely obvious. There's no way anybody would look at me and think that that was a normal walk. I think people see a lot more of us than we think, and we're preventing ourselves from fully enjoying life because we think we're hiding things.

I do work for the Ostomy Association because I've had a colostomy now for 23 years. When I was competing in driving, I would wear skin tight white pants in public. It doesn't sound like something somebody with an ostomy would do. But I do. In talking it over with other ostomates, I'd go, "Nobody actually ever looked at your groins much in polite society. That's really an impolite thing to do." When you're wearing very tight pants and there's a bulge, people think it's something you stuffed in your pocket. Nobody stops and notices that there are no pockets in those pants. We overlook so much. If people will just take the attitude that I'm doing this, I'm enjoying it, the heck was how it looks, I may be different from other people, but I really don't care, I'm having a good time, I think it would free them to do a lot of activities that they've maybe avoided and held back.

My name is Dale Dedrick and I'm aware that I am rare.

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