Frank Diaz’s PAD Odyssey, Part 2
In Part One of the story, Frank and Maria Diaz of Chicago had gotten married and were navigating the early days of Frank’s PAD diagnosis, which was complicated by 30 years of diabetes. They had spent the first 18 months of their marriage in and out of the hospital dealing with poor blood flow and lesions that would not heal on his right leg. There were numerous surgeries and several stents and multiple bypasses on his right leg. Other complications involved compartment syndrome and fasciotomy as well as a skin graft to cover those wounds. Each procedure over those 18 months produced short-lived relief.
“In summer 2016, the leg was working well but it was intermittent,” Frank said. “Blood flow just wasn’t happening all the way to my foot. In November, on the second anniversary of my first hospital stay, I noticed the foot was getting darker and heavier, which meant nothing was working, and the only option would be to amputate. In January 2017, I went to the hospital to leave my right leg, as I like to say, below the knee.”
Maria says she was surprised at how quickly Frank’s condition progressed to amputation. “The doctors had mentioned that amputation was a possibility in the future,” she said. “But Frank had done so well, danced at our wedding and everything, I had pushed it from my mind. After the honeymoon cruise, I could see that the leg was getting darker. There was some panic. So, we sat down and talked about the changes that were coming and how those would affect our lives, and we got to acceptance. First, there’s disbelief, then there’s acceptance and then you think about what the future is going to be like. I think we’ve dealt with the situation and moved on with our lives.”
That said, there was a period of adjustment. “I think the first six months after the amputation were the toughest because he didn’t have the prosthetic, and I had to do many things he did before, like driving,” Maria said.
Knowing that there was a prosthetic coming kept them from focusing on the difficulties at the beginning. “We didn’t get stuck in ‘Oh, this is really hard. How am I going to deal with this?’” Maria said. “Sure, there were hard moments, but I always knew ‘I can overcome this.’ Because of my faith, I believe that eventually, things will get better and eventually, if God is sovereign in your life, you know that whatever comes your way, you’re going to be able to handle.”
Frank has learned to use a prosthetic and feels good about his progress with it. He’s walking more and wants to start running. His family, including his parents and six grandchildren, have been a great support network. He advises that this is not something you want to do alone. Both he and Maria are clear that their faith was a source of support. About 18 months after surgery, he started a support group at the clinic where he got his prosthetic. They have met once so far.
Another source of support in his recovery is music. Frank has played guitar since he was a teenager, but for most of this century he has had his own five-piece band, Frankie’s People. “We came from Puerto Rico, and I grew up listening to that music and I really love to perform it, especially for our Spanish-speaking audiences,” he said. “It keeps me motivated and gives me a reason to get up, as they say.”
He’s active on Facebook. “I try to get the message out and let people know that PAD gets overlooked,” Frank said. “From what I can see, anecdotally on Facebook, quite a few people say their own doctors don’t know much about it. It really fascinates me to understand what medical care is like in Great Britain or Australia or other places around the globe through the eyes of patients who get on Facebook or Instagram and do some commentary on the treatment they are getting. It reminds me again, with all its flaws, we’ve got it pretty good here in terms of medical attention. Again, I’ve been very fortunate that my team at Saint Joseph has done an excellent job.”
Maria has thought a lot about caregiving, especially after reading the experience of other patients and their caregivers on Facebook. “Some of those posts sound dreadful because they are so stuck,” she said. “There were some tough things at the beginning, and we had to ask ourselves ‘Are you going to stay stuck here or will you move forward?’ It was hard to be tough on Frank, but the therapists and doctors warned me not to baby him.
“What I would say to others is ‘It will get better. You will make progress.’ I think this is one of the most valuable parts of the support group — it keeps people focused forward.”
Making music has been an important part of Frank's recovery.
Frank’s advice: “In order to maintain a positive outlook, you should learn as much as possible about your circulation, and what it takes for you to keep a good blood flow. For some people, it’s medication. For others, it’s physical activity. For me it’s a combination of good medicine and a lot of walking, a lot of movement. If I sit for any prolonged period, the right leg starts aching. So, I make sure I get up and do laps around the house or down the hallway. So, listen to your body and figure out what’s best for you. I often hear high blood pressure referred to as the ‘silent killer,’ but it seems to me that PAD can also be a ‘silent killer’ because your artery starts getting blocked and you don’t even notice it. I never noticed it before December 2014.”
Both Frank and Maria were adamant about finding out about PAD. “I’m very grateful for Maria’s involvement and input,” Frank said. “She likes to research and investigate. She stays informed and informs me.”
“I knew about diabetes because my dad has it, but until this happened with Frank, I had no idea how progressive it is, how it affects the body long term. That was all an education. Thank goodness for cellphones, every time I heard a new term, I was looking it up. While he was in the hospital, he wasn’t aware of a lot of things, so I could inform him. The doctors throw out big words and facts. I think education is really important.
“I’m a firm believer in having faith and informing yourself. We have a lot healthier lifestyle, eating healthy and exercising more, but I’ve talked to a lot of people who did not take PAD as a wake-up call and instead got depressed. They didn’t change anything, and their situation got worse, they had the other leg amputated or another condition developed. For a person who has diabetes or peripheral arterial disease, in order to continue a good quality of life, you have to take it on. It doesn’t get better by itself.”