The challenges of living with an Alpha
It’s not always easy, but caregivers enrich an Alpha’s life.
Both Alphas and those who love them tend to lead stressful lives. Dealing with one health problem after another is hard to handle – especially since it usually takes years to get diagnosed correctly.
Most Alphas have a major asset in all this. They don’t have to do it alone.
That helps a lot. It also means at least two people share in learning about Alpha-1 and dealing with its challenges. This is about three couples, and how they have dealt with Alpha-1 and its challenges.
Pierre and Alex Villeneuve
PIERRE VILLENEUVE was doing exactly the wrong thing.
“I used to smoke two packs of cigarettes a day and I coughed a lot,” he says.
He remembers the day his breath completely failed him: “During a Fourth of July party at our home (in Ft. Lauderdale, FL), I inhaled smoke from the barbeque and wasn’t able to breathe,” he says.
Villeneuve finally saw a doctor who said he was in the beginning stages of emphysema. That was six years ago; he was only 39. His primary doctor sent him to a pulmonary specialist, who tested him for Alpha-1. He now sees Franck Rahaghi, MD, in Weston, FL.
FOR STEVE WHITLOCK, the story is nearly the opposite. Steve had always been relatively healthy, but something odd was happening as he was in his 40s. “I had shortness of breath and every year I lost a little bit of ground. I thought I had to get in shape, but I was not overweight or a smoker.”
Looking for help for his deteriorating health, he saw about five doctors over a three-year period before he got diagnosed with Alpha-1.
Steve and Memory Whitlock
“What was really aggravating was that, at about the third doctor, my wife’s aunt had read an article about Alpha-1. We showed the article to a doctor – who said I must not have it because it is so rare. Even though he was already testing my blood, they just laughed at us.”
Fortunately, Steve and his wife Memory never gave up. “We were going to just keep digging until we found out what was wrong with him,” Memory says.
The couple traveled far from their home in Monroe, LA, searching for a diagnosis. They finally found out Steve had Alpha-1 about three years ago when they sought treatment in Birmingham, AL. Steve was 52. He is now seeing James Stocks, MD, a longtime Alpha-1 specialist, in Tyler, TX
MIKE OSBORNE is still struggling with finding the right diagnosis for his health issues. He was diagnosed with Alpha-1 just before he turned 40. Still, he continues to have ongoing bouts of illness and infection that haven’t been well controlled.
“Mike’s been really, really sick the last few years. He’s constantly on medicine and taking shots,” says his wife, Stephanie. “He’s only 42. He shouldn’t be having this many problems. It would be more reasonable for a 60 year old.”
Mike and Stephanie Osborne
The Osbornes are looking for answers, but feel that all Mike has been getting is medication. “The four or five other doctors we were seeing didn’t consider doing tests to figure what might be ailing Mike,” Stephanie says.
They are now seeing Mark Brantly, MD, who runs the Alpha-1 program at the University of Florida in Gainesville (two hours away from the Osborne’s’ home in Orlando, FL).
“Now it’s a waiting game,” Stephanie says. “Some tests are coming back positive now, so hopefully these problems will get taken care of.”
Alex and Pierre
“I stress about having the right information to make the best of the situation… even though all Alphas are Alphas, each one is a bit different and I worry whether we have all the information we need that applies to Pierre,” says Alex, who gives Pierre weekly his augmentation infusions.
The Villeneuves are grateful to be taking action.
“Knowing what the issue is and knowing that we are doing everything possible to slow the progression is comforting. Without the infusions my condition might be much worse already,” says Pierre.
Alex and Pierre have attended Alpha-1 support groups, conferences and education days, and do what they can to raise awareness about Alpha-1.
“All of us (Alex, Pierre and Pierre’s parents) gave to the blood bank for Alpha research (the Alpha-1 Foundation DNA and Tissue Bank at the University of Florida) and we encouraged my three sisters to give to the blood bank,” Pierre says.
Alex has discovered one of the difficult truths about spreading the word: “I’m surprised at people. Sometimes when I share Alpha-1 information they’re eager to listen, but when I try to encourage them to get tested, many turn away. They like to hear about it, but don’t want to be involved.”
Mike and Stephanie
Stephanie takes responsibility for keeping tabs on the technical side of Mike’s health issues, which can be overwhelming. “There are times when I just want my head to explode,” she says. “Mike just does what he’s told, I do all the homework. I do all the questioning; Mike just can’t find the words.”
She pressures him to take care of his health. “When he quit smoking, he more or less did it for me, not for himself. I put the fear of God in him.”
She acknowledges that Mike has major struggles of his own, dealing with frequent infections while working fulltime as a long-haul truck driver.
Steve and Memory
Memory encourages Steve to do all he can to stay healthy, even if it’s difficult – like pulmonary rehabilitation. “He would have given up a long time ago, but I just kept fighting,” she says.
Steve agrees with her on that. “I know I’m not the ideal patient, but she has got to love me because not a lot of women would have done what she’s done.”
All these couples agree that one of the most difficult things is accepting that they can’t do what they used to do.
Steve says, “The hardest thing is realizing that life is not like it used to be, you can’t be around things that you used to, you just can’t physically do what you used to do.”
Memory recalls a particularly difficult occasion: “We had our first grandchild in August. A few days before Christmas (our grandchild) went to the doctor with a respiratory problem. So our family couldn’t come on Christmas, because it was highly contagious and Steve couldn’t be around the baby.”
The Whitlocks still feel they have a lot to be grateful for.
“Every day I wake up giving praise that God has given us another day,” Memory says. “Realizing that every day is so precious, you just want to live life to its fullest, to live it like it’s your last day”.
They also try to raise awareness and help other Alphas. “We went to our first education day in Jackson, MS in April of last year and they mentioned that there was a great need for support group leaders in Louisiana. So I volunteered us,” Memory says. “Somebody’s got to take a stand and just do it. We want to be a voice for all Alphas.”
