Unplugged… With Mike Hyland
By Richard De Nagel
Hello everyone, and welcome back to another exciting edition of “Unplugged.” I hope everyone had a good holiday season and a happy new year. I am shocked another year has gone by. I thought I had gained some weight over the holidays, but I got all backed up, which is no fun. After all the laxatives kicked in I actually lost weight. I knew it was too good to be true and I had way too much gas anyway. So that was my welcome to 2008!!
I am, as usual, very excited to introduce our next guest. He talks about sex, strippers, and rock and roll; what more could you want! He hails from the state of Texas and has a great perspective on life. He is another one of those transplant people, and even went in for another round a few years later. He is quite a fighter. Beyond that, he is a great guy. I am happy to introduce Mike Hyland.
1. Name
Mike Hyland
2. Age
41
3. Where do you live? Does that have any affect on your health?
I live in Dallas, TX. I don’t notice any ill effects from living in a big city. The altitude is low and the weather is good enough I can work out year round outside.
4. When were you diagnosed with CF?
Shortly after birth, in 1966. I received two new lungs in 1997, and a new kidney in 2006.
5. Who is your doctor? Hospital? Do you like him/her?
For my lungs and CF I go to St. Paul/UTSW hospital in Dallas. I’ve seen Dr. Randall Rosenblatt for about 15 years now; he’s a great guy. There have been times when he’s come into my hospital room just to watch basketball with me.
6. How would you describe your health now?
Excellent. My FEVs are 100%. I ran a marathon a few years ago and haven’t reached that peak of fitness since; but I do something physical most days.
7. What type of Chest Physical Therapy do you do? Are you compliant with it?
I used to use the vest three times-a-day, rain or shine. Post transplant, I have not had to do mechanical therapy, but I do an inhaled antibiotic for ten minutes twice a day to prevent pneumonia.
8. What was your welcome to the world of CF moment? (When you began to realize what CF is?)
I had done breathing treatments, chest therapy and enzymes since I was a baby. I used to sleep in a mist tent, too! But when I went to college at age 18 was when my lungs really started to deteriorate. I had always been very active, but I started having problems walking across campus or up stairs.
9. What is the newest/favorite music in your iPod/CD player?
I’ve been listening to “the Police” a lot lately. We just saw them in concert. I play piano and keyboards in three bands, so I also listen to the songs I need to learn. My favorite CD is R.E.M.’s “Life’s Rich Pageant”. I like to dig around the half price CD store and look for ’80s college/alternative bands.
10. Are you working? How is that going?
I worked as an electrical engineer designing computer chips for about 12 years, but I stopped working five years ago. At the time I was having bad rejection problems, and spent 85 days in the hospital over that year. Trying to keep up with work was becoming a real problem. I’m a lot healthier now without it.
11. Do you believe in a Higher Power? Are you religious?
I am a Christian, and so believe Jesus was the Son of God. I really struggled with this at times, probably because my health was so bad. How could God allow such things as CF? But I realized that trying to make a decision about the truth (or not) of Christianity is impossible without studying the Bible. Sort of like taking a chemistry test without looking at the text book. So I started going to church and joined a Bible study even though I wasn’t sure about it. I also spent a little time learning about some of the other major religions. I’ve probably put more thought and study into this one question than any other.
12. What are your hobbies? Does CF interfere?
I play piano for two contemporary Christian bands. Our bass player is a respiratory therapist from the hospital; I recruited him while I was there. It is great fun, and I get to feel a part of our worship services. I also play in a cover band that plays coffee shops and parties. Occasionally I’ll get ill and have to skip a performance. When I get sick, it happens really quickly, like in just a few hours. Pre-transplant, with work and all the vest/breathing treatments every day, I didn’t have time for anything like this.
13. What is your relationship status? Happy about that? Does CF interfere?
I’ve been married for 17 years. Delonna and I met at Purdue University, when my health was already lousy. Somehow, she saw through that to see what a great person I am (Ha! Ha!). CF and transplant have been a large part of our lives. She supports us now with her job and insurance, and is always ready to make a trip to the hospital at the drop of a hat. She is an awesome person.
14. What is your most embarrassing CF moment?
I had a colonoscopy not long ago. When I was still loopy from sedation, I told the hospital staff that my wife was a stripper and that we moved to Dallas because the pay was better. My parents were there, too. I don’t remember this at all. The staff was quite surprised and they look at my wife a little differently now.
15. What gets you through the tough days?
I’ve got family and friends who really help me out. I know I can ask them to take care of me when I need it.
16. What do you hate most about CF?
Ugh – the gasping for air. I’ll never forget that. Now, post-transplant it is the occasional GI blockage. That can be immensely painful.
17. What is your favorite movie? TV show? Why?
My favorite movie is “The Blues Brothers”. It is a riot and I sing along (badly). I like comedies such as “The Office” and “My Name is Earl”.
18. Do you have kids? Want them?
No kids, just a chow dog, Kona. I do have two nephews nearby (ages six & 11); I teach piano lessons to them, so I see them at least weekly. When I get tired of them, I can send them home.
19. What do you look forward to?
Well, heaven is something that I don’t think any of us can really comprehend. So that is intriguing. I’m just not ready to go yet! I’ve had three CF/transplant friends die this summer. We all know that our time is limited. That doesn’t stop me from making long-term plans, but in the meantime, my wife and I love to eat at new restaurants, listen to live music and meet new people. There is room for enjoyment every day.
20. Do you think having CF is a good thing or a bad thing?
I would never wish this on someone, but when I look at all the experience I’ve had because of CF, it is hard to say I wish I’d never had it. Look at all the awesome people I wouldn’t have known. Without CF, by age 41 my health could have been just as bad from some other problem.
21. Tell us about your friends?
I hang around a lot of musicians. They all have girlfriends or else they’d be homeless. I have great friends going back to when I was young whom I still keep in touch with, and my brother is a great friend, too.
22. What is your favorite color?
Black. I’m going to paint the bedroom black next time my wife goes out of town.
My wife said, “No way”, to the black bedroom. So, favorite color, please put my answer as: Old Gold and Black (Go Boilermakers!)
23. Do you spend time with other people who have CF? If so, what do you do, and how important is this to you?
There are several of us CF patients post-transplant from St. Paul in Dallas that meet regularly. Usually we eat a lot and make each other laugh. It is awesome to be able to learn from each other since we have many experiences in common. I also speak to pre-transplant recipients at my hospital about my life post-transplant.
24. Do you spend time educating yourself about CF? How important is this to you? What effect does this have on your treatments? Rapport with your doctors? Self-Image?
I’ve been reading CF Roundtable since the beginning, and always found it very emotional to read. I’d never really spent any time with anyone with CF. Since then I’ve always tried to learn as much as I could about treatment possibilities, and when I became eligible for transplant, switched my focus to that. I’ve been very compliant since about age 22. From age 18-22, not so much. As for self-image, like many folks, I never talked much about CF when I was younger. But now, everyone knows that I’ve had a transplant. It is my job to show them that transplant works.
25. Are you a morning, afternoon, evening or night person?
Night. I’m the kind of guy who doesn’t want the day to end.
26) What did you think transplant would be like? Were you scared?
By 1997, my lungs were so bad; I was just excited about the possibilities post-transplant. I really wasn’t worried about it at all.
27. Was it as difficult or more difficult than you imagined?
I have an interesting perspective on this now, since I had a kidney transplant in 2006. When my lungs were transplanted in 1997, it was difficult, but I could immediately breathe so much better that I didn’t care what hurt or what I looked like or anything, I just felt great. When I had my kidney transplant, there was no immediate “life is so much better” phase. I just did not have to do dialysis anymore. So in that sense, recovery from the kidney transplant was actually more difficult.
28. What has changed in your life since your transplant?
My physical capabilities are far above where they were pre-transplant. When I started running, my lungs were great, but my legs were so weak from being sick for years. It took a long time to build up so that I could run a few miles. And since Rich wants to hear about my sex life (blame Lisa Steiding in the last “Unplugged” for that), let’s just say that I don’t have more sex (after all, I’ve been married 17 years now), it just is easier. Now I don’t see black spots and feel like I’m about to pass out afterwards. 
29. Did it change your outlook on life?
I’ve usually been a pretty optimistic guy, and that hasn’t changed. The post-transplant survival statistics don’t look all that great (50% live 5 years), but what were the odds of my living this long to begin with? Very small. I’ve always had many things that I wanted to accomplish, regardless of my health, and that is still true. I just have more time for them now – and (this is important!) I can’t lose sight of my goals! Just because I am healthy now, I can’t put off my goals for a later day like too many people do.
So that is Mike, who no longer sees black spots!! I couldn’t believe he ran a marathon, but he sent in a photo as proof. Mike is someone who is very easy to talk to and has a great attitude about life. Just to clarify, from this interview, it would seem that I am obsessed with sex. But he brought up the stripper topic. I will let you decide. I was merely bringing up sex after Lisa, from the last issue, pointed out her increased sex drive post-transplant. I was curious if others have had the same experience. If it was true I was going to chat with my doc about it. I never brought up strippers. In response to the question about his most embarrassing experience with CF, he raised the topic about his wife. (She is not a stripper.) So where’s Mike’s mind? It is no wonder she won’t let him paint the bedroom his favorite color. Back to me, I am just happy when I don’t pass gas during sex. That’s a good way to ruin the mood.
One of the most challenging aspects of CF is that I am alone with it most of the time. I go through days and days without seeing or talking to someone who understands what I go through. When I do get the chance to connect with someone with CF experience, it lifts my spirit in a way nothing else can. Case in point: my conversation with Mike turned me around. I had been in one of those funks that I’ve described before – being sick, not wanting to do my treatments, tired of all the crap with CF – and after our conversation I felt better. I struggle with having CF all the time and over the years I have looked for ways to deal with it. One of the best ways for me has been to connect with someone else who has CF. Thanks, Mike. You’re an amazing guy, and very easy to talk to.
Also, another way to remind myself that I’m not alone is through reading. I have had a subscription to CF Roundtable since 1993, or so, and I read each issue cover to cover. From time to time, a good book comes along, like “The Power of Two: A Twin Triumph Over Cystic Fibrosis,” written by two sisters who have CF. It is an amazing read and the authors, whom I have met, are great. From here on out they will be known as the Famous Ana Stenzel and Isa Stenzel Byrnes. The point is, again, I can identify with them and relate to their experience, and you might, as well. When I find something that helps break this isolation, I feel better. I also end up taking better care of myself and using my Vest more; all the things that make me and my life better. And I remember I am not alone.
Rich has CF and is a former Director of USACFA. His email is: richdenagel@gmail.com
