I'm Aware That I'm Rare: Bill O'Donnell

Boston native, Bill O’Donnell discusses the 15+ year journey his daughter Shannon has had with pulmonary hypertension. Bill shares his thoughts on the role of being a pedatric caregiver and how battling PH is like running a marathon.

Transcript:

I’m Bill O’Donnell and I’m from Medford, Massachusetts.

I have a daughter that has Idiopathic pulmonary hypertension (PH). She was diagnosed at age 6. She was having fainting spells at the time for about a year and we had been to several doctors and nobody really came up with a good diagnosis. Just prior to being diagnosed with PH, we were told that it’s all in her head. They actually had excluded asthma. They said, “No, it’s just in her head,” and she had another fainting spell and finally we went to the ER and something showed up on the EKG. They sent us to Children’s Hospital in Boston. That’s where they did an echo which took an extremely long time and they discovered she had pulmonary hypertension.

The doctor had to tell my wife and I about 3 times that she had PH and how severe it was because we just weren’t comprehending it. I mean, 2 weeks prior, they had said, “Ah, there’s nothing wrong with her. We don’t need to get her into Children’s immediately.” We had waited for the appointment and that would be fine. Then, all of a sudden, we go into the doctor’s office and we’re told, “Yeah, she can die from this.” We were actually told back then, that was 2001 that she could actually be dead within a year without any treatment.

I found that we started to set goals for ourselves. Shannon was diagnosed about 5 days before kindergarten graduation. We insisted on taking her home so she could graduate kindergarten. Being very naïve to the disease and it’s hard to believe that in 2001, the internet wasn’t what it is today. You couldn’t really find information. The doctor was like, “Yeah, we have to give her right heart catheterization,” and I’m like, “Okay, so, we’ll take her home for graduation.” The doctor looked at me with a smile on her face and was laughing, “No, you don’t understand.” I said, “Well, we need a minute.” My wife and I discussed it and we decided that we didn’t bring Shannon to a hospital to die and that wasn’t going to be the last memory that she went to the hospital. We said, “She’s going home to graduate kindergarten and we’ll be back.” Surprisingly, the doctors didn’t try to stop us. They understood where we were coming from. That was the first milestone she was going to get to and that was 5 days out.

Then, it was kindergarten then first grade, which we needed to get her into first grade. That was the next thing. You set these little goals further and further out and after she attended first grade, she only attended about an hour a day but that was okay. She attended first grade. Then, we’re Catholics so it was okay, she’s going to make her first communion. That was 2 years out from graduation and then it was continuing, okay, she needs to get into middle school and then graduate high school.

Now, she’s in college. Instead of saying, “You know, I’m looking forward to her being married and off and working,” you just set these short term goals that you look forward to and those events even become bigger in your life than they would for a child that doesn’t have a serious illness.

Shannon just recently celebrated her 15th anniversary of being diagnosed with pulmonary hypertension. When she was first diagnosed, somebody gave me a card that compared having an illness like this to running a marathon. For her 15th anniversary, I wrote this little thing about how having PH is like running a marathon but in some ways, it’s not like running a marathon. One of the ways it’s not is that with PH, you’re stuck in the middle of the pack and you have to go out and run. You don’t have a choice. Otherwise, it’s over for you. Just like if you were starting a marathon in the middle of the pack, the gun goes off, if you’re talking, you’re going to get trampled if you don’t go. I talked about that. I talked about in the beginning how there’s lots of resources for you but sometimes, people get accustomed. Even yourself gets accustomed to PH. The person that’s volunteer, raising money for a charity is at the very end of the race and if you ever been to a marathon and as a spectator, you’ll notice that the crowd starts to thin as time goes on. It’s like there’s fewer and fewer of those opportunities it seems that comes out. Certainly, there are key people, usually family, close friends that are there the whole time with you. Those are just a couple of things that I refer to about how it is like running a marathon and how it’s not like running a marathon.

It was important to us to really promote awareness of the illness. I think in terms of technology, the internet and different online support groups have really made the illness more bearable because you can find more information out. You can actually reach out to other people who are dealing with the same things that you may be going through and get some nonmedical advice. Medical people are great but they don’t live with the illness so sometimes you just want to hear that family piece of advice instead of just constantly a medical perspective.

We don’t meet a lot of people with this illness. There was a little girl that we met just after Shannon was diagnosed who had a double lung transplant and that little girl gave us so much hope because her father had brought her up to the ICU to actually say hi to some of the nurses that she had had. This little girl was running around the ICU and jumping up and down and I think Shannon was maybe diagnosed about 2 weeks and it just gave us hope.

In addition to promoting awareness of the illness, we always felt it was important to give other people hope to this illness. Yes, there’s no cure but with treatment, there’s opportunities that anyone, a child or anyone else can live many happy years and do a lot with their lives. For example, Shannon is actually a second degree black belt in karate. The program was modified a little bit for her but she earned those black belts. They weren’t given to her and she was able to do it. Those things, I think, give other patients hope as to, yes, I can do things as well.

I’m Bill O’Donnell and I’m aware that I am rare.

Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware