I’ve lived with lung disease his whole life. But I haven’t let my COPD or idiopathic pulmonary hemosiderosis limit me.
When were you first diagnosed with COPD?
I was diagnosed with Idiopathic Pulmonary Hemosiderosis, a very rare lung disease, when I was 4 years old. I’ve had lung problems ever since. I was officially diagnosed with COPD in 2010. A year later, I quit smoking! I continued to have difficulty breathing and coughing, and in 2016 I had a pretty bad exacerbation. I went to go see my pulmonologist right away, and after many tests, I was put on the lung transplant list.
How has this impacted you?
My lung function is at 19%, and I’ve had to leave my job in order to maintain the lung function I have. I also find I can’t do the things I used to do. I find it difficult to go down to river to hunt and fish – I’m always conscious of where I am and what will happen if I have an exacerbation.
How are you managing your COPD?
I stay on top of my medications, use oxygen therapy at night and keep vigilant of any sign of an exacerbation. I also exercise a lot! I have a trainer and try to work out at least twice a week.
I’m on the lung transplant waiting list. It’s been difficult to wait, but I try to remain optimistic. I recently found out I have antigens which limit my opportunities to receive a match. However, I maintain hope – I feel very fortunate and blessed to even be on the lung transplant list.
I've also been attending a Vancouver Island Health Authority program called Take Heart and Breathe Well led by Bev Mitchell, an exercise physiologist. It's a community based supervised exercise program for people with cardiac, pulmonary, or other chronic illnesses. They monitor my blood pressure and oxygen levels, and Bev and the group have been integral to helping me get strong enough for a lung transplant.
You seem very well connected. What’s your support system like?
I have a very strong support system. I’ve met a lot of good friends who also have COPD or are waiting for a lung transplant. Throughout this past year, I’ve gotten involved with the Nanaimo Better Breathers group. It’s a great group of people, and it’s nice to be around other people that are also going through similar things. When I first walked into the meeting and saw other people using oxygen, I instantly felt comfortable.
However, I find that I can’t make it to all the meetings. To supplement these in-person meetings, I joined the online Better Breathers: Facing COPD group. It’s great because I can log on to it every day. I know if I ask a question or need support, I’ll usually get a response within a couple hours.
Any advice to other people living with COPD?
You need to be proactive. Do your best to take your medication, exercise, and maintain a proper diet. A lot of people with COPD are underweight, so I’ve found meeting with a dietician at the transplant clinic to be very helpful. I’d also recommend that you stay away from perfumes and colognes – basically the only thing that should be put in your lungs is oxygen!