One of the blessings associated with having Cystic Fibrosis is having a full team of medical professionals that monitor me on a regular basis. I have 2 CF doctors, one CF Nurse, a dietitian, a physio therapist and a social worker and a pharmacist, all in my reach whenever I may need them.
If you have read my blogs, you know that living with Cystic Fibrosis, things are always changing. But over the years the CF Team has been something that has always remained constant, and I have never had to worry about them going anywhere. Since day one, my family has had this team on their side and they have been there through the good times and the bad.
As a child, this team could sometimes seem intimidating and at times annoying. Going through the teenage years, the team could not tell me what to do!! I knew what was best for me and no one could tell me any different. Children and adults have two different teams. One team of experts caring for children under 18, then another to care for adults 18 and above. As I look back on life, I cannot understate how important the ‘team’ make-up was important to my overall health. Though the rolls change from time to time, the team itself has been my ONLY constant since birth. However, never have I felt so grateful and never have I felt so reliant on them as I do now. And it helps that it is my belief we have the best team in pace now that we have ever had.
Dr. Jamie Farrell and Dr. Joe Lockyear
These guys are my two CF ‘leaders’. Both studied and Newfoundland’s very own Memorial University. They have a very fatherly way about them and I’m surprised at that fact that, though I may be gay, I usually tend to like female caregivers better. But these two guys are awesome, very knowledgeable in their field and have nothing but all of our best interests at heart. You can always count on them and they are always a phone call away if anything comes up. And it doesn’t hurt that either of them aren’t bad on the eyes. They have been so supportive and have been a great encouragement to me over the past year with everything I have been through.
Lisa (My dietitian)
Lisa is the first dietician that I have had that actually listens to me. She hears what I like and then is able to work with me to create a plan that fits my needs and her need to make sure I am receiving the best nutrition from my food intake. Not only has Lisa helped me reach my maximum weight, she has proven to be a great friend. Lisa’s job is to make sure and help me maintain a healthy BMI. Contrary to what most people need, CF patients need a high fat, high protein, HIGH EVERYTHING diet. She helps me balance that out as best as I can with healthy choices that make my overall health better. Also at clinic, if there is anything I really need to talk about, it usually ends up in Lisa laps. She is a beautiful woman, and I look forward to seeing her for the next 20 + years.
Stephanie (My physiotherapist)
Stephanie is the one that has been around the longest. She is my drill sergeant. She’s the one who helps me keep my lungs working at their best, always giving me the latest tips about how to manage my health and stay fit. Stephanie is such a light to my life. Whenever I am first admitted to hospital, she’s more of a shrink than a physiotherapist. She knows my body is tired so she’s usually do some percussions on my back and chat with me about life and make sure I haven’t given up. One of the great things I love about her is that while she knows it’s important to stay healthy now, she is always talking about transplant and how I need to prep my body for when that time comes. And she doesn’t baby you, if you aren’t taking care of yourself the way you should be, as she would say; “I still get my pay check”. However, if you have an earnest, sincere desire to live and be healthy, I’m 100% that Steph will do anything in her power to make sure that it happens. She has become a great friend and someone who I can be completely honest with. I love our little chats while she’s beating my back about who’s the top and who’s the bottom in my relationships and all the questions she has about my new lifestyle. Never judging, always supportive of whatever choices I make in my life. But it’s those little moments that help me more than any amount of physio she could ever offer. Those moments where she helps me laugh when I want to cry.
Chyrl (My CF Social Worker)
I haven’t been real close with Chyrl over the years, mostly because of my stubbornness to admit I need help with something. It’s only recently since I came out that I have spoken with Chyrl and she has helped me in many different areas of my life. I know that she is always there whenever I need her.
Jon (My pharmacist)
Jon is the newest member of our team and a great asset I might add. He has been a real help when determining when I should take my medications, helps me find alternatives when I am experiencing any side effect to something and is able to brew a great cocktail of medications to help me feel the best. Lately he has been a greater help with this new bug that I have been growing and has aided in finding the perfect drugs to treat it.
And then there’s….
Karen (CF Nurse Practitioner/ Mother/ Friend)
Karen joined us when Susan left about 2-3 years ago. I was very close to Susan, so I was reluctant when I heard Karen was coming to join us. I really didn’t want to lose Susan and I was worried that Karen would not fill the role that I had become so dependent on as great as Susan had. However, Karen and I have become really close. She is the brains of the whole CF Clinic operation. She’s the one I call when something is wrong and then she gets off the phone and does whatever she needs to do and call whoever she needs to call to ensure that what I have asked for gets done. She deals with all the paperwork and lab tests and sputum samples and appointment times. She is so motherly in her roll and is always there to lend a hand and advice when solicited. She has become closer to me than any of my past CF nurses and is a great asset to the overall health of ALL the CF patients in this province. Karen cares for both the kids and the adults, so even though she is really busy, she always makes time for you. If you need anything at all, Karen will try her best to help. Karen has gone above and beyond her expected duties in her role as the Nurse Co-ordinate with the team as she has aided in helping me love myself for who I am and to not feel guilty about receiving new lungs and a new life. Karen if you are reading this, I hope you know just how much I love you and how much you mean to the CF community! Without your love and support I’m not sure where any of us would be.
So as you can see, though there are many different roles in the CF Clinic, without 1 person it would not be complete. They each have a unique role in maintaining quality health to CF people all across Newfoundland. And this clinic ‘make-up’ is imitated all across the country so that everyone benefits from such a loving, caring and supportive group of great people!
