Information zu meiner Person:
Robin Toyne
Co-owner of Web Site phconnection
Canada
E-Mail: webmaster@phconnection.com
Internet: www.phconnection.com/
Diagnosed with Primary Pulmonary Hypertension on September 11, 2001
When I sat down to write my story I realized there is no easy place for me to begin. I mean, what do I say, “I was born…wait it gets worse!” Or do I bore you with the details of medical doctors, testing, etc, etc that we’ve all been through. Then it occurred to me that MY STORY is here and now. So why not begin with today.
I’m 32 years old and the mother of 2 girls (Briena {4} and Miranda {2}). My husband John and I have been married for over 11 years. I’m the youngest of 10 children, none of whom have PH… except ME. And as a side note, I also have Multiple Sclerosis, which I was diagnosed with during my second pregnancy. Like I explained to my siblings “I’m the baby…I get everything!”
PH has been an adventure…..not one I recommend, but an adventure none the less. I was “officially” diagnosed during the terrorist attacks of September 11. The doctor came into the room gave me a brief examination and explained to my husband and I that I have Primary Pulmonary Hypertension and there is nothing he could do. But he had read of a doctor in Toronto who deals with it. He then excused himself from the room and returned minutes later to tell us that 2 planes had just crashed into the World Trade Centre.
After he and my husband had a detailed discussion of the history of terrorism (I sat half naked on an examination table absorbing all of this) he sent me home and said he’d set me up an appointment with Dr. John Granton.
By mid-November I was making the four hour trip to Toronto, Ontario from our home town of Leamington, Ontario (the Tomato Capital of Canada) to meet with Dr. Granton and his team (Mary McCarthy and Joanna). It has been a love/hate relationship ever since. I love them dearly…they are the MOST dedicated trio I’ve ever met in my life. I just hate why I have to see them.
Immediately they got the last of the testing out of the way: CT scan, Heart Catheterization, and the 6-minute walk. To set the tone for our relationship, my husband asked the million dollar question of these dedicated professionals… these experts in their field…. The one thing everyone in this situation needs to know!!! “How long does the 6 minute walk take??” Needless to say they were gracious enough to give him the answer “Oh, about 6 minutes”… without laughing too hard. Although he has yet to live it down.
I began the road to treatment as the last Canadian registered on the Bosentan Trial (a.k.a. Tracleer). I had some promising results in the first few months, but by May 2002 things had turned around. It was decided that I would go on Flolan…that is, decided by my husband and Dr. Granton. I had reservations. I was picturing life with a tube running from my chest and my 2 year old with scissors. After talking with a couple of women already on Flolan I decided that I would go on it…and banish all scissors from my home.
I was admitted to the hospital in late June, for a four day stay, to have the hickman line put in and to begin the Flolan. Within 48 hours I was actually feeling “better” and I started to have jaw pain, although I wasn’t convinced it was real until I tried to down a glass of orange juice. It was after I did this my room mate (who had been on Flolan for about a month or so) informed me citrus juices are the worst for triggering the jaw pain…and I had to agree almost in tears. Needless to say orange juice has been crossed off my grocery list.
The stay was for the most part uneventful. Although, my second night there, a nurse came into my room in the wee-hours of the morning to change my ice packs. Only to do this she decided to turn on the bright overhead light (that was pointed directly into my face). I shot up like a rocket and she quickly tried to calm me…my only thought at that moment was “I’m in here with a terminal illness, sound asleep…..the last thing I want to see is a bright light in front of me”. But I managed to stay away from the light and headed home on the fourth day.
Flolan has been everything we’d hoped it would be. The side effects have been very tolerable compared to the improvement it has made in my life. I certainly have no regrets using this treatment. The fact that I have an extremely competent medical team following my every progress helps as well.
Don’t get me wrong, Flolan is not a walk in the park. You have to be diligent with mixing and keeping a sterile environment. My husband, John, has been a God-sent through it all, and surprisingly, my children have adapted well to life with Flolan. PH is a family disease. No matter how hard we try to face it alone our family and friends become inflicted with “life with PH”.
One of the many compliments my husband frequently gives me is how “brave” I am in the face of this disease. The truth of the matter is he is my rock. I see him help out around the house, help with the kids, take ownership in this disease and then go to work and put in 12 hours. He never complains, or waivers in his dedication to me and our family. His latest project is taking on the PH Connection Website. This is personal with him, he wants to help get information out there, and like many of us, wants to feel like he is doing “something” to make a difference in this disease. My bravery in part comes from his dedication.
The other contributing factor to my bravery is the people who have stepped into our lives solely driven by their heart. People like Patricia Agnew who has dedicated herself to helping PH Patients and Families feel empowered. People like a dear friend of ours, Joseph Elias, who steps up to the plate nearly everyday and helps us out by picking up where time lapses for John. These people do not face this disease because it affects their spouse or one of their children, or because life has dealt them this hand….they choose to be in our lives and face this disease head on. I greatly admire their selflessness…and as it was once said to me “it is a shame that I would be so unmoved by this disease when those around me are fighting so hard for my life”. It is the people in this world like them that inspire my bravery to face everyday as if there WILL be a tomorrow.
Recently I received an email from one of my sisters that was titled “The 13 Rules for Life”. It was a thought provoking humourous note… my favorite of the 13 Rules was “If you wake up breathing be thankful, you’ve been given another chance at life”. Although this is a rule we can all live by, to those of us with PH, or our families that care for us, there has never been a more accurate summation.
As you can see by MY STORY, I have a dry sense of humour about life, and the journey with PH is no different. I am many things in this life: a mother, daughter, sister, the luckiest wife in this world… but I am NOT this disease. I believe they will find a cure in the near future, so for now I will continue living my life to the fullest….with the addition of one little line.
Copyright: Robin Toyne – Co-owner of Web Site phconnection
