PHighter Friday: Carolyn

Dorset Tower

My PH symptoms began after the birth of my second child. My son was born February of 1996 my symptoms began in October of 1996 and on April 15th 1997 I was diagnosed with stage 4 PH.

Camel back in Morocco

My PH Journey is not like most, you know the usual, 6 months to 2 years. I was very blessed in receiving the news that I may not survive the night. With given only a few hours to live my family was sent for to say their good byes.

After surviving the night to everyone's surprise I stayed in ICU for a few days and then sent home to “die” in comfort and to make proper arrangements for my demise. After surviving a month I was given 6 months, that is when we decided to take our last family vacation and took our 4 year old daughter and 1 year old son to Disney World. After surviving 6 months I was given a year. Originally I was put on Norsvac until a heart and double lung transplant was necessary. To this day I am still at the same dosage of Norsvac. To my understanding the DR’s do not even suggest Norsvac to new patients as there are so many other meds out there that have show a quicker response to PH patients.

Great Wall of China

When I was 6 months in with PH I am thinking I may survive a little longer. I called the Lung Association to find out where the support group meetings are held. The Lung Association (at that time) had never heard of PH and was told to call The Heart and Stroke Association. They too had never heard of PH. Well then, I will start the first of its kind in Canada. So it began. We met at TGH once a month with a social worker present.

My sister had made pamphlets with pictures of the people that had attended group. Unfortunately, due to the privacy act no one new heard about our group. I just thought that nobody cared. I did get involved with the association in the US (PHA) and attended several of the conferences with my family in tow.  

I had PartyLite, Pampered Chef, Fifth Avenue Jewelry parties, Yuk Yuk fundraiser’s etc etc. With all proceeds going to then, Pulmonary Hypertension Society of Ontario, to support Dr Duncan Stewart efforts for a cure. That was way back in the 90’s.

Snorkeling in Bahamas

In the mean time my Pulmonary pressures are coming down from the original 104 at diagnoses. After a year I was given 2 years,you guessed it then 5 years. Now they do not give me a time of survival as it has been over 17 years. I have always been a traveller, but now I have a bee in my bonnet and want to enjoy as much of the world as I can. I have visited 52 countries to date. This past summer I spent 5 weeks overseas visiting my daughter in Swansea Wales. While there we travelled to Morocco, covered north to south,east to west of Wales. We journeyed to Puglia Italy and I drove through the south of England and Northern Ireland.

Carrick -a-Rede Rope Bridge Northern Ireland

Some of the many things I have accomplished since I have had PH.

While in Oahu Hawaii, I climbed the 175 steps to the top of Diamond Head.

While in Beijing China I climbed the Great Wall.

While in Athens Greece I climbed the Acropolis.

While in Pisa Italy I climbed the 296 steps to the top of the Leaning tower of Pisa.

While in Dorset I climbed the 128 steps up the Dorset Tower.

It is not easy but I am determined to do it.

Tubing in Jamaica

I love to Zip-Line and Snorkel. I walk 5km a day with my dog, Sheldon. In February I will be Para-sailing in the Caribbean. Some much to look forward too.  

I keep myself busy daily. I have not worked since my daughter was born, 21 ago. When my kids were in grade school I ran the milkshake and pizza days the school choir and the reading program. I was a Brownie, Girl Guide and Pathfinder leader for seven years. I run a ladies book group every Tuesday morning at my home. Every Thursday I go into Toronto to visit friends. I organize a yearly ladies cruise getaway in February. I host a monthly Quiz Night in Brooklin.