PHighter Friday: Karen Stone

I feel my PH journey started with my struggle to get diagnosed. I had been steadily getting more breathless and tired and having blackouts and fits, I was treated for inner ear problems, told it could be my weight or stress (becaused I had lost my mum and had to give up work as a secretary due to Repetitive Strain Injury) and although a chest x-ray showed my heart wasn't pumping right I was told they needed to get my fits sorted out first.  Even the Neurologist said all the tests ruled out Epilepsy but he wasn't convinced!

I eventually saw a locum GP and she said I had a heart murmur (I had been born with one but the usual GPs said there was no trace of it) and referred me to a cardiologist.  He diagnosed an enlarged heart, gave me Beta Blockers which caused more blackouts and I started to go blue. I ended up in my local hospital where Drs noticed I had a problem with the right side of my heart and gave me Verapamil.

I had an Angiogram at Harefield Hospital and on the 14th Decemeber 1998, the same cardiologist that gave me the Beta Blockers told me "it was a bit of a bummer but I had this condition (IPAH), we could try the old rat poison but if he was a betting man he wouldn't lay money on it working"!  Thankfully he had a lovely registrar who arranged for a colleague who actually knew about PH to talk to me & my husband and gave me hope again.  They told me I could try Diltiazem and Warfarin but it may not work, however I had noticed a slight difference with the Verapamil so I was positive this was going to help.  As you can imagine it was a very emotional time and I tried to make it a Christmas that my children would remember, thinking it could be my last one. 

By April 1999 I was on the transplant list for a heart and lungs, however because the medication seemed to be helping I was adamant I wanted to put that off as long as possible and even refused it when I got a call because I was seeing Professor Higgenbottom in Leeds the following day to see if I could have Prostacyclin instead.  He didn't think I was sick enough for either the drug or a transplant which reassured me so I pushed my illness to the back of my mind and tried to get on with life.

In 2001 I was asked to take part in the Sildendifil trial which thankfully worked and I have taken it ever since.  I am always willing to take part in studies or trials and although medication doesn't always work that's the only way that treatment can move forward and feel that even if it doesn't help me it may help someone else.  Eventually Harefield moved me to the wait and see list for a transplant and I have never looked back.

I tried to fill some of the boredom by going to art classes but still felt exhausted and kept thinking perhaps it was because I had no purpose in life. My daughter was 11 and my son 19 by this time so in 2003 I decided to go back to education, still with the hope that a cure could be found and that I could eventually go back to work.  I completed an access course which enabled me to then do a degree. I graduated with a BA Hons in Sociology and History in 2007 and although I haven't used it for employment yet I felt it was a huge accomplishment to complete it with PH.

It has been an emotional journey going from thinking that I would never see my children develop into adults to eventually becoming a grandmother to 3 gorgeous grandchildren.  I now fill my time with helping to amuse them during the holidays, various arts and crafts and have even joined the Women's Institute.  Although I don't relish getting old, it is great to think I will be celebrating my 50th birthday next year when after diagnosis I didn't think I would reach my 33rd.

I continue to remain positive that the cure will be developed to help myself and fellow PH patients and I still take part in trials when they come along.

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.