Sunday, June 24, 2012


So, this morning I got some terrible news. My grandfather, John Edward Clarence Priddle passed away this morning at 89 years old. In the past two years death has been more of a part of my life than ever before and some I'm noticing some patterns. First of all when someone dies people often ask how old they were and don't get me wrong, I don't mind at all but it almost feels like because they are old, it's not as bad or something like that. But, as I've mentioned before, when you love someone, no matter how old they get, you never want to let them go.
My Poppy was born in a small community called Pushthrough and the more I think about it the more I realize that that word is very fitting for the way my poppy lived his life. He pushed through all the hard times and didn't really let it bother him. Years ago he had a triple by pass and then about 17 years ago I guess now he was diagnosed with Parkinson's disease. I was in high school when it happened and I remember googling it and having people say that he would die of old age before he would die of Parkinson's disease. Once I moved away from my home town I only got to see Poppy once a year. Each year I would notice his hands shank more and more and it would concern me, but it never seemed to concern pop. He continued to paint and cook and live life like he always did. Perhaps that's where I got some of my strength to live with my Hemophilia.
When I was about 6 years old my parents got divorced and so me my mom and my sister sought refuge at Nan and Pops house, while living with poppy he turned into my second Dad, he taught me how to cook and bake and even left me loose in his art room where together we painted my favorite picture of all time, a vase with flowers.
One of my fondest memories with poppy is when I was about 8 or 9 years old and I was hospitalized for a few days for a bleed somewhere. Nanny and Poppy came to visit me and I cried because I missed seeing their dog Puppy. Seeing me in pain my poppy drove the dog up to the hospital and lifted the dog up to the window of my hospital room so I could reach out and pet the puppy. I still remember my hospital coat blowing in the wind and poppy with a big smile on his face holding the dog up over his head.
I could go on and on all day about all the wonderful things my poppy did for me, all the delicious cakes he baked me all the things he showed me about art and photography and his overall kindness and love for his family and friends. To think that it all ended today kills me. It makes me sick to think about. But I know it is not over, I know that poppy lives on in all 5 of his wonderful children his 13 grandchildren and 6 great grandchildren. I know that every time I cook something or look at a beautiful piece of art I will think of the kind and gentle person my poppy was and how blessed I was to have him in my life for 29 years.
He was also born on March 3 one day and 60 years before me. Because of this I always remembered his birthday and we always had a special connection, we actually spent several birthdays together. He would make me birthday cakes when I was younger and as he got older I would make him birthday cakes.
I am heading home to Newfoundland on Tuesday to pay my respects to this wonderful man. It won't be easy but I like to picture him up in heaven having a chat with my grandad and Charlie.

Tuesday, June 5, 2012

Treatment Options

So, I recently had an appointment with my Hemophilia Clinic Staff to discuss the possibility of me switching to OCTAPLAS. Octaplas is produced by Octapharma. It is a pooled plasma blood product that was been detergent treated to reduce the risk of blood borne pathogens. On the plus side it is a little less volume than plasma (not much though), it has a less chance of giving me a reaction and less chance of containing diseases. On the down side it is from about 1,000 different donors per unit, which exposes me to more people. It also has never been used on anyone in Canada that I know of so that scares me somewhat as well. It can cause citrate toxicity but that can be remedied by giving calcium gluconate which means I have to get two IVs during my transfusion and I feel that one is bad enough. Octaplas is detergent treated which means it will get rid of enveloped viruses such as HIV but will not get rid of non-enveloped virus' such as Parvovirus.
I have a few pages of information on it and I've talked to my doctors about it and overall I am not thrilled about this new option.
At the moment it doesn't seem to have many pros over Fresh Frozen Plasma and the fact that I have never had it before scares me.
The risk of getting HIV in Canada from a blood transfusion is 1 in 4.7 Million.
( However, I think I will always be a bit nervous unless someone can say something it is 100% safe. But as we know, nothing is 100%. Every day activities like driving are more likely to be a problem for me than HIV or other things like heart disease, cancer, stroke.
The life expectancy for Hemophilia is great and I don't even know if dying is what I am afraid of, all I know is this is a very stressful subject for me.
I remember visiting a friend in Nova Scotia and having to go to the hospital there, I was seen by a young female doctor and after reading my chart for a few seconds she scrunched up her face, looked up from the chart with disgust and said "do you have AIDS?."
I've never had someone look at me like that before I felt worthless and I never want to feel like that again.
When I am faced with making big dicisions like this I always consult the other factor 5's that I know, which is only like 5 people but still it's comforting.
My Doctor told me that she is knows of all the cases of factor 5 in Canada which is 8. The problem with having such a rare disease is there is not a lot of information, not a lot of support and not a lot of treatment options available.
Some other things we discussed is the possibility of using DDAVP and Novo 7. I am very excited about the prospect of trying Novo 7 as it is completely synthetic and is a concentrate which means I could infuse myself in my own home.
Novo 7 could completely change my life but there is not a lot of research on it for use in Factor 5 so my clinic is not comfortable with trying it on me at the moment.
At the end of the day I have to choose a product or possibly bleed to death so not a whole lot of choice in reality. However I am grateful that I live in a country where I do have access to treatment.