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.
(http://www.cadth.ca/media/pdf/Economic_Analysis_March%202011.pdf). 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.

1 comment:

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