I received in the mail my package from TransplantExperience.com today. I found out about this a little while after my transplant, and finally sent in for the information and to sign up for the quarterly newsletter. The package contains a DVD, a diary with questions, note pages and information for patients prior and after transplant – in fact I wish I had found out about this before my transplant as there is a good amount of information here that would have been helpful before hand – especially when explaining all this to family members. There is also a booklet explaining Prograf and what the medicine is, why you want to take it 12 hours apart, and other information including controlling cholesterol and high blood pressure. All of the information they sent looks to be on their website as well.
This is a great site for anyone, and I don’t think it is limited to certain hospitals, I was transplanted at UPMC in Pittsburgh, and the DVD I received reflects that; although there are several organizations listed on their site – so I assume they are all associated with this program.
I just received it today, so I haven’t had a chance to watch the DVD yet – so I can’t vouch for what’s on it, but by the looks of their site – I am sure it will be well presented material. The site and package is also funded by Astellas Pharma, the company behind Prograf. I like the fact that Pharmaceutical companies are starting to do this sort of thing, I know it’s a dual purpose venture, but it’s not like I have a choice on which immunosuppressive drug I take. They have enough money fund well designed, and organized projects like this so they should be the ones who do it – besides, they know about the drugs they make, so it makes sense to me on several levels.
As a side note, don’t lick the sticky strip on the survey card they send you – it’s completely nasty!