Transplant Experience – good pre & post transplant information

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!

The best kind of news

They say no news is good news – so I guess I have some wondrous news of the none kind to report. Everything has been really just towing the line for the past few weeks. Nothing has gotten any better or any worse. I still have a general lack of energy but I really can’t put too fine a point on any one thing that makes me want to come home from work and take a nap. The only real bummer part is that it still makes it extremely trying for me to get on my rollers and ride – I just get so danged tired so quickly, that it is really a struggle to even want to get on them.

I have been making strides to walk more, and up until this last week I was getting out 2 times a week or more – mostly with the boys. We would pile into the Daddy Bus, and cruise to the River and walk and chunk rocks. Good times… good times….

My INR levels have been a bit quirky for the last few weeks though – requiring weekly adjustments and fiddling to get them to normal, stable level. I am hoping that this irons itself out again soon – so I don’t have to keep goofing around with an already goofy schedule of days and doses.

It still seems a bit weird that I don’t have to go back to clinic until November. I’m not complaining at all, quite the contrary; I’m thrilled. But you get into a routine, and you get used to things – regardless of whether or not you like doing it. The parts I do like are the good eats, real movie theaters where the sound is like a bad am radio station; and believe it or not seeing Katie, my coordinator. She’s awesome – I couldn’t be luckier having gotten her as my transplant coordinator.

I’ve just been lucky all the way around.