A powerful journey from living with an artificial heart to a heart transplant....

Friday, January 7, 2011

Two steps forward, one step back....

Yesterday my Mom and I went to Toronto General for my first out-patient biopsy. It's not the most fun thing to do but everything went well. I got to see the six tiny little samples of my heart they send to the lab for rejection testing. I also did a bunch of bloodwork, of course, and saw one of the best doctors EVER, Dr. Ross. It was really nice to see her and feel her energy. She and the other doctors are very happy with my progress and were happy to hear from Dr. Rao (my heart transplant surgeon) that the surgery went very well. All in all, everyone was happy.

The transplant team always has their meetings on Friday mornings to discuss any med changes or anything required to control rejection and infection for each patient. I got a call today from my wonderful post-tranplant nurse and she told me that they found Class 3A rejection. I'm not sure of the specific terms but I was told to go straight to my local hospital to get IV Prednisone, also called Solu Medrol. I need this drug administered today, tomorrow and Sunday. At first I was taken back because I really didn't want to go back to the hospital but it's just another part of the journey. Everyone experiences some form of rejection and this is expected in my case. When I got the news about going to the hospital I was unsure if we would have to stay for the three days or if I could come home in between. Thank goodness I was told I could just come home in between doses. Each dose only takes about an hour.

My nurse told me that I have an over-active immune system for two reasons. One because I am young and two because I had the LVAD, which really allerted my immune system. In normal people an active immune system is a good thing, in a transplant situation, it's working against me. When I think back to my normal life before heart disease, I never really got sick. Everyone gets the common cold and chicken pox but I never remember having anything serious. I guess that's a sign that I have a good immune system.

What does rejection feel like? I don't feel a thing. That's the purpose of the weekly biopsies, so that I don't get to a point that I would notice rejection. If it gets to that point, it would probably become concerning. I have to be very aware of infection such as a cold, the flu, PCP, CMV, etc. But rejection is a different situation. I have actually been feeling really great! It's hard to believe that 17 days ago I had my heart taken right out of my chest and got a brand spankin' new ticker. I still have tingling in my legs and my right pinky finger isn't quite back to normal but everything is getting better. The hardest part is forcing myself to rest! Errr.

Noone likes to be in the hospital but it was nice to see my good friends at St. Mary's hospital in Kitchener. All the nurses were happy to hear about my transplant and very supportive. I was also lucky enough to see Dr. Smith. He actually rescued us from emerg and took us upstairs to get my Solu Medrol. Noone should be in emerg, especially someone that is immunosuppressed. It was also nice to see the Nurse Practitioner on the 3rd floor. She and Dr. Smith are the reason I got to the right place at the right time when I got the LVAD. They recognized that I desperately needed the Toronto General Hospital team and they sent me there when I really needed to go. I really respect when professionals recognize that a situation is beyond the abilities of their facility. It's an important lesson I learned in the past.

So for now I'm just going to keep doing what I'm doing. I've gone for groceries, keeping my distance from everyone, of course, and tried to do some other little errands and household chores. Hopefully soon I will start doing little exercises on the Wii. It really helped me get strength back after I got the LVAD. Ain't nothin' gonna stop me now!!


  1. Rejection happens to everyone at some point, think of it as getting the balance right.
    So happy things are going so well.