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!!

Toronto Appointment

I had a regular appointment at Toronto General Hospital today. They did an echo, took bloodwork, read Vito (my LVAD) and did the normal heart stuff.
Since there are 15 patients with LVADs out of TGH now, they have a regular clinic just for LVADs. The system now includes a visit with the VAD nurse, the cardiologist and the cardiac surgeon. I think it's great because I enjoy all of their company!
It was a nice appointment for many reasons.
Firstly, there are no concerns. The only issue I questioned them about was that Vito has made a few unusual sounds lately. Twice now he beeped randomly and by the time I could get him out to check the controller, he stopped. It didn't quite sound like a battery alarm. I couldn't figure it out. The nurse read the controller and didn't find anything to be concerned about. So I keep myself prepared for changing the controller if the need arises.
Secondly, a traveled to TGH with my good friend and pump-pal from Cambridge and her great husband. I really enjoyed the time we spent together.
Third, I got to see more LVAD patients. One in particular was implanted only a couple months ago and I would not have guessed. She looked great!
And last, but not least, I got to see many people on the LVAD and transplant team. I very much enjoy seeing them, especially when I do not have any concerns and we can have normal conversations.
Big thanks to the hardworking teams at the Peter Munk Cardiac Centre. You are all a huge part of saving lives and making a difference.

Kitchener Appointment

I had a regular follow-up appointment today in Kitchener. They are my local resource and one team that was part of saving my life. I always enjoy going to see them. They are very good to me and we have a lot of fun.

I have been having problems with shortness of breath since about January. The docs recently did a chest x-ray, echo and a breathing test. Chest x-ray and echo were good but the breathing test showed a slight thickening of the diffusion membrane of the lungs.... I hope I got that right.... The point is, that would explain the shortness of breath. It could be caused by one, or both, of two things. One. I have been on amiodarone for a while now and while it's a great drug, I'm told the only one right now, to handle arrythmias, it has many nasty side-affects.

I was very reluctant to go on it but the choice was either arrythmia or no arrythmia..... It's not a good feeling for those of you that haven't felt it. The most concerning part about having arrythmia was that with an LVAD I wouldn't feel how fast my heart was going and Ivan (my ICD) could fire when I wouldn't actually feel all that bad. So I chose no arrythmia.
The amiodarone could potentially contribute to the thickening of the membrane wall of my lungs. Although, I haven't been on it all that long, it was still a concern.

The second option that could cause the thickening is simple. Just plain old right-sided heart failure. My left side is fully supported with the LVAD but the right side is just working less. I still need that side. So the shortness of breath and thickening could be just the way it is right now.
My amiodarone was reduced by half and I'm not experiencing any arrythmias, good thing. If the thickening is from the drug, it will most likely clear after I'm off the drug. If it's just heart failure than my assumption would be that it would clear after I get my new heart.
That's what I know.

Everything else seems good. The doc was happy with my improvement in cardiac rehabilitation. I did a 6 minute walking test when I started and did 392 metres. A month later I walked about 480 metres in 6 minutes! That's a great improvement! My muscle test also showed improvement over the same time frame. I'm really happy with that.
There weren't any major concerns and I will just continue on as is.