With our 1 year celebration came the BIG 1 year biopsy. Katy has had many caths, MRIs and biopsies of her heart post transplant, actually more than we had originally planned on due unfortunately due to her first year being a bit bumpy.
Since having grade 3 rejection over the summer she has yet to have a completely zero rejection biopsy. There was always a little something lingering forcing the scientist to grade it at a level 1 rejection. Forcing the team to keep those antirejection meds just a bit higher than they want them to be always putting Katy as risk for infection and causing her to have to fight more than her fear share of illnesses due to her increased decreased immune system. I hope that made sense. We really needed Katy to show zero rejection so we can work on lowering her level of antirejection meds which will increase her immune system and help her body better fight these common illnesses that keep taking her down.
As a note for any heart transplant families who are reading or have read Katy’s journey… it is important to note. That Katy is Katy and nothing about her case or her recovery has been by the book. It is highly unlikely that you or your child would or will endure what Katy has in her 1st year post transplant. For a patient to get CMV, Grade 3 rejection, a blood infection, and the numerous other things that have gone wrong is highly unlikely. That said and given all that Kay has endured and all the readmissions and close calls. Transplant was still the best treatment for Kate and we are thankful each and every day (even the days when we are fighting a mysterious illness) for the gift of life that our donor family gave Katy and our family. The team talks to us and worries about us because things haven’t been as smooth as they had hoped and haven’t been as planned. Mike and I don’t even realize what they are talking about… we expected bumps in the road and this is 100% better than the alternative. I do my best to keep it real here on this blog and that means you get the good with the bad. I just never want to scare or have anyone second guess their choice based on our experience. Everyone’s experience is different. Some harder some easier all different.
OK back to that annual biopsy. Going into this yesterday 2/24/13 I felt we had a lot riding on it. I needed a BIG FAT ZERO! I needed to know that the hardest part was behind us… that we would be finally start weaning some of these meds that we should have already weaned… I needed to know that the bout with Grade 3 rejection didn’t damage her coronaries.
I am happy to say… we got that BIG FAT ZERO!! Katy’s coronaries are perfect! Her pressures are perfect and we are starting to wean some meds! For the first time in her life… Katy is off of Lasix!!
She was a Rock Star... post cath. They had to go in through her groin vs. her neck which means she has to lay completely flat for 6 hours. 6 HOURS she did it without too much complaining. I tell you that girl she never stops amazing me.