We are a little over a week out from when Brandon had his heart transplant surgery, and a little over a month since this all began.  Time seems to have no meaning anymore.  It was two weeks ago that he had his second balloon pump placed, and he was going to be bed bound for the duration of his wait for a new heart.  Now he is walking around the ICU unassisted, with one chest tube remaining, and a discharge date sometime soon.  I am so thankful that we are here at this point in his transplant journey, this could be going in a different direction and it does for so many other people.  As we walk by the other ICU rooms, we are able to see others at different points in their journeys and Brandon's comment to me today when he saw that was that he doesn't want to take any of this for granted.  The doctors comment daily on how well he is doing and we are hopeful that he continues along that path.  He is asked a lot if he feels any different than he did before, if he notices a change.  The short answer is yes, he does.  He can see it in his stamina, his ability to get out of bed and walk around the ICU.  You can hear it with a stethoscope, that he has a normal sounding heartbeat, whereas before it sounded like a gallop because the heart was failing.  There is also a little bit of this that is hard for him to describe and as someone who knows his own body and its rhythms can inherently attest to, it is the difference between just surviving, and feeling alive again.  

We are marking the days towards being discharged from UWMC and with that comes the next big phase of recovery, the first six months post transplant.  80% of heart transplant patients will experience rejection within the first six months.  Prior to all of this happening, I was under the assumption that when rejection happens, your heart will fail. I am happy to say that it is not the case and that rejection is handled by titrating his anti-rejection drugs and increasing some of the doses.  Brandon will also be getting heart biopsies every week for the first 4-6 weeks to look for signs of rejection.  After the first initial weeks, the biopsies happen every other week for some time, then decrease even further as time marches on.  In a few years, the biopsies lessen to every six months to yearly.  Brandon has a transplant team that we will be in close contact with, who will be monitoring his new heart very closely, for the rest of his life.  We anticipate being back at UWMC three times a week for the next three months, and possibly two times a week after that.  He will be getting labs drawn, getting diagnostic tests like echocardiograms, CT scans, and x-rays.  Exercise will be very important going forward, Brandon has an exercise protocol that he will be following, and we will be walking each day to increase his strength.  The hard part about all of this is that Brandon is 25-years-old, with a 25-year-old brain and body, and he wants to be able to go full throttle at life with this second chance he has been given.  The anti-rejection medications that he is on actually slow his body's ability to heal and so pushing it with activity and stimulation is actually not in Brandon's best interests.  Rest and recovery will be the only things that we are focused on over the next six months and giving his new heart the best opportunity to heal and work with the rest of his body.  

Brandon and I will be living in Seattle for the next six months so that we are close to the transplant center and all of his appointments, as well as if there are any complications.  The anti-rejection medications that he is on are immunosuppressive, which means that Brandon is at very high risk for secondary infections and getting sick from regular colds and flu viruses.  Getting sick for Brandon means an immediate call to the transplant team so that they can act quickly to get him the appropriate medications and therapies, and/or admit him back to the hospital.  We will still be limiting visitors over the course of the next few months and ask that they hand wash and wear a mask during their visit with Brandon.  This is for his protection and for him to have the best fighting chance during the most sensitive time post transplant.  The next year of our lives will look very different, but it is our hope that at the end of it, Brandon will be able to return to work and living a more normal life.  

Again, we are humbled by the care he has received here and the absolutely positive experience UWMC has offered us.  What has been an absolutely terrifying time in so many ways, has been buoyed by the love we have received from the staff here.  I walked with Brandon today as we visited the previous ICU he was in before his transplant.  The nurses that had not seen him walk yet, the practitioners that participated in getting him optimized prior to transplant, were all cheering when they saw him.  They saw him at the worst time in his life and now get to see him during one of the best.  He's come full circle and they helped him get there.  We are so thankful for their continued care and compassion, and for celebrating his journey with us.