This is a rollercoaster and I used to love rollercoasters, but this one sucks
So much and so little has happened since I wrote last month.
We have lost hope and found it again and lost it and found it. It is a circle of uncertainty. Our days go from stressful to sad to very very funny and I wonder how we can exist at such heightened levels of everything for long.
Jeff has a really young cardiologist. He is really great but also very honest. "This totally sucks for you," he told us on our first post hospital visit. It was during that first visit that I realized that not only does this suck, but that Jeff is not going to get better. Meds and diet will keep him stable, but can not fix him. All that we can hope for is a long period of calm during which Jeff will seem like himself, but very tired. As March arrives, Jeff is preparing to get a defibulator installed. It will shock his heart back to life in the event that it just stops. This is scary and I have to say that we worry more that it will back fire and shock him by accident.
We have read many many stories of young people going through what Jeff has. Many people with cardiomyopathy can live 10 years like this before they need a heart transplant. Most of what we have read are stories of people far sicker than Jeff. This gives us some comfort, but in the end, while it is Jeff's heart that isn't working properly, it is his confidence that is truly damaged. He is not confident that he actually has a future. What a difficult place to be.
And so we wait. We gather up more "data points" as Jeff's awesome doctor says, until we have a complete picture of our path. The end result is heart transplant, words we couldn't even say a month ago, but something that I think we are preparing for.
So my report is that I really have nothing to report. We are existing on this rollercoaster. We are trying to deal.