Friday, August 28

We just got back from our appointment with Dr. Hernandez here at Duke, which went well. Very low key guy, but he knows that we already have been through all of the initial transplant meetings and have been on the list for a relatively long time, so there was no need to go into too much detail about that side of it. Then we went and they did another echocardiogram and drew 25 tubes of blood (no exaggeration - it really was 25 tubes plus a few "waste" tubes they drew and then threw away). Now we are waiting to hear back from their offices about the meetings we have to have with the transplant coordinator, surgeons, social workers, and it seems like there was one other but I can't remember.

Bottom line is that everything looks good, and within about a week he should be on the transplant list here. The even better part is that Dr. Hernandez says that chances are good that a heart will become available for John relatively soon since at this time there aren't a whole lot of folks on the list here who are direct "competition" for his blood type, body size, etc. That is good. Of course there is no way to tell when this could happen, but we made an appointment for 6 weeks from now to see the doctor again and are hoping for a heart before then. After the surgery it's about a week in the hospital, then a month of once a week appointments, sometimes more often, then they start to spread out a bit more. Somewhere after that we will either transfer back to Emory, or just drive back up to here for the appointments, even if they are every few weeks.

Of course we realize that this is a huge surgery, but it didn't even come up that there is any alternative. This doctor didn't even change any medications or anything that we are doing now. The doctors at Emory have been great, but it sure is nice to have some hope that this might happen sometime sooner before another crisis for John, or any more shocks, or any of that stuff.

Thanks again to all of you for your thoughts and prayers, and we will keep in touch. Our room here is very cozy, to say the least, but it will work out fine. May get a little bit of cabin fever, but we will explore Durham and the area by car a little at a time for excitement.

Friday, August 14

Guess it's back to me updating the blog this time. John had a bit of a bad time this week. He fell Wednesday morning, trying to get up early to head to Monticello with me. Unfortunately he hurt his shoulder blade area pretty badly, and was pretty woozy for most of the morning. The dresser took the brunt of it, and we now owe Zach and Jen a new ceramic knob that John shattered and bent up in his fall. Since he continued to feel badly and was not very quick in his responses to me, I took his blood pressure which was a whopping 55/38, awfully low. It crept up a little after that, but bottom line we ended up taking him by ambulance to Emory. After 9 hours in the ER hallway, xrays, bloodwork, and some fluids since he had actually gotten a little dehydrated, they finally got him a room around midnight. Being on the transplant list and because of the IV medicines that he takes by pump all the time, there are only a few places in the hospital that they wanted him admitted to so we had to wait for a room. The good news is that we got to bring him home last night so he didn't have to stay there very long. A few slight changes to his medicines again, and we'll see how it goes. I'm just glad he didn't hit his head or break anything in his fall.

We're excited about the chance to go to Duke, since his chances of getting transplanted sooner are better. We know it is a huge deal to get the transplant, but since that seems to be the only option we would like it to be as soon as possible while he is still as healthy as possible.

We're glad also to have Nicole and Trevor back home. Trevor enjoyed debate camp and learned a lot, and is already back at Piedmont for his senior year. Nicole is trying to get her things moved to Athens to be ready for her classes, which start on Monday. They're very understanding of the need for me to go to Duke with John, and we appreciate all of the folks who are helping out on that front.

Saturday, August 8

Apparently this is one of those things that if you want it done, you need to do it yourself. I am doing about the same physically. Days get a bit long, a person can only sit for so long and read. That's all about to change, I hope. We decided to leave Emory and relocate ourselves to Duke. We looked at all of the transplant statistics and the one glaring difference was that the median time in months between the time you get on the list and get a transplant for Duke was 1.9 months. For Emory, it was 27.8. Duke also states on their website that the normal waiting time was 6 months. I've been on the list almost 11 months. Don't know if the procurement system around Duke is that much better or what they to do so many more so much quicker. This isn't any slight at all to Emory, they actually think this is a good idea, too. My initial appointment at Duke is August 28th and we've searched around for extended stay types of places. If anyone has a friend or relative around the Raliegh/Durham area that has a spare room, let me know.
Finally, I can't thank everyone enough for the cards, thoughts, and prayers. I'm going to try to get through this as quickly as possible so I can start thanking you in person. John