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

Tuesday, June 16

John had another doctor's appointment today, and things are pretty much the same. He is feeling about the same, some good days and some days that he doesn't feel particularly well. It really is just a waiting game and that can be very frustrating when he has had to pretty much put his life and activities on hold. We go back to the doctor in about a month if nothing changes. There is still always the chance that we will get that phone call about a heart, but it is more likely that he will have to get sicker and go back in the hospital to wait. That isn't a very good way to live either, so at least this way we can be more comfortable and have at least some activity. At this time the highlight of his day is going out to the Quik Trip to get a couple of newspapers to read. Doesn't say much about my abilities to entertain him, does it?

Keep him in your prayers, and we hope that all of you are having a fun and safe summer so far!

Wednesday, June 3

Hey all, sorry for the lack of updates. John got to come home from the hospital last week after only one night there, which was good. He's feeling okay for the moment, doesn't have a whole lot of energy but at least he feels better than last week. This is an awfully busy week for me at work, so everyone has been good about helping out. Trevor is glad to be out of school, and has spent a few days up here so I can go to Monticello to work. And of course Jen is great about hanging around during the day. Today grandson Wesley is 1, so he is winding down after his first taste of birthday cake. So glad we could be here to celebrate with them, I guess that is one of the good things about being here with them at their home in Oxford.

We go back to the doctor next week, and things will probably be the same, so we don't expect any big news. We're still holding out for that heart to come. For now we have the nurse coming once a week, and we see the doctors every 2-4 weeks, depending on how things are going.

By the way, Nicole made it back safely from Kenya, where she had a great time. She has been so busy we haven't even really had time to hear about the trip but we will soon I am sure. She is in Panama City right now and went to the ocean today with the kids which I'm sure was a blast.

I'll post when we get some more news, thanks as always for the prayers.

Wednesday, May 27

It's more of that no news is good news stuff. John is back in the hospital at Emory, but doing okay. He has been feeling okay overall, not much energy and not much appetite, but not any major rhythm problems to speak of. This morning however, he started feeling very badly so we headed to Emory. They went ahead and admitted him and will decide tomorrow whether to send him back home or keep him. He didn't get shocked which is good, but he felt awful. They gave him some medicines and some IV fluids, since he may have been a little bit dehydrated. He feels a lot better tonight, but since he tends to have some pretty big swings from small medicine changes they are monitoring him very closely.

Even the ER doctor who saw him told the transplant doctors that he looked pretty bad, and they are used to seeing some awfully sick folks down there. Our doctors have been great as usual, so we just have to wait and see.

By the way, Nicole got back from Kenya today, she is very tired but it was great and she is looking forward to spending the summer with the Daraja African Children's Choir and traveling around the southeast. We're glad to have her back in the US safe and sound.

I'll try to do better at keeping you all posted!

Monday, May 11, 2009

Hope all of you mothers out there had a nice Mother's Day, we were blessed to have my family come over to see us at Zach's house in Oxford for a nice visit.

John is feeling about the same, but seems to have more of those bad days than good lately. They replaced his picc line last week, and that went very smoothly which was great. So far it is working well, and we haven't had any alarms from his pump which has also been great. We go back to the doctor on Wednesday this week, so maybe there will be a plan.

Things are a bit crazy with schedules lately, I will have to go in to work more since it is the end of the school year soon and there is a lot to do, Nicole is getting ready to go to Kenya for a couple of weeks and then will be gone all summer traveling with the Daraja African Children's Choir, and Trevor is getting ready for a 5 week debate camp in Michigan this summer. So, we want to thank all of you who are volunteering to sit with John and help keep an eye on him while I am trying to take care of the other things. Josh, Zach and Jen have all been great about helping out and putting up with us and our stuff everywhere.

I'll be better about posting if information changes. We haven't had to go to the emergency room for several weeks now, so that is always good news, but we sure do wish this whole thing could get moving along. John has been unbelievably patient and good natured about all of this, I would have been so mean by now that I can't even imagine it. So until the next time, keep those prayers coming and I'll keep you informed.