Friday, October 30

Hey there, it's Friday morning. I'm not sure how John's night went since they won't let me stay back there with him overnight, and I can't go back there until 9 am this morning. Neither of us were too happy about that but I promised Iwouldn't make a scene. Since neither of us had gotten any sleep on Wednesday night I am hoping that he slept well.

He was very disappointed about the donor heart not being good enough, and so was I, but we are glad that the surgeon is so discerning that he didn't want to take the chance. In fact, the surgeon did say yesterday that nobody used the heart, there were just too many things that he was questioning about it and wasn't willing to use it. I do feel bad for the donor family, also, for their loss.

Yesterday they did go ahead and put another Swann catheter in John's jugular vein in his neck. The procedure is a bit painful and he was certainly uncomfortable through the evening. The pressures in his heart and lungs that they are measuring are still very low at this time, which is good for his health and if he gets a heart soon that is another factor that will help the new heart to work better. Having the Swann in does move John to 1A status, the highest listing level, so we hope that another heart will be his soon. The big downsides are the discomfort, chance of infection, and having to stay in ICU. They want to move him to the Cardiac ICU but it is full at the moment.

I will update when I can, it's been a rough couple of days but I think that every day we are closer to the transplant and it will all work out okay. Thanks again for the prayers.

The doctor has rejected the donor heart so it's a no-go for now. Thanks to all for your continued support.

Hello everyone, this is Nicole. I figured I could post a quick update since I'm pretty sure mom and John are too busy at the moment. Tonight I got a phone call that a donor heart is available for John. Right now they are testing the donor heart but apparently it could be up to 12 hours until they know if it will work. Hopefully this is it! Please keep all those involved in your prayers: John, mom, the rest of the family, the doctors, and the family of the donor.

O Lord, my strength and my fortress, my refuge in time of distress.

Jeremiah 16:19

Monday, October 12

I'm back from the hospital for the 2nd time. Had my ICD replaced on Friday morning, came home, and the alarm on it went off about 4:00. Went back to the hospital, doctor was still there. He talked to the folks who make the device and it seems that there was something about the timing of hooking the thing up. Said it has only happened a couple of times, ever. Spent the night in the hospital to make sure they were right. Apparently they were. I win this lottery but can't seem to get a new heart. That's life. We're doing fine otherwise, no more alarms.

Friday, October 9

We are back "home" in our room after the surgery to replace John's pacemaker/defibrillator. All went okay, he's hurting pretty badly but can only take Tylenol. Hopefully by tomorrow it will be better. The surgery went well which is good, unfortunately we had to do it at all since we didn't get that magic phone call for a heart. At least now we don't have to worry about the battery giving out which would have been a disaster. The doctor just called to check on him, I didn't actually talk to the doctor since he was involved with another patient, so that was nice. He said it all looked good inside of John, as far as the lead wires that connect to the heart and all of the other hardware goes. So we are back into waiting mode, and trying to keep him well until then.

Thanks again for all of the prayers, this surgery was not exactly routine and we are thankful that it turned out well. A few days of taking it very easy and then he should be able to feel well enough to at least go out to the grocery store or convenience store to get a paper.

Saturday, October 3

Hey there, everyone. One of these days I'll be able to post that John has gotten a new heart, but not yet. We did spend about 4 1/2 hours at Duke's emergency room last Sunday, but everything is okay. At around 9:45 that morning we heard something a bit bizarre, it sounded like a European ambulance running its siren was inside John's chest. We figured out it was coming from his pacemaker/defibrillator, and luckily we didn't panic since we thought it was a low battery warning. However, we couldn't be sure so we headed to the ER. It ended up that it was exactly that, a low battery warning, but they had to do a million tests and EKGs and everything to make sure that it was still working correctly. So, we had to go and see the electrophysiologists this past week, who are the doctors that put the ICD (that's what it is officially called) in about 3 1/2 years ago. Normally they last longer, but between John's running and the huge amounts of shocks it had to give him last March it really drained the battery.

Bottom line is that they are going to have to replace it this coming Friday, Oct 9. They have to replace the whole device, which is a little smaller than a pack of post-it notes. It is normally done as outpatient surgery, but we will see. This is the third ICD that John has had (he's worn out the other ones), and it sure would be nice to get a new heart before this surgery, but we can't bank on that and can't take the chance on waiting. If he needs to be shocked they are afraid it won't have the juice to do it, and since he is totally dependent on it for pacing his heart it's a pretty big deal that it works right. So we will go in for the surgery on Friday and let you know. His device is behind the muscle in his chest, which makes the surgery a little harder (some of them are just under the skin), and because of his dependency on it for pacing his heart beat they are going to be extra careful with him. That means they will give him different anesthesia, deeper stuff than what they usually use, so they can take their time and do it very carefully and be able to monitor him better. Doctors seem very good and nice, and took a lot of time, so that was good.

We also had an appointment with one of the other transplant doctors on the team, and that was good. They are pretty surprised that his transplant hasn't happened yet, which is actually good news since it makes us feel like it can be any time now. So keep up the prayers and good wishes, and we'll try to keep up the news here. It's hard waiting and being away from home, but we still feel that this was the right thing to do.