Friday, April 24

Well, you know the old adage that no news is good news, so that's why I haven't posted in a week. That's also why I'm posting today. Just got back from another visit to the emergency room here at Newton General. John didn't feel very well today, nothing very specific, but around 4:30 pm he started feeling very bad. When that happens, we head to the nearest ER. His heartrate was very erratic again, but didn't start racing or anything too extreme which was good. His blood work was pretty good too. So they gave him some IV medicines (he gets very sick to his stomach feeling, shaky, and short of breath for some of his symptoms) and then everything seems to settle back down. However, it takes several hours for his heart rate to level back out, and he feels really awful during the whole time. Although anxiety certainly adds to the stress of the situation, we sure do wish we could figure out what starts it. He doesn't want to get shocked again, and gets a bit anxious about that, but something starts this really bad way he gets to feeling.

But, we came home and are hoping for a calm weekend. We have to see the doctors at Emory, so we will probably do that on Monday. The good thing is that the ER doctor did speak to several of our doctors, and they were all in on decisions. We could have stayed overnight at Newton, or even transferred to Emory, but we and the doctors felt that coming home would be okay.

So please keep John in your thoughts and prayers, since we have no idea of the time frame for this we will keep asking for your support.

Friday, April 17

We had a doctor's apppointment at Emory, and things are holding pretty steady for now. John's electrolyte levels are holding well, since he is taking so few diuretics at this time, so that is good. He still feels pretty lousy overall, but that may just be par for the course. Still very little appetite, but he's trying to eat even though he doesn't really feel too much like it. Still having trouble sleeping, but that seems to go along with everything else too. So, it seems to be status quo for now.

We go back in 2 weeks to the doctor for an update, and don't really expect things to change unless something drastic happens. We sure are still hoping to get that call that a heart is ready for him, and we will continue with that hope. Although the chances are low, as long as it is a viable chance I can hope for that.

We are enjoying getting to see grandson Wesley more, he is at a wonderfully entertaining age and keeps us all laughing along with him. So even though we can't be home there are good things going on, and we try to focus on those.

I know that many of you read this, and still keep us in your thoughts and prayers, so thanks again. Just because things are calm for the moment doesn't mean we don't need your prayers and good wishes, so please keep them coming our way.

Tuesday, April 14

I guess it is good news that I haven't posted for a few days, and things have been pretty quiet. John still doesn't have much of an appetite at all, but he is getting stronger in moving around and is feeling just a bit better than the last few days. We have a doctor's appointment down at Emory on Wednesday, so we will get an update at that time.

I actually made it in to work for a while today, and I can't thank everyone enough for taking care of so many things for me there. Although I can do a lot from here and via the Internet, there are a ton of things that Vickie Mills, my assistant, is doing that keep things going smoothly. I've gotten spoiled though, being able to be around John so much, and it seems a bit silly but I miss him when I'm gone off somewhere. At least he is entertained by grandson Wesley while we are here at Zach and Jen's house, and we are able to enjoy his antics as he learns to walk.

Hope all of you had a nice weekend and Easter, and have a happy tax day!

Saturday, April 11

Well, it has been a mixed birthday for John today. He started feeling really badly last night around bedtime, so we headed to Newton and the emergency room. The good thing is that his potassium was good, and his EKG was okay, some rhythm issues but overall okay. The bad part is that he really felt awful, and they couldn't do anything about it. We spent several hours there, then came home and he tried to get some sleep. He still feels pretty badly today, no appetite and feels very stiff and worn out. We know there will be some days he feels better than others, but it sure is hard when they can't do anything to make him feel better.

We were very glad to be close to the hospital, though, so it reinforces the fact that we were right to stay closer to a hospital that can help him if needed. We are planning a very quiet birthday for him and a quiet Easter. Hopefully we will be able to celebrate more when he feels better. Happy Easter to all of you, and hope you get to spend it with family and friends.

Friday, April 10

Well, we made it out of the hospital and are at Zach and Jen's house. The first night went well, it sure was nice that nobody woke John up to take his blood pressure, get his weight, take blood, see if he was feeling okay (that's the one that always threw me - they would literally wake you up to see how things were going).

The home health nurses will come out a couple of times a week to draw blood and check other stuff, so that should work out alright. It is an adjustment to go from round the clock monitoring to being turned out on your own, but we think that twice a week will be enough. We sure don't want his levels to change much without us knowing and being able to react to them with changes in medicine, so we'll keep a close eye on things as well as we can. We will have plenty of visits back to the doctor's office down at Emory, but hopefully no more emergency helicopter rides and frantic drives to the hospital. He is back on the IV pump that I change out here, so he is still hooked up to an IV line but at least he isn't dragging around a pole and isn't plugged into the wall.

We really can't thank all of you enough for your thoughts and prayers, I know I have said it before but it means so much to us. We'll keep in touch through this, but this is one of those "no news is good news" times.

Wednesday, April 8

Believe it or not, the doctors finally got to us today at around 6:30 this evening. The plan is to let John leave from the hospital tomorrow, and we will go to Oxford since Monticello is a great place to raise kids and live, it's just not so great for his stage of heart failure. There are a lot of things to arrange, such as his at-home IV medications which are dispensed via a pump, how often the home health care nurse will have to come, all of the information that needs to be given to the transplant team about our living arrangements, etc., so I don't think we will get out of here too early. Besides, I'll need to make 14 trips to the car to get all of our stuff out of the room. It's a good thing I have the Excursion and not John's car. (The night they brought John here via the helicopter, I drove in the Excursion. Although it doesn't handle as well as his car, my thinking at the time was that if I hit a deer or something I would be able to keep going if I was in the Excursion. Guess it made sense at the time.)

Although we are very disappointed that things are delayed for getting a new heart, we are glad he is stable and able to go home. One of his cardiologists finally admitted that he never should have survived the amount of shocks he took, and the trauma to his system, so we are very thankful that we are at this point and he is able to go home. We are still taking it day to day, and will have to very closely monitor his electrolyte levels at home. It sure would be great to get that phone call at home that they have a heart, but we know that we are really blessed to be able to go home at all.

I will keep up the blog at home, probably not daily posts but I have a feeling we will still have updates if you are interested. I'll try not to bore you with the intricacies of his cardiovascular system. About all the excitement we would like is that phone call that tells us to hustle up to the hospital because a heart is waiting, but we'll keep you up to date. Thanks again for the kind thoughts, good wishes, posts, and cards that helped us get through the last 5 weeks with some semblance of sanity left.

Tuesday, April 7

John is still doing about the same, nothing much new. Although we are disappointed to be at 1B, we are glad that things are calm for the moment and he is doing okay. They are still trying to get his electrolytes under control, now he seems to need much larger amounts of magnesium than he can take by mouth so we are not sure how that will work out when they want to send him home. Because he has so many fewer tubes and wires, he was actually able to take a shower today which was great! Still had lots of plastic bags covering tubes and IV lines, but a real shower nonetheless.

He did have some rhythm problems last night, but the doctors are not too concerned (easy for them to say!!); since his potassium and magnesium levels are being monitored so closely they feel the slight rhythm issues are not alarming and will not get worse. They had originally said he might go home on Wednesday, but they are still trying to regulate enough things that they are not going to send him home until Thursday at the earliest. Monticello is just too far away from a hospital that can deal with him, so we will either find someplace down here near Emory or impose on Zach and Jen (John's son and daughter-in-law) who live in Oxford near Covington so we can be close to Newton General Hospital. We are still waiting to see one of the doctors today to see what he thinks.

He has been in the hospital now for almost 5 weeks, and we still appreciate all of the support and good wishes from you all. Hopefully, if we can't get a heart, we will at least be home for his birthday and for Easter.

Sunday, April 5

Unfortunately John had to drop back to the 1B priority level at midnight last night, and no hearts became available to him before this. It is a bit discouraging, as any of you who know him understand that he isn't so great at just waiting around and doing nothing. Although this is pretty typical, for a patient to be at 1A, get stabilized and drop back to 1B, it mentally sets you up for the next crisis it takes to get back to 1A. Also, the chances of actually getting a heart at 1B are very, very low, so it feels like we are just kind of wasting time. At least at 1A we felt a better chance of the transplant coming at any time.

On the good side, he is healthy enough to be a 1B. His heart rhythms are good, his lung pressures are very good, and overall he is doing okay. His kidneys are doing a bit better than they were because they have decreased the amount of diuretic. They may have to adjust the amount of those up just a bit, since he is still pretty puffy in the belly and legs. The doctor today said he needs to increase his protein intake, so they are trying to give him some protein shakes. He's awfully "full" feeling, however, so it isn't all that appealing to him. But the doctor said that additional protein will actually help with the swelling in his legs, so we will see.

They did pull the Swan catheter from his neck today, so he has a lot less tubes and wires at the moment which is nice. They are planning to move him back to the telemetry floor, so he will be able to take a real shower with only one IV line that needs to be covered with a plastic bag, so that will be good. No idea still for the long term, and still modifying his medications from day to day. We are still hopeful for a heart soon, and it can still happen, so we are holding on to that thought.

Friday, April 3

Today went okay, still some issues with the potassium and magnesium. They are still trying to regulate the amounts, but at least they are getting closer.

The main issue is that John's listing status will probably drop to 1B, which is the second highest priority level, at midnight on Saturday. So if a heart does not become available before then, he will drop off the highest level list and return to being a 1B. The good part of that is that he is just too healthy to stay at 1A, which we have to look at as good news. His lungs are clear, his kidneys are doing a bit better, and his heart has been staying in good rhythm. The disappointing part of it is that his chances of getting transplanted at 1B are very low, since available hearts will go to other 1A patients.

Although there are no long term plans, for the moment they will probably pull the Swan catheter from his neck vein (right now it goes into his jugular vein, then into his heart and out into the pulmonary artery that leads to the lung) on Sunday or Monday, and move him out of CCU and back to the telemetry floor where they can still monitor him continuously but he has a lot less wires and tubes. The good thing is that he will be able to move around more, take a modified shower, etc. The doctor that checks on him over the weekend will make these decisions, but for the moment that is the plan. As far as him coming home from the hospital, we don't really know.

So we are hoping for a heart on Saturday, and after that we will just take a day at a time and see how it goes. Keep us in your prayers, and have a good weekend.

Wednesday, April 1

Sorry for the lack of a post yesterday, but I'll try to get you all caught up today.

They gave John some diuretics yesterday, much lower doses than they had been giving, to try to keep his potassium and magnesium from swinging so wildly. It seemed to work better, but he still had to have some pretty massive amounts of potassium and magnesium and didn't feel too well, but it was better than in the past. They are going to give him diuretics again tomorrow, at even lower doses, and see if it will work well enough to get the fluid off of him without upsetting his electrolyte balances too much. Without the diuretics his belly and legs swell with fluid, and his heart has to work much harder. It is harder to get the blood to his lungs, so shortness of breath can occur and in general he feels pretty bad. Giving him diuretics is hard on his kidneys and causes the electolyte imbalances, so basically the doctors try to find the best combination to get rid of the fluid without it being too hard on his heart.

They have had to draw blood so many times a day that he is now anemic, and getting iron shots. They aren't fun since they go in his belly, but right now they are only giving him the shot once a week. The other option is a blood transfusion, but we don't want to do that because it can introduce antibodies that limit his heart matching. Right now he has no antibodies, which is good. They are also going to give him a hepatitis B shot, so his series will be complete. Then in a month they can draw blood and check the titer, which basically says that if the numbers are good he can accept a heart from a person that is positive for Hep B, which is good because it opens up the options even more.

So, every day things change a little bit but at least it has been pretty calm. About the only excitement we want right now is that phone call that says they have a heart and it is a good match. Again, can't tell you how much we appreciate the posts to the blog, the cards and notes, the emails, and especially the prayers and good wishes.