Christmas Greetings

Merry Christmas to all of you, we couldn't ask for a better gift than we already got this year. John is doing very well, the last biopsies and tests were all very good and he is actually back to running a bit. He is getting stronger every day now. He alternates walking and running and each day he can run a little more so he is thrilled. He can now drive so he is loving his independence! We go to Duke again next week, then we might be able to go for a whole month without going back there if all of the tests come back okay.

We have enjoyed being able to get back to church, both in Covington and in Monticello, and being able to act like normal folks at least part of the time has really been good.

We hope that all of you have a great new year, and we will try to update his test results from next week a bit sooner. John's dad had a "minor" stroke (not sure how any stroke can be minor!) so we spent a few days up in Athens with him at St. Mary's hospital, but he is doing well now and is home so we are hoping that everyone will stay well and we can start off the new year on strong footing!

Sunday, December 13

I guess it is a good thing that we have nothing major to report, thus no 3-times-a-day updates to the blog! John is doing great, in fact he is out walking AGAIN today. He walked 3 miles or so this morning, and is back out again. I think he is enjoying the alone time too, although he has been wonderfully patient through all of this I am sure he is pretty tired of having to depend on us for so many things. He is getting stronger every day, and is able to do more and more on his own. He has been really good about not picking up heavy things, and is really following what the doctors have said to do. I am sure I would be much grouchier if it was me.

We go back to Duke this week for more biopsies, and also for a left and a right heart cath. All of these tests measure rejection, and how the heart is functioning, and how his body is adjusting to the new heart and all of the medicines. It takes a few days to get results so we will be gone for a few days but should be able to get right back home after that.

We were able to go to church this morning at Covington First United Methodist Church. It felt so good to be back there, I can't even begin to describe how much we missed it. We will try to attend Monticello Baptist Church next week. All of the folks at both churches have been wonderful, and so supportive. We mostly can't wait until we can start back to doing for others and we can quit being so needy. I have told folks over and over again that we couldn't have gotten through all of this without the support shown by our churches, community, workplace friends, and of course family, and we love you all and appreciate it.

We'll update when we get the test results.

New Picture

This picture was taken at the Sarah P. Duke gardens in Durham. As you can see, John's come a long way since the last picture that was posted!

Thursday, December 2 Home

We got back to Monticello last night about 11. Our room was pretty clean so we spent the night at home for the first time since the beginning of March. All of the tests from Monday came up great. We're off from doctors until the 17th. Really looking forward to seeing folks as soon as we can. It'll probably take awhile. I can't say what all of this means- Missy, the heart, the prayers from people literally all over the world; the help at anything we needed; the people at Duke, Emory, and at the cardiologists in Covington; and a bunch of others. I do know that I've been given another chance that most people don't get and I hope I can be grateful enough. Thanks to everyone who reads this and God's blessing on you all. John

Monday, November 30th

All of the tests the lab did today came up good. Saw a few doctors and got looked over pretty well. Still waiting on a couple of test results on Tuesday. I go to see the surgeon on Wednesday, but that's just to check to make sure the heart's working and all of the incisions are coming along. I still have lots of holes, zippers, etc. Looks like I lost a knife fight. I hope everyone is doing well and my thanks for all of your prayers and thoughts. John

Happy Thanksgiving

We hope all of you had a great Thanksgiving day! We had a good one, and we certainly have plenty to be thankful for. We want to thank all of you, especially, for your love and prayers over this last year or so. We want to thank the donor family who made such a life-changing decision for us in the midst of their own tragedy. We want to thank our families for their patience and understanding over the last year when we couldn't be there for family events and celebrations, and we look forward to getting back to those. Of course we thank God every day for answering those prayers in a way that made sense to us, and we pray for continued healing for John and good health for all. The chain of events that led to the transplant are amazing - if we hadn't gotten the call for the first heart that didn't work out they wouldn't have done the bloodwork that kept John in the hospital and they wouldn't have done the Swann catheter that put him at 1A status to get the heart that he did. And without that heart we likely wouldn't be having the same kind of Thanksgiving that we are today. So we have much to be thankful for and hope to keep that in the forefront of our thoughts as we continue into this holiday season.
Love, Missy and John

Tuesday, November 24

My biopsy results aren't quite as good as they were last week. About 75% of transplants have this level of rejection or higher. They're going to raise some of the pill levels for a few days. This normally does the trick. Feel fine. Walked a little over a mile today and went to the state farmer's market. Hope everyone has a great Thanksgiving. I can't imagine being more thankful. I've been given a shot at life for the second time around. Most people don't get anything close to that. John

Monday, November 23rd

Got my staples out this morning. Have no wires, no tubes, no staples or stitches, nothing that will shock me, nothing at all. The blood tests and ultrasound were good. Heart's working well. I'll have the biopsy results probably tomorrow. John

Sunday, November 22

I am doing much better today than yesterday. Walked about 6 times. I can make it around our room without any walker. I can actually do some things without being a complete slug. Of course, I still need some help getting out of a chair or the bed. That's getting better. I have another biopsy tomorrow and get my staples out. Still can't use my arms more than about 5 lbs. per arm. This will last about 3 months until my sternum grows back together. I'm going to do my best not to do anything real dumb. I think we have 2 more of these tests once a week, then it moves to once every 2 weeks. That's when we make it home for a couple of days, if the doctors are ok with that. Looking forward to seeing everyone. I'm really looking forward to sleeping in our bed in Monticello. Haven't done that since March 5th. If we get home in the middle of the afternoon, I'm going to bed anyway. Funny, the things you miss. Had my first ham sandwich in about 2 years this afternoon. I've been going thru all of the cards and letters that people sent while I was in the hospital. My goodness, I already had boxes full of cards. I really appreciate all of them. I am so incredibly blessed to belong to a church like this one and have friends that are beyond belief. I can't say thank you enough. John

11/20/09 afternoon

I need to say something about the Duke Medical Center. Never, could they have been nicer, more accomodating, knowledgable, and just plain good at what they do. I bet I've had no less than 25 of the very best heart doctors on earth who each took a personal interest in my case especially after things headed south. Doctors would come in after being in surgery for 12 hours just to check. We were never mislead, misinformed, or mis anything else. The nurses were all really good. Some were about as close to angels as people get on earth. None of them have figured out exactly what happened, but they did as good job as possible trying to fix it. So far the only downside to all of this is we forgot to ask about making out. One of us has turned into a germaphobe and wants the doctor to tell us this is ok. The other of us is looking forward to it. John

11/20/2009 morning

At long last I get to do something useful. I got home yesterday afternoon. No extra oxygen, no real restrictions except I can't use my arms to lift anything for a couple of months. Don't know exactly what to say to everyone who sent their prayers, well wishes, cards, letters, etc. except thanks. I really look forward coming home for at least a few days fairly soon. I still have to be here at least once a week for biopsies, follow-ups, etc. so it might be awhile. Right now, though, things are looking up. All things considered, I was real lucky with the transplant and the subsequent lung issues. Once the lung stuff started to clear up, it went pretty quickly. Thanks again, John

Thursday, 7:45 pm

Sorry for the lack of a post, but it has been a busy day. Believe it or not, John was discharged today and we are back at the hotel! It has been a long and somewhat stressful but wonderful day, and it is good to be back here with him. They kind of figured that he could recover his strength here just as well as in the hospital, and will probably sleep better here. We will see, and hope for the best. He is still awfully weak and it will be harder without the hospital bed and all of that, but we will figure it out.

I'll post more tomorrow, thanks.

Wednesday, 8:20 pm

John has had another good day, I think he ended up walking 4 or 5 times. He's up to 3 or 4 laps at a time around the floor without taking a break so that is good. He still struggles with getting up from a sitting position since he can't use his arms at all (since they cut his sternum he can't push or pull, and can't lift more than 5 pounds for 2-3 months). We met with the transplant coordinator today and he talked about some things to deal with when we get home, and tomorrow we meet with the pharmacist who will give us lots of information about the extensive medicines he will be on when we get home. The regimen is rather rigid, but that won't be a problem for us since John is pretty self disciplined. There are quite a few changes that we will have to make, but the trade off is worth it. Lots of precautions, especially at first, like wearing a mask when out in public.

They have increased the amount flowing through his tube feeding for the night, and plan to turn it off during the day. John really wants it out, but we negotiated to check some of his blood levels tomorrow and then make a determination.

I hope we have more good news to report tomorrow!

Wednesday, 12:30 pm

Just another quick note, since I have to get back to the room. John has been doing great - did one walk this morning of 2 laps around the floor with no break and NO supplemental oxygen. They doctors and physical therapists are amazed at the progress and the turnaround. The xray still shows some lung damage and congestion, but his breathing is so much better and the fact that he is off all oxygen is really surprising to them. We are now negotiating with the doctors with the feeding tube issue, since the doctors really want to keep it in for another couple of days or so and John really wants it out. Will probably end up keeping it for one more day and pulling it tomorrow. It drives him crazy but they really want to keep his nutrition level up and being replaced. John is trying to eat but it's hard with the tube in.

He will walk again soon, and since he is doing so well I can probably take him without the nurse. Tad, his brother, is here and will help too.

More later, thanks.

Tuesday, 3:30 pm

Just a quick note - the right heart cath went well, and his heart didn't go out of rhythm this time which is always good news. He's walked twice so far, and did much better the second time so his progress is wonderful. They are evaluating when the feeding tube can come out. They don't want to pull it until they are sure that he can and will take enough nutrients in by mouth, but since he is getting nutrients through the tube he doesn't really feel too hungry. So we are advocating for its removal and we will see. He is down to very little oxygen when resting and uses just a little more when he is walking which is amazing progress. Even his nurses are surprised. He is still very weak overall and needs help standing up, etc., but compared to a week ago it is wonderful. His chest xrays are looking better so all of this is good news.

Your prayers, I am sure, had a part in this. Thanks for your wonderful support.

Tuesday, 8:15 am

John ended up walking 3 times yesterday, and did great. We are waiting now for him to get down to have his second right heart cath and biopsy. We will get results of the biopsy (checking for rejection) tomorrow. He slept well last night, and he was able to get down to much lower levels of oxygen and even got switched to the nasal cannula for yesterday evening. I've got to head back to the room now, but I'll write more later.

Monday, 12:30

John had a good night and a busy day so far. He has already sat in the chair, taken a short walk, and gone in a wheelchair (that's a big deal - he's been transported in his bed pretty much until now) to have another chest x-ray. Still a mystery what happened and is happening, but at least he is making progress. They have also turned his oxygen amount down to 45% which is a big improvement. He is still incredibly weak but working hard at getting better. He requested some pedals so he can work his legs while he sits in the chair, and a squeeze ball to work his arm muscles. He will work harder than anyone to get home, and sometimes it's funny to watch his interactions with the nurses. They are used to most patients having to be pushed into doing things, not having a patient take the initiative and do things on his own. When he's really tired, like now, and wanted to get back in the bed and they say something like "just for a little while, then we will walk again" he's about ready to deck them. At least it shows his fight which is good.

All of the prayers are so supportive, so thanks again. One of these days John will feel up to reading and hearing about all of the support you guys have been to me, and I know it means a lot to him too.

Sunday, 6:10 pm

John had a pretty good day, he sat up in the chair for about 7 hours which is great. He's awfully weak so I'm not sure how walking will go tomorrow. We'll see. It will probably be just standing, or maybe a step or two. They are looking for a set of bike pedals that he can use while he is in the chair. His back is hurting pretty bad from being in the bed for so long, but I think in some ways it is a good sign that he is aware enough to be hurting. His breathing was a little better today, and they turned down his oxygen from 60% to 55%. That doesn't sound like much, but it's going to take tiny increments to get him well. They really want to get him off that much oxygen, but right now it's not an option.

Hope all of you had a good weekend, I have to say that ours was good. John's sister Beth and her husband Sean came up here this weekend so it was nice to see them, and I was able to go to the hotel and do laundry and get a shower. One of these days we'll get home.

Sunday, 7:15 am

Good morning, all. They moved John out of ICU yesterday evening and into a step down room! The doctors felt that they weren't able to do anything in ICU for him that they couldn't do in a step down room, and the change would do him good. He slept pretty well last night, and it was nice to have a door on the room (the ICU has big glass doors and a curtain but they leave them open to monitor the patients). John was very tired last night but we hope to try again today to get him at least into a chair and possibly walking a few steps. His breathing is about the same, so we will see how that goes. The tube placement went well and he has been receiving nutrients starting yesterday around noon and all night long. We are hoping that will help.

He is impatient at his slow progress, but at least it is progress. We will see how today goes, and we all know that nobody will work harder than John at getting better.

Prayers are certainly answered, thanks for all of them.

Saturday, 10:00 am

They just took John down to radiology to do the feeding tube. The good thing is that it is not going to have to be done surgically, they are going to try the one that goes into his nose and down into his stomach. The physical therapy folks came by early this morning and tried to get him to sit up again, and at least his blood pressure stayed okay but he got very nauseous so I told them that we would do that again later. Last thing he needed was to get sick to his stomach now. I think that after he can get some nutrients into his system he will feel better. His breathing is about the same, and the doctor is pretty happy if it doesn't get worse at this point. In fact, if all goes well with the feeding tube they are considering moving him to a step down room on the third floor this afternoon. They aren't really doing anything for him in ICU now that they can't do better on the floor that is dedicated to recovery from transplants and other intense things like that, so they can focus on getting him up and walking. I think that will be a good move, if he stays feeling okay this afternoon after he gets food into his stomach. At least he did get some sleep last night, and feels about the same today as yesterday.

Thanks, and I'll let you know how it is going later today.

Friday, 3:30 pm

They are going to have to put a feeding tube in for John. He's just not able to get enough nutrition and they are very concerned. He's burning a huge amount of calories just trying to breathe so this is a necessity. The numbers that show his protein levels in his body are incredibly low. The problem is that they don't know if he will be able to wear the BiPAP at night to help him breathe when the feeding tube is in. They have to take him to radiology to do the feeding tube, and we aren't sure if they can do it today or tomorrow. We're hoping for today. It's really hard for him to drink any of the protein drinks, but he got 2 of them down this morning. He's trying but it's just not enough.

They did just come and remove the wires that they had been using to pace his heart at first. It seems to be working fine so they were able to take one more set of things out of him. They also have him almost totally off of the milrinone, which is the magic juice that made his old heart work better. They use it on new hearts for a while to help with the transition. This will be the first time in over a year that he won't be on milrinone at all. So there are some good things going on. His breathing is about the same as yesterday, so no worse. The doctors have no idea what kind of time frame we are looking at for his lungs to heal, so we have absolutely no perception of what each day will bring. He sure has a long way to go, but nobody will work harder than he does to make this work.

Hope you all have a nice weekend, we'll try to here on this end.

Friday, 11:05 am

Hey there, all. This morning John is about the same. We tried to get him up this morning to walk, but when he stood up his blood pressure tanked to about 75/35 so that didn't go too well. So at least he is sitting up in a chair right now which is better than being in the bed. We'll see how he is doing later or tomorrow and try walking. They are trying to keep him a little bit dehydrated since that makes it easier to breathe and helps with the fluid in his lungs, but they held the diuretic today since his blood pressure dropped so much. When he is sitting all of it looks good, so he just has to take it slower. Breathing is about the same, so at least it isn't worse. The CT scan was negative yesterday, mostly they were looking for anything to explain this, maybe a blood clot, but couldn't find anything.

Nutrition has become a big issue, but he is trying. It's just awfully hard to breathe and eat at the same time, and breathing is a lot of work. He's gotten awfully skinny and didn't have a whole lot of wiggle room there. But he drank 2 high protein juice drinks so far today, and that is good. He of course isn't hungry at all and can't stand the milky or creamy kinds of drinks so it gets a little hard to manage. A big hamburger would be just the thing, but chewing is too hard to do and takes too long away from breathing, plus they don't want to take the chance of him aspirating something into his lungs.

I know I keep thanking all of you, but I don't know how else to let you know how much we appreciate all of the good thoughts and prayers.

Thursday, 6:05 pm

Just a quick update. No big changes, he's probably about the same as yesterday. Dr. Milano, the surgeon, seems a bit offended that this could happen to one of his patients. If John weren't so sick it would be funny. He is a gifted surgeon, but doesn't exactly exude personality (most surgeons aren't known for their bedside manner, and I'll take the good hands part). They just took John down to do a CT scan of his chest to see if they can figure out what is going on, so we hope he can lay flat for long enough to finish the test. Breathing that way is very hard for him to do. They still really don't know why he can't breathe very well. I have asked for a case manager since we now have so many doctors who are involved, and we sometimes get conflicting info. One doctor says drink as much as you can, one says take small sips and limit intake, etc. They are all looking at their individual parts and we want to make sure that the overall picture is considered. Luckily we are at least a little savvy about it and consider all of it together. We have met with nutritionists today and gotten some protein supplements for him. What we are trying to avoid is the feeding tube that goes in his nose and goes down into his stomach, but they aren't sure if he can get enough nutrients to keep up his strength and healing.

Thursday, 7:15 am

Good morning, all. John had a good night, which is great news. I was able to stay in there and see his main doctor this morning when he came around. He said that things are moving in the right direction which he is pretty excited about, as are we. The heart biopsy looked great, no rejection issues, so that is wonderful news. They are weaning him off of the last continuous IV medicine, even though he will continue getting some medicines via his IV lines and the rest in pills. His breathing was okay overnight, I think it will take some time for him to get a lot better but any increase in the oxygen in his bloodstream at this point is really good. He was on the BiPAP machine overnight but they are getting ready to switch it to an oxygen mask for the day. He is still needing very large concentrations of oxygen but that will continue for a while. We hope to at least be able to get him to sit in a chair today, I'm not sure if walking around is an option yet. They are still concerned about his nutritional levels, so today we are concentrating on getting more food into him. You can only do so much pudding, though. He felt pretty good after the little he ate yesterday so I hope that will stimulate his appetite a bit today.

So today's plan is to breathe and eat, and maybe move around a bit. Sounds like a pretty appealing Sunday afternoon to most of us for that to be the goal for our day, doesn't it? I guess the big difference is how hard John is having to work to do those things, and how much he would rather be out running or working in the garden or a myriad of other things that will be available to him in the near future. Thanks again for the prayers, we couldn't do it without all of the support.

Love, Missy

Wednesday, 7:00 pm

They just kicked me out for shift change, so I figured I would update this. John is doing about the same as earlier this afternoon, which is actually a good thing. Not sure what the plan is for him for breathing for tonight, but we'll do whatever the respiratory experts think is best for his breathing. Might mean he has to do the BiPAP machine again, which is very loud and uncomfortable for John, but it does give his muscles a slight rest from breathing so hard. He is still awfully tired, but was able to eat some high protein pudding and drink some more water. They don't want to have to give him any fluids IV if they don't have to, they would rather he takes in nutrients by mouth. When I can get back in there he'll drink some high protein juice and maybe eat some applesauce. Every little step is a big deal at this time. We still haven't heard about the heart biopsy, but I think that if there was anything significant there we would have heard. They are continuing to wean him from some of the other medicines, so that is good too. Not sure if his heart is back in a good rhythm yet, but it is slower and not nearly as erratic as it was yesterday evening and parts of this morning. Doctors will probably still come around tonight so maybe we'll get more information.

We can't thank you enough for the support and prayers, they sure do make a difference.

Wednesday, 12:30 pm

John is still struggling, but in the last hour we have seen just the slightest hint at an ease in breathing. The doctor said that it is the first good sign he has seen in 3 days, so we are thankful for anything at this point. It's nothing even measurable yet, and certainly doesn't mean he has turned a corner, but right now we'll take an hour of doing better. His heart is still in atrial fibrillation, but at this time that is not as much concern for them as his breathing. I did get him to eat a small container of applesauce and he has had a few sips to drink so hopefully that will help. It's quite a production with the breathing mask, but I've figured it out. He doesn't really want the nurse to help so I'm glad that I can be there to do it. We will try some other food soon, like pudding. It's just really hard to eat anything when he is struggling so hard to breathe, and it is critical that he doesn't inhale anything into his lungs. We have seen doctors all day so far, and honestly I've lost track of all of them. Pulmonologists, infectious disease doctors, every cardiac doctor at Duke it seems like, and a whole supporting cast of nutritionists, xray, speech, and who knows who else.

I am sure that all of the prayers have helped, and I'll try to slip out of the room later to post an update. Thanks again, from both of us.

Wednesday, 9:00 am

Some of the doctors just came in and they are of course very concerned. John's numbers are about the same, but we are now seeing some heart issues. They may have been caused by the heart catheterization they did yesterday so they are looking into that. At least the results of the heart cath were good. They were not able to do the chest CT since he couldn't breathe while lying flat, so I'm not sure if they are going to do that today. They don't really expect it to show anything different. We should hear about the biopsy results later today. They are really thinking that the lung issues might have been due to him aspirating something around the surgery time, but they honestly don't know. There is still no real sign of infection, but his breathing is still very bad. He has been on the BiPAP machine which completely dries out his mouth and throat and is very uncomfortable, but they don't want him to have much by mouth. He is getting very low in protein and nutrients, but they can't really do a tube in his nose to feed him when he needs so much oxygen. So they are looking at some options. They don't want to do a surgically placed feeding tube at this time, but it is an option. I was able to give him a few ice chips which helped a little. They let me stay in there with him all night which was good for both of us, and he did get some decent sleep for the first time in a long time. Not great, but at least it was some.

We really need those prayers at this time, so keep them coming. Thanks again to all of you.

Tuesday, 4:50 pm

John is about the same, still having a huge amount of trouble breathing. Today he slept a decent amount and while he slept his numbers look better and he at least got some rest. Exhaustion has definitely set in for him. Right now they have taken him to the heart catheterization lab to do some more tests. Then he is supposed to have a CT scan of his chest, and they are moving him to the cardiac intensive care unit. He is currently in the intensive care unit for heart and lung surgeries, but they want him in the CCU now that his issues are not as surgically related. Hopefully this will be a quieter room and he can get more rest. The pulmonary (lung) doctors have also looked at him today and they will know more after the right heart catheterization they are going to do. He is awfully fragile, though, as any movement or disruption causes his heart to race and his oxygen saturation level to drop. Right now they are not allowing him to walk until they can get him more stable. He's awfully thirsty and hopefully as soon as possible after the heart cath he can have the ice cold sips of Coke that I promised him.

He's getting pretty tired of having to work so incredibly hard just to breathe, so I sure do hope we can get a handle on this soon. Thanks for the prayers, I am sure they are helping but we've still got a long way to go.

Tuesday, 6:15 am

Not much word on John yet, I talked to the nurse and they did put him back on the BiPAP machine for overnight to help him with the breathing, rather than the regular oxygen. He was just having to work too hard and needed a bit of a break. But at least they haven't had to put him back on a ventilator which is very good. I know he was sleeping when I spoke to her, so that is good too. I'll let you know more later.

Monday, 10:10 pm

Hey all, I just got back from the last visit with John and am about to settle into my cozy digs here in the waiting room for the night. He is still struggling a lot to breathe, but might be a bit better tonight. I got him to go to sleep a little while ago, he'll do it sometimes if I'm there and he'd been asleep for about 10 minutes before I had to leave. During that time his levels improved, so that is a good sign. He has gotten better this afternoon and evening, not great but better which is still good. They are hoping that he will get through the night without the BiPAP machine and without anything else drastic. He is still needing very large amounts of oxygen, but during the day he was able to lower that just a little. He has worked hard today at doing his breathing exercises and all that, and he and I had a good talk about how only he can do that part. He is a bit fidgety again tonight, and he did eat about 3 bites of food for supper. He drank a little Coke and said it tasted good, and I thought that was a good sign. The echo showed that his heart looks good, and the additional x-rays didn't show anything different, so they are still not sure what is going on with him. One of the doctors said he is their best patient, since he is working so hard to get himself well. I agree that he is their best patient, for sure. Now we can just trust in God and keep praying, and again I thank all of you for your love.

Monday, 1:50 pm

Hey all, I have been in with John all morning. No change really, in fact it might even be a bit worse. He is really having to be on high amounts of oxygen today. They did an echo of the new heart to be sure it is working okay, and some different x-rays that show the lungs better. I know that the x-rays don't show anything different from the ones they usually take in the room because they already had the results of that. They are continuing the diuretics to get some of the fluid off of him, and also the nitroglycerin. He feels okay, and actually slept about a half hour while I was in there. He hasn't slept much at all, and even then it is not for more than about 15 minutes at a time.

Keep the prayers coming, John is needing them right now.

Monday, 5:15 am

Good morning, all. I talked to John's nurse a little while ago, and he is doing about the same. He again did not get much sleep but did rest a little. They put him back on the BiPAP machine around 12:30 last night since he was just having to work too hard. Although he feels that the BiPAP makes him work harder it gets more oxygen into him and they felt like he needed that. Maybe today we will know more about the edema versus pneumonia thing, but it doesn't really matter if we can just make it better. His spirits are good but I did notice that he is getting awfully fidgety and a little shaky, probably from spending so much time in ICU and being exhausted.

I'll add more as we know more. Thanks a lot to all of you!

Sunday, 10:30 pm

I was in the room tonight when Dr. Milano, the surgeon, came by at around 8:30. I had heard that the man never sleeps, and I think that must be true. Anyway, he said that he isn't so sure about the pneumonia diagnosis, and in his experience it is unusual (but not unheard of) for a patient to develop pneumonia as quickly as John did after his surgery, considering how the surgery went. So he is wanting to treat him for basically pulmonary edema, or fluid surrounding and in the lungs, with more diuretics (he's already been taking some) and some nitroglycerin. He thinks part of it might be coming from the fact that John's kidneys and other organs are used to working with his old heart, and his blood pressure was normally in the 90's over the 60's. He thinks that taking off more fluid and using the nitroglycerin to dilate his blood vessels further might help his breathing more. So, poor John had to get more of the diuretic Lasix tonight and will spend the next five hours or so having to do something other than sleep.

He is feeling okay, but is getting pretty shaky. He did get to eat a few bites of jello and a few bites from a frozen fruit bar so we were pretty excited about that. Hopefully he will be able to eat more in the morning. He was able to talk pretty well today and he sure did work hard at breathing deeply and trying to open up those lungs so I hope this plan will help make it easier for him to breathe.

Will fill you in on the update tomorrow!

Sunday, 2:30 pm

John is doing about the same, and although his oxygen levels are not really improving signficicantly I think he is more alert and communicative than any day up to this point. He feels pretty good, and is hungry which is a good sign. He hasn't eaten in a week now and if things don't improve by tomorrow they will have to put in a feeding tube. He can't eat yet since he is on such large amounts of oxygen. He has walked twice already and did well. I have gotten to stay in his room most of the day which has been incredibly nice for me. I'm not sure if he agrees, since I spent most of the time harassing him about taking deep breaths and slowing down his breathing. I was in there when the doctor came in today and he said that other than the pneumonia everything was looking very good. He said that we are just waiting for him to turn the corner and they seem to have a handle on the pneumonia, and when things do start getting better he expects it to happen quickly which is encouraging. At least today he has been on the regular oxygen mask and not the BiPAP which he hates, and he has been able to keep his numbers in an acceptable range.

I'm sure that all of the prayers have been part of this success so far, and we thank you for them.

Sunday, 5:30 am

John had an uneventful night, which is good. I talked to his nurse and his oxygen saturation levels had come up a little, which was very good. When I left him at the end of visiting hours last night he was struggling to keep it at 90. Hopefully he will continue to improve in that area today. Nobody will work harder to get better than he will, as those of you who know him will agree. It's just hard for him to fight off things after they have to drop his immune system so low in order to prevent rejection of the heart. I can see him again beginning at 9 am, so I'll update sometime this morning. Thanks!

Saturday, 7:15 pm

I just got out from seeing John again, and he is doing about the same. He has walked 3 times today and is now finally back in bed (he stayed all day in a chair except when he was walking). His breathing is about the same, very labored and it is hard to keep his oxygen saturation level where it needs to be. He tends to breathe shallow and quickly, and it is only going to improve if he breathes slower and deeper. He can do it to a certain degree sometimes and for short periods, but can't seem to get enough air so he gets going faster. I think I need to develop some "music to breathe by", since there is music for everything else. I'm also going to develop a better face mask for oxygen, since the one he is using is awful and pokes him in the eyes. Maybe awful is too strong of a word, uncomfortable might be more appropriate. I'm sure he will be back on the BiPAP tonight, which makes it hard to sleep, but he needs the oxygen support. Let's pray for a restful night for him!

Saturday, 12:15

John has had a busy morning - already they did the swallow study and found that he is doing fine so he can have something to drink and eat (just applesauce and jello, but that's ok), he's gone for a walk, and the respiratory folks and doctors have been in. They have determined that he has pneumonia and that it is bacterial, so they are continuing the antibiotics for that. He is still struggling a lot to breathe. Walking helped a little, so they will do that several more times today. He is back on the BiPAP today since his oxygen sats were not where they wanted them today, but that is helping him. He says it is still uncomfortable and each breath is hard, but he continues to work at it. Good things are that his heart is doing well and everything else is doing well. They turned down the pacemaker on his heart and the underlying rhythm was doing better so that is good news. They turned it back up again so there is as little stress to his system as possible to allow him to try to get over the pneumonia. It's a big deal, and certainly a setback, but so far a manageable one. All we can do is keep him walking, keep him doing the deep breathing and coughing exercises, and keep up the prayers. It takes almost 15 minutes to get him ready for a walk, so that is a big production in and of itself. He's able to talk just a little since that is hard to do.

Thanks again, and again, and again!

Saturday, 5:15 am

I talked to John's ICU nurse from overnight, and she described his night as pretty uneventful, which is good at this point. He did get some rest, but she wasn't sure how much sleep. His oxygen saturation levels were good, and his bloodwork was pretty good. I guess I'll find out what that means later after the doctors have a plan for the day.

Thanks again!

Friday, 10:15 pm

John's day went pretty good, all things considered. He actually walked 3 different times which is amazing, and you can see his picture (thanks to Nicole for posting it and Zach for taking it!). Right now the breathing is only slightly better, but it is better. Doctors are still out on whether it is due to aspiration or due to pneumonia. They are treating him with both antibiotics in case the pneumonia is bacterial, and with antifungals in case the pneumonia is fungal. They were supposed to do a swallow study today, but the speech folks said they can't do it with him on such a high level of oxygen, so we're not sure when that will happen. I did discuss with the doctor my concern over the fact that he is so thirsty from the oxygen masks but can't drink anything, and there's not really a good answer for that except for swishing water around and spitting it out. So we will see what comes of that. The bad part is that he can't have anything to eat or drink until the issue gets resolved.

He is back on the BiPap machine tonight which is hard for him. He really hasn't had any sleep in quite a while and is getting even more exhausted but he is doing as well as can be expected. Maybe this weekend he will experience an ease to his breathing and will get to feeling better. He is really having to struggle for each breath, even when he is on the oxygen, so I hope he gets better soon from that.

They did pull the chest tube and his incisions are all looking good with no infections so that is good. Each day he has a tube or wire fewer than the day before so that is progress too! Keep the prayers coming, and thanks again.

Friday, 11:15 am

John has made some improvement, which is great. He is still having a hard time with some of the breathing but they have switched him back to a regular oxygen mask rather than the Bi-Pap, which is good. They actually got him up and walking a little bit this morning as that is critical for him to do and may in fact help with the breathing. They still don't know what caused the breathing issues, but they are going to do a swallow study to see if he is able to swallow well enough and correctly without aspirating. They think there is a chance that he aspirated some fluid, maybe even saliva, and it contributed to the problem. A nutrionist/therapist is supposed to do that today, and then they will figure out how to get him some nutrients. The ultrasound they did last night on his legs did not show any kinds of clots, so that was very good news as a blood clot to the lungs was a possible cause for the breathing problems. He is exhausted, but doing better. They are likely going to pull the chest tube today and see if that helps with his breathing, and they are making progress with the medicines and getting his new heart transitioned. Still an awful lot to overcome but each of these little steps are in the right direction. All of this information came from Zach, Tad, and Josh who saw John this morning and really tried to get the most up to date information from the nurse. We don't see the doctors on any kind of regular basis, and I have lost track of how many different doctors there are who are on his case. They see John a lot and I am convinced are making the right decisions, it's just that the way the ICU setup is we often don't get to see the doctors directly. I was feeling a bit overwhelmed and tired, and didn't want John to get the impression from me that things weren't going well, so I did not go back and see him. The guys are perfectly capable of keeping up with him for this morning, and it gives them all a chance to see him if only for a few minutes every few hours. I came back to the hotel to do some laundry and shower. Two showers in two days may be a bit much for my system to handle, though!

Hopefully he will be out of ICU very soon since he is making the kind of progress he needs to in order to move to the step down room. They are much quieter but still well monitored, so that will be great when it can happen.

Keep the prayers coming, you guys are a wonderful support to me and to him. As soon as John is able I will share with him your comments, cards, prayers and good wishes. I have told him some, but have a feeling he won't remember those. It will be really nice when he can speak better and breathe better, and will be that much closer to getting to come home.

Friday, 6:00 am

John's having a pretty rough time right now. Yesterday afternoon they switched from the regular mask to a BiPap machine that has a tight fitting mask and forces oxygen into his lungs. That seemed to help, but he is still struggling to breathe. When his nurse had to take him off of it for less than a minute for him to take some pills, his oxygen saturation levels dropped very quickly. I spoke with her this morning and the good news is that he was on a 50% suppplement level on the machine when he started, and they have been able to turn that back to 40% and still keep his oxygen saturation levels where they want them. He is still struggling very hard to breathe, though, and she doesn't think that he got any sleep at all. She mentioned to him that she was going to take it off for a minute to take his pills and he shook his head no, that he didn't want to do that since breathing is so hard without it. They did take another chest xray this morning but the nurse didn't have the results of that yet. We still don't know if this is pneumonia, some other infection, or fluid in the chest cavity but whatever it is it sure is hard for him. They are doing a great job of monitoring him at least, and maybe today we will have some more improvement. They have put him on another antiobiotic in case it is an infection or pneumonia. They are going to have to figure out a way to get him some nutrition, though, as he really hasn't been able to take in anything except for a few sips of liquids since Sunday night. Not sure what the plan is for that either.

Please pray for improvement in his breathing, as this has been a real trial for him. We are trying to keep our visits with him to a minimum as he is so exhausted, just a few minutes at a time. Thanks for all of the support.

Thursday, 3:45 pm

John is having a bit of a bad day, which is not unexpected but is certainly not what we want to hear (or I want to report). They had him sitting up in the chair for the morning, but he hasn't been feeling any better. His oxygen saturation levels, that measure the amount of oxygen in his bloodstream, have been dropping. They did a few xrays, then ended up putting a scope down into his lungs to see if they could see some kind of blockage or plug but didn't find anything. Not a fun procedure. They have increased his oxygen level that they are giving him and changed over to a mask rather than the nasal canula that just puts it to your nose, and that has helped a little bit. We are waiting to hear back what the next plan will be to get more oxygen into him, and what is causing it to be so hard for him to breathe. It could be the start of an infection, although he isn't running a fever, or it could be fluid that is pooling in his chest. He already has a chest tube in to drain that away, but it could be that the placement of the tube isn't getting into a pocket of fluid. So he will be in ICU a bit longer, and hasn't really been able to walk around yet.

We will let you know what they say. Keep up the prayers.

Thanks,
Missy

Thursday, 10:45 am

Just got to see John for a little while. His neck hurts a lot, probably from the tube being in his throat and the positioning. They had given him Tylenol and had a hot pack on his neck so maybe that will help. He's already been in the chair for many hours sitting up so he was tired, but when I left they were going to pull out his chest tube and take out some of the lines in his neck. They also gave us a room assignment in a step-down room, but since he hasn't walked yet (that was on their list after pulling his tubes) we're not sure when he will get moved. We are hopeful that moving around more will have him feeling better.

I'll keep you updated. All of the news is still good, and he is making tremendous progress but still has a lot to do before he feels a whole lot better. He did eat some chicken broth this morning that he said was awful, and drank some juice so that is good. Keep the prayers going!

Thursday, 6 am

Good morning to all. He had a good night, his nurse just came out a few minutes ago to talk to me. He is up and awake and is about to have a bath (that just begs for some kind of comment, doesn't it?), and slept well last night. He still has a headache so they are going to give him some more Tylenol. He is also still very full feeling but they they hope that getting up today and moving around will help with that. All of his blood work is looking very good and we hope he continues to improve. If he continues that full feeling they will keep him in ICU a little longer since they really need him to start to eat, but we will just have to see how the day goes. So far so good, and another night is another hurdle crossed. I have some homework to finish reading since they gave me a big book of information, rules, and things to get ready for now that he is after transplant, so I better go!

Wednesday, 9:15 pm

Hey all, it has been a good day for John. He's still very uncomfortable from the ventilator tube, and has had a pretty bad headache all day. He's feeling very "full", since they had to put all of that gas in his abdomen for the surgery and it makes him feel bad. But overall he is doing great. I happened to be in there when the doctor came by, and the doctor said that he is doing excellent and is progressing very rapidly. He also said that today was probably the day he would feel the worst and should feel a little better each day. They were able to completely stop his epinephrine, they replaced his old picc line with a new one, and he sat up in a chair for about 3 hours! He was able to walk from the chair to the bed, and then back to the bed after sitting up for so long. He was exhausted but did very well. A little woozy and nauseous at first, but he stayed up. His nurse tonight said that she would get him up again tomorrow and maybe walk - then she clarified that by "tomorrow" she means around 4 am. So it's a whole different world here. They are going to pull a line from his neck tonight so he'll have one less tube dangling out of him. He got to eat a frozen fruit bar tonight but didn't want much due to that full feeling.

The plan for tomorrow, depending on bed availability and how he does tonight, is to move him to the step down room. But it isn't unusual for him to have some bad days, and they do push the patients quite a bit but are also very careful not to move them out of ICU if they need to stay. As soon as he moves out of ICU the meetings will start for me with the transplant coordinator to make sure that we are completely ready for him to come out of the hospital. The medicines he will have to take are critical and must be taken on an extremely strict schedule. We have already started the process of contacting the pharmacy to make sure that everything we need is available.

I really do appreciate all of the emails, text messages, posts to the blog, and all of the good thoughts from you guys. I try to fill John in on who has contacted us, and I hope by tomorrow he will be able to remember some of it! Just kidding, he's starting to come out of the anesthesia fog and I'm thrilled. I'm staying here again in the waiting room overnight, but I'm able to get enough sleep and it makes me feel better to be here.

Wednesday, 11:30 am

Just got to see John and he is doing great! They removed him from the ventilator and they have adjusted some of his medicines and all is going in the right direction. He was able to talk to me a little bit, and smiled and it was wonderful. He is still very uncomfortable from the vent tube, but that will get better. They are even going to try to get him up and walking today. Zach, Josh and Tad got to see him too for a few minutes and I'm sure that was good for John. All of this is such good news. He is still pretty groggy but his nurse said he is doing absolutely wonderful and they are thrilled with his progress. They are planning to put in a new picc line (they took out his old one) so they can take the catheter out of his neck. Once all of those things are done he will be able to move to what they call a step-down room, which is out of the ICU and where I can see him more. It did me a world of good to see him and be able to hold his hand, I can tell you that.

Thanks once more for the prayers and love.

Wednesday morning, 5:45

Haven't been able to see John yet today, but I have talked to his nurse and the latest is that his night went great and his numbers are looking "perfect", so they are waiting for the transplant team to come by and will probably pull the vent soon. Pray for good results! In fact, the last time I spoke to him John was awake but they still wouldn't let me go back to see him until visiting hours. Prayers are working!

Tuesday evening, Nov 3

Last post for the day, I just got to go and see him one more time. He is still under deep sedation and on the ventilator, but they are hopeful that tomorrow they can get him off of that. They did add back the milrinone, which is the "miracle juice" IV that he has been on for the last year. The new heart seems to like it too, as it has improved some of his numbers. The goal is to get him off the vent and off of the epinephrine tomorrow as both of those are hard on the body. The new heart is being paced with an pacemaker, and they will also gradually see if it is able to beat on its own over the next few days.

Overall he is doing about "average" for lack of a better way to describe it. It really is a miracle that he got the heart when he did, so we are thankful for that and certainly hopeful for the prognosis.

On a lighter note, he did make me laugh yesterday. He had just gotten his breakfast and started eating it yesterday morning when we found out that a heart might be available so he had to stop eating and drinking. All that he had time to do was drink some prune juice which he describes as "wretched" before the doctor came in. John said it really wouldn't be fair if this transplant thing didn't go well and the last thing he drank on this earth was prune juice. Actually he thought that it would be just like our God to have a sense of humor like that.

We will keep you posted on developments. I am sleeping here at the hospital, I'm just not really comfortable leaving here although I can't do anything and he isn't aware that I am here, but it makes me feel better.

Tuesday afternoon, Nov 3

John is still doing well. They have taken him completely off of the nitric gas, which is a big step, and he is holding his own. The next step will be to remove the breathing tube and I am not sure if they will try that tonight or tomorrow. After that they will start weaning him off of the epinephrine (I think, I'm awfully tired so this might be a bit muddled), then off of the pacemaker that is right now working the new heart. They gave him a big dose of anti-rejection medicine so they will continue with that in a few days. They are also giving him a few units of blood since he seems to be bleeding a small amount in his chest, but it doesn't seem to be a big deal.

John's sons Josh and Zach came up today, along with his brother Tad from Chicago. Beth Wilson came over from Raleigh last night and stayed with me during and after the surgery. Thanks to all of these folks for coming, and thanks for the rest of you who stayed home to cover things there.

More tomorrow. Thanks again for prayers!

Tuesday, 9:30 am

I just got to see John for a few minutes. He is still on the ventilator and they are keeping him heavily sedated. He did start to wake up a bit and they sedated him again. They are keeping him on some of the meds longer than they sometimes do, but it is not unusual for him to still have the breathing tube. The new heart seems to be working well, but they are watching some of his numbers very carefully. Not concerned exactly, but cautious. At this time they are not planning to wake him up today, but to keep him sedated. His new heart just needs some time to adjust and they really want him to have time for his system to handle it. They are gradually weaning him off of the breathing gases and that seems to be going well, if a bit slower than average. The big thing with transplant patients is that there is no "normal" and everyone is different, so times for how long things normally take are very wide ranging.

Keep the prayers going, he has a long way to go and we appreciate all of the support. I'll try to update this as often as we have news and changes.

Love, Missy

Tuesday morning, November 3

Thanks again to everyone for the prayers, they have been priceless as they say. Just talked to John's nurse and he is doing okay, they were giving him some fluids. It's a rough surgery to get over so these next few days will be hard. I know that Nicole posted for us since I couldn't get to a computer and my brain was shot anyway. Surgery went faster than expected, in fact they weren't at all ready in the ICU for him and had to move someone else out to have his room ready! They expected him around 4 am and he got there around 1 am. I did get to see him for a minute but he was still sedated. I will be able to see him sometime after 9 when visiting hours start, for a couple of minutes. I didn't get a whole lot of information from the surgeon since we were all relieved that it had gone so well, but as Nicole mentioned the doctor said that John's own heart was, as he put it, at the end of the line and he didn't think it would have lasted the rest of the week. God works his wonders, doesn't he? It is amazing that John's numbers did not in any way indicate that his heart was that bad, which has always been our concern due to his conditioning from all of the running. It tended to mask just how sick he was and how bad his heart was.

I can't even begin to thank you all for the care and concern. John still has a long recovery, but at this time things are looking well and we are thankful for that. These transplants are an ongoing battle to keep rejection at bay and to keep the organ working, but at least the surgery itself went well and we will take things minute by minute at this point.

Out of surgery

John is done with surgery... I've been told that it went pretty well but the next hours are critical, so keep those prayers coming. The doctors said that his own heart probably wouldn't have lasted through the week.

Surgery

John is in surgery now. I'll let you know when I hear more.

It's Nicole again. Good news everyone.. it seems that all of your prayers have paid off. There's another heart, and it's already been tested and approved by the doctors. It's not from a high-risk donor, so that's good also. John's ready for surgery now, they're just waiting for the heart to arrive. The surgery itself should take around 7 hours. I'll try to post again as soon as I hear word that he's out. This is coming at a great time because John didn't have a very good night last night.

Thanks again to everyone for sticking with the fight!

"He gives strength to the weary, and to him who lacks might He increases power. Though youths grow weary and tired, and vigorous young men stumble badly, yet those who wait for the LORD will gain new strength; they will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary."

Isaiah 40:29-31

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.

Monday, September 21, 2009

Hey all, haven't posted lately since there is really no news to report. We fill our days with reading (the good news/bad news thing is that there is a Barnes and Noble close by, as well as a Borders - can't do the library since we don't live here), TV, and an occasional stroll through the parking lot around the building. We have watched some DVDs in the evening, and of course lots of sports. Thank goodness football has started, baseball was getting a bit old, even for John. I am working on the computer from here, since there is actually quite a bit I can do online. We have a nurse come once a week, and they ship us all of his IV medicines once a week, so that is pretty much the same. We are still hoping that something will happen before the next scheduled doctor's appointment, which is October 9, but of course we understand we can't control that. Our room is still pretty small, but so far it is working out fine. We venture out occasionally to a farmer's market to buy fresh vegetables, but we really try to avoid places that are too crowded or closed in to avoid the flu.

We are glad, I guess, that we are missing all of the rain in the Atlanta area. Overall the weather here has been about the same as in Atlanta, but we have gotten hardly any rain over the last week like they have.

John says that if anyone wants any advice on the political scene, just ask. He has had innumerable hours to watch, analyze, and critique our current situation. (I just sit back and do the crossword puzzle, he gave up on any stimulating political discussions with me long ago.)

Again, thanks for the prayers. We'll spread the word as soon as anything happens!

Sunday, September 7

After about 30 new tubes of blood, meeting with the entire heart transplant team, a number of forms, insurance approval, and 2 more forms, I am on the list at Duke. I had a lot of help from the transplant coordinator here and the insurance folks in Virginia. The place we're in is pretty small, but good enough for 2 people. Don't know exactly when the call will come, but we're ready any time. the operation itself takes about 6 hours and the hospital stay is 7-10 days. Thanks for all of the thoughts and prayers. I think this will work out. John

Tuesday, Sept 1

We now have appointments set up to see the surgeon, the transplant coordinator, the financial folks (that one's always a bit of a shocker), and the social worker, all for tomorrow throughout the day. It is a lot of coordination for folks with very busy schedules, but we are ready to get John's listing status changed from Emory to Duke after all of those meetings. We have been told that it is simply a form that gets filled out, so after all of the appointments maybe that part won't take very long.

We will get more of his IV medicine shipped here today; since there is a Coram office here in NC that transfer went very smoothly. Also, we are supposed to see a home health nurse today to get his picc line dressing changed out which is due today.

We've even gotten a call from John's Blue Cross Blue Shield insurance folks to check on him, and see if they can help in any way. I must say they have been great through all of this so far, very helpful and supportive.

All in all things are falling into place, and the process is moving along. We've already driven from here to the hospital so we know the best way to get there, and probably later on this afternoon we will figure out some other ways to get there, just in case one way is backed up or blocked. So we are trying to do everything on our end to be ready, then all we have to do is wait. That is certainly not easy to do, but John has gotten pretty good at it now. The fact that we stand a much better shot at getting this done sooner now rather than later (although we don't really know when it will be, it is great knowing it is a much better time frame) makes the waiting a bit easier.

Thanks again, and keep us in your prayers! All of you who are helping out in so many ways, and those of you who are supporting us through good wishes and prayers, are what keeps us sane.

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.

Friday, May 1

Hey all, just another update. We went to the doctor on Thursday, and things are pretty much the same. We have been experiencing some problems with John's picc line, which is an IV line that enters in his arm and snakes up into one of the large blood vessels near his heart. It has 2 ports that hang out, one of which is used for his IV milrinone which is the main heart medicine he takes, and the other port is supposed to be used to be able to draw blood. The line has probably shifted, and they are no longer able to get blood out of it, and when I flush it with saline there is a lot of resistance. We have also been getting a lot of alarms sounding with the pump he wears, probably due to the picc line having moved a little. It was originally put in on Halloween, so it is great that it has gone this long without any major issues. (I'm pretty protective about it, since infections are common and can be a huge issue, so I harass the nurses pretty good about cleanliness, etc. whenever they mess with it). The plan is to replace it next Wednesday at Emory, should be pretty routine outpatient surgery. However, they have to be careful of all of the other extra stuff he has in there, meaning the pacemaker/defibrillator and all of the wires that go along with that, so I guess nothing is routine.

We go back to the doctor in 2 weeks, and they will probably put him back into the hospital in about a month and re-do the right heart cath to check his pressures going to the lungs again. The good thing about that is it puts him back to 1A on the list, but it is a big deal to thread those tubes into his neck and then through his heart and out the pulmonary artery that leads to his lungs. When we get to that procedure he stays in the CCU, hooked up to lots of machines and no real mobility, so that isn't too much fun.

Other than that he is feeling about the same, his strength is getting better but he still doesn't have much appetite and has lost about 8 pounds in the last 2 weeks. He can't afford to lose too much!

Here's hoping for a quiet Friday, no visits to the ER for us, and a relaxing weekend for all of you.

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.