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