Category: heart transplant

Unless there’s the event of going home, the uneventful days around here are the best! And yesterday was one of those days.

John did not need dialysis yesterday, even though it was scheduled, which is a praise! He did have another CT Scan of his chest and lungs. We haven’t heard the results from that and if he’ll need dialysis today or not.

He is looking better everyday!!! Now we’re just waiting to see how today plays out!

So we may not be going home as early as we thought. It may still be the end of the week, but it may be a little longer.

Not for any horrible reason, but basically John’s doctor just came in and had a heart-to-heart with him. He knows that John is at his breaking point with being here, so he wants to get him out soon, but he just put his foot down and told John that he was going to have to be more patient. Actually, his exact words were, “You sure are stubborn, aren’t you?” Finally I get a second opinion on that!! 🙂 There are a few loose ends that have to be tied up including tweaking his dialysis treatment, making sure his blood levels stay normal, and continue to watch the fluid around his lungs.

John has some fluid around his lungs and there are some “white things” showing up on the X-rays. His surgeon isn’t very concerned about it because he saw John’s lungs during surgery, and he said they were in really bad shape. He thinks it is just left over from that, plus John continues to look better and breathe better every day. However, the infectious disease doctors and radiologists are a little more concerned that there could be an infection or something. But if that were the case John wouldn’t be doing well and feeling well. So they need to watch it, and the two specialists came to an agreement to give him another Cat Scan tomorrow before doing something more embracive like a bronchoscopy.

John’s orders have been to eat, eat, eat! Eating is medicine as his doctor tells him. And he is still working on walking and getting stronger. John will have physical therapy at our house three times a week after we go home, and then he’ll go to a a rehabilitation center for physical therapy for some time after that.

John’s second biopsy yesterday showed 0 rejection (again on a scale of 0-3). This is awesome! Also, his right heart cath. showed that the right side of his heart is getting stronger. It is typical after transplant for the right side of the heart to not work as strong because when it was in the donor’s body it didn’t have to. But in John’s body, because he had more trouble breathing, etc., it has to work harder to keep up with his lungs and body.

As I’ve said before every day is different around here!! I will keep everyone updated on the Big Day of going home!!

John’s day has been crazy!

He has had a lot of things to do today, and he is exhausted. His echocardiogram showed that there is some extra blood in front of his heart which is where that blood could have gone when it showed he lost some. However, his heart is still really strong, so they are not concerned about it now. I think right now they are just watching everything and getting some baseline data to go from there. John’s doctors continue to emphasize how much he’s been through, and ECMO makes things a lot more complicated, so at this point they are still pleased.

Right now he is having his biopsy (last week there was 0 rejection on a scale of 0-3), having his right heart cath, and getting dialysis.

We have started to prepare for discharge by the end of the week!!! John is ready to go home, and he is very vocal about it! So tomorrow, after getting all of this done today, he will start rehab boot camp to get him ready to go. He had a different, male, physical therapist today, and he really worked John hard. John will have to go home on dialysis, so every couple of days we will go to a dialysis center close to home. He will also come back to Duke once a week for at least a month for a biopsy and right heart cath.

So things are moving right along, and we think that John will really move forward this week with physical therapy! We just need those kidneys to “wake up” as they say so that he’ll be better than ever and can REALLY start enjoying that new heart!!

These are our specific prayer requests. John is progressing well, and there are not “huge” issues, but there are a few things were still unsure of.

1. John’s kidneys recover soon. He does not need dialysis much longer.
2. John does not lose any more blood. He lost some more blood (after receiving some), but his doctor is not concerned yet because John’s vitals are good and he feels well. There is no known place where the blood is going, so the doctors seem to think it’s just a matter of his body getting back into sync. However, there’s always the possibility of it being something more. They just want to monitor it and get some good data before trying to treat something they’re not sure of yet.
3. John’s lungs are healthy. Right now John has some fluid around his lungs which isn’t surprising because of all the fluid he has on board since his kidneys aren’t working well. However, again, there’s always the possibility of something more going on. John’s doctor is just watching this, too, since John’s progressing each day.
4. John continues to regain the strength in his legs, and he doesn’t have any pain. He is able to get up and walk independently soon, and each day it gets easier for him.
5. Wisdom for his doctors.
6. John’s heart shows no rejection in tomorrow’s biopsy. John’s body never rejects his heart now or many years from now.
7. John does not get sick due to his weakened immune system now or ever. He is protected from big illnesses such as cancer. John will be healthy with his new heart.
8. John’s new heart will give him a great quality of life for many, many more years.
9. As John learns more about his journey now and when we go home, God will bless him and help him to see His hand in it all. John will process it all in a healthy way that simply helps him to grow his relationship with God. God will bless me in this way, too, as I continue to understand this process and as God reveals more and more of His purposes behind it.
10. We never forget from where God has brought us.
11. God will bless every person who has prayed for us and supported us in some way. Each person will be changed for God’s glory from hearing John’s story.
12. God will lead us in the direction He wants us to go to serve other people in need in the same way we were served.
13. As our marriage continues and changes, God will lead us and help us. He will built it to His glory and bless us with children if it’s His will.

John and I had a wonderful, relaxing Sunday!

We went outside to the courtyard again and had lunch. John ate a chicken salad sandwich and Doritos. His doctor told him this morning that at this point he is not concerned about “heart healthy food”. He said that will come later, but for right now food is medicine for John, and he wants John to eat a lot and whatever he wants. We haven’t gotten to eating a lot yet. John still doesn’t have a big appetite, and my nagging him to eat probably doesn’t help!

Later in the day we had a few visitors which was so nice! John’s boss and his family came to visit us, and some dear friends from church came to visit. It was great to see them, and it was great for John to see people who care about him and support him.

Tomorrow is a huge day! We are working on possibly going home by the end of the week, but there are still a few mysterious unknowns that the doctors are watching, so we have to get those taken care of first. This is John’s day tomorrow: an echocardiogram, dialysis, his 2nd heart biopsy, a right heart catheterization, and a meeting with the pharmacist for education about the meds he’ll take at home. Whew! I told him to get a good night sleep!