Category: heart transplant

  • A Breath of Fresh Air::Day 33

    John went outside!!! The first time in 31 days!!!

    When I got to his room this morning he was all ready! He took a walk first, and then we were off!

    They told us we could be gone for one hour. I told the nurses that I was a rule follower, and I would be sure to have him back. They acted like they thought we were escaping! We went downstairs to the courtyard, and the first thing John said was, “Ahhhhhh!” He made me sit him in the sun. I bought him two Gatorades, and he drank both of them.

    After an hour we went back upstairs, but as we were passing by the nurses’ station John asked if he could go back for a while. The nurse said she’d rather him wait a couple of hours to go back, but John told her it had been 31 days since he’d been outside, and he’d appreciate it if he could get permission to go down again. I guess after seeing how emphatic he was, she gave in, and we were off again.

    We sat outside for another hour and split a roast beef sandwich. John ate all of his half. It’s funny, because right now John is not allowed to have any water. The doctor wants everything he consumes to have some nutrition to it. He is actually sodium deficient right now!

    After his eventful morning, John is taking a nap! He’s already looking forward to this evening when maybe he can go back outside again!

  • An Undeserving Blessing::Day 32

    Another busy day, but John is knocking a lot of things off the list! He came off of another IV medication, and he had a few other “maintenance” procedures done which means he’s moving closer to going home.

    There are still some potential issues that the doctors are watching (kidneys, blood, lungs), but because John looks so good and his vitals are consistent and strong, his surgeon is not very concerned at this point. The surgeon told us that he thinks if there were a real problem John would not look good and he would feel lousy. He thinks these things should pretty much work themselves out in time. However, they will continue to monitor them closely.

    John’s surgeon also said tonight that he cannot believe how much better John looks and how well he’s doing from a week ago. I said to him, “Well, I’ll be honest, that’s John. That’s why he’s still alive after six years with Cardiomyopathy. He’s a fighter, and he’s stubborn as a mule.” John went on to tell him, “Yeah, I’ve had a couple of doctors tell me that over the years.” We’ve seen through all of this how much of a fighter John really is!

    Because John came off of that IV medication, he got an order to go off the floor and outside this weekend for 30 minutes. It will be the first time he’s been outside in 31 days. I’ll be sure to get pictures! How good it will feel for the sun to sit on his face!

    And as a huge praise and blessing, God has once again proven to us that He is taking care of our every need in this process! Today John and I received a huge blessing from an anonymous person as a random act of kindness. We have been blown away by all of the generosity and support that we’ve received from countless people in many different ways, and today came another huge blessing! When I told John about this special gift today, he said, “I’m going to help others in the same way people have helped us.” It reminded me of a passage in Matthew I blogged about early in the summer and that the chaplain at Duke brought to my attention again recently.

    “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?
    “And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith? So do not worry, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’ For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

    Matthew 6:25-34

    John and I are a testament to the fact that God allows provides and always takes care of us. That does not mean I never worry, and sometimes I worry a lot, but this experience has proven to me that I can trust Him to provide!

    I will post pictures of John’s first trip outside hopefully tomorrow!!

  • A Busy Day::Day 31

    It’s almost Friday!! You wouldn’t think it would matter in the hospital, but it does! Weekends are much slower, and we’re looking forward to it!

    John has had a very busy, but productive day. He got the procedures he needed completed and walked two laps!! Tomorrow he will have dialysis, and we may begin exit education or education to prepare us for life at home after a heart transplant.

    John will be on anti-rejection medications for the rest of his life along with other medications he may need. Because these medications suppress his immune system so that his body doesn’t reject his new heart, we will have to be much more conscious of a lot of things including being around sick people and a lot of germs. So with this education we will learn about the medications and when to call the doctor when we suspect he’s getting sick, etc.

    So things are slowing down a little bit, and we are hoping to get to go home soon! There has still been no real talk of it, but it’s in that back of our minds that hopefully it will be sooner than later!

    Tonight John was thrilled to watch his first football game of the season – the Falcons preseason game. He said, “I need a break to just watch some football!” I think he’s right, and he definitely deserves it! For some reason I don’t think I’m going to mind football being on our T.V. five nights a week this fall! I’m just so happy that he’ll be here to watch it. This definitely puts life into perspective!

  • Today’s Prayer Requests

    We are so joyful for all the blessings that we have received that it’s hard to ask for anything else, but I keep forgetting about how desperate John is, and all of us are, really, for prayer. I know that God’s blessings are never ending and infinite within His plan and will, so I continue to pray fervently for John’s full recovery, no complications in the future, and many more years of life here on earth with him.

    Thank you so much for celebrating with us and praising God for His miracles while at the same time continuing to pray for John!

    These are our specific prayers right now:

    1. The doctors determine the cause of John’s loss of blood. He does not lose any more blood, and the reasons behind the loss are routine and minor. No surgery is needed and there are no major complications.
    2. John’s kidneys recover fully and quickly. John can end all dialysis soon and does not have to come back for more. His kidneys are protected in the future and the medications he will be on will not weaken or damage them any more. He will never develop problems with his kidneys.
    3. All of John’s organs remain strong and healthy with his new heart supporting them now and in the future.
    4. John’s biopsy (We have not received the results yet.) comes back without any rejection. If there is rejection, the doctors have wisdom to adjust his medications to decrease it without compensating his immune system too much.
    5. John’s body does not ever, now or in years to come, majorly reject his new heart. His new heart remains strong and healthy and able to sustain his body for many, many, many more years.
    6. John does not have any more medical complications including infections while in the hospital or after he goes home.
    7. All of John’s muscles continue to build back up and get stronger. His legs become strong so that he can walk independently.
    8. Wisdom for John’s doctors and nurses.
    9. As John and myself continue to fully understand from where God has brought us, we will be blessed and strengthened from this journey and trial. We will use our gift of life for His glory and purpose. We will never forget from where we came.

  • Moving Right Along::Day 30

    Today was a busy day, and tomorrow will be busier! John is in great spirits and continues to get stronger!

    I got back to my hotel room at 10:00 tonight. John saw almost every specialty doctor there is (well, not really, but it feels like that). He now has the all of these doctors rounding on him each day: transplant team, heart surgeon, kidney doctors, gastro doctors, infectious disease doctors (because of the infection he had two weeks ago), physical therapists, occupational therapists, small wound doctors (or something like that because of the wounds he has for all the procedures he’s had). I think that’s all. People think you get a lot of rest in the hospital – actually you get very little.

    His latest bloodwork showed that he has lost a significant amount of blood over the last day. It has leveled off, but it is still less than it was yesterday. There are several things that may have caused this, but we don’t know the reason yet. The GI doctors are now evaluating him to see if there’s been some bleeding internally. He is receiving a blood transfusion today to compensate for the loss. Tomorrow he will have a procedure to try to find the reason he lost some blood.

    John’s kidneys still are not recovered, and so tomorrow he will receive a semi-permanent catheter so that they can do dialysis whenever needed. The kidneys may be recovered by the time he goes home, but if not he’ll have to come back for dialysis when he needs it. They expect him to have a full recovery with his kidneys, but they cannot predict how long that will take. It is common for heart transplant recipients to eventually develop kidney problems sometime down the line – now and even in 10-15 years.

    John is up for the challenge the busyness tomorrow will bring, and is ready to start really moving forward. Today he said, “I have to start getting myself in shape!” He sees all the other patients walking by his room and is ready to start racing them!

    I am so, so proud of him!! Since he took such a big hit before surgery, he is doing a phenomenal job! I don’t think he’s ecstatic about his new heart yet because it’s taking him a little longer to enjoy its benefits, but that will come in time and hopefully soon as he gets stronger!!

  • Finally . . . A Change of Scenery::Day 29

    John is out of the ICU!!! And he walked there!!!

    John had a very busy and monumental day. He took a LONG walk in the morning, had dialysis in the afternoon, and then prepared to “check-in” (as he likes to say) to his new room. He walked all the way there!

    Since John told everyone that he would not eat until he got moved out of ICU (yes, that is right . . . he refused to eat until he was out), he has not eaten a “real meal” in about two weeks. For his first meal he chose pepperoni pizza and sushi! I took a picture of him giving a thumbs up as he ate it, but it’s on my camera (not phone), and I don’t have the plug to download it. I’ll do that asap though.

    He will continue dialysis as needed with the expectation that his kidneys will recover sooner than later. There is still no real talk of when he’ll get to go home. He will have to be able to get up and walk independently before he can leave.

    This night last week, at about this time, the nurse called me to tell me, “He nodded his head! He’s awake!” And now, one week later, he’s eating and walking, playing on his phone, and asking a lot of questions to catch up on the GA Bulldogs news. Last night a friend of ours from small group brought him his season tickets, and today he asked me again if I put them in a safe place.

    The old John is back, but with a new, strong heart! 🙂