Tag: chronic illness

You wouldn’t believe the looks John has gotten since we arrived at the hospital.

After we checked in, we waited for someone to come and get him to take him to his room. The waiting room was packed with people, but they were holding the room for us as we made our way to Durham. After about five minutes a lady with a wheelchair rounds the corner and passes right by John. We were standing up because there was nowhere to sit. She looked at him, but just kept going. I heard her ask for Mr. Rodgers, and the lady at the desk pointed to John. John took a seat in the wheelchair, and the lady said, “You look so young.” That was o.k. because I hear how young John looks all the time. But I didn’t expect her to say the next thing. She says, “Is he your son?” MY SON!!! Really? Well, I just tell myself that I’m glad I have a young, healthy looking husband.

So later when we were settled in the room, someone came in to get John to take him for a pulmonary test. The man came in and said, “Are you ready to go?” John was laying on the bed in his hospital gown and jumped right up out of the bed and said, “Yep.” The man just chuckled and said, “You’re ready to walk, aren’t you? You’re not walking. I’m rolling you down there.” John just said, “Oh, o.k. and laid back down.” I just laughed and said, “That’s my Boby.” He’s never going to accept that he’s so sick. He’s always ready to go.

Throughout the past two days John’s had several different nurses – day nurses and night nurses. Every time a new nurse comes on and meets John for the first time we hear, “You look too good to be here. Are you sure you’re supposed to be here?”

Well, John is remarkable! He may not look sick or act sick most of the time, but that’s just because he’s a fighter. And the doctors have seen that the past few days. Based on the tests they’ve run they have determined that John is “very, very sick.” We have heard over and over again that, “He’s in the right place” and “We can’t believe he’s done as well as he has” and “He has a huge heart”.

An average heart size is 6 centimeters. John’s heart is 10 centimeters. His heart only pumps at a 6% ejection fraction. A healthy heart pumps at about a 60% ejection fraction.

Today we thought they might let John go home over the weekend and come back on Monday to do the rest of the evaluation outpatient. John was determined to show them how good he’s doing so that he could go home. He got a sleeping pill last night, so when he woke up he felt much, much better. He got up, got dressed in real clothes, took two laps around the floor, and insisted on standing up when the doctors came in. He didn’t fool them, but they were impressed with his stubbornness, drive to be “normal”, and just overall vigor.

All of this is a wonderful gift from God in the midst of all the madness, and it gives us tremendous confidence that John is going to beat this with his new heart! He is a fighter, and even though he’s supposed to be here now, it won’t be for long!

I recently came across this painting by Nathan Greene on another blog of a man who had a heart transplant, and I just love it. Every time John goes to the doctor I pray for the doctors and nurses who will be helping him. This painting is a wonderful reminder for us that Jesus is the great Healer. He will be guiding this whole process, and His ultimate will of healing John, however He sees fit, will be accomplished.

“As the sun went down that evening, people throughout the village brought sick family members to Jesus. No matter what their diseases were, the touch of his hand healed every one.” Luke 4:40

Watching John each day I am reminded of all of the gifts from God I take for granted and don’t even realize I’m taken them for granted. The most obvious being a heart that pumps blood to all of my organs and throughout my body allowing me to do ordinary things like walk up the stairs, talk without getting winded, laugh out loud, and sleep without waking up constantly. Each time my heart beats my God needs to be praised.

Then I was running the other day, and I thought of all the people in world without functioning legs. I have legs that allow me to run and run strong. I immediately thanked God for my legs. Each time I take a step my God needs to be praised.

There’s a teacher at my school who is probably about my age, and someone told me recently that she has had multiple eye surgeries. She might go blind. I didn’t even realize that people still go blind. I remember growing up watching Little House on the Prairie and Mary went blind. I guess I still think of blindness as something that used to happen a long time ago. Each time I open my eyes and can see my God needs to be praised.
It is fascinating to me that there are people who don’t believe in God. I can’t mentally comprehend that thought when I think of all the miracles I experience each day with a beating heart, running legs, seeing eyes. I think of the verse, “I will praise you, O Lord, with all of my heart; I will tell of all your wonders.” Psalm 9:1

Everything I experience each day is a wonder from God. It is a gift. When I feel like complaining, demanding my rights, wanting more, I need to remember that until my last breath I will have something to praise God for. If I have nothing more, if I am stripped of everything, I will have that last breath. And that is a wonderous gift from God.

When I daydream about the future I see such a full life for John. I see him doing the things he loves – going to GA football games, fishing, riding around in his truck, mowing the lawn. (Well, he doesn’t really love that, but right now it seems like the best thing in the world to him.)

Then my thoughts return to reality, which is still hard to believe is our reality, and my mind is immediately forced back into thinking about all the hurdles he has to go through to get to those wonderful days to come.

Today we talked to the nurse at Duke. I basically told her that John’s not going to be able to keep going like he is for much longer. We are trying to be patient and wait for the evaluation to be scheduled, but it’s going on two weeks now. She told us that the process is held up right now with the insurance side of things. The insurance companies have different contracts with hospitals, and they have to make sure the contracts are being followed. I asked her how much longer that should take, and she told me there’s really no way of knowing.

So this is hurdle number one – getting the evaluation scheduled with no hiccups from the insurance company. In the meantime I have been praying each day for John’s heart to sustain him, for him to have strength to get through the day, and for him to be able to rest at night.

This is going to be the longest and hardest thing I’ve ever endured, and it is just the beginning. I am going to have to surrender each day’s new challenges to the Lord over and over again.

Yesterday was a good day. Today has been a hard day. John came home exhausted. He hardly slept last night. Every day at around six o’clock the same routine starts. John becomes very uncomfortable. He has restless leg, some minor pain, and breathes heavier. He just can’t get comfortable. This continues into the night with him getting up at least once if not more. It is so hard to watch.

We have not heard back from Duke yet, so I called today. I just think something has got to give. It was right before five, so the nurse had already left, but the person I talked to said that it takes weeks to set up the evaluation for the heart transplant. She said that John is going to be very busy those three days. We are trying to wait for the evaluation before we go back to the doctor because we know there’s not much John’s new doctor at Duke can do until he has more information. On the other hand, John can’t keep going like he is. Each day is getting harder. What I would give to take it from him.