Author: Brenda Rodgers

So much has happened today that I don’t even know where to begin.

First of all, my husband is so very sick. I know that seems like a strange thing to say, like I have been living under a rock all this time in complete denial or something. It’s not that, it’s just that he compensates so well. And then when he’s in a place where he doesn’t have to compensate anymore, where he can completely surrender, his sick heart shows its face.

This is how the day unfolded:

Some of our very sweet and generous friends in our small group at church gave me two nights in a hotel room with their frequent traveler points. This was the first time I has slept away from John when he has been in the hospital. Back in May I stayed with him in his room, but this time, with him going into the ICU, I knew I wasn’t going to be able to. Plus he needed a lot of rest, and it’s easier for him to get it when he doesn’t have to worry about me.

So I walked into his room this morning having not been with him all night, and the first thing I see is a breathing tube in his nose. I immediately started crying. I have never seen him with a breathing tube before. He was still half asleep, and as he opened his heavy eyes he looked so helpless, so sweet. I was told that his oxygen was low in the middle of the night, so they came in at about two o’clock and put in the breathing tube.

The plan was for John to have his right heart catheterization first thing this morning so that he could get his balloon pump put in and move into the ICU tonight. However, his blood was still too thin to do it. So they told us we would need to try again tomorrow.

But as the day went on John’s sick heart showed its face more and more. His IV medications were barely working to get the fluid off of his body, he was breathing very heavily even at rest, and his skin was a pale yellow color.

Even though the doctors ideally needed John’s blood to get thicker, they decided to go ahead and do the heart catheterization and balloon pump procedures so that John could move to the ICU. They gave him some vitamin K to help his blood, and by late afternoon he was in the surgery room having these procedures.

I was sitting in the waiting room at around 5:45 when two doctors came to talk to me separately. They both said, “Your husband is very sick. His heart cath. shows that he is sicker than he was in May when he was here.”

About fifteen minutes later they rolled John down the hall to take him to his room in ICU. I was able to say hello to him and tell him how much I love him and how proud I am of him before they took him off, but I had to wait for them to set him up in his new room before I could go back and see him. The visitation rules for the ICU are so much different than for a regular room.

When I saw John he already looked a little better. His color was better, and he said he could feel a difference in his breathing and blood flow. He was very tired (they had given him some medication to relax him during the procedures), but doing really well. When I told him how brave he is he said to me, “Oh, that was nothing.”

Tomorrow we begin again. Hopefully John’s sick heart won’t show its mean face as much and soon enough his new heart will take over.

We are getting closer to the end of Cardiomyopathy. Right now, it’s still at a snail’s pace, but each small step is one step closer.. As much as we hated for John not to be able to wait at home for his new heart, this is the journey we are on, and we are not in control. Every decision and every stage is a part of God’s ultimate plan to heal John in His way, in His timing.

This morning John had an appointment at 8:00 for a right heart catheterization. This measures the pressures in his heart and gives the doctors much needed information to insert a “balloon pump” safely. A balloon pump will help John’s heart pump blood to the lower part of his body. The plan was to do the heart catheterization, insert the balloon pump, and move John to the ICU.

When we got to the hospital, and they took John’s blood, they discovered that his blood was still too thin to do the catheterization. He had been off of his blood medicine for a week, but it still needed to be thicker.

Instead of going ahead with the procedure, they put him in a regular hospital room to wait until tomorrow. Hopefully his blood will be thicker then.

John got an hour and a half of sleep last night because he has so much trouble breathing, a lot of aches, and of course a lot on his mind. He’s hanging in there, but it’s hard.

This is the sickest I’ve ever seen him.

We were told about last week’s episode of this new show BostonMed. Well, I’m pretty sure it’s new, but if not it’s new to us. We had not heard of it. It comes on on Thursdays.

In the episode a teenager with Hypotrophic Cardiomyopathy undergoes a transplant. We just watched it, and it was amazing! The show takes the viewer through her life before, during, and after transplant.

It’s funny how when something new enters your life you see it and hear about it everywhere. God has been so good to consistently bring us stories from other people.

Here is the link to the episode. It is a really good show!

http://abc.go.com/watch/boston-med/SH5570013/VD5576561/episode-4

This week has been very emotional for both John and myself. John’s doctor decided that it is best for him to go into the ICU to wait for his heart transplant. He is scheduled to go to Duke on Tuesday for a right heart catherization with the intent of being admitted from there.

While John is in the ICU he will have a balloon pump put into his leg. This will help his heart pump blood to the lower half of his body. John will be completely immobile with this pump making it the most difficult part of being in the ICU. There will be relaxation therapists, psychologists, and medications available to him as he deals with this state of complete permanence.

John’s status on the transplant list will be elevated, and a heart may become available as soon as a week but up to three months. The doctors will set an arbitrary date to reassess how John is doing emotionally and physically and from there decide if he needs to continue to wait for a heart in the ICU or if he should go ahead and have the LVAD heart pump inserted so that he can come home, gain strength, and gear up for his transplant when the time comes. We would like for him to avoid having the LVAD if possible because it is a major surgery with a 2-3 week recovery time in the hospital, and it is not ideal to have two major surgeries close to one another.

John and I both knows that this is best for him. If he does not go into the ICU, his organs may begin to fail. He grows weaker at home every day. However, as the events that we have anticipated move closer it becomes increasing difficult to maintain a positive attitude. We are relying on God to completely provide everything we need. “And this same God who takes care of me will supply all your needs from his glorious riches, which have been given to us in Christ Jesus” (Philippians 4:19).

Since we have felt the enemy’s attempts to divert our attention away from God’s goodness this past week, we continue to glorify and praise Him for these blessings with more deliberate intent.

We thank you, Lord, for providing for us these things this week:

1. The generosity, love, and support we have experienced in countless ways from our friends and family.
2. Our church family, small group, and new friends in NC who have embraced us in ways we never expected and who have made this “home” for us.
3. John’s opportunity for life through his heart transplant.
4. Sustaining John for this long – 6 years – and giving him the strength to work right up to the end.
5. For leading us to NC and ultimately Duke so that John can receive some of the best health care.
6. Our doctors, nurses, and the transplant team.
7. Our jobs, medical insurance, and benefits.
8. The compassion and support of our employers.
9. The hope God continues to bring us through His Word and the stories and experiences we hear from other people.
10. For answering John’s and my prayers for a spouse later in life and before John needed the transplant so that we can endure this together and help each other.
11. My summer off with uninterrupted time to take care of John.
12. John’s attitude and determination to persevere with God’s help to overcome this obstacle.

We pray for these things this week with the absolute faith that God hears them and will answer them. “And the prayer offered in faith will make the sick person well; the Lord will raise him up. If he has sinned, he will be forgiven” (James 5:15).

Lord, please hear these prayers and answer them in your perfect timing:

1. John’s spiritual and emotional health as he is waiting in the hospital. That God will protect his thoughts and his mind and give him “the peace that surpasses all understanding”. That John will find comfort in the most uncomfortable of situations.
2. John’s heart donor. I have begun to mourn for this person as time possibly draws closer, and I pray for his salvation. We pray for the opportunity to thank him in Heaven. We pray that’s there is peace between him and his family right now. We pray for his family. That God will give them love, comfort, support, and understanding. We pray that they are open to God’s comfort and love.
3. Wisdom and knowledge for John’s doctors, nurses, and the transplant team. That they will make decisions that are in John’s best interest always.
4. That there are no complications with John’s leg pump or any other procedure that is done in the hospital.
5. Patience as we wait for God’s perfect timing. That we will not become frantic and forget that God always knows what is best for us. That we will continue to feel His peace.
6. That God will lead us (and me in particular) in any decisions that we (I) have to make concerning John’s health care.
7. That God continues to work in our lives and draw us closer to Him through this experience. Others who hear John’s story will also grow closer to God. That lives will be changed.
8. For God to continue to be glorified through our reactions to all that we encounter. That He gets the credit and glory for everything He is doing in our lives.
9. That the heart God has chosen for John is perfect for him and his body. That it is strong and healthy. That it will give him many more years here on earth to serve Him.
10. That every step from here forward is smooth, and if it’s not that God will give us all we need to get through it.
11. John’s body does not reject his new heart. If there is rejection, that it is minimal and controlled quickly.
12. John recovers smoothly and quickly from his heart surgery.
13. That God will comfort me when I am away from John when he is in the hospital. That He will protect me as I drive back and forth.
14. That God gives me the words to say to John to encourage him and lift him up during this time. That He will equip me to be the wife He has called me to be for John.
15. For time-management as I go back to work in a month. That God will lead me and help me as John continues to be my priority over everything else.

I love my husband. I love him for so many reasons. But there is one reason that makes me laugh out loud just by thinking about it.

John, like myself, suffers from what I like to call first-child syndrome. It’s the syndrome that a first born child in a family develops simply by having no one to go before him. With this comes some wonderful character traits that become very beneficial in adult life. Things like responsibility, focus, determination, loyalty, and independence (if used correctly). But it also comes with things that can end up driving you and other people crazy like perfectionism, tenacity, stubbornness, and simply being anal retentive. Again, I know this from experience with myself.

Well, the saying “as stubborn as a mule” does not even begin to describe John at times. And don’t get me wrong, right now this trait is coming in handy as he fights to work, heal, and basically stay alive. And it will be even more helpful after his transplant as he fights to get better. So I am very grateful for this part of John. It makes him who he is and why I love him.

On Monday of this week we called his doctor yet again. It has become a cycle that we’ve become accustomed to of John feeling bad, getting a change in medication, feeling better, and then feeling bad again making the cycle start all over. That is why his doctor knows he’s getting worse, and it is time to consider an ICU stay until a heart becomes available. So we were instructed to change his medication again and call his doctor back on Wednesday so that we could make the tough decision of whether to begin the ICU stay.

All day yesterday was spent in deep contemplation by both of us as to what decision we need to make. It seemed that the closer I moved to knowing that ICU was the best choice, the further John moved away from the idea. Each hour I could see in his face that he was becoming more determined to plead his case the next day with his doctor. His jaw was getting tighter, his forehead more wrinkled, and his heals were digging in. Don’t get me wrong. I didn’t blame him a bit. It is a big decision and one that can’t be made quickly. It was what he asked me to do next that made me bust out laughing.

John and I went on the UNOS website to look at the data of wait times for transplant recipients with O blood type. We were trying to determine whether it was better for him to wait at home longer before he goes into the ICU and goes up a level in status, or if it wouldn’t matter because his wait time would start over when he goes up in status.

So we formulated these spreadsheets of data at a regional level and at the hospital level (This is John’s analytical, numbers based, all facts mind coming through), and he says to me, “I want you to go upstairs and print these for me”. What? “So you’re going to take these to show the doctor tomorrow?” I asked him. He said, “Yes.”

I just started laughing out loud. I told him I bet he’s the first patient ever to bring spreadsheets into the doctor’s office before going into ICU. And as expected, when his doctor walked in the next day he thought the same thing. He says to John with a perplexed look on his face, “What do you have in your hands there, buddy?” I think it was a first for all of us, but that’s John. Nobody is going to put him in the hospital without a serious case built.