Heart Failure to Transplant: Take this Cup

Later on Oct 16, 2014 my emotions grew darker:

God my God
I cry out
Your beloved needs you now

...

On Monday I was given a large packet of informational flyers, leaflets and booklets. I started reading the easy stuff, diet tips, lists of appropriate foods, sodium content of fast food, other recommendations for self care and healthful living.

Next I read the overviews of cardiomyopathy and heart failure.

This morning there were only two booklets left to read, neither of which I really wanted to look at:

1. Advanced care directives
2. Your care after a heart transplant



I decided to make myself read the post transplant care information.

I found a long detailed accounting if the multitude of drugs I may have to be on for the rest of my life and their many possible side effects, such as damaging my liver and kidneys, the always popular nausea and vomiting, causing high cholesterol, high blood pressure, excessive body and facial hair growth but regular hair loss, and acne.

I found a detailed description of the right heart catheterization test I'll have in November and which they will also use to perform frequent heart biopsies to check for rejection.

I found a discussion of rejection, how it it could happen at any time, the risk lessens but never goes away over time, and most transplant patients have some degree of rejection in their first year. With early detection it can be reversed before the heart is damaged enough to require a second transplant so its important to be alert to symptoms. But sometimes there are no symptoms, and sometimes the symptoms are the kind of mild "just don't feel right" things anyone could get when fighting off an infection.


I found discussion of how my new heart won't have any nerves and so may not speed up and slow down appropriately.

Its not as simple as new heart, cured. Those unpleasantries I just listed will always be part of my life.

And if I had a say, I don't want them to be part of my life!



Is the cure worse than the disease?

But, then again, I want to live!

Really, I want to find out this is all a bad dream or a big embarrassing mistake.

I want a miracle.



In some ways, I'm less afraid of death than of the suffering ahead.

Jesus prayed for the Father to take the cup of suffering and death away, and then said yet not as I will, but thy will be done.

That is also my prayer. I want to live for the sake of my family and because there is so much in this life that is good.

I will submit to the suffering ahead if God wills it, if He ordains my journey here is not done.

And in the midst of all the waiting, anxiety, failing strength and suffering ahead, in bad days and on good days,

I will lift my eyes to the maker
of the mountains I can't climb
I will lift my eyes to the calmer
of the oceans raging wild
I will lift my eyes to the healer
of the hurt I hold inside...