Death With Dignitym2

2014 was thought to be my last year here
a diary of posts by Robert M


At the age of fifteen I contracted acute rheumatic fever, was in quarantine the first three days of the twelve days I was hospitalized. From that moment on was doomed to have a different life than most other people, I was a “severe” medical risk, a time bomb set in slow motion. At that time I did not know what was in store for me, though I was told some scary stories and that I wouldn’t live past the age of 45. And if I did live past that, it would only because I would have had parts of my heart, if not my whole heart replaced.

Robert M's First Call Into The Norman Goldman Show

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Monday, January 20, 2014

The Most Brutal of all Operations!

I keep getting asked why don’t I just get the operation again? They say things like surely that has to be better than the alternative? Surely the operation/procedures are better now, that technology has advanced. Please let me remind you that we are dealing with slicing the heart open! This is NOT like by-pass surgery, this is removing the aortic valve and replacing it with another!
Now first of all, this would not be the first aortic valve replacement for me, if I were to do this, it would be for the second time, which is what I refuse to do. To do this all over again:

So first off, after being knocked out is splitting your chest in two once again. They will most likely take a slightly different path than your original scar. It goes a little differently the second time because I have tiny steel wires tying my chest together that are there to help hold me together from the first surgery.

Then your lungs are collapsed as to make more room to access the heart. Just the recovery from having your lungs collapsed is indeed struggle.

Your blood is no longer being fed with oxygen from your lungs, a machine is feeding the oxygen while pumping your blood, as the next step is to disconnect your heart from your body essentially. They literally take your heart out of your chest cavity to do the operation.

Then your heart is literally almost sliced in half to access the aortic valve, which is then sliced out. At that time the replacement valve size is assessed, chosen and stitched into place. Then the heart is put back together. After that everything else is all stuffed back together and hopefully all goes well.

I’m sure that there are some people that would/will/have done this brutal procedure a second time, but I will NOT! To replace the aortic heart valve this is about the only way to replace that valve. Even after all these years of technology.

There is a new procedure that is done through a catheter, but this is still in clinical trial stage and I have been looked twice now as a possible candidate and I do not qualify for several reasons, probably the most important one being that I have a deteriorating bovine valve in there now that they would have to put the replacement valve over.
It was great that I got 14+ years with this bovine valve. But I knew before the operation and then even more so after the operation that is was going to be a one-time ordeal.

If my aortic valve is replaced again, it will only be because it was done AGAINST my will and wishes! I do not want to be split open or invaded again!


Brenda G said...

Wow, I am SO sorry to hear what you are going through. I can't even imagine what it's like. I wish more people cared about what you are dealing with. It seems like not enough care or even want to talk about this.

Marcia said...

It may seem like that but it's not true. Sometimes if you don't know what to say it's better to just not say anything. We hear Robert on Norman's show all the time, and we support his decision. If only we could take the pain away...

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Below is the audio clip from the Norman Goldman Show that started this all off for me.

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