I sat in the ER with my diagnosis, and knew that they had already run a cardiac test. They again assured me that the reason for me going to the ICU instead of a regular room was in order for them to monitor my heart on a continuous basis -- The sooner that they knew about any potential damage, the more that they could do.
And so, I waited... And waited... And waited... And as I sat there waiting, I realized that there was something wrong with this entire picture. We've all seen the movies and TV shows where the patient gets thrown onto a stretcher and the transportation staff run all the way to the ICU. Now, I know that my condition wasn't good -- But as there was no damage yet, this was really a precaution in case it happened before they could get the Potassium level down.
So I didn't really expect any extraordinary rush, with people screaming for items STAT and pushing each other out of the way to get their procedure done. However, I did expect, as I think is fair, a reasonable level of care and concern. After all, this was my heart we were talking about, and again, this could have significant effects on the transplant. So I began to wonder... If I am going to the ICU for constant heart monitoring, and I already have the contacts on from the first time that they ran the ER heart test, why were the contacts not connected to the ER monitoring (which is very similar to the ICU)? We asked a few times, and no one knew the answer, but promised that they would "get the nurse right away"!
In retrospect, we SHOULD have demanded an answer. Over and over again. It was my right. But fool me once, shame on you. fool me twice, shame on me. I will not make the same mistake again.
SIX hour later, without a single further check of the condition of my heart, I got the news -- Transportation was taking me to the ICU. And now, although I am not a tremendously religious man, I began to pray that no damage had occurred during that long, long wait...
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5 comments:
Your writing is really good. Like a suspense story, too bad it's not fiction eh? I go for my first consult on a lung tx on Fri. I'm taking your experience to try to keep myself alert to everything. I'm not too bad, just on exertion, but better ready I suppose. Looking forward to the next episode.
Thanks for the compliment, surfric!
And yes, I think we both wish that our stories were fiction -- Wouldn't that be nice?
Glad you are able to get some info from my experiences. Is your lung evaluation from damage caused by Alpha-1? Have they discussed your genotype / serum levels with you? If not, push them for answers -- You deserve them!
The sooner you get on the list, the better -- From my understanding, length of time waiting is one of the tiebreakers used on down the road, so it may be a benefit to you to be there earlier.
Also, make sure you avoid environmental irritants (smoke, etc...). In addition, if your levels start dropping see if infusion therapy will work for you. My pulmonologist swears that, although infusion isn't a cure, it certainly can diminish the damage to your lungs over time (if you are an appropriate candidate for it). Unfortunately, it doesn't help liver patients!
Stay healthy and keep your head up! Let me know how it goes on Friday!
Yes, I am a ZZ type, 19 level when it wa first checked. I do have prolastin, and trying to get home infusion. I did smoke on and off since I was 20, quit about 3 years ago and was dx 1 year ago when I complained my SOB didn't bounce back like I expected it to. I am a phd in science and never heard of alpha, so that was a shock all right. they are doing better now, but sheesh lousy PR for all those years don't you think?
I do avoid smoke and irritants. wont go to restaurant where there is smoking. had to give up my wood stove too. I had the house filled with thick smoke every time I fired that thing up first time in a winter.
A friend of mine is the poet tony hoagland. he has a line that goes something like, a beautiful woman wakes up and checks to see if her beauty is still there. a sick man wakes up and sees if he is still sick. strikes a chord with me. Keep up the great blog and I will let you know what happens too.
Wow -- It was a shock for a layman like myself, but for someone with your background, it must have really come out of the blue!
The PR is an issue -- That's the other reason for me writing this -- The more people who know about it and can recognize the symptoms, the better. If our Doctors won't learn about it themselves, let's all teach them!!!!!
I just looked up that poem -- It is fantastic, and pretty meaningful right now. I might just steal it (and give him appropriate credit) along the way here!
Again thanks for the support. Let me know about Friday -- You can either contact me here or at zzalpha@live.com
Surfric,
How did it go today? No pressure, just hoping for the best for you. If you prefer, you can email me at zzalpha@live.com instead of posting.
ZZ Mike
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