Cruisin with the Real"s

Cruisin with the Real"s
Joe and Nancy Grand Cayman 10-07

Loma Linda Medical Center

Loma Linda Medical Center
Where the magic happens........

Friday, December 7, 2007

This is from a yahoo liver transplant group that I belong to...

The author gave permission for me to reprint it here. I think it sums up what anyone with a disease that has a similar prognosis feels but especially those of us with cirrhosis facing transplant can feel. I know I related entirely even though I sound *cheery* here.

When someone is diagnosed with cirrhosis, they may not even know what it is. They may not have any symptoms at first, either. They feel well and don't see why the doctor is so concerned. Many are diagnosed because the doctor was trying to have tests done for another problem and it happened to show up during that time. The patient needs to be informed of the seriousness of this diagnosis. How it is going to effect him/her in the future and what treatment is appropriate for them and what they can do to help reverse this disease, if possible.The problem is, that many people are not completely informed of all this and they leave the doctors office with more questions than when they first entered.The patient now is on a journey that he will travel mostly alone.Though, other may be around them, no one feels the horror or the pain and anguish but the patient themselves. And, to top it all off, the emotions that go along with finding out that you may die cannot be described completely in words. The unknowns ahead and the loss of privacy, self worth, and being able to handle everything yourself has just disappeared. You are now a specimen in a dish and whenever someone wants to stuff you will chemicals or poke at you with instruments...they have to have the right under the pretense that they are trying to help you. You ask yourself when you stop being human and start to be added to statistics. Suddenly, you find yourself studying up on a disease which you normally had no interest in all in. You search for ways to prevent further damage and look for miracles. You try to deny that anything is wrong, cause you don't want your life as you once knew it to change. You may become mad in the process of it all and ask why it was you when so many others have done things worse and never had to suffer. Or you are a victim of it all, where you have lead a very clean and healthy existence and then receive a blow like this.So caregivers, do you know what your patient is facing, Really?(1) If someone said to you that you were going to die tomorrow and it was definite...what would go through your mind?I won't have a chance to see my children grow up. People here rely on me to take care of them and now I am being forced to leave them and I worry about it. I never got to do the things in my life I always wanted to do. I never got a chance to really take the time to be with those I love the most and say the things I needed to say. I will never finish the things I once started and they will never get done.(2) Would you have regrets? The things in this life doesn't seem as important to me as they once did...after all, we have all heard the saying you cannot take it with you. I spent too much of my time worrying about little things and things we could have than I did with spending time with those I love and now it is too late. How can I undo all the wrongs I have done?(3) Would you feel like a burden? I no longer can handle the things I once did and now others have to do everything for me. Won't they get resentful that I am taking up most of their time and they would have a better life if I wasn't here.The patient can feel very much alone. They can start to see life much more clearly than the person who is well, as they see what really is important. They know that others are doing for them and that they have not only loss their independence but are now treated like they have no say in anything at all. They can become extremely depressed and tired.However, everyday they face the pain, face the changes of their someone is playing a bad joke on them, face the anguish of seeing the pity in others eyes, face the torture that the disease is not getting any better as time goes on.Though, this post can depress not only those who are caregivers, but also the patient themselves....Both the patient and the caregivers need to know what is in the minds and hearts of those who go through this.This way they come to be more understanding, compassionate, and more caring. This however is a Journey...and a true learning experience.Someday, those who are caregivers now may become the patient.We all have a time to share and help others, and others have the time to share and help us. Through open communication, the journey is not taken alone, but with those who love us the most.

Sorry that it all runs together but I just cut and pasted from the original author and didn't want to change anything....

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