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514586 tn?1211451717

Bilateral Nodular Infiltrates

In 2006, I was diagnosed with NonIschemic Cardiomyopathy. My EF was 70%, Now in
1-08 it was 35% and in March of this year it was 20%.  I feel myself slipping fast now, meaning I am tired all the time, my get up and go has got up and went??    I had a defibulator put in on 3-20-8.  I am a widower and I have two small children both under 4 years old.  

I am currently a Law Enforcment Officer in Florida.

I am currently taking coreg 100mg, enalapril, furosemide and lasik,  I can't seem to get a straight answer as to what I can expect in terms of living?  It's a difficult subject few will approach/talk w/me about. I want to know how long i can expect to live or a time frame.

I also was told i had lung cancer from enviromental causes, years of overseeing a construction site as a superintendant.  I was told I have extensive nodualar infiltrates  (masses on both lungs).  severe lung damage.  The heart doctor said it was not CANCER, but the Pulminary Dr. said it was CANCER.  He said he was a specialist in his field as the cardiologist was a specialist in his.

I am going to have another bronscopy done and then have it sent to the SloanKetteringCancerInstitute for a second opinion. They said they could not consider a heart transplant because of my damaged lungs.  i just need help in someone directing me to a website or something so i can determine what all I need to do.  

Obviously I dont want to die.   I am not scared of dying, i am scared i w/die unprepared for my children.  if you could find it in your heart to help my heart be put to ease, i would be forever greatful.  My mother died when she was 42 of CHF.  my mom always told me

                     "Don't be afraid that your life will end, be afraid that it will never begin"


2 Responses
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242588 tn?1224271700
MEDICAL PROFESSIONAL
You state, I can't seem to get a straight answer as to what I can expect in terms of living?

The first thing you must do is to find a way to get detailed, accurate information about the cardiomyopathy and the alleged lung cancer.  The nodules may not be cancer.  In fact they could be an infection with an infectious organism that might also be capable of damaging your heart; for example, a fungus called Histoplasmosis.  If a biopsy was performed by the pulmonologist, at the time he concluded that you had lung cancer, ask exactly what it showed and request that it be sent to Sloane Kettering.  You may not need to have another bronchoscopy and biopsy.  If a biopsy was done and deemed unsatisfactory for diagnosis, have it sent anyway.

If the biopsy was done and truly was non-diagnostic, you should not have another bronchoscopy with biopsy performed, at least not by the same pulmonary specialist.  If another biopsy needs to be done, if Sloane Kettering declares the first to be non-diagnostic, you should probably have what is called an open biopsy.  Both for this and for interpretation of the current x-ray and other evidence, you may want to ask for a second opinion from a pulmonary specialist, not professionally related to the first pulmonary specialist.

Then, if you still have confidence in the cardiologist, you must request an appointment for discussion of your prognosis and your options and if cardiac transplantation is an option.  Most major university medical centers have a transplant group.  You should make contact with that group, with or without your cardiologist's assistance, and find out if they would evaluate you to determine if you might be a candidate for a transplanted heart.

We believe what you say, that you are not afraid of dying but you should do whatever is necessary to stay alive.  That means working with doctors who will give you straight answers and who will be your advocate in working your way through a medical system that could possibly save your life.  This is no time to be concerned with hurting your current doctors' feelings.

Good luck.
Helpful - 2
514586 tn?1211451717
Wow.........you are one of the only people that I have talked to that feel as I have felt.......I am having another biopsy done in early July and having it sent to sloankettering for their second opinion.  I was already told that i would not be a candidate for a heart transplant because my lungs were so badly damaged.  i would need both  heart/lung and the survival rate was very grim.........I THANK YOU FROM THE BOTTOM OF MY HEART FOR ALL YOU HELP AND WISDOM.......I AM THE ONE WHO IS ASKING ALL THE QUESTIONS AND SOME OF THE DRS SEEM TO BE UPSET THAT I WONT JUST EXCEPT IT AND DIE....I DONT UNDERSTAND THEIR BEHAVIOR........GOD BLESS AND I WILL DO WHAT YOU SAID
Helpful - 1

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