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Nonischemic Cardiomyopathy/EF 20% with Extensive Nodular Infiltrates
by dawn66, Jun 20, 2008 07:37PM
Hello, I am 41 years old and 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 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 have starting making sure my affairs in order, He had told me that I am in stage III of heart failure. I can't find anything on the web to support his theory. do believe him? Should a dying person feel like they are dying? I have trouble breathing sometimes. I dont smoke/drink nothing.
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"
I thank you for your time in advance.
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 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 have starting making sure my affairs in order, He had told me that I am in stage III of heart failure. I can't find anything on the web to support his theory. do believe him? Should a dying person feel like they are dying? I have trouble breathing sometimes. I dont smoke/drink nothing.
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"
I thank you for your time in advance.
Post Comment
I'm so sorry you're still struggling with finding answers to your questions.... : (
Are you seeing a CHF specialist? That would be my suggestion. The larger hospitals have doctors that specialize in CHF and that may be the best place for you to get the best treatment (and answers). Is the Cleveland Clinic (Florida) close by? They have wonderful doctors who specialize in CHF. When my husband and I were looking for a specialist (in another field), I emailed the department and asked about a particular surgeon....He called us at HOME!!! My husband talked with him for 20-30 minutes. Another CCF called me at home when I was diagnosed with cardiomyopathy...He was trying to help me make some decisions.
As for sending the results of your broncosphy to Sloan Kettering, that's an excellent idea!
Take care Dawn and keep us posted.
connie