sounds like your boat is in some rough waters. i don't have any specific answers, but I hope you have some good physicians (cardiologists specifically) managing your case. worrying about the long term heart stuff, or even day to day is pretty scary and can wear you down fast. there are some people going through some tough stuff on the forum that can empathize with you (me being one).
talk with your docs. if you think you need some mental support, talk to your cardiologist and see if they have cardiac councelors to help you out on the support side of what's going on with your heart. large tertiary care hospitals have such people.
It's very early in the game for you. It is NOT the beginning of the end! I also have dilated non-ischemic cardiomyopathy. I was diagnosed June, 2002, with an EF of 15%, and told I would probably need a transplant eventually. Very gradually, on the proper drugs and with following a very strict low sodium diet and regular exercise, my EF rose to 55% by 2005. I am now at 40% but that is enough! And I understand that I could go on for another 10 years like this. Of course the converse is also true but I don't dwell on that. Just live one day at a time and be grateful that drugs like Coreg have been developed. The important thing is how you feel, not the numbers. I barely glance at the numbers now. My right atrium and right ventricle have had enlargements at times and not at others, with reduced function. My left atrium and left ventricle remain as large as they were at diagnosis. I also have diastolic dysfunction. Overall my valves' regurgitation has diminished with time. It is important to keep a positive attitude and I know how difficult it is to do that! But it CAN be done. Just look at me as a success story.....you can be one too! You have to qualify for a bi-v pacer anyway, and be maxed out on the proper drugs. I have never had a bundle branch block so I don't qualify. Make sure you get an agressive cardiologist who deals regularly with heart failure patients. Go to chfpatients.com and read all the info to be as informed as you can. Weigh yourself every morning. Go to the gym as often as you can, and work your way up gradually, of course with your doctor's permission. Good luck!
Thank you so much for commenting. I do think that I need support and I also told my doctor that I was extremely depressed over this and so he prescribed me Ambien to help me sleep at night, but said he felt my depression was situational. Uhhhhh yes....but is it going to go away soon? I am having difficulty with this, that's for certain.
Tell me about your situation...
Thank you Maggie, for bringing me a ray of light. I was told NOT to exercise because my heart couldn't handle it right now. Is that because I'm only 4 months in? I have of course started a diet and have lost 15 pounds but I certainly need to loose more. I was also told that I could have had this thing for up to 7 years but it only exacerbated now. I have had a left bundle branch block since I was 32 but the cardiologist never mentioned that as a factor, he only said that you have to be on the meds for a time period and the ejection fraction has to be at 35% where my actual is 37%. I am tired all of the time and if I do anything that has to do with walking or stairs, forget about it, I huff and I puff until I feel like I'm going to pass out. I think mostly that it frightens me about how fast the changes are occurring. I will read up on the CHF link you've given me and again, "Thank you".
wow, that doc is brilliant--situational depression! no kidding, it's natural to be worried about your heart, especially with complex cases. i'm sorry to hear about your problems--it's a tough situation i'm sure.
i have 3 vessel CAD & a stent, and some underlying electrical issues that we are still sorting out. i've developed some problems with my valves. my heart beat has become increasingly painful, a stab or tearing pain with each beat. i share a concern about a heart virus--i had a very bad cold in december which took about 3 weeks to clear up, and i've become increasingly fatigued. i have an extensive series of tests coming up in a couple weeks to check this stuff out.
heart stuff is not fun. when each beat reminds you of a problem it's irritating to say the least. most cardiologists don't understand what heart pain feels like and the issues they cause, as they most likely haven't had that type of pain themselves. i too have difficulty sleeping (heart) and take ambien.
My goodness, you are going through alot!!! You know while I had the cold for over 6 weeks, I kept going back to my doctor and telling her I felt worse and she'd give me another antibiotic that didn't work and then she'd give me shots that didn't work and so on and so on, until finally, MY BOSS, said to me, "why don't you go see someone else?" and since I was new in town I didn't know anyone else. This was the doctor my sister and my brother and everyone else we knew were seeing. So my boss suggested I give her doctor a call, but this doctor wouldn't take just anybody, she actually did a prelimonary phone interview before she decides to take you. So I made the call when I was told and answered her questions, by the time the phone interview was over, she asked me to come right away to her office. Wow! That was impressive, so I left work and went straight there and it wasn't until she wrote a bunch of things down in my chart did she look at me, but when she did, she stared me straight in the eyes and said "take a deep breath" and as soon as I did, she replied "oh my", and within 2 seconds, she was having an EKG done, blood drawn and as soon as the EKG was done, she was calling for a STAT Echo, and as soon as that was done she sent me straight to the hospital where I went in for the cardiac cath. This lady doctor was the best thing that happened to me. She said, had I kept going at the pace I was trying to keep, I would have collapsed and god forbid it could have been while driving and kill someone. From there she got me my cardiologist who has a wonderful bedside manner and I do like him but as you say with the "situational depression", who wouldn''t have it? I'm still frightened!
Just over last night I put on 4 pounds which is exactly what they tell me to watch out for so I had to start my lasix again. So my mind says, ok, it's starting up again. This up and down cycle that completely takes the wind out of me. The cycle where one day I feel like they have made a mistake because I feel so good today and so I can clean house, to only be reminded that, oh no you don't, because for 3 days afterwards, I'm down for the count. My face has become so dry that when I smile, I feel the skin pull unbelievably and I think it's going to tear. I read about the dry skin with CHF patients but now I'm experiencing it.
I'm so sorry to hear about all your things Al. I don't know much about all of it but I'll certainly be here as a friend to help! If you've had the cold that long and are concerned about that, they should certainly look into it! I had NEVER heard of it before until I had it.
Take care of yourself!