Heart Failure Support Group

Hi, I am 64 and just had three near fainting spells which sent me to the doctor and then I found out same as you have, how about that?! I was doing fine..now on coreg and I find my energy rather "fizzing" out at times. I pray this will get better. Let me tell you it was a shock. I went through my self-pity about a week ago and then I recovered, I know how, but will not go into that now.
I live in Indiana and, I too, once was a teacher then went into Social Work for the state. I have 3 children, all adults, one a singer in Nashville, TN, and my daughter now lives only 9/10 of a mile from us is moving July 11 to Indy, which is not far, however, I will miss her and my 4 year granddaughter. So, yes, I would like to correspond with you if you like. I will try to be upbeat. I write two columns, one for a local newspaper and one for a magazine online and do my "joy gifts" work as my minstry to Cancer patients.
Great to meet you!
God Bless,
Altalee

hi cdenny..welcome to the group..first..beware of what you read on the internet...not all is true..
be sure to do all of what your doctors tell you to do..my cardiologist told me that stress/worry is one of the biggest things to avoid..it can really play havoc with your heart and blood pressure...i was diagnosed with chemotherapy induced cardiomyopathy April 2008 with a EF(measurement of heart function) of 13-15..not a good prognosis either..i panicked as anyone would...i have two kids..one in college, one almost 17 in high school..i am their sole support also..my husband refused to just accept this prognosis..and i did finally agree to change cardiologists...i travel one hour to a new doctor because she put me on 5 different meds, explained everything to me..told me what to do for mild exercise..and i have made improvements..i do get tired..but i now LISTEN to my body..it is in charge..i need to be here for a long time for my kids..so i have to live with this..my EF is close to normal..i am not cured..but for rite now i am living with heart failure..i have had to let my family take over many things at home..i cannot work...i walk a fine line with my meds to keep me functioning where i am at..
if you want my email..its Re0630@aol.com..feel free to write..it is good to have support with this..some days the weight of it will bring you down..other days you know it is a gift to be alive...i have not written on this board for a bit.i have been battling bronchitis this spring and it is finally over...no more antibiotics..etc..but please is you wish...email..know that there are many people with the same battles and the same emotions that are willing to share with you...
stay strong
marie

welcome to the group. be encouraged by this group i have been. my ef was 10% when i was diagnosed in january. i am 50 my youngest is 20 & at home w/me in & out of school, i am also a single parent. i was very scared i would be leaving him & i don't think he could deal with it. i took my meds as prescribed, made all of my doctor appts & many test & the last test in may a Muga scan to determine if i needed an icd implanted came back that my ef is now 47%. i am so overjoyed. it shows that the meds work & also a low or no salt diet is one of the biggest factors. fortunately i am still able to work. i am all i have to depend on & i hear it can take years to get disablility.

Hi, I appreciate your replies a lot. I do have a couple of questions. What exactly does EF stand for? How often do you get monitored to see how your heart function is and if you are improving? How do they monitor it? By an echo? It is good to know there are others going through the same things I am. I am worried a lot about returning to work. I am exhausted now. It is really exhausting to work with 20 first graders everyday but I don't have any other options at this point.

Thanks,
Cheryl

ejection fraction is the percent that your heart is pumping blood throughout your body. i was told by my doctor normal is 55 to 75%.

i can imagine those 20 1st graders making anyone tired. everything doesn't happen the same for everyone but i feel i went from one end of the spectrum to the other. i could barely walk from my car to inside my house & i am practically at the door when i park. when i was in walmart i had to make sure to get a cart to have something to lean on. i can now walk all over walmart. i believe your tiredness will improve w/meds as mine did. i also have to stress the salt reduction in your diet due to it holds fluid & that is really a bad thing for chf patients. i don't cook w/any salt & i read labels on everything for the sodium content.

it has only been 6 months for me & i had an echo in feb then again in may. after the echo i had a muga scan which is supposed to be more precise. my doctor was thinking that i would need an icd (implantable cardiac defribrillator) so he wanted to make sure about my numbers if it was under 35% i would have needed it. it was because of the heart failure & cad (coronary artery disease). you may not have that.

i must admit i still a little scared to do anything that i think will take a lot of energy. i keep my 3 grandkids sometimes & i do fine with them for a day.

Thanks! I see my GP doctor in about an hour... so I have been thinking about questions I have. Okay, so I hear you on omitting salt from my diet because of the retention. My logic would say, won't the lasix take care of that? I find for myself, being a teacher, education is everything. If I understand reasons why, then I will follow with more vigilance. Stupid, huh? I should just listen, which I do plan on doing, but I still want to understand the why. So, I guess my EF is 30%, so that is not as bad as it could be. Many people on this site start in a much worse state. I guess I should not push myself. Maybe by August my energy levels will improve and my EF will increase. I did just finish the school year in my current condition, it was hard -- and I do wonder how good it is to push myself when I am so exhausted. I'm sorry... I am rambling, trying to sort this all out in my head and come to terms with it all...

Thanks for your help, friendship, support!!!! TONS

you are welcome. glad i can help. i was just like you trying to absorb as much info as possible. the goal is not to use lasix or to use as little as possible. the medicine does work but you have to help the medicine.

Welcome to the site you probably wish you didn't have to join. I am a 34 year old school administrator and have been dealing with CHF since March. You are right that your EF could be worse, but please don't think you are in the clear--30% is still low (25% is considered the "critical" or "severe" range from what I understand). I was at 25% in March, and am now up to 36% thanks to an aggressive dose of several meds and a low sodium diet (the lasix doesn't take care of it all--most people still have to watch the sodium as well).
You are very fortunate to have the next 2 months off. Resting and being away from the stress of the classroom should do a lot for increasing your heart function.
Take care and never be afraid to ask--I have found this site very helpful and supportive through it all!
:o)
--Jessy

I have one more question.... always more questions. My cardiologist order a 24 hr heart monitor... does anyone know how that will help and what information he will get from this? I have had one before and thought it just showed the arrhythmias.

I want to add my 2 cents as encouragement to all. I'm a 71 yr old widow with no kids. I was diagnosed with CHF in 2003 with a EF of 16-20. With Coreg, Lasix, a handicapped parking permit, and a "SportSeat" cane-chair I have survived, taken a trip around the world by myself in 2008(no cruise or tour), followed Robbie Knievel's crew hither and yon (was even in the background of a couple of his tv shows), and have driven alone several times to Alaska and half the other states.
Last year the EF was 50%, this year the right side is down to 40%, but at my age and length of diagnosed time, that's not too bad.
(and that was before I dscovered that you should not take Coreg or Carvedilol within 3 hours of calcium). Since I started timing the meds I'm feeling stronger.
I think of the shortness of breath as an early warning sign of over-doing it. as a good signal, not a bad sign. Sit and rest and then take it a bit easier. It may mean never doing long walks (wheelchair in Airports) or carrying a cane so I can sit down when necessary, but even so, quality of life is a lot better than none. And, I do not watch my salt intake--much. I like bacon! but I do use the low-sodium microwavable so I think I'm doing a bit.