Archive of "All Types of Cardiomyopathy"

Now is the time to call and go to the appointment for the transplant.  Don’t  think of all the what bad what-if’s and doom and gloom.  Go into it with a  positive attitude and can do attitude.  They will be evaluating your mental plus  physical attitude.    Which hospital will you be referred to?    I speak with knowledge about this subject, I had my initial evaluation in June  2006 and the road has been bumpy, sometimes so bumpy it feels as if your teeth  are being yanked out through your butt (sorry I get rather descriptive).   Besides a support system at home I have found a mentor is a great thing to have  also.  I got lucky, I met my mentor on line and we have developed a very close  and wonderful friendship.  Bill was transplanted 5 years ago at the same  hospital I will be, while technology ha drastically changed, he has been able to  get me through a lot of big bumps.    So if you need a mentor I’m open for the job and will do everything I can do to  help you through this.  Just write and let me know if you want my help.    By The Way – You have every reason to be stressed.  I have been diagnosed with  depression and Bi-Polar Disorder and with all the has happened I have picked up  a whopping case of anxiety, drugs really work.  Do not be afraid to ask for  chemical help, it beats the heck out of uncontrollable crying sessions.    Good Luck and Remember I am here if you need someone who has been down a very  bumpy road

- Bob

If you haven’t already gotten a second opinion, I would strongly advise  that you go find a cardiomyopathy expert.    General cardiologist can do the by-the-book treatments, but if you appear  to be headed for a transplant, I think you should be as aggressive as  possible in finding those with a lot of experience in this specific  area.  Most of the major heart transplant centers also have cardiomyopathy  centers, so perhaps the referral to the transplant center would be a good  thing…

-Mark

Toprol XL and Lisinopril is what i have been on for almost 2 years..my Ef went  from 27% to 48%. I have my next muga in January and if it is the same or better  he will reduce my dosage

Hi I am a little stressed and down in the dumps. I am 35 and dx with  dilated cardiomyopathy 4 years ago. Well 6 months ago my ef dropped  to 27% amd i got a defibulator. I just had a muga last week and 6  months later and upping my coreg and cozarr double and to the max my  EF has dropped to 14%  My doc is now sending a refferal to another hosp for a evaluation  for a heart transplant. Im worried to get denied cause im over  weight and i have a nuero disease Friedreich’s ataxia (however I am  still walking and the FA is not that advanced) just the dang heart.  All he said to me was while i wait for appt just continue to take  coreg and my other meds etc.  My question was the coreg must not be doing what we want or i would  not have had that HUGE decline in just 6 months (even after doubling  dose)  I was thinking of calling tomorrow and asking what if i did a  medicine change?  Maybe my body is  used to the meds im taking and if i switch it up  maybe i will get better results. What do you all think of that?  Like maybe i think its called Tropal or something like that?  I dont know but im up for suggestions? anyone?

I am alone, and hope to find someone who has cardiomyopathy/CHF to chat  with. I’m a single, gay man who has become very isolated as a result of  my medical probems. Recently I’ve found the only was I can function is  with anti-depressants and zanax. Is there anyone out there who can  relate to me?

I chat here once in a while. I was diagnoised in Feb 2004 and have  been on meds too. Let me know when you’d like to chat.

I was diagnosed with IDCM in nov of 99.Have been on maeds ever  since,and continue to work a full time job.Ef was 27% now at 36% with  muga scan to be done again(once a year)in Dec or Jan.      Hope I can get more information as I understand the prognosis  varies person to person.Do you have chat here?I chat at webmd on Mon  and Fri nites and it has been great but no one there has DCM or sim..

Hi all.. is anyone here on an ARB because they can’t tolerate the side effects  of the ACE inhibitors like dry cough? The doc switched my husband to one today  and I was wondering if the benefits of being on it are the same as being on an  ACE inhibitor. Everything I am reading says to take ACE inhibitors for maximum  benefits.

Thanks