shortness of breath related to tetrology of fallot

I'm 34 and was born with Tetrology of Fallot. I have a difibulator because of a right bundle branch blockage from scar tissue from previous surgery. In June I had a wreck that tore my difib. from its muscle pouch, & the following problems started slowly from there. For the past 10 weeks I have had severe fatigue, shortness of breath & muscle weekness. I have no muscle or nerve disease. My heart function ejection fraction is 40%, pulmonary pressure is 31,I have mild obstructive lung disease, and have mild sleep apnea(c-pap pressure set on 5. I am taking 150mg of wellbutrn. Yesterday I started taking asmanex 220mcg 1Xdaily, Xopenex 2Xdaily & as needed,& Zanex .25mg 1/2pill 2Xdaily. Doctors say that my breathing & fatigue shouldnt be as bad as I describe. I don't know what to think.  Ive always been a tough girl, non-stop & full of life. My quality of life has diminished severly. Should I seek a Cardiologist who specializes in PH? Are there food diets & or exercise that will help? I'm scared to push myself in fear of overexersion of my heart & not enough for my physical well being.  My doctors said that they are going to leave that up to me & I dont know what to do. I feel like a ping-pong lab rat from doctor to doctor.  If I was your sister, what would you recommend?  Thank you for your time.

[tofheart]

i am 46 year old woman, and had several repairs of my tof.  i also have a defibrillator in fact this is my 4th.  i also have problems with my lungs.  my lung dr says it is asthma and slight emphysemia.  i have shortness of breath and tiredness that  does not seem to be helped much with the asthma meds.  i am wondering if there is something else going on that the drs have not found yet.  is there somehting that tof does to damage the lungs? they tell me not to worry. i also have been very active until this last few years.  it is very frustrating.