Guest guest Posted August 4, 2005 Report Share Posted August 4, 2005 Hi , I'm sorry to hear your cardiomyopathy has hasn't improved. I will certainly keep you in my prayers. I am curious to know if your past cardiologists have discussed the possibility of using a defibrillator. I'm not sure about the use of debibrillators with mito, but I question it as my mom had an EF in the range of yours (20-25%). At one point her cardiologist told my brother that she had the weakest heart he had ever seen. She had a defibrillator implanted a little over two years ago and today her EF is normal. I know each situation is different, but I hope you find help from a doctor that understands the metabolic issues before determining that there is nothing else that they can do for you. I was impressed with Dr. (cardiologist at Scripps) but he gave my heart a clear bill of health, so I wasn't able to put him through the test of " fixing " anything. He does seem to have a good understanding of how mitochondrial issues can effect your heart. Take care, Maggie > Hi- > > As you know I have developed a severe cardiomyopathy over the last year. My > echo showed this last time that my EF has decreased from 40% to 20%. I've > become symptomatic since April with alot of shortness of breath, high resting heart > rate, tachycardia,etc. My cardiologist feels it's all caused by the mito and > that is can't be reversed or really treated. My PCP however feels it has to be > addressed and has just prescribed Lanoxin for me. He said that the Lanoxin > will help with symptoms but will not improve my heart or stop the progression of > the heart failure. I'm feeling scared as to what to do. I've been told I'm > not a candidate for either of the types of med's used for CHF (Beta Blockers, > Ace Inhibitors) as my blood pressure is very low. It was 76/48 at the doc and I > was nervous. Since I have POTS my BP completely bottoms out when I change > positions. I was wondering if any of you knew of a good cardio who would see me > that treats heart failure caused by and associated with mitochondrial disease. > I'm willing to travel as this is so urgent and pressing. > > Thanks so much! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2005 Report Share Posted August 5, 2005 Hi , I am just checking to see if you received my private email. Donna K ---- LILQT4U1984@... wrote: > Hi- > > As you know I have developed a severe cardiomyopathy over the last year. My > echo showed this last time that my EF has decreased from 40% to 20%. I've > become symptomatic since April with alot of shortness of breath, high resting heart > rate, tachycardia,etc. My cardiologist feels it's all caused by the mito and > that is can't be reversed or really treated. My PCP however feels it has to be > addressed and has just prescribed Lanoxin for me. He said that the Lanoxin > will help with symptoms but will not improve my heart or stop the progression of > the heart failure. I'm feeling scared as to what to do. I've been told I'm > not a candidate for either of the types of med's used for CHF (Beta Blockers, > Ace Inhibitors) as my blood pressure is very low. It was 76/48 at the doc and I > was nervous. Since I have POTS my BP completely bottoms out when I change > positions. I was wondering if any of you knew of a good cardio who would see me > that treats heart failure caused by and associated with mitochondrial disease. > I'm willing to travel as this is so urgent and pressing. > > Thanks so much! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2005 Report Share Posted August 5, 2005 To , I have POTS and I take a beta blocker. It seems to me that I remember once telling my doctor that I was concerned about taking a beta blocker for the tacycardia because they lower blood pressure and my blood pressure is already too low. I remember the doctor putting me on coregard at the time and telling me that it does lower high blood pressure but would not probably not normal or low blood pressure. It did not not lower my blood pressure which was already low. Now I take Sectral and it does not seem to lower my blood pressure. I am not a doctor. I don't know what a beta blocker would do to you, but I thought maybe you could at least ask the question about beta blockers . . . are there any that don't lower blood pressure that is already low? Also there are some meds that can help raise blood pressure. I am sure you are already probbly aware of this and most likely your doctors are, too. However, if I were you, I would shop around for a very talented cardiologist. By the way, the doctor who put me on sectral was a doc who specializes in blood pressure. He seemed to have a more detailed knowledge of the different beta blockers available. Good luck! Michigan Jan Re: heart failure Hi , I am just checking to see if you received my private email. Donna K ---- LILQT4U1984@... wrote: > Hi- > > As you know I have developed a severe cardiomyopathy over the last year. My > echo showed this last time that my EF has decreased from 40% to 20%. I've > become symptomatic since April with alot of shortness of breath, high resting heart > rate, tachycardia,etc. My cardiologist feels it's all caused by the mito and > that is can't be reversed or really treated. My PCP however feels it has to be > addressed and has just prescribed Lanoxin for me. He said that the Lanoxin > will help with symptoms but will not improve my heart or stop the progression of > the heart failure. I'm feeling scared as to what to do. I've been told I'm > not a candidate for either of the types of med's used for CHF (Beta Blockers, > Ace Inhibitors) as my blood pressure is very low. It was 76/48 at the doc and I > was nervous. Since I have POTS my BP completely bottoms out when I change > positions. I was wondering if any of you knew of a good cardio who would see me > that treats heart failure caused by and associated with mitochondrial disease. > I'm willing to travel as this is so urgent and pressing. > > Thanks so much! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 Hope some of our info helps you out, I think we all know that there's a lot of " legwork " involved with this disease, so many are eager to help anyone else to decrease their research. Take care, RH > RH- > > Thank you for the info and good links. I will save them and read thru > them this weekend. Thanks for taking the time to respond. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2005 Report Share Posted August 7, 2005 , I'm sad to read that you're having these problems right now. I'm dealing with a heart issue myself right now (pericarditis), among other things, so I know how it is to feel that sense of urgency. I read about lanoxin on rxlist.com, but the info was a little beyond my comprehension. I hope it helps in some way. If the doc suggests putting in some type of artifical device, I would definately consider it, if you feel you're up for it. I had a pacemaker put in last year, in case my pulse drops too low. I'm glad it's there, even though now my problem is tachycardia. I went to a specialized cardiologist/surgeon, who decided on the pacemaker. He is very talented. So if you can get to a more specialized doc/surgeon, that may be of some help. Just stay vigilant. It took a second ambulance trip to the hospital to convince the ER doc that I had a problem above and beyond mito, and anxiety. I now have to convince my cardiologist that the fluid is back, and I've decided that I'm not going to let him give me, it's just a mito thing, as a diagnosis. I know how discouraging it can be, but please don't give up the fight. Hugs, and take care, B > Hi- > > As you know I have developed a severe cardiomyopathy over the last year. My > echo showed this last time that my EF has decreased from 40% to 20%. I've > become symptomatic since April with alot of shortness of breath, high resting heart > rate, tachycardia,etc. My cardiologist feels it's all caused by the mito and > that is can't be reversed or really treated. My PCP however feels it has to be > addressed and has just prescribed Lanoxin for me. He said that the Lanoxin > will help with symptoms but will not improve my heart or stop the progression of > the heart failure. I'm feeling scared as to what to do. I've been told I'm > not a candidate for either of the types of med's used for CHF (Beta Blockers, > Ace Inhibitors) as my blood pressure is very low. It was 76/48 at the doc and I > was nervous. Since I have POTS my BP completely bottoms out when I change > positions. I was wondering if any of you knew of a good cardio who would see me > that treats heart failure caused by and associated with mitochondrial disease. > I'm willing to travel as this is so urgent and pressing. > > Thanks so much! > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2005 Report Share Posted August 8, 2005 For those with symptoms who have had a muscle biopsy...I just went through a scare with tachycardia. If you have this and no explanation has been found check your Taurine levels as Taurine is crucial for the proper function of heart muscle. If you've had a muscle biopsy your level for this should show up in your results! Good luck to everyone dealing with this! Quote Link to comment Share on other sites More sharing options...
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