Guest guest Posted August 4, 2005 Report Share Posted August 4, 2005 I don't know of a cardio, but want you to know that you are in my thoughts and prayers. You must be so scared. I wish I could help in some way. Hugs, laurie > 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 4, 2005 Report Share Posted August 4, 2005 Hi , My girls and Anne J's son(s) are followed by Dr. Earing at Children's Hospital of Wisconsin. His specialty is young adult cardiology. Anne's sons definitely have cardiomyopathy associated with mitochondrial disease and my daughters are being monitored for it as they have MAJOR cardiac related issues. He trained under Dr. Whiteman at Mayo and was very knowledgeable of mito, the relationship of mito to cardiac dysfunction and appropriate treatment. He is also very aware of dysautonomia and it's treatment, etc (as my girls and Anne's son also have significant dysautonomia. My girls, Anne and I really like him. His judgement and management seems very good. You can reach him by calling and ask for the Heart Center. I believe he is on vacation until the 15th, but I'm not sure. My girls had appointments last week. has a followup on the 25th. LILQT4U1984@... wrote: 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 willing to travel as this is so urgent and pressing. Joanne Kocourek (mom to , lies, and ) visit us at: http://www.caringbridge.org/il/annakris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2005 Report Share Posted August 4, 2005 So sorry you're going through this , I hope you find a good doctor. My local cardiologist is pretty good, but not a mito specialist. Here are a few links you might find interesting: http://www.smartnutrition.info/idebenone/idebenone-research-10.htm http://www.ncbi.nlm.nih.gov/entrez/query.fcgi? cmd=Retrieve&db=PubMed&list_uids=11286379&dopt=Abstract http://utopia.knoware.nl/~wwitsel/main/artikelen/treatment.cardiomyopa thy.heart.failure.5.html (I have very low levels of taurine, one-tenth the normal low) This is interesting as well, have you been to Texas? http://www.texaschildrenshospital.org/Parents/TipsArticles/ArticleDisp lay.aspx?aid=1007 Finally, here is a link regarding Dr. Earing that Joanne mentioned (note the first item on his professional interests says " ADULT " ): http://www.chw.org/Applications/PPF/DocID/5883/CSG/1/CredentialingID/3 269/PhysHomePage.asp If you have a " mito doc " now, they might know who to go to. If I was in your situation, I'd probably call Dr. Shoffner's office (my muscle biopsy was done there) and ask them for a referral. Lots of luck, I hope you get the ball rolling on treating this soon... Take care, RH > 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 willing to travel as this is so urgent and pressing. > > > > > > Joanne Kocourek (mom to , lies, and ) > visit us at: http://www.caringbridge.org/il/annakris > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2005 Report Share Posted August 4, 2005 , I know from experience that Dr. Wertheimer at Albert Einstein Medical Center, HUP is very well versed in cardiology and Mito issues. He is an amazing doc. Let me know if you need contact information. Kristie _____ From: [mailto: ] On Behalf Of LILQT4U1984@... Sent: Thursday, August 04, 2005 8:08 AM To: tpnsupport ; Subject: heart failure 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 Thank you for sharing that with me. I will ask about the particular beta blockers you mentioned and see what my doc says. I'm still searching for the perfect cardio. Appreciate the help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 Thank you Kristie! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2005 Report Share Posted August 6, 2005 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 9, 2005 Report Share Posted August 9, 2005 Thank you for sharing this info with me . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2005 Report Share Posted August 9, 2005 --- , thank you for sharing this information. I looked at my results and my plasma taurine is very low. Interesting! I have a lot of the symptoms that can come with low levels of taurine. No wonder I crave foods with protein and do better on a high protein diet. I will have to point this out to my Dr. Thanks again, Dawn In , " madelungs " wrote: > 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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