anyone every hear of preload failure?

[3kidsincollege]

Hello, After 10 years of trying to get an answer, I finally got a diagnosis of cardiac preload failure, low VO2max, and decreased AT. I have shortness of breath, palpitations/heart racing, chest pains, fatigue, lightheaded.  Many many echos--three with bubbles.  A PFO showed up on one. Normal cardiac cath--they couldn't see the PFO during the cath. Normal EKGs. Halters normal except for mild sinus tachycardia. Many pulmonary tests--all normal.  I have MVP with trace regurgitation. I have had two Level III cardio pulmonary stress tests--both of which confirmed the cardiac preload failure diagnosis.  Can't count the number of cardiologists, pulmonologists that I've seen.  They all agree that the PFO and MVP aren't the cause or aren't related.  Tilt table showed mild supine hypertension. Have been to rheumatologists, endocronoligsts and neurologists to rule out the usual.  Also had a muscle biopsy to rule out mitochondrial disease.  I have been on calcium channel blockers, several beta blockers (severe reaction to those), nitro, flurinef, midodrine. Many in combination with each other and in combination with exercise programs.  Two with a personal trainers while on flurinef and midodrine. Cardiac rehab while on flurinef and midodrine. Compression hose. Nothing has worked.  Doctors and Mt Sinai, MGH and Brigham and Womens' in Boston haved given up on me.  They won't see me at Mayo Clinic because they said I am 'too complicated'.  (Isn't that why people go there?)

I am 58 yo female in otherwise good health. No family history of heart disease.  I have always had a low energy level but in the last 15-20 years it has become increasingly worse to the point that I may have to give up my job. I can't afford to retire right now. Do I have any hope? .

[Pfromm]

I also have preload failure. After many tests and pre-syncope episodes I was diagnosed at Brigham and Women's thru a CPET test. Dr. Barbara Cockrill is my doc and is wonderful. I have been on Mestinon for 2 years now. Worth looking in to. Good luck. I know how
Discouraging it can get. Take care.
Pfromm

[Relief53188]

I agree, Dr. Systrom and Dr. Waxman are amazing at BWH! They helped me with this very problem after suffering for years with Vasovagal Syncope episodes and many other terrible symptoms.

[fedup663]

If you are close to the Boston area go to see Dr. Systrom at Brigham and Womans Hospital. He is the best for htis and will give to the time you  need,

[grendslori]

I do not believe you are looking for sympathy; I believe you must be very frustrated. I took it that in one of your posts, you had only tried doing what you were doing a few times, this post says you were really trying to make a go with it. I'll be honest with you; I think your doctor stepped into the middle of what happened, either by talking to the Mayo Clinic himself or by what he wrote in your records. I have seen this happen before a few times and generally it's the primary doctor speaking directly to the accepting hospital or it happened as a result of what was written in the records, which sometimes are NOT accurate. Have you read through your ENTIRE records? Do YOU fax the papers, or did your doctor's office fax the papers for you? Something happened in the interm from the time you spoke to the Mayo Clinic and your doctor's papers arriving and being reviewed. Now having said that, it is possible that thee type of heart issues they deal with there, may not be the type of issue that you have and that they feel you would be better served at a different facility, that could be and in that case you are back to being nowhere.  I have dealt with enough years both working in the medical world as well as having a daughter dying from heart disease to know something isn't right here. How do you feel about starting off with a clean slate? A new doctor and cardiologist who have ABSOLUTELY NOTHING to do with your present doctors; who also do not work at the same hospital; go to a different city for treatment if that is what it takes. Give no previous names for doctors as many know each other, even in different cities. You may tell them that you have a diagnosis but there is conflicting information and you really need a totally impartial re-evaluation. I don't know where you live but if it's possible try getting into the Texas Heart Institue or the Cleveland Clinic. My daughter is followed by the doctors at the CVC (Cardiovascular Center) at the University of Michigan. That is really a top center as well. We've also been to the National Institute of Health in Maryland. You may need a doctor's referral to get into the NIH.
They do a lot of research there and if this is a 'new' disorder, that may be the place for you to go. Start considering your Universities as a place to get help as they see patients from all over, many of them from around the world, I've already mentioned the University of Michigan, there's the University of Pennsylvania, Stanford University in California, University of Texas Health Science Center in San Antonio and Dallas,  Duke University is in North or South Carolina (we've been there, but I don't remember which state it was in) See is you write in the google search for: "medical articles written on Preload Failure". Look up the doctor' s names on who wrote the articles and find out where they practice medicine. That's another option. University Medical Centers are all teaching facilities, it would be absurd to think they would not want to treat you and in turn use you to teach new, medical students and doctors. You asked if my daughter ever got an answer; yes, she did. Her pacemaker was set at an odd level: 80-100 beats per minute. When I moved back home with her; the EP doctor we saw thought that the Air Force doctor who set those peramaters was nuts because the normal heart beats from 60 to 120 bpm. We tried to tell him that the lower settings were what she needed because of the muscle disease; he refused to listen to us and did as he pleased. He put a Holter on her for the weekend and sent us home. As a result of that, she was having angina even before we left the hospital that day and after one of her worst weekends, the monitor came off and was read. I got a call from the doctor saying the origional perameters needed to be put back in place, that he could have killed her as a result of what he had done and then as an afterthought: " I'll understand if you never want to see me again with your daughter, but I am the only EP within drivable distance." !! He thought all AF doctors were inadequate, even when I told him her AF doctor had graduated from U of M. Keep us posted on how things are going for you.  

[3kidsincollege]

Not looking for sympathy-looking for answers.

[3kidsincollege]

Thanks again Grends. I called Mayo's cardiac unit and told them my situation and that I'd be an out of town patient. They asked me to fax them my records and that they'd call me with doctor who best help.  They never called. I called them and they said that they couldn't help--that my situation was too complicated.  It's very discouraging when your hear that from a place like Mayo.  I thought that perhaps I heard wrong or got someone who was having a bad day. I wrote a letter asking for a review or explanation. No one ever replied.

Yes, I tried the fluids/exercise for a while.  I gave it a real chance--a few different regimens--each time several weeks. Each time I could never get past a certain minute/distance mark. I truly gave it an ernest effort because I wanted more than anything for it to work.

One of my reactions was probably similar to your daughters.  I tried metoprolol and then again another drug that I learned later was from the same family of drugs.  I had a horrible reaction. My heart raced (exact opposite reaction that was expected), my blood pressure when up to 190+, I shook, had a whopper of a headache and was nauseous. That lasted two days after I came off the drug. Your electric system/muscle sytem theory makes sense. I'm sure the drug may have aggravated my underlying cause--whatever that is.  

Did your daughter ever get an answer? Where did you find the answer?

[grendslori]

Who told you that the Mayo Clinic won't see you? That doesn't make a lot of sense to me. People come from all over the world to the Mayo clinci who suffer from several different health issues. You seem to be only suffering from one. Is it you regular doctor telling you this or have you called the Mayo Clinic yourself? If you haven't, I would certainly call them. While the internet is not always the best place to research medical issues, if you look up preload, there is a ton of information on it as well as it's causes and how to make it better. Why would the Mayo Clinic turn you down? There is also the Cleveland Clinic you could try. The Texas Heart Institute in Houston is another facility you might want to consider. One thing I learned years ago was the reason someone becomes complicated in medicine is because they have several different systemic issues going on where treating one issue adversely affects the other so for an example: say someone has a severe muscle disease of the heart as well as a severe problem with the electrical system of the heart. The doctor tries to treat the muscle disease only to end up messing up the electrical system or he tries to work the opposite and it all backfires. This is something that actually happened to my own daughter. The doctor is left not knowing how to treat one problem without messing up the other; that's when things get  really complicated. When patients get complicated like this, it's places like the  Mayo Clinic that actually WANT them as patients because they want to learn from these patients. One of the things I learned when my daughter was young was that some hospitals actually have floors or wings that are research floors, designed to place patients for teaching purposes and for research. You said that you only did the fluid increase and/or exercise regiment a few times; a few times isn't going to help you much. Why did you not continue on with this?  

[3kidsincollege]

Thanks grends.  Cardiomyopathy has been ruled out.  Everything has been ruled out. It is definitely preload failure.  Preload failure is rare and almost always responds to fluid increase and/or an exercise regimen.  I tried all of that a few times.  It's amazing to see what doctors will do to get you out of their office when they don't know what to do with you.  Some will still try to tell you it's in your head when they have the results of the test showing the diagnosis and the test results of the repeat test a year later confirming the same.  Others will just send you off to another specialist because they need to know the underlying cause.  I don't care about the cause anymore--I just want to feel better.  I need a doctor who will take a chance on me.  Resynchronization can improve cardiac overload.  It has never been tried on underload.  If they just reverse the algorithms, I may be able to get my life back.  No one wants to try it.  

Thank you for listening.

[grendslori]

Have you been given a diagnosis of Hypertrophic Cardiomyopathy?

[vienna13]

Maybe it is up to you. You should revisit your healthy lifestyle plan. Do you do everything with your power to get better? Don’t wait all from the doctors. They did all they could, now it is your turn to do all you can!!

Happy New Year to You!!