DEAR SISTERS. A QUICK RECAP FOR YOU. I WAS DIAGNOSED IN 2006 WITH HEART DISEASE. SINCE THEN I HAVE HAD SIX STENTS PLUS AS RECENT AS MARCH I HAD FIVE WAY BYPASS. STRONG FAMILY HISTORY OF HEART DISEASE! THE PROBLEM I ALWAYS HAD WAS HOW I FELT. MY TESTS(ALL HEART) SHOW NORMAL. THE DRS HAVE TOLD ME THAT A FEW PEOPLE HAVE THIS. IT IS WORRISOME. THE FIRST THING DRS WOULD SAY IS "ALL TESTS ARE NORMAL". MY DOCTORS IN VIRGINIA AND NORTH CAROLINA CAME TO KNOW THIS WHICH MADE IT SIMPLE WHEN I FELT "NOT RIGHT" OR SHORT OF BREATH. IN MAY MOVED TO FLORIDA TO BE CLOSER TO MAYO. I HAVE ALWAYS RESPECTED MAYO CLINIC. I STARTED HAVING SHORTNESS AGAIN AT THE SMALLEST TASK. WENT TO MY CARDIOLOGIST HERE AND HE OF COURSE RAN ALL THE "TESTS". I OBTAINED MY RESULTS TO REVIEW BEFORE GOING TO SEE HIM FOR RESULTS. THE REPORT (ECHO) SHOWED THAT THE LEFT VENTRICULAR CHAMBER HAS DECREASED IN SIZED SINCE MAY(WHEN I WENT THROUGH MY INITITAL TESTING WITH HIM). MY VALVES HAVE MINIMUL REGURGITATION AT THIS POINT. AT MY VIST WITH HIM HE WAS JUST PUZZLED AT MY COMPLAINTS BECAUSE ALL MY TESTS APPEAR NORMAL IN HIS OPINION. I ASKED ABOUT THE CHAMBER, HIS COMMENT"NOTHING TO WORRY ABOUT " THE VALVES, THAT HE CONSIDERS MINIMUM REGURGITATION ISN'T ANYTHING TO WORRY ABOUT. I DO SUFFER FROM DEPRESSION, WHICH IS WORSENING FROM THE ANXIETY. I LEFT THERE THINKING I AM JUST CRAZY, BUT MY GUT TELLS ME... NO THIS IS YOUR LIFE, NOT A DOCTORS THAT THINKS HES A " GREAT DOCTOR'. SISTERS, I NEED SOME HELP HERE. DO I SEEK ANOTHER OPINION? MY RESEARCH SHOWS THAT CHAMBER SIZE IS AN INDICATION OF CONGESTIVE HEART FAILURE PROBABILITY? I AM CURRENTLY 52, NOTHING IN MY LAST FOUR YEARS HAS BEEN "NORMAL" WHEN IT COMES TO MY HEART. ANYONE EXPERIENCED THIS, OR AM I "LOONEY"?
DIANNE
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AT WHAT POINT TO SEEK ANOTHER DOCTOR
- By jacksvern
- Posted October 8, 2009 at 10:35 am · 14 replies
- In My heart disease - diagnosis and symptoms
- Shared with the public
Explore topics in this discussion:
Exercise Cancer Heart transplant Heart failure Surgery Dialysis Pneumonia Anxiety Lasix Lupus Stress Arrhythmia Heart disease Cardiomyopathy Hypertension Heart attack Congestive heart failure Depression
14 replies
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- By kardia
- Posted October 8, 2009 at 11:47 am
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You are not crazy if you feel your body is not right. And, all the "Normal" test results don't mean didillly (spelling? ha.)
Depression is a normal response to all this, and anxiety is also. I have been given Atavan low dose to have available for my Arrhythmias which seems to help with anxiety. I use them sparingly to help my physical reaction to my moods.
If you feel you need another cardiologist, then you need another cardiologist no matter what any one me included says. then you must follow your voice.
Mayo Clinic is a great teaching hospital and a leader in this field. I personally have been in conversation with a Doctor Vagelos, Heart Transplant cardiologist at Stanford Medical Center in the SF Bay area.
My problem is different of course, Arrhythmia with two wires, ICD and cardiomyopathy, I have one benign primary cardiologist whom I would not like to do anything with my heart, an Arrhythmia specialist who I trust, and the potential of the Heart Transplant doctor in case our procedures fail. Anyone of them could move on to other places, which scares me, but my sanity is attached greatly to knowing they are there.
Please take care of yourself. Do what your heart says...literally, say "heart what do you want?" ha.
I talk to mine every day...ha.
seriously.
good luck.
thanks for sharing.
kardia
www.kardianotes.blogspot.com
- By scarlettsmommy
- Posted October 8, 2009 at 2:56 pm
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If you have to ask... it's time for a new doctor - at least a second opinion... Believe me, I went to the same general practitioner for years - my mother hailed him as a God... he's also the one who never caught her CHF - swollen legs so bad, they wept fluid.
It takes a strong person to change doctors - I finally did it and you can too. You may truly end up going back to him - but you never know what's on the other side until you try.
I recently hurt my knee and went to 3 orthopedists until I found one I liked... I pay a hell of a lot for my insurance - I am going to love and trust my doctors or find another.
Sending you big hugs,
Judi
- By Asurvivor
- Posted October 8, 2009 at 3:16 pm
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You might need one and then again you might be looking for problems with your heart and won't stop til someone agrees with you.
If the chamber gets larger, then you have problems. CHF, being one of them. If your ankles/hands/face aren't swollen, chances are you do NOT have CHF.
You are using a Mayo doctor correct? If so, that's why you moved to Florida. Ask this doctor what he would advise his wife/husband to do. If they tell you honestly, then tell them to do it.
Your blood will thin out in Florida and you may be SOB from humidity. But since you wanted this doctor, stick with him. He could be the only one telling you the truth. Too many opinions can be confusing and cause you to have unnecessary procedures, surgery.
Believe me, I went through a lot of doctors before I found one I really like.
- By jacksvern
- Posted October 8, 2009 at 4:05 pm
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asurvivor. thanks for your response. i don't think i have gone off the deep end yet wanted more complications with my heart, so that i am seeking out a doctor that will agree with me. one thing i loved about this sight is that we can get opinions and not feel like we are crazy. grant you, i might be. but i would offer that anyone who has been through what i have in four years after being told all is okay by doctors, would probably question. i thank you for your input. actually if you get time and research on left ventricular decrease of chamber, you will find that it is actually a factor in the stages of valvular disease of the heart.( this is a decrease in size) Enlarge chamber isn't usually what happens. decrease chamber size also is indication of the likely hood of chf in patient in future.
- By Asurvivor
- Posted October 8, 2009 at 5:43 pm
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Curriculum Vitae: Graduate Miami University. Allied Health Major. Nationally Certified EKG Technologist, Certified Monitor Technologist in CCU and Telemetry, Certified Holter Monitor Technologist as well as worked in CICU, ER Trauma Teams, Recovery Rooms, Dialysis, and worked with lupus patients who have heart disease, worked with cancer patients, private doctor's offices, etc. I've also worked over 100 "Codes" in hospital settings, in some cases was the person calling the codes, in more than a few was the determining factor on whether or not the patient survived. I have worked at Mercy Hospital, a trauma center, in Miami, The American Hospital in Miami, Baptist Hospital in South Miami and as mentioned before, for private doctor's practices in and around Miami. I have also worked with neurosurgeons and neurologists and can understand the workings of the human body.
Plus I've been through almost 10 yrs of heart problems myself, including CABG, stents and actually not having blood pressure or pulse on the cath table, after my vessels were severed by the doctor. I'm pretty well versed in heart disease, having had a mom, two sisters and aunts and uncles with the disease. You have minor valvular disease as per the doctor, therefore a decreased chamber. However, you have a long long way to go to even think about CHF. CHF from decreased OUTPUT is what you need to worry about, not the size. This usually stems from hypertension. If you keep to your AHA diet, exercise and take your meds including bp meds, you have a very small chance of developing CHF.
People with hypertension not only have a high prevalence of impaired left ventricular diastolic function, but in particular WHEN left ventricular hypertrophy (shrunken chamber) is present they also have a high prevalence of impaired left ventricular myocardial function that in turn can lead to congestive heart failure. One problem out of two does not lead to CHF on it's own.
CHF presents as fluid around your heart, indicated by swollen ankles, hands or face and severe SoB as I stated in my first post. If you don't drink an overload of fluids and do what the doctor tells you to do, you're safe. Are you taking water pills? Do you take potassium or eat bananas and drink OJ? Those contain potassium also. If you take water pills, you must injest potassium in some form.
An enlarged heart (cardiomyopathy) is worse. Sudden death is mostly caused by cardiomyopathy. Athletes usually suffer from this.
Valvular disease can be corrected. If the doctors had seen this as a real danger when doing your CABG, they would have fixed it. I was told I had valvular disease and when my thoracic surgeon had my chest open, he saw nothing of the kind.
Do you take Digitalis is some form? I do because after my triple bypass I was told my heart had to retain it's original shape and this was the drug of choice for that. I'm still on it, once a day.
You are not crazy and you're not off the deep end. I was just throwing ideas around for you to consider before you switch. You can get as many opinions as you want to, but I have the feeling no-one can calm your fears. I feel for you, I really do.
Good luck.
- By jacksvern
- Posted October 8, 2009 at 7:20 pm
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thanks survivor. i am glad that you do understand my concerns, probably better than anyone. guess it truly is one day at a time. thanks for knocking me in the head!
- By Asurvivor
- Posted October 9, 2009 at 12:36 am
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Yes it is one day at a time. For me in the beginning it was one minute at a time. They never expected me to leave the hospital except in a body bag. Guess my will to live fooled them!
My stance now is why worry, when it's my time, it's my time. Nothing can stop that. I do take over a dozen medications to prevent my sudden death, but someday the bypasses may fail and I'll hit the floor with a thud. (That's what the thoracic surgeon told me). No use putting foam rubber all over the floors, my luck it will happen outside. lol
Good luck.
- By AlaskaGirl
- Posted October 9, 2009 at 11:32 am
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Until someone takes you seriously then you need to check out other doctors. You need answers, because the stress you are under is not doing you any good. We've all been through what you have - I've argued with my cardiologist at the beginning until it was proven that he was wrong - I had heart disease and needed surgery! Don't let them put you off. I'm 16-1/2 years out on a CABGX4 and then after 14-1/2 years, 2 med stents. When you don't feel right, you don't feel right. Sharen, AlaskaGirl
- By laurali
- Posted October 9, 2009 at 1:44 pm
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Hi! Just one note: I was diagnosed with CHF 3+ years ago with EF of 29%. I had never had swollen hands, ankles, face, or anything else! When I asked the cardiologist about it sometime later, she said that by the time your ankles, etc. start swelling, you have a very serious problem. Retaining fluid within the body and other organs can go on without notice; and is not good! A better indicator is to weigh every a.m. If weight goes up more than 2 lbs. chances are that fluids are being retained. So, people, don't wait until your ankles swell to get checked out - especially if you're having other symptoms! laurali
- By Asurvivor
- Posted October 9, 2009 at 3:27 pm
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Lauali, what was/were your symptom/s? How did you know to go check it out without any symptoms? Just curious. Everyone has different theories about water retention and CHF, but guides are in place for a reason.
My cardios told me swollen ankles are the first thing they look for, they're always checking for fluid there. He said if I gained more than 2 lbs in a day to take Lasix, if not stick with hydrocholorathiazide for regular water retention. I stopped taking that a few months ago. I've lost weight. Also told me to cut back on water. I never drank water, but have started drinking a lot this very hot summer. I did notice the ankles starting to swell a bit. I just cut back and they went down and I was fine. Not even a doctor visit.
- By NoDayButToday
- Posted October 10, 2009 at 10:50 am
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Dianne, I think you should try to find a doctor you are comfortable with, and one that will listen and take your concerns seriously. We know our bodies and should pay attention when they tell us something isn't right.
I was also diagnosed with CHF with no ankle swelling. In retrospect, I had swelling in my abdomen, but I thought I was just fat. :-) My EF was 20% and I had so much fluid on my lungs I was sent directly to the hospital. So the lack of ankle swelling is not a definitive sign that there's not a problem.
- By laurali
- Posted October 10, 2009 at 1:36 pm
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Hi Survivor -- My first symptom was while walking my little dogs in the park (with my hubby, thank goodness), I suddenly just went down. A few days later started having dizzy spells and a surging feeling. I was at that time walking 2-3 miles a day; working out with a personal trainer once/week. Went to PCP and started tests; was waiting to get a Holter monitor (orders got messed up!) when I awoke in the middle of the night knowing something was very wrong. Hubby called 911; they came and started shocking me in living room. Then to ER and emergency implant of ICD. Later I learned that I had CHF, cardiomyopathy, and had suffered a complete heart block. Looking back, the only other symptom I could recall was that I had been feeling tired and had begun taking naps now and then. Go figure! Docs said I was very lucky I woke up that night and that I did exactly right calling 911! I'm now doing very well although it did take me quite awhile to recover emotionally from the stress of the event! Take care. laurali
- By Asurvivor
- Posted October 10, 2009 at 2:50 pm
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OOPS!!! I forgot abdominal swelling. My mom had that. Sooo sorry, I have to add that to my list, hands OR ankles OR face OR abdomen or ALL or one or more. However, those ARE indicative of heart failure. You can't rule anything out when it comes to the heart without tests.
20% is grossly abnormal EF. Usually with so much fluid in the lungs, you wheeze or can't breathe and usually have a cough, loss of appetite, not feeling right and the swelling NODayButToday said she had.
My late father in law suffered 5 heart attacks, had quadruple bypasses and stents and when he went into CHF, his doctors said he had pneumonia. They treated him for pneumonia for 5 days before he was transferred to another hospital where he died. It was too late. At the old hospital, they took xrays and saw fluid around the heart, but thought it was in the lungs. They kept injecting him with blood thinners and giving him Lasix to no avail. They put him on antibiotics for the "pneumonia".... such a shame.
If anyone goes to Mayo for the meeting, will you ask the doctors if you will have any or all of the symptoms I mentioned or none at all? Please??
Laurali, wow! I developed CHF and cardiomyopathy after surgery. Then they went away with treatment. I still watch for signs though.
The heart block is nasty, that's what probably put you down and out. You are so lucky that your husband was with you. Calling 911 was the right thing to do. So many people get in the car, thinking it's faster. May be, but the EMT's have life saving techniques and equipment and it's worth the wait.
The stress I think is the worst part. We all suffer from PTSD. I'm amazed at the amount.
- By jacksvern
- Posted October 10, 2009 at 9:16 pm
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I am so glad this has been a lengthy discussion! It proves that everyone has different symptons, and that the doctors go by "guidelines". If i have learned anything through the last four years, its that we do have to listen to ourselves. Survivor, when you first responded to my discussion, i took offense and felt like you were coming on strong not knowing the circumstances. but after thinking about it, i think you probably are coming from (appears to work in medical field) a medical perspective which i suppose is a little different. i am sure that you see patients that are convinced their dying tomorrow, when in fact they aren't so bad. however, i do understand that we can think so much about something and become paranoid. i know that with my problems i do worry(probably way to much). Its hard not to. my mother died at 54 of chf, my dad died at 53 of massive heart attack, four uncles(on dads side) died of heart failure before ages of 60.(oldest was 60.) so when my problems came about at the age of 48(now 52) i do wonder if my life will to be short. so there could be something to what you said about looking for something. its just really hard when you don't feel good on any given day and feel you have to force yourself to even begin your walk. Anyway, i'm getting off track here. I have really enjoyed this discussion gals! thanks
dianne
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