I know I posted this before, but here I go again. I went for a second option- told but again that my heart is stretched I guess from hyperthropic cardiomyopathy and has been remodelled. i am told only thing left to do is amiodrone. I will not go near that dreadful drug. My question is "do i now just wait for heart failure?" Sorry for being such a "Debbie Downer" lol my name is Debbie. Google says prognosis for that is 5 years ...gotta love the net uhg. I wonder where is the best hospital in the world to go to should I decide to get a third and final option. My 2 eps and cardio doctor
are from Toronto. Thanks for reading. xo
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Debbie , so sorry to hear of your predicament . How far are you prepared to travel for a third opinion ? We have excellent centre in London but nearer to you have you investigated USA? I wouldn't write off Amiodarone completely if you are very carefully monitored. Just my opinion. Do keep us informed of your decision.
I am willing to travel anywhere really. I have not considered costs. I am at the networking stage. I am hoping things will fall into place as they so often do. Thanks for your response .
Canada has such a different medical model to either both US or UK it’s really hard for us to suggest anything. In your position I would seriously look at third consultation outside of the country because I don’t think Canada is exactly leading edge - only what I can gather from posts on here - even by Skype or phone first. I was thinking of Dr Gupta - York Cardiology - simply because I know he does both phone and Skype at reasonable cost. A 1st step, at least if you were thinking of taking up Yatsura’s suggestion - can’t imagine the costs for US.......
Thanks CDreamer, That is a good idea. My big complaint at the moment is my breathlessness. I am checking into and hoping it is from something other than my heart...hernia, my Gerd, malnutrition from bariatric surgery. Wishful but it gives me hope.
Medical costs here can be horrendous. Most of us have insurance but even this is no guarantee that the doctor you choose will accept your particular brand, And each insurance company has different plans which can vary greatly with out of pocket expenses. Our healthcare system is, in my opinion, very complicated for anyone to understand. Even those of us who grew up with it often aren't sure what's covered or not. We have some very good care, some mediocre, just like the rest of the world. One of the things I've learned over the years is that finding care at University Hospitals gives me a better chance of having many people on my treatment team helping to develop a treatmant plan rather than a single doctor in charge of all decisions. University Centers have students, interns, residents, ancillary personnel etc offering knowledge and input. Just my thoughts. Please ask any thing that might be helpful. Many people from all over the world come here for care . And we have physicians from around the world. Maybe there are websites that offer information to patients outside the US about how to financially navigate our system. Hope this helps. irina
Thank you very much. I guess when it comes down to the last thing one can do-we do what we are capable of doing armed with information from fabulous and caring people like on this forum. I am having a gastro procedure to rule out hernia or other issues with my Gerd. Yup might be denial and if it is I will get that step behind me. nervous lol.
Hi Debbie, I reread your post and my reply and realized all I gave you was a financial viewpoint. First, I am sorry you are having problems with heart failure but I feel even worse that it seems your physician has presented such a dismal picture of your options. In the US many major hospitals that have cardiac departments have a separate practice dealing only with heart failure patients. As you are in Toronto I would look at New York and Boston Hospitals. (My geography is not what it once was; there may be a closer city for you.) Let me tell you about the hospital that treats my atrial fibrillation.I'm in Atlanta and the hospital that I use is Piedmont Hospital. My department is Piedmont Heart Institute and within this department is a special up to the minute practice that handles nothing but heart failure patients. I know a lot about it because one of my neighbors in my senior living building is one of their long term 'star' patients. For several years he had an LVAD device (Left Ventricular Assitive Device) an artificial heart because his heart failure is so severe. Two years ago they weaned him off of it and with treatment from this center he now breathes and functions on his own. I see and talk to him most days and he gets around fine on his own. There are many new advances in heart failure prevention and treatment and it is not the death sentence that it once was. (Sorry to be blunt). And as for anyone-doctor, the internet-, putting a 5 year average on anyone's life I once worked with a surgeon who didn't believe in predictions like this. He had delivered lots of babies in his day and said"I never saw one come into this world with an expiration date stamped on their little bottom." I share this not because I think you should trek down to Atlanta but because there are many such hospitals who can provide the latest, up to date treatment that may help you. If it were me I would start with University Hospitals. They are the places that are usually on the cutting edge of medical research and treatment. I believe there is a lot of hope for you and many more options than your doctor has shared with you. Start your search and call the cardiac departments. I believe you will be surprised at what is available. Good luck in your search and take care. xx irina
It now seems I need to have a biopsy from my kidney. They suspect sell cell carcinoma ugh...now my heart seems overwhelmed...we never know. I will let you. Thank you!
Dr Gupta is doing a seminar in New York early in August so please watch one of his latest videos because he gives details at the end and he says he will be happy to meet and discuss problems, but time is running out so check it quickly.....
I was diagnosed with heart failure as a result of dilated cardiomyopathy last year and have an EF of 25%. I am presently being treated for arrhythmia by an EP who anticipates that the cardiomyopathy should resolve if my rhythm can be corrected. I had an ablation last month and a this week he has started me on a low dose of amiodarone. Like you, I really wanted to avoid this drug, but my EP assures me that it is safe for short term use. I would be very happy to recommend both my cardiologist and my EP who are based in London.
My stomach is very small because of weight lose surgery. I think even a small dose would be like a huge dose. I thought I was going to have an ablation, but they changed their minds. I hope yours is truly successful. When I get things into their proper place I may take you up on that referral -Thank you so much.
Sorry to hear that you are suffering and feeling so down. I am 62 and had felt like my life was over as quality of life was pretty poor for a while, particularly when I was all dosed up with prescribed meds and Warfarin (ick!). I spent a lot of time online and am inclined to the we are what we eat way of thinking. I am nearly off all meds with only the Cardiziem that I still take but slowly weaning off. I feel great the last 6-7 months since I've been taking the items below. Took a few months b4 the full benefits kicked in, but hey, I feel good now. BP 135 down from 145-165 at rest, heart rate roughly 68-76 at rest. When I exert which I could hardly do when on all those meds, rate goes up to between 87 - 115 but promptly goes back down when I stop. I almost never feel out of breath anymore and virtually no chest pain either - once in a blue moon if i try to do something like carry something very heavy too far a distance ( stupid me.) I am now able to walk briskly and further and look forward to getting in decent shape and losing 50 lbs of weight. Goal is 6 months to lose that amount.
You may want to consider taking Hawthorne. It helps me a great deal 1 (600mg) capsule 3x a day. Strengthens the heart. draxe.com/hawthorn-berry/
Thank you! i keep hearing more and more about alternative meds...I have very low blood pressure 90/60 is a good rate for me. I will read you entire story! Thanks for sharing.
I too have Hypertrophic Cardiomyopathy since a young chap; I'm now 73 and still feeling ''Not Bad''.. What I did years ago was get my weight down to a comfortable level, ate a good diet and took Bisoprolol pills daily which kept my Blood Pressure down and my heart at 50 beats per minute, constantly. This was the best I could do...And yet I was told that my prognosis by a 'Specialist' was; 'Oh you'll just die'..........true.
Mmm!! obviously he ''didn't know me'. All the best.
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