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Any new help for long time CHF diagnosis??

Heart & Blood Health | Last Active: May 29, 2017 | Replies (8)

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Hello @bergordon, I also want to welcome you to Mayo Connect. I am glad that you have not given up hope and I agree with Teresa that it might be a good idea to seek a second opinion if possible. Rochester Mayo Clinic is one of the best for heart issues. I have a daughter that has Long QT Syndrome and had a subcutaneous ICD implanted. It has since been removed due to some false positives that caused it to shock the heart and knock her down multiple times. I think it was due to the type of Long QTS she has. She was on medications for awhile - I don't remember which one but think it was a beta blocker and she didn't like the side effects so she stopped taking it. Her heart doctor convinced her she had to do something so she now has a pacemaker and it seems to be doing it's job well.

It really does help to ask questions of your doctors and tell them what's going on...and if they don't listen or are not receptive then I would definitely seek out a second opinion and look for other treatments that may be available to you. Have you asked the doctor if there are any alternative medications that may work better for you? or any heart healthy diets? The reason I would mention diets is that I have always struggled with eating healthy until I started searching for answers for improving the symptoms of my peripheral neuropathy and high blood pressure. I've cut out almost all processed foods and try to eat organic when possible - focusing on fresh veggies and fruit. I used to be a big red meat eater but now eat a lot less of it. Unfortunately what I should eat more of - wild caught fish - I can't because it makes me sick. It comes out faster than it went in. Sorry for getting off topic a little but I think almost any condition can benefit from a healthier lifestyle even if it can't fix it.

Here's one listed on Mayo Clinic's website talking about the Mediterranean diet for a healthy heart - http://mayocl.in/1bdF8Pm

Bottom line - you are definitely too young to surrender to your condition! Keep your positive attitude and keep looking for an answer by learning as much as you can about your condition and any treatments that are available.

Blessings on your day!

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Replies to "Hello @bergordon, I also want to welcome you to Mayo Connect. I am glad that you..."

Thanks @johnbishop. You have provided some great info! Teresa

Thanks so much for your response, John. I think a lot of my problem is that I am getting frustrated because I have done soooo many of the 'right' things, and I feel I am still not where I should be! I have been on a number of heart medications - treating all kinds of heart related issues, including high blood pressure, fast heart rate, slow heart rate, weak heart, fluid reduction, and I'm sure others. I had gastric bypass in 2009, and lost 80 pounds. I've gained some of it back now, because I don't eat 100% right and my shortness of breath prevents me from getting exercise. Like I said, I'm not eating totally right, but I'm eating more right than wrong. Mostly fresh fruits and vegetables, some chicken, very little processed foods. So, I've already tried or been through most of the things one 'should' do. Even though I've been trying all these 'different' things over the years and don't seem to be making any progress - I'm at the point where I just need some new directions. I do a lot of internet based research, so I feel I am fairly knowledgeable about my condition. I'm seriously considering looking into going to the Rochester Mayo Clinic. I live in East Texas, so it will be a long trip. I don't want to make the trip if I'm not real hopeful that something really positive can come of it.

@bergordon, your frustration is understandable. I have to force myself exercise even if it's a little each day. I bought a recumbent exercise bike and use it for about 30 minutes each morning four or five days a week. You're sitting so it's not doing much for the upper body but it does keep your legs moving and doesn't impact shortness of breath a lot. I've struggled with shortness of breath over the years myself and it does limit what you can do. I recently bought some therapy bands to see if I can build up my arm and upper body strength. They are easy to use and you can build up a little at a time. I always make it a point to stop when I'm doing anything and get a shortness of breath...especially in the winter when I'm playing with a shovel in the snow.

I used to have a sister that lived in Taylor, Texas and have made that journey on I-35 many times so I know it can be a long one. In my younger days it was a really long one day drive and eventually turned into 2 days with a stop just south of Oklahoma City. Like you I've struggled with weight. I got to around 330 lbs when I was in my late 50s. I joined Weight Watchers and was able to get down to 250 lbs for awhile but then bounced between 260 to 280 and thought I could lose weight on my own. I didn't do a good job at it until I was looking into my peripheral neuropathy and ran across a book by Dr. Terry Wahls - The Wahls Protocol. I try to follow her basic diet but am not always that great at it. Her story on body nutrition and the part it plays in your health inspired me to give it a try. I have been able to get my weight down to 235 and keep it within 3 or 4 lbs for the last couple of years. She has an amazing story of getting rid of her symptoms of MS and going from a wheel chair to riding a bike. It's a short read if you've never heard about her - http://terrywahls.com/about/about-terry-wahls/

I'm hoping some others will chime in and offer some insight. If you would like to seek help from Mayo Clinic, the contact information for Rochester Mayo Clinic can be found here http://mayocl.in/1mtmR63.

If you have never been to Rochester there are a lot of short YouTube videos you can watch that will help you find your way around.

Please keep asking questions. You really are your best advocate.


@johnbishop Thanks for all of the practical suggestions you have offered, John. The recumbent bike is a good one. You have made a lot of adjustments in life style and I suppose that is what coping with chronic illness is all about. You have offered some good insight! Teresa

Thanks Teresa - sigh, I haven't exercised in 3 days and I'm paying for it today. I upped my prednisone a few mgs this morning because I knew it was going to be a long day - 3 hour drive up north to Cambridge, MN and 3 hours back and a lot of standing around looking at old cars at the North Central Chapter of the Hudson Essex Terraplane Car Club. Fun day with the wife's relatives looking at old cars with old people ☺ I'm definitely doing my exercise first thing in the morning when I get up.

Hope you had a Blessed day!


@johnbishop Yes, I started the day at the pool and walked in the water for about 15 minutes. It was needed. I'm sure that you will back into your exercise habit soon. Glad to hear that you had a good time with the cars and family! Teresa