My First Post for Dilated Cardiomyopathy

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
Douglas
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Bericht door Douglas » wo aug 15, 2007 3:31 am

:oops: Duh, you are quite right, I don't know what I was thinking when I typed Na :-?

I take extra Magnesium, but I wonder if it is enough.

Interesting about the "douche" I find hot showers, can help me, but I haven't tried the ice cold bit. I shall have to steel myself and give it a try :o

One other thing, I believe helps me, is that I am a great believer in the power of the mind. When I lay down to sleep at night, I use different visualisation techniques, and visualise things like my heart beating normally, my heart shrinking to normal size etc. I find this helps a lot. (Feel free to exclaim that I am a bit "strange"). :D
Regards,

Douglas Byles

Corrij (therapeut)
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Bericht door Corrij (therapeut) » wo aug 15, 2007 12:42 pm

Hi Douglas,

How much magnesium to you take?

No I don`t think youre strange I do the same :D
Every night when I go to sleep I visualise things and it really helps.

My husband has done the same when his heart was in a very bad condition and he believes that a big part of his recovery has everything to do with this, the way of thinking.Thoughts are very strong.

Have you read the book, The biology of believe (Bruce Lipton)?

greetings,
Corrij
Those who do not have enough time for good health,
will not have good health for enough time.

Douglas
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Bericht door Douglas » wo aug 15, 2007 3:03 pm

Hi Corrij,
I take 1000mg of Magnesium every morning.

No I haven't read Bruce Liptons book, I shall hunt it down and have a read.

Thanks for that.

8)
Regards,

Douglas Byles

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Marion
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Bericht door Marion » wo aug 15, 2007 9:56 pm

Hi Douglas,

If you start with the cold douche be ware that you first make your wrist and ankle cold :o , otherwise the shock is to big and that is not so good for the heart! :roll: :wink:

What Magnesium do you take? The Magnesium Aspartate is the best for the heart.
At the moment I use from NOW, the Magnesium (300 mg) & Potassium (99 mg.) Aspartate with Taurine (100 mg.). I get those from my Orthomolecular doctor special for my arrhythmias.

What about your experience of the body and mind, I’m not surprised any more.
Since December 2006 I started with ChiNeng Qigong, the Chinese way of healing your own body through the mind. Since then I meet all kind of people who do the same or have experience with it, recomanding my books and other way's to do the same!
With the ChiNeng we visualize that the body and in our case the heart is already in a healthy shape.

During my arrhythmias I learned a way of getting a good heart coherent by a practicing that was written in a book of David Surman-Schreiber (in Dutch the title of the book is Your Mind as a medication, but I don’t know what the title is in English.)

Shortly it gets on this way:
1. Breathe 3 times very deep in and out on a way that when you breathe out you get to the point that you automatically starts breathing in.
2. While you are breathing like that you visualize that your heart is getting nice, clean and healthy oxygen and all kind of material, you can not use inside, gets out.
Visualize that your heart is like a child in a nice and warm bath (in our case at that moment a very restless child that can use some reassurance).
3. Visualize yourself in a mood when you were very happy, in some nature or when you were a child, with your child or maybe with your mother, friend, wife or whatever situation that makes you feel very comfortable and happy.

Many times it happened with me that with a big ‘boom’ my arrhythmias stops and my heart beets normal again.

To be sure, it didn’t works always, but many times I got good results with it.

So…. Aren’t we all as “strange” :lol: :lol:
Groetjes Marion :P

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Bericht door Corrij (therapeut) » wo okt 17, 2007 12:51 pm

Hi Douglas,

Can you give me a quick update?
I am wondering how things are :D

greetings,
Corrij
Those who do not have enough time for good health,
will not have good health for enough time.

Douglas
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Bericht door Douglas » wo okt 17, 2007 2:06 pm

Hi Corrij,
Hows things? I am going along very nicely thank you.

I take my supplements as reccommended, though I had to adjust them as I didn't realise that Carnitine & Taurine don't work well together, till I read one of the other posts.

I feel really good, as far as heart performance goes. In fact my Cardioligist increased me to the maximum dose of Carvedilol, 25mg x twice daily and I hardly missed a beat. Blood pressure just moved to a lovely 110/60.

My weight is slowly coming down, and I am feeling very positive.

I haven't quite got the arrythmias worked out. Mostly I think Taurine helps, but sometimes I feel like the opposite is true. HOWEVER I am definitely having less of them :D

So all is very good. I am eternally greatful for your support here. I read all the new posts regularly, even if I am not posting myself.

I am looking forward to my next echo in 2008.

Duggy! :lol:

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Bericht door Corrij (therapeut) » wo okt 17, 2007 3:47 pm

Hi Duggie :D

Thank you very much for your quick answer :D
That`s all I want to hear :D Duggie is doing great :wink:

I am very sorry, I should have told you about the amino acids, carnitine and taurine :oops:

Take them always on a empty stomach and apart from each other,this is to avoid the amino acid competition.

Some extra info for Douglas,

Protein is not just important, it is essential. Every single cell in your body is is made up of protein. Brain cells, for example, are 10 percent protein. Muscle and red blood cells have as much as 20 percent. Overall, protein is the second largest building material of the human body (preceded only by water) comprising approximately 15% by weight.

To keep your cells alive, you must give them protein all the time. Even though it is not a superb source of energy, like carbohydrates and fats, you need protein and specific amino acids to keep the body alive.

But not all proteins are the same. Made of amino acids linked together in long chains, some proteins can be made in the body and some should be consumed through the diet. What differs one protein from another is their amino acid content. There are about 28 commonly known amino acids which mix up and twist together in many different ways making between 10 000 and 50 000 different kinds of protein in the body.

What Are Amino Acids
The body cannot directly use proteins found in food and must break these down into smaller units, known as Amino Acids. Proteins consist of chains of hundreds or thousands of amino acids joined with peptide bonds. When you eat protein-rich foods, the bonds linking the amino acids together are broken by digestive juices and enzymes into isolated amino acids. Only after this process is complete, your cells inside the digestive tract can absorb the nutrients and make them usable for the body.

Think of it as a jigsaw puzzle - protein is the puzzle and amino acids are the pieces that make it. If one or more pieces are missing, you can't see the beauty of the picture. Same thing with protein - unless all amino acids are supplied through the diet, your body cannot make up proteins so imperative in optimal growth of new healthy cells.

The body can't store amino acids and will break down it's own protein sources, including healthy muscle and organ tissues, to meet its need for amino acids. If you want to keep your brain, muscles, bones, joints, all internal organs, even blood and lymph performing their functions, you should constantly provide amino acids from a well-balanced diet.

Out of 22 amino acids required for proper body functioning and optimal health, your body can make 10-12 in sufficient amounts from glucose and other proteins. These are called non-essential and include alanine, asparagine, aspartic acid, cysteine, glutamine, glutamic acid, glycine, proline, serine, and tryptophan.

The rest of them have to be supplied through your diet as your body is not designed to make them, hence the name "essential amino acids". These are tryptophan, lysine, methionine, phenylalanine, threonine, valine, leucine, and isoleucine. Their function is to serve as nitrogen donors to make other amino acids and supply the most important structural material for the new cells to develop and replace the old ones.

Semi-essential amino acids are arginine and histidine and the need for these increases if they get depleted at times of stress. Usually adults can make enough of these to maintain normal balance, just like nonessential amino acids. But children, those injured, ill, and even elderly need additional amounts to support muscle tissue growth due to higher metabolic demands.

What Do Amino Acids Do
Besides building cells and repairing tissue, amino acids form antibodies to combat invading bacteria and viruses, comprise the enzyme and hormonal systems, build nucleoproteins (RNA & DNA), carry oxygen throughout the body, and are part of all metabolic processes in the body.

It's not the quantity of protein you take, but the quality and ratio of amino acids that keeps the body healthy and stable. The body can make 40,000+ proteins from essential amino acids, but it can only make as much as allowed by the least amino acid present in the body. For example, if one amino acid is only present at the 60% level the assimilation of all amino acids will be limited to that 60% level. This is called rate limiting and it makes balancing amino acid metabolism, using food protein, more difficult.

greetings,
Corrij
Those who do not have enough time for good health,
will not have good health for enough time.

shane
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Bericht door shane » vr jan 04, 2008 9:35 am

Hi Doug,

How are things going lately? Are you still feeling even better?

Shane is still getting used to all those pills he takes daily and of course the newest ones that he has added lately from the protocol. A little overwhelming, but he knows it will be worth it.

His soreness has almost gone away from the defribulator implant. Since he was so thin, he wanted it under the muscle.

Hope your Holidays were happy!
Verona

Douglas
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Bericht door Douglas » ma jan 07, 2008 2:20 am

Hi Verona,
My holidays were very happy thank you. I hope your festive season was good and that 2008 is kind to you and Shane.

I am not feeling as well as I was, I am quite short of breath, but I don't seem to have any significant change in fluid retention. Therefore, I think it is just my atrial fibrillation giving me a hard time. The person who finds the perfect cure for that will make a fortune.

Shane has had his defib put in the right place. believe me. My first defib was implanted in 2002 and in 2005, I walked into a door handle and bruised the pocket the defib sat in. As a result, I got a serious infection in the pocket, and apparently what the little bugs like to do, is climb down the pacemaker/defib leads and go into the heart, which then gives you a blood infection etc etc.

I was lucky, the hospital here killed the bug before I got any blood infection, but I had to fly a few thousand kilometers to have the leads removed, as there are only about 3 surgeons in Australia who tackle lead removal.

I then had 3 months in hospital waiting for everything to be right, so I could have a new defib. Note: I could have been out of hospital on amiodarone, but my wife didn't want me to risk it.

I have a new defib on the righthand shoulder, and it is deeper to avoid any similar issues. Under the muscle is the best protection yet and Shane should be right for many years with that.

I should point out that my case is extremely rare, and I am just one of those "lucky" people who have things like that happen.

Cheers
Doug.
:)
Regards,

Douglas Byles

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Marion
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Bericht door Marion » ma jan 07, 2008 7:36 pm

Hi Douglas and Verona :P ,

I'm very pleased with your conversation here!
Tomorrow they gone implant a biventriculair defribulator.
We asked by telephone if the implant under the muscle is a possibility and they said they don’t do that very often in this hospital.
We are searching to all kind of arguments to convince them to place it under my muscle (I’m 1.58 m. and weight 54 kg. so not very skinny but for sure not to much fat! :wink: )
Your story gives us an extra argument to use tomorrow.

Thank you for sharing all this with us, it came for me just on the right time! :D

I let you know what happen when everything is behind me!
Groetjes Marion :P

shane
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Bericht door shane » di jan 08, 2008 8:08 pm

Hi Marion,

Did you convince the doctors to implant the defribulater under the muscle? I agree that it is more protected under the muscle.

By the way, I really like your avatar, I have some antique art deco around my house. I appreciate Louis Icart artwork with the greyhounds. My dog is a greyhound also!

Take good care and keep us posted, :D
Verona

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Marion
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Bericht door Marion » ma jan 14, 2008 7:18 pm

Hi Verona :P ,

It was not easy to convince the doctor to implant under the muscle!
Normally they use for that kind of implantation an other operating room where they can give an complete anaesthetic.
The room they reserved for me only gives light anaesthetic so they had to implant under the muscle under local anaesthesia and they prefer not to do it like that!
So at first they suggested that I would make a new appointment within a few weeks or so.
We convinced them that we will not leave the hospital until this operation was finished because I was suffering already 3 months of atrium arrhythmias and I was afraid that my ventricles will not stand this much longer !!!
Then they decided to implant under the muscle under local anaesthesia!
So it happened and during the implantation I used my meditation methods to relaxe my muscles as good as possible!

I’m wondering, Shane and Douglas, did they make your pocket under the muscle with complete or local anaesthetic?

During the implantation of my bi-ventricular ICD they use 3 leads, 1x right atrium, 1x right ventricle and 1x left ventricle.
The right atrium and ventricle were successful, but the little branch of the vein (I don’t know the right word for this) they need to place the left ventricle lead did not excised in my body, just bad luck!
So soon, probably 21st of January, they implant this lead with a ‘view surgical operation’ (this is the literal translation from the Dutch) at the back of my left ventricle.

However, I’m very glad the ICD is implanted because I feel much safer now than the months before. The leads which are placed already have the important function of defibrillation and pacing when needed!
The third lead will give my heart more power and hopefully will bring my heart in a better shape in the future.

Your story, Douglas, gives me that I look to every door handle in the house :o and I warn them not even to think about touching my body, no matter where and specially not on my left shoulder :o !

Well so far my story, it is not yet finish yet, but the most important part is done!

About my avatar, Verona, we have a statue like that in our house, but with 2 Greyhounds, and I like it a lot. This picture I found on internet and Willy placed it for me.
We also have two dogs, but not Greyhounds like you, we have Rottweilers, a bit smaller and not so skinny! :wink:
Groetjes Marion :P

Douglas
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Bericht door Douglas » vr jan 18, 2008 4:18 am

Hi Marion,
Wow nothing is ever simple is it! :-? Bi-ventricular hey, that is very flash. I was considered for one, but they decided that I didn't need it so I am happy about that and have the Dual chamber, (Top and bottom) :lol:

I have not had mine put under the muscle fully, but every time I have had it done, they have used a full General Anaesthetic, as they like to test the Defibrillation Therapy, after it is installed. :o

While it was a door handle that got me, through my own carelessness, it is amazining just how many people have slapped me on the shoulder right over the top of my ICD. :evil: They only ever do it once though. As mine is not deep and so it hurts and I react a lot. :x

Hope all is well with people, I have been bad and not taken my supplements for a few weeks, but should be starting them again tomorrow.

Regards
And happiness to you all.
Doug.
Regards,

Douglas Byles

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Bericht door shane » za jan 19, 2008 5:33 am

Hi Marion,

I think it was just a local anesthetic that Shane had while they implanted the defribulater.

How are you doing so far?

Verona

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Marion
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Bericht door Marion » za jan 19, 2008 4:55 pm

Hi Verona :D ,

Thank you for asking :lol:
I’m feeling a bit better than the first days after the implantation. My heart then was booming so hard that I hardly could sleep! :cry:
Now it feels like before the implantation, a bit more energy, but still with the arrhythmias.
Monday they place the third lead and I’m really curious about the results after that.
With the third lead my heart will be constantly paced so I hope that this will give more energy to me!

About the anesthetic, I heard already from other people that local is not so rare, they do that more often.
What really the problem was for the cardiologist, I don’t know but the result at the end is what I wanted so I am satisfied about that.

Hi Douglas,

I did get at the end of the implantation a full anesthetic to test the defib, but they started to make the pocket…. However it all happened like it does, so …. :wink:

About men slapping on the shoulders of other men….. my father gets half a year ago a pacemaker and a few weeks after the implantation he went to his club to play chess …. :-? One of his college players was very happy to see him again and did the same as happened to you… :evil: Only the big problem was that it happened just short after the implantation and the wound starts bleeding again. :o
His shirt was complete red of his blood! When he get home my mother was almost getting a heart-attack (just gidding she don’t have any problem with her heart :wink: )
They went to hospital and there they had to place an extra stitch!

However I’m happy for that I’m a woman, we don’t get a slapping on our shoulder so very often, for that I’m safe (I hope)

Other question, did you mention a different now you did not take your supplements?

I red back into your story’s and find this on januari 7th :
Douglas schreef: I am not feeling as well as I was, I am quite short of breath, but I don't seem to have any significant change in fluid retention. Therefore, I think it is just my atrial fibrillation giving me a hard time. The person who finds the perfect cure for that will make a fortune.
Was this before you stopped taking supplements or during?
The atrium fibrillation is taking a lot of energy, I know!
Did you try the extra potassium and magnesium?
It helped me for a long time to get de fibrillations under control, at the end it didn’t work out any more and probably the course of this is the problems in my heart with electricity.

At the moment I had the diagnostic cardiomyopathy (now 4 years ago) I had a blockade of the left bundle branches of the Purkinje fibers. (I don’t know if this is the right description in English, but when you look to this link, you can find more about it: http://en.wikipedia.org/wiki/Purkinje_fibers )
As I understood after my implantation, is that this blockade could course that my left ventricle dilated more and more and coursed my atrium fibrillation!
The third lead now will give my left ventricle the electricity that is missing and so it is possible that my left ventricle will shrink again…. :o :D :lol:
This is what we understand and when we have the fist meeting with my cardiologist, I ask him if this is correct!!! However, it sounds reasonable
With the help of our supplements, I should be much better within a year!

I hope you can do something with my story to find out where your fibrillations come from and what you can do about it.

All the best :P ,
Groetjes Marion :P

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