Shane - Diagnosed in June with Dialated Cardiomyopathy

This forum is intended for international users to help them with the treatment of cardiomyopathy or heart failure.
shane
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Berichtdoor shane » Ma Jan 07, 2008 5:57 pm

Hi Corrij,

I spoke with Shane last night and he said his headache is still gone. Should we start by slowly building the MSM again?

Thanks so much!
Verona

shane
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Berichtdoor shane » Ma Jan 21, 2008 3:38 am

Hi Corrij,

Shane is having to take 14 pills of the D-Ribose and it seems like quite a bit so he has been skipping doses. Is the correct amount 12 grams which means 12000 milligrams a day?

I just wanted to be sure. We can order some chewables that would be less pills if so.

Thanks so much!
Verona

Corrij (therapeut)
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Berichtdoor Corrij (therapeut) » Ma Jan 21, 2008 12:35 pm

Hi Verona,

Yes that is the correct doses.12 gram 12000 mg a day :D
The best way is to buy this as a powder, so he can do something in a glass of water and drink it,

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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Berichtdoor shane » Vr Feb 01, 2008 1:06 am

Hi Corrij,

Just an update on Shane, he got acute bronchitis last week and went to the hospital and they now have him on durectics or the drug to clear his lungs. They also have him on antibiotics and a week later he is still doing much better. They only kept him in the hospital for around three hours that day.

He hasn't been taking his Taurine lately because he says it makes him feel weird or dizzy.

Let me know what you think about him not taking it?

Oh, by the way his INR test are improving and he is taking less coumadin!

Thanks so much!
Verona

Corrij (therapeut)
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Berichtdoor Corrij (therapeut) » Ma Feb 11, 2008 4:47 pm

Hello Corrij,

Shane went in to the local cardiologist last week, and he had very encouraging news. First of all he said that the reason Shane was having to see heart transplant specialists in another city because they need to keep updated on his condition and monitor him in case of a future heart transplant needed. Then he said "but you aren't getting any worse, in fact you are getting better!!!" What an encouragement for us! Wow! I danced in the room after he walked out...lol

Anyway, I know he still has a long way to go, but with each new improvement, I know this year will be much better than the last one!

Also I mentioned earlier that Shane hasn't been taking his Taurine, because it makes him feel dizzy. Is there an alternative supplement or is it okay if he doesn't take this?

Thank you so much for all your help and knowledge, because I know we wouldn't be seeing improvement if it wasn't for Willy's protocol!!

Hope your holiday was nice!
Verona
Those who do not have enough time for good health,

will not have good health for enough time.

Corrij (therapeut)
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Berichtdoor Corrij (therapeut) » Ma Feb 11, 2008 4:48 pm

Hi Verona,

That is very great news
Well done.

I will put this message to your own topic, you have made a new one and its easier to have all the messages together

There is no alternative for the Taurine, and it would be the best if Shane try the taurine again.
This is a very important amino acid to help his heart recover.

Like CoQ10, the levels of L-carnitine and taurine in the heart muscle have been shown to decline among patients with CHF. By raising blood levels of both amino acids, patients with CHF have responded with fewer symptoms and improved cardiac function.

L-carnitine is essential for the transport of fatty acids into the heart muscle and mitochondria for energy production and is sensitive to the level of oxygen in the heart muscle. Studies have shown that patients with CHF who take L-carnitine have improved ejection fraction (Goa KL et al 1987; Mancini M et al 1992; Pucciarelli G et al 1992). There is evidence that L-carnitine helps the heart by preventing the enlargement of the left ventricle, which is a critical step in the progression of CHF. Studies have shown that L-carnitine can help prevent left ventricular enlargement after bypass surgery in patients who have had a heart attack (Taggart DP et al 1996). The same results were found among patients who have had an acute heart attack (Colonna P et al 2000). By improving ejection fraction and preventing enlargement of the left ventricle, L-carnitine addresses two of the most serious problems associated with CHF.

Taurine acts by a different mechanism. Patients with CHF often have swelling caused by excessive fluid buildup in the tissues, which puts additional pressure on the heart and accelerates CHF. Diuretics, one of the standard pharmaceutical therapies in CHF, are basically designed to flush excess fluid from the body. Taurine, through well-documented pathways, has a similar effect and has been shown to help reduce fluid levels, reducing the workload on the heart (Schaffer SW et al 2000).

Taurine has a number of other positive influences as well, including minimizing the effect of the protein angiotensin II (Schaffer SW et al 2000). Angiotensin II causes blood vessels to constrict. This is the same protein targeted by ACE inhibitors, which are a mainstay of conventional CHF treatment. By minimizing the effect of angiotensin II, taurine may reduce cardiac remodeling (Schaffer SW et al 2000).

Yes the holiday was fine, we went to Tsjechie but there was to little snow, so we couldn`t ski as much as we wanted, thanks for asking.

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

will not have good health for enough time.

shane
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Berichtdoor shane » Zo Feb 24, 2008 10:00 pm

Hi Corrij,

Is a vegetarian formula multi-vitamin good for Shane? Here is one that I am looking at: http://iherb.com/ProductDetails.aspx?c=1&pid=824

Also, if he needs to take 500 IU of vitamin E daily, then should we include in the total what he is taking in the multi vitamin?

Thank you!
Verona

Corrij (therapeut)
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Berichtdoor Corrij (therapeut) » Ma Feb 25, 2008 5:18 pm

Hi Verona,

It is a good product :wink:

There is 150IE vitamin E in this multi.
He can take a vitamin E with 400 IE, thats enough fot him, so yes include the total amount thats in the multi.

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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Lid geworden op: Zo Okt 14, 2007 1:30 pm
Locatie: Northwestern USA

Berichtdoor shane » Za Mei 17, 2008 6:24 pm

Hi Corrij,

Just an update on Shane. He is doing well, but is still pretty sore off and on where his defibrilator is implanted under his chest muscle. I guess the soreness is normal accrording to the doctors.

He still has quite a bit of energy and feeling well! We will be going back to the cardiology/heart translplant center in June for more check ups, so I am anxious to see the results. I would like to know what his EF reading is now...


Take care! :D
Verona

Corrij (therapeut)
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Berichtdoor Corrij (therapeut) » Di Mei 20, 2008 12:16 pm

Hi Verona,

Thanks for your up-date :D
Its great to hear that Shane is doing fine.

Its also important that he gets exercise to build up his condition.

A study published two years ago in the British Medical Journal changed a lot of opinions by showing that patients with heart failure can significantly prolong their life expectancy if they engage in an exercise training program. This study provided another nail in the coffin of the "enforced bed rest" school of thought that used to be so prevalent among doctors caring for patients with heart failure.

Now a new study from the April 19 issue of the Journal of the American College of Cardiology adds even more evidence that exercise is fundamentally beneficial in heart failure.

The 2004 report analyzed data from nine separate clinical trials, involving over 800 heart failure patients. Each clinical trial randomized patients with stable heart failure to either participate in an exercise training program, or to receive routine therapy without formal exercise training. Investigators concluded that heart failure patients randomized to exercise achieved a significant increase in survival, as well as a significant decrease in hospital admissions. The benefits were seen without regard to the underlying cause of heart failure - all subgroups of patients seemed to benefit from exercise.

In the latest study, investigators randomized 96 patients with heart failure to receive either standard heart failure therapy plus a 9-month aerobic training program, or standard heart failure therapy alone. They were able to demonstrate that patients randomized to the exercise group had significantly lower levels of a hormone called B natriuretic peptide (BNP) than patients who did not exercise. Elevated BNP levels occur with worsening heart failure, and the lower levels of BNP seen with exercise indicate that fundamental improvements occurred in these patients' cardiovascular systems.

The bottom line: patients with heart failure are rewarded with longer, healthier lives if they engage in exercise. Exercise provides a host of physiological benefits that can directly benefit patients with heart disease. Exercise improves vascular function, thus improving the heart's ability to perform work. It also reduces adrenaline levels, improves muscular function, and reduces the risk of fatal arrhythmias. Patients with heart failure should talk with their doctors about beginning a formal exercise program, and seek their assistance on doing it safely.

greetinhs
Corrij2
Those who do not have enough time for good health,

will not have good health for enough time.

andreaQ
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Lid geworden op: Do Okt 04, 2007 10:14 am

Berichtdoor andreaQ » Za Jun 14, 2008 3:30 am

Hi Verona,

Thanks so much for your support. Lovely to hear from you, and especially that Shane is improving - I can't imagine what it must be like to have an EF of 15%!! Many of the people on the forum who have dilated CM seem to have much worse EF than those with hypertrophic CM - or maybe I'm only noticing the positives in relation to my own case!

I went to the hospital today, and the cardiologist agrees that - on the surface - I no longer need an ICD. But they're still not giving me the all clear till I have a Holter monitor and ambulatory BP. I'm happy to do both, as I'd like to know for sure whether or not the VT has stopped. I feel like I only get the odd PVC now, but I know that's my own subjective viewpoint, so it'll be good to know one way or another.

On the upside, my daughter Karla is really taking control of her health, and life is looking much brighter for her. The hospital wants her to keep her ICD, even though she's also much improved, because her HCM may deteriorate if she ever gets pregnant (an improvement in itself, as they'd told her she could never have children).

I still feel quite emotional when I think of all we've been through. I also think of you at those times - I will never forget what it was like in Karla's early years after her diagnosis, and before we knew I had the illness too - I really 'get' what it's like from the mother's perspective. All we can do is stand by them and guide their choices when they're willing to listen. Take care Verona - and thanks again for your kind words.
Stay happy - warm regards.

shane
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Berichtdoor shane » Zo Jun 22, 2008 12:51 am

Hi Corrij,

We just got back from the cardiology center visit and they said that Shane is doing well. They will be testing his EF on the next visit in a few months, and then hopefully adjust his Coumadin dose. I would like for him to get off of it completely, so we will see. I am really anxious to get those tests and update everybody! :D

Verona

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Berichtdoor Willy » Wo Jul 30, 2008 12:33 pm

That is gooed news Verona

We currently have experience with an other way of following progress.

This test is based on blood proBNP value. Please ask Shane's cardiologist to test this value.
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina

shane
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Berichtdoor shane » Do Jul 31, 2008 8:12 am

Hi Willy,

Thank you for the recommendation. My question about Shane is that he has been having a difficult time trying to sleep. He is restless at night because of his legs and arms not wanting to calm down. Also he is depressed and has anxiety. Do you know what might be causing this, and is there anything we can do to help with this?

Thank you!
Verona

Willy
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Berichtdoor Willy » Do Jul 31, 2008 11:23 am

Maybe this is called the Restelss Leg Syndrome

http://en.wikipedia.org/wiki/Restless_legs_syndrome

Also he is depressed and has anxiety.

Does he feel better during the evenings and worse in the morning?
Met vriendelijke groeten,

Willy Witsel

Ben je blij met ons gratis advies doe dan
een tweet of een like bovenin deze forumpagina


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