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Heart Failure - Road to Recovery

sprotte

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Aug 9, 2015
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is your supplement available EU domestic?
ive looked for it but couldnt find any..
thanks!
Hi, just take a look at this:

Cheers
 

[email protected]

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Hi, just take a look at this:

Cheers
this is what i bought last week, thanks
 

[email protected]

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So i did a bloodtest on wednesday and received my values yesterday:
good things:
CRP, Troponin I, Potassium, Creatinine are all in range.
out of range:
Sodium: too low (guess ive reduced my salt intake too much in regards to how much diuretics i take)
NTpro BNP: still the same value as in hospital 10th May. But after researching quite a bit, it seems this value is not really useful for short-term progress indication. It is better used in 3-6 month intervals. After receiving the value first i was shocked and almost cried because i put so much energy and effort in doing "the right things" right now (low kcal intake to lose weight which is nice, right now i am down to 93,1kg), walking outdoor (i am hovering around 10k daily now and i am already taking slight uphills), takeing my medication and heart supps etc, ...
But then my "research-me" (i love to research the shit out of lab values etc.) woke up and it didnt take long to see that ive paid this lab value for nothing since 2.5 weeks is definitely not enough to see a change there..
 

nothuman

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I have two teaspoons daily of dried parsley flakes for Apigenin personally. In addition to heart health, Apigenin is for shutting down our CD38 production (which is a good thing for anti aging)
 

nothuman

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no what i advised Biggerp73 was (im in a rush so i have to do this quick) but i base this on the situation

high dose ubiquinol and pycogenol (if i remember right 200mg morn and nite of ubiquinol and 100mg morn and nite of pycogenol) (22% increase in Ejection Fraction!)


apigenin at 200mg morn and nite


curcumin depending on brand a hefty dose morning and nite (meriva, novasol or another very reknown well established brand)

Too many studies to quote (just put curcumin cardiomyopathy or curcumin heart failure or curcumin Left ventricular hypertrophy in google)

There might have been something else in there (Ribose or L carnitine) I cannot remember exactly...but L-carnitine has a lot of usage literature regarding this problem
D-Ribose does have a few supporting studies showing it's benefits on heart failure. 15g daily is the optimal amount for this purpose.
 

[email protected]

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I have two teaspoons daily of dried parsley flakes for Apigenin personally. In addition to heart health, Apigenin is for shutting down our CD38 production (which is a good thing for anti aging)
ive bought some pills from UK, not sure if they arrive since i did not order from UK since the Brexit..
If not then i will follow your suggestion
 

nothuman

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ive bought some pills from UK, not sure if they arrive since i did not order from UK since the Brexit..
If not then i will follow your suggestion
I'm in an anti aging group on facebook and the dried parsley flakes suggestion gets tossed around whenever Apigenin comes up. Whether it's as effective as the supplement version, I don't know.
 

[email protected]

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Hi guys,
short update:
since i am waking up pretty often since i would say 4-5 years (4 times a night is standard, sometimes every hour) i made an appointment at a "throat-nose-eye" doctor where i can make a 1-day "short-screen" sleep study. Dependent on the result of this short screen study, i can then make an appointment at a sleep lab to make more in depth tests and maybe get a CPAP machine because i am quite sure I have this issue (more or less severe). i snore pretty hardcore which seems to be an additional sign. Also, my neck muscles were always one of my stronger points which might also lead to sleep apnea. I know that usually very heavy peoply get it, this was never my case (maximum of 106kg @ 172cm) but it is still considered massive overweight.

I have this appointment in 2 weeks. (21.6)
Next friday is my appointment at the hospitals cardiology department for my follow-up appointment and the decision about the further process.
Beginning of the week i got quite a shock when my insurance sent me a letter that they have to check the insurance status of the lifevest. Already thought i had to pay the minimum 3300€ rent for 4 weeks.. But it all turned out great.
Also talked to the company of the lifevest because i have the issue that my rent is until 10.06 but my docs appointment is 11.06 and i should not give the vest back without my docs okay. The company was very cooperative and said it is no issue if i keep it some additional days without any further rent. Problem solved :)


I am not sure if i should make an appointment in regards to my thyroid because i am a bit lost there.
in the meanwhile, i take 150µ T4+15µ T3. When not taking this medicine for 1 day and pulling bloods, (doc said i shouldnt take day of bloodwork because it screws result) i still get a TSH of 0,004 (so literally ZERO), T4 at the complete lower limit of the range and T3 is even minimally below this lower limit.
I am lost here because i already take a "big" replacement dose, TSH is absolutely suppressed but my active hormones are still extremely low..
 

Bleed

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I can say confidently that if you lose some of that weight your sleep will improve. Your heart will be better for it and you will probably look better leaner.


Hi guys,
short update:
since i am waking up pretty often since i would say 4-5 years (4 times a night is standard, sometimes every hour) i made an appointment at a "throat-nose-eye" doctor where i can make a 1-day "short-screen" sleep study. Dependent on the result of this short screen study, i can then make an appointment at a sleep lab to make more in depth tests and maybe get a CPAP machine because i am quite sure I have this issue (more or less severe). i snore pretty hardcore which seems to be an additional sign. Also, my neck muscles were always one of my stronger points which might also lead to sleep apnea. I know that usually very heavy peoply get it, this was never my case (maximum of 106kg @ 172cm) but it is still considered massive overweight.

I have this appointment in 2 weeks. (21.6)
Next friday is my appointment at the hospitals cardiology department for my follow-up appointment and the decision about the further process.
Beginning of the week i got quite a shock when my insurance sent me a letter that they have to check the insurance status of the lifevest. Already thought i had to pay the minimum 3300€ rent for 4 weeks.. But it all turned out great.
Also talked to the company of the lifevest because i have the issue that my rent is until 10.06 but my docs appointment is 11.06 and i should not give the vest back without my docs okay. The company was very cooperative and said it is no issue if i keep it some additional days without any further rent. Problem solved :)


I am not sure if i should make an appointment in regards to my thyroid because i am a bit lost there.
in the meanwhile, i take 150µ T4+15µ T3. When not taking this medicine for 1 day and pulling bloods, (doc said i shouldnt take day of bloodwork because it screws result) i still get a TSH of 0,004 (so literally ZERO), T4 at the complete lower limit of the range and T3 is even minimally below this lower limit.
I am lost here because i already take a "big" replacement dose, TSH is absolutely suppressed but my active hormones are still extremely low..
 

[email protected]

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Messages
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Hi guys,
So for most semi-good news but to be honest, ive expected another result and was quite down in the hospital.. had tears in eyes. for me it is a bad result
So i had my control appointment at 11:30.
First we were talking general things, getting through my medication and the first thing that happened there that made me mad.
The doc gave me a letter for my house doc when ive left. I gave that letter to my house doc and got the medication from him that was
recommended there. Later, they have resent the letter and added bisoprolol to the list. Guess what. my house doc didnt inform me so ive wasted time without the
complete medication protocol.
Since i am reading a lot here etc. ive talked him into switching bisoprolol for nebivolol. So 2,5mg nebivolol is now added to my medication plan.
Next was the echo.
I dont have the letter right now but the result:
EF got better, but is still below the treshhold (35%) which is required for the cardiologist to "free me" of the lifevest. (not sure if i understood im correctly but i thought he said its slightly below 30 or on the edge to 30%)
So i have to wear it for at least another 4 weeks now during the fucking heat.
I was sitting there in disbelief because my biggest wish was to get rid of that thing. I have rashs all over my body due to the metal pads and the sweat and im a wrack.. i really feel down and depressed right now...
I really feel good and am walking alot. Were walking with parents and friends and i seem more fit than those. My parents jokingly said if my EF is still that low i should make an appointment for them too because i was running them down during the walk xD
Well.. for today i keep my head down and think about life or something like this.. absolutely no joy in doing anything right now
 

prodaf

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Apr 23, 2011
Messages
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Hi guys,
So for most semi-good news but to be honest, ive expected another result and was quite down in the hospital.. had tears in eyes. for me it is a bad result
So i had my control appointment at 11:30.
First we were talking general things, getting through my medication and the first thing that happened there that made me mad.
The doc gave me a letter for my house doc when ive left. I gave that letter to my house doc and got the medication from him that was
recommended there. Later, they have resent the letter and added bisoprolol to the list. Guess what. my house doc didnt inform me so ive wasted time without the
complete medication protocol.
Since i am reading a lot here etc. ive talked him into switching bisoprolol for nebivolol. So 2,5mg nebivolol is now added to my medication plan.
Next was the echo.
I dont have the letter right now but the result:
EF got better, but is still below the treshhold (35%) which is required for the cardiologist to "free me" of the lifevest. (not sure if i understood im correctly but i thought he said its slightly below 30 or on the edge to 30%)
So i have to wear it for at least another 4 weeks now during the fucking heat.
I was sitting there in disbelief because my biggest wish was to get rid of that thing. I have rashs all over my body due to the metal pads and the sweat and im a wrack.. i really feel down and depressed right now...
I really feel good and am walking alot. Were walking with parents and friends and i seem more fit than those. My parents jokingly said if my EF is still that low i should make an appointment for them too because i was running them down during the walk xD
Well.. for today i keep my head down and think about life or something like this.. absolutely no joy in doing anything right now
I understand you depressed but you re alive and you ve a family. Stay positive, maybe your next echo ll be better, work for it (y). I wish the best for you !
 

[email protected]

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Feb 5, 2017
Messages
462
I understand you depressed but you re alive and you ve a family. Stay positive, maybe your next echo ll be better, work for it (y). I wish the best for you !

yeah, i guess thats my problem. I gave my best possible and ive failed to achieve the goal. Ive went for my walks, I didnt overexert myself, i watched sodium, i watched water intake, i took my medications, i bought tons of heart supps and took them.
I dieted for the whole time to lose wait and ive achieved my personal goal to get down to 90kg as of today. (well, 90,2kg but with the vest and computer attached to it so i let it count).
thats the reason why i am so depressed. I am disappointed by myself... hard to explain..
on the other hand, it got better (waiting for the letter for exact values) and i was not prescribed the beta blocker yet. So i got mixed feelings. Maybe 5 weeks is also way to short for it to get from 16 to 35+ (which is the treshhold) and i had wrong expectations but the lifevest which of course is a life saver but now with summer being there it sucks. Constant sweating, rashs, bad sleep,....
To be honest, when ive left the hospital ive wished it all just ended..
 

maldorf

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Messages
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Hi guys,
So for most semi-good news but to be honest, ive expected another result and was quite down in the hospital.. had tears in eyes. for me it is a bad result
So i had my control appointment at 11:30.
First we were talking general things, getting through my medication and the first thing that happened there that made me mad.
The doc gave me a letter for my house doc when ive left. I gave that letter to my house doc and got the medication from him that was
recommended there. Later, they have resent the letter and added bisoprolol to the list. Guess what. my house doc didnt inform me so ive wasted time without the
complete medication protocol.
Since i am reading a lot here etc. ive talked him into switching bisoprolol for nebivolol. So 2,5mg nebivolol is now added to my medication plan.
Next was the echo.
I dont have the letter right now but the result:
EF got better, but is still below the treshhold (35%) which is required for the cardiologist to "free me" of the lifevest. (not sure if i understood im correctly but i thought he said its slightly below 30 or on the edge to 30%)
So i have to wear it for at least another 4 weeks now during the fucking heat.
I was sitting there in disbelief because my biggest wish was to get rid of that thing. I have rashs all over my body due to the metal pads and the sweat and im a wrack.. i really feel down and depressed right now...
I really feel good and am walking alot. Were walking with parents and friends and i seem more fit than those. My parents jokingly said if my EF is still that low i should make an appointment for them too because i was running them down during the walk xD
Well.. for today i keep my head down and think about life or something like this.. absolutely no joy in doing anything right now
It hasn't been long now since this all started. Did your EF go up any at all? If they figure it's up just 5% I'd be happy. It took me 1 year to get mine back up to 55%. It's a slow process. I know it must be uncomfortable to wear the vest, but you don't want to end up like Chris did on here. He wore a vest for awhile and then later when he no longer had it on, he died.

Figure that wearing the vest is better than being like me and having it implanted in your chest. That's for life. I've got to go back in a few weeks and have them run another wire through my chest and into my heart.

Please don't get over confident and stop wearing the vest. You can feel great one moment and then the next be on the floor begging not to die. It strikes that fast and can be without warning.
 

maldorf

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yeah, i guess thats my problem. I gave my best possible and ive failed to achieve the goal. Ive went for my walks, I didnt overexert myself, i watched sodium, i watched water intake, i took my medications, i bought tons of heart supps and took them.
I dieted for the whole time to lose wait and ive achieved my personal goal to get down to 90kg as of today. (well, 90,2kg but with the vest and computer attached to it so i let it count).
thats the reason why i am so depressed. I am disappointed by myself... hard to explain..
on the other hand, it got better (waiting for the letter for exact values) and i was not prescribed the beta blocker yet. So i got mixed feelings. Maybe 5 weeks is also way to short for it to get from 16 to 35+ (which is the treshhold) and i had wrong expectations but the lifevest which of course is a life saver but now with summer being there it sucks. Constant sweating, rashs, bad sleep,....
To be honest, when ive left the hospital ive wished it all just ended..
That's even better if your EF went up without the beta blocker because the beta blocker can raise your EF. Then if you were to stop taking the drug, your EF would drop back down again. In that respect, I'd consider the higher ejection fraction while using the beta blocker as being sort of "artificial ". Your's seems to have gone up mostly on its own. I can't remember what other drugs you are taking.
 

[email protected]

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Messages
462
That's even better if your EF went up without the beta blocker because the beta blocker can raise your EF. Then if you were to stop taking the drug, your EF would drop back down again. In that respect, I'd consider the higher ejection fraction while using the beta blocker as being sort of "artificial ". Your's seems to have gone up mostly on its own. I can't remember what other drugs you are taking.
Hi maldorf,
yes, EF went up by appr. 10% from 16% to appr. 26% as he told me via phone 30min ago. But he will give me exact values via the letter after his "analysis". could be +- few %..
Im still taking candesartan (16mg morning and evening right now), 2x5mg torasemid morning 1x5mg torasemind evening and 25mg epleronone. Then the natural supps like ubi. and starting from today the beta blocker.
i know i should be happy but on the other hand i hoped and expected to get the vest removed. But you can be sure i will not put it in the corner without my cardiologists okay. Right now it is 24/7 on me with around 15min break when i am showering and then scrubbing my back after for the good feels, hehe :D
 

maldorf

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Hi maldorf,
yes, EF went up by appr. 10% from 16% to appr. 26% as he told me via phone 30min ago. But he will give me exact values via the letter after his "analysis". could be +- few %..
Im still taking candesartan (16mg morning and evening right now), 2x5mg torasemid morning 1x5mg torasemind evening and 25mg epleronone. Then the natural supps like ubi. and starting from today the beta blocker.
i know i should be happy but on the other hand i hoped and expected to get the vest removed. But you can be sure i will not put it in the corner without my cardiologists okay. Right now it is 24/7 on me with around 15min break when i am showering and then scrubbing my back after for the good feels, hehe :D
Not sure how much time passed for you to gain 10%, but hopefully if you pass that time period again you gain another 10%. That would mean you are half way to getting the vest off. Personally, after living the way I have, I'd be scared to not wear the vest. Stopping its use would scare the hell out of me. I can understand you wanting to get rid of it though.

When the doctors look at your echocardiogram, they interpret it. One doctor might give you a 26% and another might say it's 20%. It is all approximate. I've had doctors look at the same report and be separated by 5% or so. It's an estimate and not an exact science. On my readings, they sometimes just give me a range. Right now they just say it's less than 20%. The lower it gets, the harder it is to pinpoint a value they told me.
 

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its 5 weeks now since my initial measurement of 16%.
yes, you are right about the interpretation. This is why i use the same doc who uses the same equipment for each of my tests.
This should make it quite accurate imo
 

maldorf

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its 5 weeks now since my initial measurement of 16%.
yes, you are right about the interpretation. This is why i use the same doc who uses the same equipment for each of my tests.
This should make it quite accurate imo
Yes, that's good. Your improvement should be very accurate. The outright overall ejection fraction is still up for interpretation. You are right to focus on the improvement number.
 

[email protected]

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so today i am already in a much more positive mood.
Did my morning walk (35 minutes quite relaxed because it is quite warm)
Ive started 1,25mg nebivolol yesterday and took my second dosage (also 1,25mg, i tend to start slowly) this morning before my morning walk.
Something i different than before but i can not really say what it is.
At the end of an uphill or a big stairway i feel differently. I am out of breath but the "out of breath feeling" is very regular and i am able to catch my breath much faster. I am not sure how i can explain it, I dont even know what exactly is different but i feel better after those uphills and big stairways.
Right now i am wearing a highly accurate ekg (not sure what its called in english, ECG? the device that measures heart rate, regularity of heart beat etc) device in addition to my vest because the doc thought he saw some additional systoles (?) during my echo. When i did the resting ekg minutes later it looked fine again.
Maybe i had some irregularities in heart beat and the beta blocker helps there?
not sure, but i keep you guys informed.
 

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