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Heart Failure - Road to Recovery

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so small updates:
1.) Apigenin arrived from UK. Will start it now.

2.) had my "second opinion appointment" today at a really good specialist.
Well, much talk, many tests etc.. End result:
i will on wednesday go to Uni-klinik Heidelberg (big hospital specialised for heart issues etc) for clarification and on thursday 9:30 i will get my katether done. They also want to make a heart muscle biopsys since they assume the non-compaction cardiomypathy. Also, gen tests will follow.
EF was measured at 28% today which is an increase of about 12% in 5 weeks.
Medication was also changed, candesartan removed, Entresto (special medication for heart insufficiency) added and also beta blocker switched to carvedilol
 

maldorf

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so small updates:
1.) Apigenin arrived from UK. Will start it now.

2.) had my "second opinion appointment" today at a really good specialist.
Well, much talk, many tests etc.. End result:
i will on wednesday go to Uni-klinik Heidelberg (big hospital specialised for heart issues etc) for clarification and on thursday 9:30 i will get my katether done. They also want to make a heart muscle biopsys since they assume the non-compaction cardiomypathy. Also, gen tests will follow.
EF was measured at 28% today which is an increase of about 12% in 5 weeks.
Medication was also changed, candesartan removed, Entresto (special medication for heart insufficiency) added and also beta blocker switched to carvedilol
Only thing there I don't like is the Entresto, since hypothetically it has the potential to cause Alzhiemers and macular degeneration. So I'm not taking it. My doctor wants me to.

You're probably just going to be on it for a short time, so maybe no trouble down the road. I would be on it until I die,, so many years. That drug was pushed through by the FDA here in the US before research was even finished, so we don't know long term effects. Look up Entresto and Alzhiemers.
 

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Only thing there I don't like is the Entresto, since hypothetically it has the potential to cause Alzhiemers and macular degeneration. So I'm not taking it. My doctor wants me to.

You're probably just going to be on it for a short time, so maybe no trouble down the road. I would be on it until I die,, so many years. That drug was pushed through by the FDA here in the US before research was even finished, so we don't know long term effects. Look up Entresto and Alzhiemers.
he made me aware of it but at the same mentioned those studies are almost 10 years old and follow up studies did not really prove the point with Alzheimer.. i guess i will read into it by myself.
From the few things i have seen online it should be highly effective for heart insufficiency.
I have mixed feelings about the new beta blocker. I had no negative experience with nebivolol and am scared that i will have side effects with the new one
 

Kaladryn

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Sorry to hear about your health problems, I read most of this thread for the first time just now.

I didn't see anything about seeing a mental health professional, I think they could be helpful. Perhaps CBT? Obviously, healthy eating and exercise is your most important goal, but it's so hard to do these things when depressed. Things like cognitive behavioral therapy really do work.

I would do as much exercise as your doctor allows, and eat as healthily as possible.
 

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Sorry to hear about your health problems, I read most of this thread for the first time just now.

I didn't see anything about seeing a mental health professional, I think they could be helpful. Perhaps CBT? Obviously, healthy eating and exercise is your most important goal, but it's so hard to do these things when depressed. Things like cognitive behavioral therapy really do work.

I would do as much exercise as your doctor allows, and eat as healthily as possible.
Hi Kaladryn,

thanks for your input.
I have to say mental i am quite healthy. I have a huge support in form of my family who do everything possible to help me.
I also have great support from the place i work which is great.
Of course it is/was hard to stop more or less cold turkey etc but i am coping quite well with it i guess.
I do already excersise, most of my excersise is walking and since friday i am also riding my stationary bike and doing easy bands tranining.

Right now i am doing IF, eating 2 times a day, low carb, high protein, essential fats around 40g from krill oil, walnuts,.. my goal is to lose some more weight, i had my lowest weight since almost a year yesterday with 90,2kg. Goal is to get down to 85kg and then not exceeding 90kg again.

i am already looking forward to the weekend. I have to admit i am scared of the catether although i know and many people have told me that it is absolutely nothing to worry about. But the thought alone makes me a bit sick. Also, that they remove a small part of my heart muscle for biopsy sounds scary as hell..
 

maldorf

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he made me aware of it but at the same mentioned those studies are almost 10 years old and follow up studies did not really prove the point with Alzheimer.. i guess i will read into it by myself.
From the few things i have seen online it should be highly effective for heart insufficiency.
I have mixed feelings about the new beta blocker. I had no negative experience with nebivolol and am scared that i will have side effects with the new one
I took the Coreg beta blocker for about 10 years and had very little sides. I was on the CR caps, 80 mg/day. Doc switched me over to Bisoprolol because it slows the heart rate while not lowering the BP so much. My BP was getting too low.

All beta blockers seem to affect the ability to get a raging hard on.

Entresto is so new that there is no way to know the long term effects on Alzhiemers and macular degeneration. Another thing, the big study that Novartis did to demonstrate the effectiveness of their drug was setup in a way to favor the drug. I took it for about 6 weeks and felt nothing. It also has some significant side effects.
 

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I took the Coreg beta blocker for about 10 years and had very little sides. I was on the CR caps, 80 mg/day. Doc switched me over to Bisoprolol because it slows the heart rate while not lowering the BP so much. My BP was getting too low.

All beta blockers seem to affect the ability to get a raging hard on.

Entresto is so new that there is no way to know the long term effects on Alzhiemers and macular degeneration. Another thing, the big study that Novartis did to demonstrate the effectiveness of their drug was setup in a way to favor the drug. I took it for about 6 weeks and felt nothing. It also has some significant side effects.
yeah, thats true.
For me, i am especially scared of the excersises intolerance that some beta blockers bring. I didnt feel any negative aspects from nebivolol there. Also, i could still get hard, haha xD
carvedilol seems much stronger and therefore i am a bit afraid of sides.
Also, you scare me about entresto, haha :D
 

maldorf

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yeah, thats true.
For me, i am especially scared of the excersises intolerance that some beta blockers bring. I didnt feel any negative aspects from nebivolol there. Also, i could still get hard, haha xD
carvedilol seems much stronger and therefore i am a bit afraid of sides.
Also, you scare me about entresto, haha :D
I was taking 80 mg cap once a day. Thats the highest dose normally given. It didn't negatively affect exercise.

Hopefully they titrate your dose up over a few weeks. Going on a large dose like I was on could be tough if its abruptly given. I have asthma too, and when we increased it slowly I had no issues. Tried a different beta blocker and it made my asthma worse.
What is your dose of Carvedilol?
 

maldorf

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If you're only going to take Entresto for a year or less then your risk of Alzhiemers and vision problems should be low. I'm mainly concerned because I would take it for life. Hopefully your heart recovers to a mid 50s or more EF and you can stop taking the crap.

In the 6 weeks or so I took it, I felt nothing and had no visible benefits. My echocardiogram was no better. 6 weeks of course isn't very long.
 

maldorf

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" The US FDA approved Entresto with the condition that there is a clinical trial to identify the serious risks of cognitive dysfunction with its use. Further studies, including a neurocognitive sub-study of the PARADIGM trial, have shown no evidence of cognitive-related adverse events in patients who have taken Entresto, although the follow-up time was relatively short. During the PARAGON-HF trial, Entresto failed to meet its primary efficacy endpoint, but improved a number of secondary endpoints when used in patients with HFpEF. The PERSPECTIVE trial is an ongoing clinical trial that will provide important answers regarding Entresto’s safety profile and much needed clarification regarding the potential risk of cognitive side effects."

 

maldorf

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I was taking 80 mg cap once a day. Thats the highest dose normally given. It didn't negatively affect exercise.

Hopefully they titrate your dose up over a few weeks. Going on a large dose like I was on could be tough if its abruptly given. I have asthma too, and when we increased it slowly I had no issues. Tried a different beta blocker and it made my asthma worse.
What is your dose of Carvedilol?
Hey Maldorf,
Starting dose of entresto and carvediolol is 1 cap twice daily. For Carvediolol it is 2x6,25mg daily. He wants to up it up to 2x25mg eventually..
 

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so i just had my clarification appointment where i got ECG done, blood test done for kidney and thyroid etc etc.
So tomorrow is the day, i am fucking scared xD
they will probably have to do the catheter via my groin and not hand because the biopsys is only possible if done via groin. (which i dont like)
He also told me about the possible things that can happen which sounded bad but i am hard to kill so.. I will get back to you guys tomorrow evening, promised ;-)

Special question for @maldorf:
although my EF recovered already quite a bit they are discussing (due to my young age) if a ICD implantation should/could be done.
They told me there are 2 "variants". one where they implant it more or less over your upper chest/shoulder and one where they implant it in rib cage area.
Which did you get? Is it easily visible? Do you feel it sometimes when moving/lying down? Do you feel it when working out?
thanks maldorf
 

maldorf

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so i just had my clarification appointment where i got ECG done, blood test done for kidney and thyroid etc etc.
So tomorrow is the day, i am fucking scared xD
they will probably have to do the catheter via my groin and not hand because the biopsys is only possible if done via groin. (which i dont like)
He also told me about the possible things that can happen which sounded bad but i am hard to kill so.. I will get back to you guys tomorrow evening, promised ;-)

Special question for @maldorf:
although my EF recovered already quite a bit they are discussing (due to my young age) if a ICD implantation should/could be done.
They told me there are 2 "variants". one where they implant it more or less over your upper chest/shoulder and one where they implant it in rib cage area.
Which did you get? Is it easily visible? Do you feel it sometimes when moving/lying down? Do you feel it when working out?
thanks maldorf
Mine is up by the clavicle. I think if they put in down in the ribs it's because they run the wires through your chest wall and then implant the electrodes epicardially(on the outside of the heart). I think most, like mine, run through the left subclavian vein and then inside your heart.

I have to go in August and get a 3rd wire run for my left ventricle because I have AV block now because of the last ablation I had. I now need a biventricular device. You should ask your cardiologist which you may need. I've only got 2 wires now. 1 for right atrium and 1 for right ventricle.

I'm praying that they can fit the 3rd wire through my left subclavian vein. If it's too tight now then they'll have to either run it through my right side or through my chest wall. I'm worried about going going through the wall because the wire will have to run a long way and I'm scared ill fracture it while lifting.

With the way I have it now up by my clavicle, there is no limits to what I can do. You just need to limit your activity for a period of time right after surgery. It takes a few weeks for the tissue to grow around the device and wires. That helps lock it in. If you raise your arms up overhead or exercise vigorously too soon its possible to fracture a lead. I had zero problems.

Yes, it's visible. It's just implanted right under the skin, so there is a small scar and a bump. If your doctors advise it, because your heart doesn't improve enough, then you better get it. If you dont get it and go into ventricular tachycardia, there is a very good chance you WILL DIE. I've gone into v tach many times and each time my defibrillator has fired off to save my life.

The 1st time mine went off was right after Christmas in 2008. Just a few months after I got it. I would have died then, more than 12 years ago. I was only 38 years old. Each time it goes off I know that I would have probably died. It's a very creepy feeling. So if you like being alive, you better get it if they say you need one.
 

maldorf

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If you don't have an ICD and your heart goes into V tachycardia, there is a very great chance it will go into v fib. Then the next step is asystole, cardiac arrest. With the ICD it fires off way before v fib sets in and gets your heart back into normal sinus rhythm.

If you don't have an ICD, then you are depending on someone else being near you when you pass out. When you go into v fib you will pass out and go down like a ton of bricks. Then that person has to defibrillate you fast or you die. EVERY TIME mine has gone off I have been alone. Nobody would have known I was in trouble. My wife would find me dead hours later. Plus, nobody has an external defibrillator sitting around the home. When you go out in public you'd have to carry that defibrillator wherever you go!

I passed out a few times and my doctor needed to decrease the HR at which my defibrillator fired off. Now I don't pass out and have to feel the defibrillator shock me. Hurts bad and feels terrible. Better than death though! Its too dangerous passing out. You dont want to pass out while driving a car or standing up because you could get hurt or die.
 

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Hey maldorf,
thanks for your detailed answers, really appreciate it.
Well, i will know more after the catheter tomorrow and after the results from the biopsys are there.
okay, it looks pretty small, which is a good thing.
This is my current look. Wearing it 24/7 apart from showering. Right now we have 34 °C heat, thats why i dont even attempt to leave the house.
of course body is flat, looking like crap but i guess this is somewhat understandable
1623860569224.png

the good thing is that it seems i do not have any arrythmea or tachycardia.
 

maldorf

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Hey maldorf,
thanks for your detailed answers, really appreciate it.
Well, i will know more after the catheter tomorrow and after the results from the biopsys are there.
okay, it looks pretty small, which is a good thing.
This is my current look. Wearing it 24/7 apart from showering. Right now we have 34 °C heat, thats why i dont even attempt to leave the house.
of course body is flat, looking like crap but i guess this is somewhat understandable
View attachment 136599

the good thing is that it seems i do not have any arrythmea or tachycardia.
Yeah, the device is small. If you need one, I recommend Boston Scientific. Their batteries are the best in the business. Medtronic's batteries don't last nearly as long, so you'll have to get sliced open again and get a new one in about 8 years. My old Boston lasted me over 11 years a d it defibrillated me a lot. That draws a lot of juice. My new one, which will pace nearly 100% of all heart beats on both ventricles, should last around 10 years. The new Bostons could last 15 years or more depending on use.

One guy I know had his Medtronic battery only last 3 years! When the battery runs out you have to go in for surgery again and get a whole new device. The leads are used again.
 

maldorf

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Each device bills for around $60,000 if I remember right. Insurance ends up paying most of mine.
 

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