Heart Failure - Road to Recovery

[aphextwin]

I have 8 bottle of Swansons Apigenin which I take with Dante’s formula. The word has been steadily getting on the benefits of Apigenin.

 

[M@NU]

I have 8 bottle of Swansons Apigenin which I take with Dante’s formula. The word has been steadily getting on the benefits of Apigenin.

Hey Aphextwin,
nice to hear, i also got my apigenin last week from UK (240 caps a 100mg, derived from grapefruit is says) and i will start today to take it. planning on taking 3 a day.
Also got PQQ caps (cost me a fortune) that i also add to my supp stack).

So sorry for late update, was still a bit weak yesterday.. last 3 days were pretty rough for me:
- Wednesday i had to travel to the uni clinik for the clarification appointment, blood labs, ECG and documentatio etc.
2,5 hours driving there, 2,5 hours waiting in the heat with FFP2 mask, 1 hour routine, 2,5 hours driving home. I Was told to get there tomorrow (so on thursday) for my "surgery" at 9:30 in the morning.
Thursday:
- 2,5 hours driving there, arrived at 9:15 in the morning. HAD TO WAIT UNTIL 17:30 IN THE EVENING (YES; YOU READ CORRECTLY) IN THE WAITING ROOM, damn heat, FFP2 mask etc. Thought i die of heart failure before the shit starts.
From 17:30 on it went pretty fast. Got down in the basement (reminded me of the movie "anatomy" which also plays there where they took patients, went in the bsement with them and experimented on them).
Was told they will do a "double catheter", so they checked my right heart chamber and the left heart chamber. That meant i get 2 incinsions in the groin. At the end, they also took 8 tissue samples (4 from each side and from different locations) for biopsys. I am glad they told me after the "surgery" that those tissue samples are extracted via 9,1mm tubes in each sides because the thought alone of getting thos thick tubes rammed into my body would have made me run away.

Many negatives but also some positives found (i dont have the catheter letter right now but he told me a bit after the meeting)
- LVEF is around 24% measured with catheter.
- Left ventrical is highly enlarged
- RVEF is pretty good
- structural, parts of the heart look suspicisous ("spongiose"). Biopsy results will probably tell more, but he can imagine that i had a myocarditis.
- no coronary heart disease. My coronary vesels are "beautiful" according to him xD
...
Will update with more details as soon as i have the letter.

Medication was slightly changed:
- Entresto should be incrased to 2/0/2, so double the dosage i took. Have to increase slowly due to low blood pressure (110/60 measured in hospital)
- Nebivolol should be increased, also slowly
- Torasemid has to be increased due to slightly too much pressure in my heart/lung (havent understood it 100%, waiting for lettre)

They told me the vest is usually used for 12 weeks for young patients to see if EF recovers AFTER the patient receives his full medication. They wanted to see me for follow up end of july. I then told them if this is not too early since i just take my beta blocker and entresto since beginning of this week. They were surprised to hear that ("why so late" .. " whats with the first 5 weeks"...) and the date for follow-up appointment for the decision if ICD has to be implanted has to be evaluated again. Maybe i get 5 more weeks, lets see..

some recommendations from them:
- I drink quite a lot of liquid. I am sure it is between 5,5 and 6,5 liters most days.
--> for active people with my weight, i should reduce it to 3,5liters, even if i sweat.
- I have reduced my salt intake to around 4-4.5g daily
--> Reducing salt is okay, but i should measure my electrolytes atleast every 4 weeks (together with kidney values). They also told me it would be okay to take in 6-7g because of the diuretics and the heat (sweating a lot). Reducing too much is not good either..
- I can excersise as much as i want (even weights) as long as i follow some rules:
--> weights and endurcance should be about equal. Breath during the excersise, no valsalva manoveur (dont keep air in stomach like i always did when lifting heavier..) machine work is prefered over free weights due to pressure load on the heart.
1 of the endurance sessions should be 20-25minutes intervals up to 90% of heart right (?? can this be correct??)
- What i maybe did wrong is that ive restricted carbohydrates. They said i should still keep at least 150g carbs a day in my diet.

what surprised me is that they do not recommend swimming as endurance training (even when the vest should be gone) because the water puts unnecessary pressure on the body (or something along those lines)

Right after the "surgery", the pressure bandage was the most painful thing. This paired with having to piss but you cant because you are lying flat down and 3 oung nurses are around you was really really ugly. The 3 nurses drove me in a small room then and let some water flow which helped me to piss (i completely filled the 1000ml bottle xD).
Right now, the groin area still hurts a bit and i have to be careful not to blow those incinsions out because then ill probably bleed to death. So i was told today and tomorrow sedentary. From monday on i can walk as much as i want but not too many stairs, from thursday on i am allowed to ride the bike and to easy weights. "more intense" training is allowed from next saturday on

 

[maldorf]

Having the cath up the leg can suck. Back in 08 I had it done 2x when I had my heart attack. Bled like a pig. Leg was black from my groin all the way down to my knees on both sides. My privates swelled up huge and black. I had been pumped full of heparin, hence the bleeding.

I hope your heart recovers so you don't need an ICD.

 

[M@NU]

Having the cath up the leg can suck. Back in 08 I had it done 2x when I had my heart attack. Bled like a pig. Leg was black from my groin all the way down to my knees on both sides. My privates swelled up huge and black. I had been pumped full of heparin, hence the bleeding.

I hope your heart recovers so you don't need an ICD.

yeah, it sucked hard, especially the hours right after.
Pain is a bit better but still can not imagine to go on walks right now, haha
Swelling is pretty low which surpises me. I also got heparin.
The worst thing was i got lasix during the "double catheter" due to the amount of contrast medium they have used. I had to pee like a fucking horse but couldnt lying there with 3 young nurses around my naked body.
I am still a bit week today and sometimes "imagine" to have a bit heart pain. Dunno if this is my imagination or it can hurt due to the 8 samples which were cut off.
I also hope i dont need it.
@maldorf: may i ask how "fit" you were in the weeks after your first incident? I ask because i am a bit shocked about the differences in how the heart insufficiency can affect people. For me, i am still quite fit and can work out, walk stairs etc without having to lie in bed for hours afterwards due to exhaustion. For the study (see below) i had to make a 6-minute walk test. Just walk with a device in your hand that measures the distance and measure HR/BP before and afterwards and then tell them how exhausting it was. She was a bit shocked how fit i still am (are there people that have trouble walking 6 minutes on a flat surface?)

Ah, additional info i forgot to mention:
i am now part of a big study, TORCH-plus. A study regarding non-ischaemic cardiomyopathy.
This study will enable me to more physicals (echos, blood tests, ...) which doesnt sound too bad.
There are follow up appointments at 1year, 2years and 4 years from now on to gather material for the study.

additional edit:
apart from the groin pain, my biggest issue right now is low blood pressure.
After adding entresto and nebivolol last saturda my BP tends to hover around 105/58-63.
And they still want me to increae the dosages. I guess i have to take much time to do that without feeling like crap

 

[maldorf]

yeah, it sucked hard, especially the hours right after.
Pain is a bit better but still can not imagine to go on walks right now, haha
Swelling is pretty low which surpises me. I also got heparin.
The worst thing was i got lasix during the "double catheter" due to the amount of contrast medium they have used. I had to pee like a fucking horse but couldnt lying there with 3 young nurses around my naked body.
I am still a bit week today and sometimes "imagine" to have a bit heart pain. Dunno if this is my imagination or it can hurt due to the 8 samples which were cut off.
I also hope i dont need it.
@maldorf: may i ask how "fit" you were in the weeks after your first incident? I ask because i am a bit shocked about the differences in how the heart insufficiency can affect people. For me, i am still quite fit and can work out, walk stairs etc without having to lie in bed for hours afterwards due to exhaustion. For the study (see below) i had to make a 6-minute walk test. Just walk with a device in your hand that measures the distance and measure HR/BP before and afterwards and then tell them how exhausting it was. She was a bit shocked how fit i still am (are there people that have trouble walking 6 minutes on a flat surface?)

Ah, additional info i forgot to mention:
i am now part of a big study, TORCH-plus. A study regarding non-ischaemic cardiomyopathy.
This study will enable me to more physicals (echos, blood tests, ...) which doesnt sound too bad.
There are follow up appointments at 1year, 2years and 4 years from now on to gather material for the study.

additional edit:
apart from the groin pain, my biggest issue right now is low blood pressure.
After adding entresto and nebivolol last saturda my BP tends to hover around 105/58-63.
And they still want me to increae the dosages. I guess i have to take much time to do that without feeling like crap

Yeah, increasing the dose slowly will help a lot. Ive always had trouble with BP being too low. When it gets too low you'll feel like shit. Light headed and dizzy. For me that's when I get down below 105/60.

I was in my basement squatting 225 for 30 reps about 3 weeks after my heart attack, so I still felt fit. That's what makes it dangerous. I didnt have a defibrillator because at the hospital my EF came back at around 35%. When squatting my heart went into v tach and I nearly died. We called 911 and they got to my home just in time, as I passed out while they were hooking up an ekg. They defibrillated me 2x to get my heart going again. Pretty sure I went into cardiac arrest.

Despite having an ef of 20%, I've been able to lift weights and do cardio. The year after my heart attack in 09 I was squatting with more than 315 for high reps and no issues.

I had a VO2 max test done so I could enter a stem cell study and results came back that my performance was "normal" for an adult my age. Lol. My ef was 25% at best!!

 

[M@NU]

okay, interesting, haha
so you had a heart attack and didnt get the defi right away but later after you got a second incident?

it is crazy how different people with heart insufficiency are. Some can barely make it 6 minutes on flat surface and others can still do extreme intense lifting..

 

[maldorf]

okay, interesting, haha
so you had a heart attack and didnt get the defi right away but later after you got a second incident?

it is crazy how different people with heart insufficiency are. Some can barely make it 6 minutes on flat surface and others can still do extreme intense lifting..

Yes, since my EF was up above 35% or so they didn't put in an ICD. They should have given me a vest. Not sure why I didn't have one. Maybe they didn't have it in 08 or since I was up between 35 and 40% they weren't worried.

A couple of days after I almost died they did another echo and my ef came back as "below 20%"! We don't know why the first measurement in the hospital was so much higher.

With guys like us, the rest of the body is very healthy. It's just the heart lacking. Lungs and the remainder of the cardiovascular system are very fit. Somehow it's able to compensate for the weak heart. With how low my ef is now, I'm no longer able to say that. Exercise for me now is horrible.

 

[Golden]

When you first presented in the hospital, did you tell them about your steroid use and did they indicate if that’s what caused this?

 

[M@NU]

yes i did.
they are pretty sure it is not the reason but it could have exeggarated the issue.
the dignosis which has to be verified right now is non compaction cardiomyopathie

 

[maldorf]

yes i did.
they are pretty sure it is not the reason but it could have exeggarated the issue.
the dignosis which has to be verified right now is non compaction cardiomyopathie

I'd never heard of that. I see it's a genetic trait like my blood clot disorder. Are you aware of which parent has it? I'd think someone else in the family might have had similar problems. With my blood clot disorder we did not know. I had my parents tested and its my mother that passed it on to me

In my case the steroids increased my risk of clots even more, and I had a prior case of cardiomyopathy that went away when I got off.

 

[maldorf]

Noncompaction cardiomyopathy - Wikipedia

en.wikipedia.org

 

[M@NU]

I'd never heard of that. I see it's a genetic trait like my blood clot disorder. Are you aware of which parent has it? I'd think someone else in the family might have had similar problems. With my blood clot disorder we did not know. I had my parents tested and its my mother that passed it on to me

In my case the steroids increased my risk of clots even more, and I had a prior case of cardiomyopathy that went away when I got off.

not yet, but i have an appointment for a genetic analysis in 3 weeks.
Well, this is still my hope - that it will get much much improved now that i am off everything (i even am on only 1/2 my trt dosage of the test gel currently. no full dosage)

 

[maldorf]

not yet, but i have an appointment for a genetic analysis in 3 weeks.
Well, this is still my hope - that it will get much much improved now that i am off everything (i even am on only 1/2 my trt dosage of the test gel currently. no full dosage)

It may improve. I hope the rest of your family gets a DNA test too. Its weird how some of these traits can lay undetected a person's entire life and they never know. My uncle and mother both tested positive and they've never had a single clot. He's nearly 84 and she is 81. We think the steroids are what set mine off.

In your case, I'm interested to know about the rest of your family. One of your parents definitely has it if you do. Maybe the parent has had no problems their entire life but you have. To me that illustrates that the steroids and other PEDs might have touched off the problems. Before this episode, you never had any symptoms to indicate heart trouble?

 

[M@NU]

I will keep you guys updated, thats for sure I guess as soon as my test reveals something they might make more tests with my family.
My dads side always had heart issues, but rather coronary heart disease which is absolutely not the case with me. My coronary artieries look wonderful according to the doc.
my dad had a heart attack at the age of mid 40's and had to get some stents.
Well, i am sure the PEDs esp HGH played a role in exaggerating the issues of my heart. The cardiomyophaty however was not caused by them (according to docs)
but lets see what the analysis etc. bring

 

[maldorf]

I will keep you guys updated, thats for sure I guess as soon as my test reveals something they might make more tests with my family.
My dads side always had heart issues, but rather coronary heart disease which is absolutely not the case with me. My coronary artieries look wonderful according to the doc.
my dad had a heart attack at the age of mid 40's and had to get some stents.
Well, i am sure the PEDs esp HGH played a role in exaggerating the issues of my heart. The cardiomyophaty however was not caused by them (according to docs)
but lets see what the analysis etc. bring

My coronary arteries have always been clear of atherosclerosis too. It was a big blood clot that gave me my heart attack. I never did need a single stent. They said my coronaries are wide open still.

 

[aphextwin]

Anyone using gear or not should be using a good dose of curcumin. Obviously the others Dante recommends, as well. It baffles me how so many people refuse to listen to his advice. It might save your day.

 

[Golden]

Anyone using gear or not should be using a good dose of curcumin. Obviously the others Dante recommends, as well. It baffles me how so many people refuse to listen to his advice. It might save your day.

At what dose should curcumin be taken?

 

[aphextwin]

@Golden, I don't look at it as a dose dependent. I'm not an expert of curcumin, but I do use the following 2 t0 3 times a day: Meriva, C3, Novasol (taking this daily), and that's it at the moment. I do like Theracumin and Longvida too. I have taken large amounts and small doses. I do notice that the source seems to be more effective that dosage.

 

[M@NU]

I took Curcumin most of my time, on or not.
Since the heart issues ive increased the dosages to 600mg bcm95 and 1200mg meriva twice daily (so 1200mg bcm95 + 2400mg meriva)

 

[M@NU]

A couple of days after I almost died they did another echo and my ef came back as "below 20%"! We don't know why the first measurement in the hospital was so much higher.

I just reread this thread and wanted to give an additional note to this part of your post.
You also have cardiomyopathy if i read correctly. (or had). this can make the measurement of EF quite difficult.
On monday when i had an ECHO, the machine showed "EF (TEICH) = 38%".
For hearts without structural issues (cardiomyopathy), the calculated EF (TEICH) is quite accurate. For us guys with structural issues, measurement has to be done "more manually" by experienced cardiologists.
The "EF (TEICH) = 38%" was measured to be around 28% by him.
i assume something similar could have been the case with you.
First time they took the calculated value because they didnt analyse everything correctly.