Quote from: JayJuanGee on Today at 04:02:24 AM

In the past several days, I had been considering whether to respond, and if so how? Or even how much to say about my own personal experiences in weighing related questions.. but of course, each of us have our own particulars that we might not want to say too much, yet I still consider that your story helps in the sense that many of us have got to know you in various ways over the years, and surely some members have had more interactions with you than others. My path with you has not crossed too often.. yet I can still relate to a variety of the aspects of your situation..

Surely I feel bad for your situation Yahoo in terms of the relatively early age in which you started to suffer from symptoms (such as close to 40), and then already going through procedures that did not fix the then condition and then the then condition had gotten worse and worse, as you mentioned.

These kinds of questions that you raise are not easy for any of us in regards to how much we should attempt to account for the advice of experts in regards to aspects of our health and our energies, and they surely do not always lead us down the right path or necessarily present information in a way that helps us to consider the matters in front of us and surely some of the information in regards to the diagnosis, the symptoms, what to do or even what tests to run or whether intervention might be necessary may well be unknown by the various health professionals too absent further tests and then surely complications with medical insurance coverage and/or co-pays is present for a lot of folks too at least those folks who have potential access to decent medical care.

Many times we also might rightly or wrongly conclude that our body is going to heal itself, and we may also have feelings of invincibility though when we suffer from a few health issues, we sometimes will learn more regarding limitations to both self-healing and in regards to invincibility and also various aspects in realizing our mortality may well also sink in only after finding out about some severe condition that we might have that we had not previously considered.

Sometimes we also might not know what we dont know.. which seems to also be part of your repetitive point in regards to your suggestion to get checked out.. and maybe even diving further into investigations that might be necessary, sometimes for some conditions.

Surely there are other ailments besides ones associated with the heart, yet the heart has some very special characteristics (and limitations) in terms of how well that it may be able to heal itself.. and also that in can start to develop in a direction that attempts to compensate for its limitations (especially if it had been injured) and then ends up leading to its own weaknesses including growing too large in one direction, thinning of the walls, blockage of blood flow that contributes to possible irreversible ischemia (tissue death), scarring, palpitations and perhaps other related difficult to fix matters.

At the same time, if the ejection fraction on the left ventricle (which pumps blood to the whole body) is not staying above a certain amount (such as 30%, which is still lower than normal) then there will be shortness of breath and difficulties of the blood to circulate around the bodyand so in some sense, quality of life already is going down once the ejection fraction gets to those kinds of low levels because of inability to exert yourself, easily tired, shortness of breath and even chest pain and tightness, so it becomes more and more difficult to keep up muscle mass too (and stamina) which is also more difficult to keep up muscle mass as any of us gets older. The older we get, the more difficult it is to build and to maintain muscle and strength and even to burn calories efficiently.

So normal ejection fraction is between about 50% and 75%, and frequently those eligible for heart transplants would be unable to keep their left ventricle ejection fraction above the lower 20% range, and sure of course, there may well be some other criteria for heart transplant eligibility besides just looking at ejection fraction.. such as just being able to see that a heart is not really stable or recovering.. so getting on the heart transplant list is a pretty BIG deal, and getting into such a state that the Doctors put you in a kind of expedited status also tells a lot about the severity in which they consider your current heart to NOT be very much able to help you with even bare basic exertions, but any of us should be able to imagine that the lower the ejection fraction, then the more likely that shortness of breath, exhaustion and even other symptom kick in at even lower levels of exertion.. merely going for a walk, or eating some food, and then we may well frequently have seen folks with lower levels of ejection fraction needing to lug around an oxygen tank or even having to wear a defibrillator to shock them in case their heart goes into irregular rhythms and there are heart pumps too.. but surely seems scary to have some of those artificial mechanisms implanted and bodies will frequently react towards having internal devices implanted, too.

Sure the punchline advice may well be to attempt to inform ourselves with more knowledge about our conditions and if there might be some things that we need to know in order to make more informed decisions in regards to our health and conditions that we might have or that we might develop and do not engage in conduct that ends up leading to damage that might be irreversible, but I still have some difficulties kicking ourselves too much in regards to I should have done X, Y and/or Z.

But the punchline is still correct in terms of attempting to learn about our condition, and maybe sometimes needing to get tests and perhaps second opinions and also attempting to interact with the doctor more, and sometimes it is not easy to interact with the doctor because we ONLY have so much time to interact during an appointment so we should attempt to prepare ourselves prior to our doctors appointment and maybe researching so that we are able to interact, even if we might not feel that we have a lot of energy, and if we do not prepare ourselves with decent questions, they may not be able to spend time talking with us, or know where to possibly refer us or what tests to run.

.and yeah if we do not follow-up with Doctors appointments after we learn about a condition that we have, then we are likely NOT interacting sufficiently enough about our own condition or our own health.. so there is some of that ignoring of the problem(s) that could be happen with anyone including damage and/or irreversible damage, which surely I appreciate that you (Yahoo) had identified that as one of the areas in which you feel that you could have done better. .. even though I still try to consider that it is important to NOT kick ourselves too much about these kinds of bygones, what ifs or even blaming ourselves.... and each of us should attempt to be informed about any conditions that we have when we go to the doctor, and maybe if we are having some difficulties advocating for ourselves and asking questions and interacting with our doctors, we might need to ask that someone who we feel that we can trust attends appointments with us during our doctors appointments to help to advocate for us and/or to make sure that we are sufficiently advocating for ourselves, and no matter what none of these kinds of balances are easy for anyone.

I know that I am blabbering on somewhat, and surely you realized a certain level of risk that you might get some responses that may or may not cause comfort.. .and surely not even easy to figure out how much to say.. beyond even what other people have said

I think that the better of scenarios might be that you are able to get a heart transplant within the expected time-frame in January or maybe February at the latest, and then within a few weeks, you able to start a blog or a forum thread on the bitcoiner with a new heart topic.. that may well be showing progress and recovery.

So maybe the thread might be: Whats it like to be a bitcoiner with a new heart? and then such a topic (and subject matter, even though usually overly personal) will have become fair game, no?

Once you started this thread, the cat is out of the bag, no?

So from here on out, many of us will likely be hoping and perhaps even expecting to be able to participate in trolling you within a dedicated thread on such bitcoin and heart topic no pressure of course, but it would likely be a good hope to then have the "bitcoiner with a new heart" thread last for many, many years..

maybe until 2072? A 50-year long thread I will hope. .

Although I dont expect to be around that long. . but you know how so many of us tend to have beliefs that we are going to live forever, too

I will respond to everyone else I have missed tomorrow, but I wanted to respond to this particular post while everything was fresh in my mind.

You seem to be fairly educated on heart conditions in terms of ejection fraction and implantable devices and such. Maybe you or someone you know has been through this?

I posted the short version of my story as it was already getting pretty long and most people see a book and auto skip reading the whole thing. I felt like the more important message was make sure everyone is getting regular check ups vs here's all the crap I've had to deal with.

Going into a bit more detail now. Prior to my 1st open heart surgery, I had undergone multiple tests including CTs and ultrasounds and right heart catheter which were checking the size of my aneurysm as well as my ejection fraction and the pressures in my heart. 15% was where my squeeze was prior to the surgery and on average most people are in the 55% range at my age. Shortly after the open heart(3 months or so) I had another ultrasound performed to check my ejection fraction. I had moved up into the 30% range and we thought my heart was starting to heal. Less than 6 months later another ultrasound was performed and a heart catheter a few weeks later. My squeeze had dropped back down to 15%.

Directly after the heart catheter was performed, I was admitted into the hospital. I was there for a week getting a workup for a heart transplant. I got 6 months' worth of tests done in 9 days. I had been approved to be on the list at status 4 in August. Then my insurance jumped in and made me go to 1 of their providers. That made me have to get alot of testing redone along with more added. I have a defibrillator implanted in the left side of my chest. Last Sunday I also had 28 teeth pulled. Now I'm basically getting through the holidays and the big part of the process begins. I'll get another right heart catheter and be immediately admitted. I will also get some sort of pump implanted. Being as I have a mechanical valve, they will not do a normal heart pump.

Who knows if I will start another thread discussing the transplant or the length of time I may live. Who knows how many would actually be interested in knowing. I'll cross that bridge at a later date.