Topic: My story and where it is now..... - page 3. (Read 7237 times)

That is some sad story, I pray and hope you will be ok!

We once chatted a bit while playing poker, I'm sure you don't remember but I met you as a really friendly person with a good heart.

It's heartbreaking to hear you have such a serious condition and I sincerely hope you can overcome it!

Please keep us all updated and all the best to you!!

Medicine is complex. So, while further investigation is likely needed, and the right sort of questions answered, but doctors make decisions on the data they're presented. Now, the body can act in weird ways, I've personally experienced such things, which led down an investigation which basically wasn't the cause. I don't blame the doctors at all for this, and I'm just glad to hear yahoo62278 is back home. Staying in hospital gets to you after a week or so, especially when you aren't quite sure what's going on.

yahoo62278, please do follow up on the questions, and further investigation though. You need to know the rationale of their decisions, and you'll probably have to accept that mistakes were made. As long as you're okay, I think that's fine. They at least took it seriously, instead of pushing it to the side, and not taking it seriously. 

I don't know sure what this means for the overall cost, as I'm used to the NHS so it's easier to forgive when they make mistakes. Hopefully, insurance, and them owning up to it won't put you out of pocket too much. It's a little confusing the whole story here, so I imagine you could clear it up when you've got back to normal. I imagine, you haven't fully digested the information yet, considering the confusion.

Thanks for the updates though, often we forget that we're a tightly knitted community, and that users like yourself have had a massive impact on several users in the community. So, while it might seem odd relative strangers giving you kind words, that's the reason why.

Welcome home, dear yahoo62278! I don't know if it's good or bad the fact that you have been release, but I am sure it's good to be home!

Other than that, if you remember, I asked you before if you could try to get this thorough check at another hospital... What these doctors did make me fear for you. How is it possible to go from a status 2 to a status 6? Weren't all those earlier thorough checks made just to see that you really need the transplant...? How can it be possible to evolve from status 2 to 6...?

Then you mentioned the suggestion given to you by that nurse... to go like a stranger to ER... have you thought about this...? Maybe, even better, try to do this at another hospital and see what they find...?

And you said you've been told that this miracle brought you another 1-3 years. But 1-3 years of what...? Of time until you'll need the transplant...? Of life...?

I am so sorry to say, but I think that those doctors acted in a sort of shady way... I don't know, maybe they were not very experienced...? Maybe they were not very competent...? But how can you keep someone for a month inside a hospital, someone which is supposed to be a severe case in need of a transplant and, in the end, to say that the patient does not need it anymore...?

Ufff I am sorry if I bring you more questions that the ones you have. But I think that you also thought about what I just wrote here... Maybe trying to obtain a second specialized opinion would be a good move... I wish you best!

I'm seeing a lot of praise about me still posting while being in the hospital. Do you guys realize what a day in the hospital is like in a critical care unit? You are in bed nearly every single minute of the day. I had to pee laying down. shit laying down, even eat laying down.

Here's my typical rundown in a 24 hour period while being in the hospital.

Get woke up around 730 am to 1 of the residents/fellows/doctors in my room checking on me before the whole team comes in a bit later. 9 am was the 1st med passing. Anytime between 9 am and 11 am the whole team would come in and do their daily check. They would let me know the results of any previous tests and how they want to proceed as well as check me out for any new symptoms. After that, usually within an hour or so of the team leaving my room, labs would be ordered and drawn. My day to day changed a little once I was taken off the balloon pump and able to get out of bed a little, but not much because I literally could barely raise my leg from it being kept straight for 2 weeks. You wouldn't think it but that destroys your muscles. Normally between 11 am and 1 pm I would have physical therapy for an hour. When they were done, they wanted me sitting up in the chair as long as I could stand it.

That's a rundown of the morning, which was the busiest part of the day. After my PT was done, I got a little break from a big crowd in and out of my room but still had nurses in their every 2 hours checking on me up til 6 pm when I would start taking evening meds and sometimes an evening blood draw. You would think they would leave you alone after that, but nope. All night long in and out of my room taking blood pressure, temp, and drawing blood if needed.

So, with me being bothered every 2 hours or so, I have nothing else to do but try to go back to sleep or mess around online. I usually opted to check the forum and see if anything interesting caught my eye and then I'd try to get a little more rest. The hospital is the worst place in the world to try and get rest. Yesterday was my 1st day at home and I actually slept 12+ hours. My body has felt so drained throughout all this and finally I got some rest.

Now on to the healing, or that's what I hope. They have a small fear of this all turning bad and if so, it'll go very bad very fast. Otherwise, I have cardiac rehab to start soon. That's basically exercise at the hospital to try to help strengthen my heart and body. I also will start having appointments to keep an eye on how I am progressing. The struggle is definitely not over, but let's hope the worst is behind us and a transplant is a distant memory.

Seeing you here giving us update on positive development about your health improvement is nice and this shows how much love you have for this platform and also members of this platform. Ordinarily, nobody would be able to do this in anyways with the nature of their ailment when it has to do with the heart. I so much  cherish your bravery and commitment to this platform as I checked your reputation here is very high and a good one to reckon with. This shows how trustworthy you are as a person.  I will keep remembering you in my prayers and I wish you a quick and speedy recovery so you could stand back on your feet.  Please avoid heavy objects, do not bend to pick up anything. You can be moving about around your environment so as to keep you busy and that is a little good exercise. Going online too would help you alot so you do not get bored.

If you have heard of cases where using natural remedies to reduce heart failure was helpful and this is not necessarily a cure. In the past, my parents also had heart disease, but they often consumed natural medicines such as garlic, ginger, turmeric and red yeast rice, but based on the results of consultations with a cardiologist. These natural remedies are not completely curative, but what I have seen can alleviate my parents' ailments.

Once again there is no guarantee of a complete cure?
It's also not part of the advice like your doctor would, but spontaneously relaying what I saw and experienced in my parents' lives and I'm sure everyone would have had the tedium of continuing to take medication every day.

One thing that quite impressed me from you, even though your health is currently not in a normal state, you still write as usual on the forum and for me this is extraordinary. Get well soon yahoo62278

That sounds like strange advice from a nurse.  I don't know anything about the hospitals in your area, but a lot of electronic medical records are available to multiple hospitals if they're affiliated with each other.  Where I live there's been massive consolidation of ownership over the years, and if I walked into a hospital 50 miles from where I live, chances are they'd be able to see at least part of my medical record.

But all that aside, I'm happy for you despite your frustration.  I'm also not just a little bit amazed that you kept posting as much as you did through this whole ordeal.  You are a dedicated bitcointalker, my man.

it's true about a good heart rate, that is, it can be started with sports that may not be too strenuous, one of which is in the morning by cycling or jogging, which is assisted by a device, one of which is a smart watch which is equipped with heart rate control features, blood circulation and many others that are possible useful for the user.
and my advice is to avoid heart attacks, you should start adopting a healthy diet and avoid consuming caffeine-containing foods.

Get well soon yahoo62278. I lost my dad because we did not have a good medical system and whatever we had, I couldn't afford the cost. He died with lung infection. High pressure, heart problem (Three times had major attack, third one paralyzed his right body side for years, fourth one the day before he passed away). He needed to take into ICU for life support but doctor said they have another patient who have higher chance to live so they gave it to him (If I had enough money then I could had one). Next morning after having serious breathing problem he gave up in front of my own eyes. I could not do anything accept seeing he is leaving us.

At least you have your insurance and you are in a country where they have the best of everything.

There are many members here who care for the forum and you seemed to be one of them who always had the interest of the forum before anything else. You still have a lot to give to bitcointalk.

Comeback soon and be stronger than before.

I also recommend this. Based on his exact condition, there can be alternative forms of treatment as well. Like, I was having a wound near my chest from few years. I neglected it completely but once when I visited a doctor for another health issue, I casually mentioned it to him. He inspected it and suggested me an operation immediately otherwise my life will be in danger. I talked to a homeopathy doctor near by my house who gave a medicine to spread on the wound and it was gone in few days. No operation was needed in my case. It is very recommended to have second opinion for critical operations as well. I can give many other similar examples. Like many doctors these days suggest delivery of pregnant woman by operations even though it is not needed just to increase the hospital bills.

I would surely be worried about getting your heart rate even above 120 for sustainable periods of time until you figure out your exercise tolerance which might not be very great until you build up to your level .. which yeah might be a moving target as you hopefully improve, but you should not want to have any set backs come through your own over doing it... and causing damage or even suffering from an incident in which you need to be revived, whether it is through the internal device or someone having to come to your rescue and there could be damage to your heart and to your brain if you end up losing blood circulation for decently long periods of time... Of course, clotting is another issue, and they likely are attempting to transition you from sedentary state to a moving state and by the time they release you (if they do in the near future.. days or whatever it is), then they likely are going to have decent confidence that they have moved you around enough in which any clots that might have been present would have dissolved into most likely not existing.. never can be 100% sure on a lot of these kinds of things.

So then at some point, you should be eligible for exercise therepy.. maybe 30 days.. and maybe even longer.. which should help you in determining your excercise tolerance and your comfort in exercising.. .and surely, some kind of a device like an Apple Watch or a Fit bit or something would likely end up paying for itself in terms of helping you to both monitor your levels and to attempt to have some control over your levels.. of course, if there is some kind of an incident, sometimes you cannot completely control it, but if your body gets used to higher and higher levels of exercise tolerance, you are likely to get some ideas about when you might have ended up pushing yourself too much and even you might feel some of the beginning stages of instability by having more palpitations, or just feelings of queasiness. and sometimes what is going on in your body might not exactly show up in your pulse or blood pressure.. which probably they are wanting you to monitor those on a regular basis too.. ..

...at least, there can be some empowerment in being able to monitor those things, especially in the beginning of your transitioning from hospital life to home life and likely you would have goals to be self-sustaining and to NOT have to go to doctors appointments on such a regular basis, so maybe for a while it could be that you are going to the hospital several days a week, if we might consider exercise training within that, but then after several months, you might be able to reduce to every couple of weeks and then maybe even once every couple of months, once a quarter, twice a year.. .. and gosh.. that would be pretty sustainable if only twice a year, then you have truly gotten somewhere if you are able to get your ejection fraction to consistently stay in the upper 30%s.. and if you can get even higher than that, then praise the lord.. or whoever...and part of the reason they seem to take so many tests that are somewhat measuring the same thing from a different angle is that there can be measurement variance if relying on one or two tests, so sometimes you have to be careful if you might get a few tests that are showing real high left ventricle ejections fractions because there could be some measurement variance both in terms of how it was measured or they might have caught you at a time that is not very representative of your overall state of ejection fraction... so yeah of course, those stress test ejection fractions will show your measurements upon rest and upon stress.. but even there can be variance in that too depending on how well you rested or how well you have eaten or even if you are under stress.. and I am not even saying stress is bad.. but surely in lower doses, and if you are constantly feeling stressed, then that could end up having effects on your measurement but also your recovery..

......not that it seems that anyone has any kind of a convincing explanation regarding why your particular physiology circumstances changed in some ways that were not really expected, and surely it might have had to do with putting you in such a state of rest for such a long time that allowed recovery and whether your heart can tolerate going back into stress without starting to enlarge again might be something that everyone who is paying attention is wanting to try to figure out. and they might not exactly know what had triggered.. but maybe they will come up with some explanations and you can even help them in terms of your reporting back your ongoing symptoms/recovery and learning more about your condition so that you are able to engage.. and also maybe not getting into a situation in which you feel that you are getting tricked into a treatment status that you have not chosen.. of course, your choice regarding how much to attempt to learn and monitor and also to figure out the ways to get back and forth with the doctors because they can have some good intentions, but they are somewhat bounded by telling you within the standards of care what to do, and they are not going to tell you to eat low carb high fat diet, even though that is likely what is good for you.. .. and in the end, you are the one who has to figure out the balance for yourself that you want.. and I understand it can be quite frustrating to deal with standards of care that insurance companies impose including authorizations, non-authorization and then surprise bills .. what the fuck, you are not covering that?  those kind of things.  Get to strength and self-reliance so you minimize how much you need those fuckers.. even if some might be good intended.. and sure, you likely have a condition in which you are likely going to need insurance and medical treatment and options like that because it is not likely that you can just fix your situation by your own lifestyle balances that involve diet, sleep and exercise and monitoring those preventative and power building aspects...oh, and by the way, there are some functional practitioners who might not be covered by regular insurance that could help you in measuring.. but if I were you I would try to make sure that I am in a good state with my medical measurements before going to get those other outside of the system measurements.. which could take a year or maybe two years before you might want to potentially consult with some functional practitioners who will run some of those non-standard blood tests and to have those kinds of quack-potential discussions.


Nice one... hahahaha

It is really great to have these kinds of people who are willing to work through these kinds of matters.. . and sometimes they might even point out various ways that they are not going to (or don't want to) help you, which can surely be a good thing in terms of space and self-reliance, too.

I am glad to hear of the miraculous improvement in your health. We have had issue when people become whole defiling all medical reports, but it's good you are still on medication. It could be possible that you are healed and might be the end of your pains and sorrows.

Your health conditions have taught be to cherish every single healthy day of my life. For now sir, just cherish every single day you have. I am also pleased to hear that you have a partner that is standing by you in this challenging period of your life. Please extend my greetings to your wife and tell her that a young boy from the rural area of Africa is acknowledging her love and care

Your best medicine now is: rest as much as possible!

Of course it shouldn't stop. Beforehand, you should take some calm walks around your neighborhood, and if necessary, avoid picking up heavy objects. Doctors must have said this many times. But you know what the doctors didn't say?

Sit down for a few hours a day, browsing BitcoinTalk! He doesn't make physical efforts, he gets distracted, and he's not alone! 

I'm not completely going off all medications. They too me off the milrinone which was a medication that was helping my heart function at a higher rate. Helping with the squeeze. They took me off that in order to see what the numbers looked like once the med completely left my system.

They have reintroduced the meds they took me off of when I came in here. Entresto, spironolactone, jardiance etc. They def are not taking me off all the medications, that would likely lead to very bad circumstances or rapid decline. I will get another echo in the morning and hopefully be released. They will still need to remove my pic line before I go as well.

I have been out walking the halls a little and I am a little concerned with how much I should push myself at home. My defibrillator goes off at 180 heart rate and while walking the halls I have been spiking 160 heart rate.

I think that it is great news..

Fuck getting another heart if you can avoid it for as long as possible... and if you can keep your ejection fraction up above 25% and maybe you can even get it back into the upper 30%s or better.. that would be great.  The tests do not necessarily lie, even though sometimes doctors will sometimes try to push borderline cases in a direction that they want.. but if you are not getting ejection fraction levels below 20% on an ongoing basis, it seems unlikely that you even qualify for another heart.. and who wants that shit anyhow.. I don't think it is a great idea to get another heart unless you have no other choice.. so that criteria seems to be correct in terms of the level of loss of functionality that you need.. and sure there are other ways to measure loss of functionality.. such as instability and lots of palpitations and arrhythmias.

There's nothing wrong with getting second opinions, and it is not even likely that you would need to go to the ER or to fake symptom... and sure upon exertion you might get chestpain too.. but if you are able to improve your ejection fraction,  you likely are able to actually feel that kind of performance improvement... especially if you get in the process of exercising regularly and perhaps even pushing yourself from time to time, but start out with something like 20 minutes per day of walking if you are able and to work your way up to higher amounts. and then just continue learn ing about yourself and your condition and even learning what the various results of the past mean and how they have improved... in various ways.

At first I thought that you had a lot of ischemia, but it is kind of sounding like they said that you had an enlarged heart that was causing your heart not to function and ischemia and blocked vessels and dead heart areas is not the issue.. so if that is the case then that would be a good thing... so yeah, if you had an enlarged heart that was causing loss of function and it is no longer enlarged and it has shrunk back down to normal an is now functioning properly, then that explains why it was not performing.. and there is going to be some ways to attempt to prevent it from enlarging again.. ..

I would be a little worried about completely going off of heart medicines, even if you might be able to wean yourself off of them, because some of those heart medicines lessen how much the heart has to work, but if you are actually not overly working your heart and it is adequately recovering without going into some bad kinds of states of arrhythmia or  other negative things that could happen.. like exploding or even suddenly stopping, then it could be possible that you could work back up to normal ejection fraction levels.. and of course, with the balance of the three most important aspects of diet, rest and exercise, and people are not even going to agree about that.. With diet, I personally believe in all natural and but also high fat low carb.. keto or carnivore.. but of course, people might not agree, including that some people are more tolerant of carbs than others, but staying away from sugars and some of the seed oils and other various kinds of processed foods should be something that people recognize to be a good thing..

..but you ultimately want to be hoping that your heart continues to get stronger without reverting back to either enlarging or even if there might be areas of ischemia..and that part is not clear to me.. if you do not have ischemia.. then that is really good, it would largely be a matter of getting the heart back to pumping harder and being able to take stress periods without overdoing it.. because then you might need to have a defibrillator present or just be around people so that if something happens they can give you CPR.. and no one wants that, if you can work up to levels in which you are having more confidence that your heart is not going to spasm based on your unwittingly overdoing it... You can also make sure that you buy some modern gadgets to monitor your heart rate.... so you can kind of keep track with the passage of time, and the more information that you have about your own performance and also about other aspects of your specific condition, then the more armed you will be when you are going in for various follow up appointments or even if you choose to have a whole additional work up at some other facility.. .. which you have the right to do that without faking any kind of emergency... and an emergency could come anyhow, whether you fake it or not.. and no one should want that... unless they are around people who know your condition and are willing to help you to get help quickly..

Undoubtedly, having another medical opinion can be an asset.
Not wanting to call into question the suitability of the medical team that is with you, sometimes another team mediates by having a different perspective on your case and even suggesting other more interesting solutions for you.

Take advantage of this improvement to analyze other options more calmly and gain greater knowledge about your case.

I'm excited to hear about this and wish you more better results ahead, i will also go inline with the advise the nurse gave to you to concerning your going to the ER for reaffirming the condition to be ok and back to normal as expected, it's always good to very what one has been told the second way, not because you don't trust their delivery capacity or level of professionalism but one has to be reassured of the whole condition to be the same and exactly as expected  by consulting other means, you will never had a better yesterday and all your heart desires would be granted concerning this because you're coming out of it already.

It's funny that you say this because my nurse this morning and I just had a chat. She asked me to explain to her why I am in here. She wanted to make sure that my story matched up to what's in the system.

So I explained my case to her. She asked my thoughts and I told her I didn't know what to think really. Her advice was to wait til a Friday after all the doctors have gone for the weekend and go into any ER. Just go in and complain of chestpain and don't tell them shit. They won't look into anything but will do a work up to see what they find. Then I'll be able to find out if this hospital and doctors are lying to me. She said it would be Tuesday before they spoke to any other doctors and by then I'd already have some answers and know whether to trust what's going on currently.

I'm just concentrating on the good news and I'm glad you're feeling better. Certainly not all problems have been solved yet, but at least your heart is doing a little better and you don't need a heart surgery for now. Hopefully it stays that way for a long time. I keep my fingers crossed for you.  

I'm glad you're better, but it's worrying that nothing has been finally solved, or at least nothing has been officially done to specifically solve your problem.

have you thought about doing a complete cardiological examination in another neutral place now? is it a good enough move with your condition, to move you from level 2 to level 6 or do they just want to postpone you for another time?
If I were you, I wouldn't relax, and I certainly wouldn't blindly believe everything you hear from the doctor. As far as I understand, your insurance should pay for the transplant, I believe that the most important thing for them was that you somehow recover so that they can avoid big expenses.

I don't want to be negative, I'm just in favour of exhausting all possibilities.