Topic: My story and where it is now..... - page 5. (Read 7176 times)

Dear yahoo62278, your update brings much sadness. Your situation reminds me of medical system from Romania. Romania has two medical systems: one is public and one is private. Those using public medical system have to face insalubrious facilities, hospitals infected with various germs thus you go there with a disease and leave having another one. The most important aspect is that without consistent bribing nobody even looks at you. Private medical system has modern facilities, does not accept any kind of bribes, but it's full of incompetent employees, from hospital managers to doctors, nurses and so on. And, as a plus, it's so expensive that only few people can access it. Practically, wherever you go you have to deal with some problems that you never heard before...

Besides, your case also reminds me of a 2005 Romanian movie, named The Death of Mr. Lazarescu. According to imdb, the story is about "Mr. Lãzãrescu, a dying old man, is shuttled from hospital to hospital by a loyal paramedic as doctors refuse to operate and no one can agree on a diagnosis.". Spolier alert -- the man dies in an ambulance, while being carried from a hospital to another one. Again, all happened because incompetents working in medical system.

I did not think that such cases can happen in well developed countries, such as U.S. (I believe you are from this country). The way you are treated inspires me two things: either there are also incompetent people or they are looking for a bribe... Maybe you can try to be moved to another hospital...?

I'm sorry to read it. It's just incredible. Basically, it means that now you don't need heart transplantation that much as you needed week or so week ago. How it's even possible? How they can play with people in such way? I knew that US medical system is far from being perfect, but I had a bit better opinion about it until your post. In my country we often criticize our medical system (not without a reason), but I can't imagine such thing happening in my country.
Stay strong yahoo!

Crazy... but I am sure they will charge you real good for this two weeks of medical circus show games  
Any grain of faith I had in our modern medical system and doctors is long gone, but I still want to believe there are few good people who care more about patients, not just about money.
However, don't give up yahoo, everything will end up good in the end, just don't lose your nerves on this and try to remain calm as much as possible.
I am not supporting anything illegal, but you can better understand why many people try to find transplant organs in grey area from shady source...

**UPDATE**

It has been 16 days, and I gotta say I'm pretty annoyed with the process. To anyone who is looking for a transplant now or in the future, make sure they explain everything to you. Otherwise, you will be extremely frustrated if something g changes or doesn't work out.

Now let's explain. I was admitted on Jan 4th and as I already said , it was under the pretense that I would be a status 2 if I got the balloon pump. Well, they did make me a status 2 but they failed to tell me that my status only lasted 2 weeks. What the fuck kind of bullshit is that??? The ignorance doesn't stop there. Last night after they informed me my status expires today, they had to decide how to proceed.  The options given to me were agree to an LVAD( pretty sure that's what it's called) or they would check my numbers and see if they could renew my status.

They had a meeting within the department a few hours later. I assumed they would be renewing my status. I was wrong. My nurse came in my room and asked me if anyone had talked to me about any procedures because I was listed in the computer as NPO. That means no food or drink after midnight. Of course Noone had talked to me yet.

A couple residents came into my room a few hours later and explained to me that I was having the balloon pump removed today and having a catheter implanted in my neck called a swan. I will be dropped down to status 3 while I have the swan. Then next Wednesday I will get the balloon pump put back in and go back to status 2. This is their way around the transplant rules I guess.

Anyways, this morning at 7am they came and took me to the cath lab. I got the pump removed and cath implanted as discussed. While I'm back in my room recovering my coordinator came in to explain everything to me as I requested.

Not only am I not a status 3, they moved me to a status 4. She said my numbers were just enough to keep me from status 3. On Wednesday they will check my numbers (they will be checking them daily) and see where they are. They may do the balloon pump, or may end up sending me home.

I'm a bit pissed at this point and kinda feel lied to. I've been in here for over 2 weeks for possibly no goddamn reason. It's a total fucking circus dealing with this shit. They know I'm sick, they know I need a transplant,  but they have to play the numbers game with the transplant committee.

You are an asset to this forum. I pray to god to give you strength to fight against these hard times. All the prayers of the forum members will not go in vain. Waiting for a positive update from you any moment.

Just think positive, be patient, recover and get back to ordinary life dude.

As long as you stay positive attitude towards your health problem, you will recover. As soon as you start to think that is incurable and you wont recover - you are done.

Get well buddy.

This message regarding the 2-4 weeks is now 3 days ago and therefore the 2 weeks will be reached pretty sure already.
This means that good news could come at any moment (or day).

And even if it really takes the complete 4 weeks that were mentioned as the maximum, you have already done more than half!
It is certainly very hard and as an external person not imaginable but maybe my text (and maybe your answer to it) can shorten the waiting time for the next step for you a few minutes

Stay strong yahoo62278.

My tears keep flowing from my eyes right now, I'm sorry to hear about your condition. I suddenly remembered that you are the campaign manager on my 1st application in Signature campaign way back 2017. It was my first time part time job that I did in my life so I will never forget about it. Actually, I do not know what to type and what to say because tears are still flowing from my eyes; maybe because I keep remembering my father and my mother who both died because of cancer wherein, I experienced the biggest obstacles that I faced in my life. I can't fully imagine the pain that you are currently experiencing not only physically but also mentally. Be strong! I'm sure that you can manifest your Desires. I'm gonna visit this thread everyday to have some updates regarding of your health. You can also try some self-hypnosis that you can use for you to heal faster. We'll wait for your full recovery.

"WHATEVER THE MIND OF MAN CAN CONCEIVE AND BELIEVE, IT CAN ACHIEVE"

I just now saw your post! I'm really sorry about your situation. I can't imagine what you feel, because I've never been in that situation. But, believe that I wish that everything will go well. And when you least expect it, you'll already be walking in the most beautiful park in your city.

I can only guess how frustrating it is. But they're right, it's a mental (strength) game and you have to master it.
Keep your mind busy, no matter with what, TV, movies, games, bitcointalk, name it, and the time will pass easier. The busier the mind is, the less the bad thoughts and the easier the time is also passing.
And the good news will come when you least expect it. That's how it usually goes, at least in theory. I am certain that in reality it's not this easy, but you can try...
Good luck, and may the good news come very soon!

I keep checking this thread on daily basis and i feel good seeing you always active here is giving me much positivity, i may not be explaining my feelings well and i can’t really show you how i got effect by you in a very good way. I like the way you do things and your strength and good energy around and I’m sure everyone here is praying and hoping that everything will be better for you and that you get healed soon, i remember passing tough days where you will be more focused and thinking way better  than when you are doing okay and normal ( probably it’s the same for you) and thinking more than usually do with a wide picture of everything.
I hope that you keep updating us and also rest well and be sure that everyone is behind you, none of us here probably met you in person but we all are sure of how great you are even people you had conflicts with them before won’t disagree about that, you earned so much respect from your actions. Get better soon strong man

They put wedges under my bed to turn me 1 way or the other and I also have physical therapy at least once a week to work my muscles in bed. Should be no bedsore issues and not much muscle loss as they are staying on top of it.

This kind of reminds me of a "stuff you should know" podcast that I recently listened to on the topic of Therapeutic Hypothermia.

https://overcast.fm/+4MLxcXG8w

One thing that was brought up regarded how it seems that humans have more difficulties in terms of muscle atrophy if they are inactive for a long time, as compared with some animals that do not seem to have such issues when they go into some state of hibernation.  So I was considering that in your case, they are hoping that your immobility (while waiting for a heart) does not last long enough for atrophy to be an issue, even though bedsores could develop more quickly if they do not adjust your weight distribution and pressure points on a fairly regular basis.

I can see why your mind might race, and personally as a habit (personal preference) I don't really like television very much, even though I could see that I could get sucked into it and I might consider all of the good movies that I had never watched and so I could end up on some movie binge.. or then like GazetaBitcoin mention, I might start to consider all of the good books that I would like to read, but never really feel that I can just sit down and read like I was able to do while I was in college... and even though I do not like video games, yet part of the reason is that they can be so addictive, but if I were to be immobile, I might change my hobby (and my fear of addiction) in order to just do the thing that I would not usually do... and then start exploring those addictive games that some people play for weeks and months on end without properly eating or sleeping...

I have not stopped thinking about your since the time I have read your post - my prayer and good wishes on your way.
Please say strong and don't give you - we will keep coming to forum to know if your are alright.

Just saw your thread bro. sorry about all the unfortunate things. I wish I could help financially. but My prayers are with you.

Get well soon old friend

I guess it must have been hell for you just being stucked up in a particular place for so long waiting for a transplant.  I know it is very much boring as you have no option than being in that state but I believe it is for a purpose you are asked to be there. I know these are part of the procedures involved in surgeries so as to gain balance and good support while the diagnosis is ongoing. Please permit as I am not a doctor but I believe  soonest your donor match would be seen for your transplant. Do not be worried because in the nearest time you will soon be fine and be able to start your work again. I am looking forward to to seeing you back on this platform very much active and dedicated as you used to be here doin your best to get things rightly done with all form of cordiality.

I'm hoping to hear good news sometime this week. They said on average 2-4 weeks and we are nearing the 2 week mark. Would be nice to get this process to the next step. All I can do is wait though.

I can only imagine how it is for you to wait while not being able to move at all. I waited for my transplant for approximately two months while being home and it wasn't fun at all even though I wasn't bed ridden like you which makes situation worse. The most annoying part for me was that everyone around me was worried and scared and for some reason I was completely calm and 100% sure that everything will be fine. I guess survival mode kicked in and you have no option really other than psyche yourself into positive thinking. I hope its the same for you as this approach helped me a lot. Anyway, hang on buddy!


Oh lol, I sure hope he won't have the same experience with one of the nurses as did the poor James Caan in that movie.  

The nurses come in and put wedges in my bed every so often to keep me from getting bed sores.

Other then that, I have to keep my right leg completely straight. That has the balloon pump going through my groin and bending my leg can dislodge it.

Can you at least change your body positions, and move legs up and down?
Last time I didn't feel so good I had to be in bed for almost a week, and it was not easy to do nothing and it must be 1000 times harder for you, but praying could help you with negative thoughts.
I don't want to compare this with you and I don't know if you can watch movies, but your situation reminds me a lot on old movie called Misery from 1990, with James Caan and Kathy Bates.
I just hope you don't have any nurses to take care of you like it was done in that movie
Hold on buddy, I wish you all the best and I hope to hear you walking soon enough.