u/Fast-Philosopher-356

Posting this took a lot of my remaining energy I have. My life is ending very quickly and I am trying my best to accept it. But looks I am not able to accept it since I have always been a hopeful person.

Has been completely on clear liquids for 6 years , due to my SMA(severely compressed duodenum in my case so it also leads to gastric blockade and all the other issues like regurgitation, unable to swallow anything, vomiting immediately after swallowing, blood in vomit), Nutcracker Syndrome(severely compressed renal vein with blood in urine), Severely Damaged Vagus Nerve(controls gastric system, heart rate, etc) as well as Achlasia(esophagus paralysis)and all the issues come alongside it due to life threatening malnutrition(even protein, carb are at 10% RDA, extremely minimal vitamin and minerals), electrolyte imbalance and multiple organ failures.

Proper Diagnosis was done way too late after wrong treatment over years. Doctor's who were unable to diagnose gaslighted me to no end and constantly gave me wrong medicines which destroyed my all my hope of survival.

I travelled to a different city in my severe condition, that's where it was diagnosed. When I read my medical test reports, my life ended then and there. It was too late and I was left on extremely expensive unaffordable processes to survive for more years. And being financially weak, it was not even possible. And also I lost trust in most doctors over it as well due to the series of events.

Last two days things gone bad to worse and my life is ending very quickly because I am severely dehydrated and been starving for a week now since I have been absolutely unable to swallow water even when spoon fed which was my only go to method for survival before. Things even got worse after my gastrointestinal bleeding started again and been consistent vomiting blood for last three days. And my vagus nerve is also constantly contributing to it by irregular heart rate. Sometimes insanely high and sometimes Insanely low. Unable to move. Fainting even when in bed. I don't even know what to do at this point. It's such a dreadful end to life. I am not able to handle the suffering anymore actually.. My BMI is around 9.5 now.

I did a lot of research over the years for last 6 years still couldn't find a hospital which handles multiple complications together with care and maybe increase my lifespan a bit more. I did have extremely bad experience with both hospitals and doctors who did wrong treatment before it was finally diagnosed. Since the illnesses are extremely rare, so not much advancement has been done.

Even the hospital which actually diagnosed my issue was very money minded, very small hospital and had no facilities and knowledge regarding the complications of multiple issues together. Had only one laparascopic doctor. No vascular doctor, no nephrologist, no advanced nutrition doctors, no gastro neurologist which are absolutely essential in my issue.

I did found only one patient in 2025 in India which recently got published who had both SMA and Nutcracker. No other extra complications like me with vagus nerve.. It was in AIIMS.

So I need a suggestion from you guys. What should I do now?? Should I try to go for final try??? That to I don't know how to go since I have no one here with me...I am completely alone in this regard..Only my Mom cares about me. But she herself has health issues....if I travel , I cannot travel conventionally. Probably will need an Air Ambulance.. I don't even know how much Air Ambulance cost. I did check for some hospitals which has all the facilities and deals with terminal extremely rare chronical issues. And I don't even have funds to probably try for it. Some smaller advancement has been made in last 6 years. Since even the smallest of experimental methods are extremely expensive. I will probably not be to able to afford it either.

So if you guys have any suggestions on what I should do please let me know. Any suggestions related to doctor, hospital, any group which may help feel free. I will try my best to read all of them. I struggled a lot typing all of this. I am struggling to keep my eyes open as well. So Should I try for the last time with whatever I have to hope for surviving a few more years??