Im desperate
18 years old
160cm
45kg
Male
Medications: procysbi, tritace, betaloc, furon, taruza, ebrantil, prograf, cellcept, prednison, rocaltrol, zemplar, 3 types of calcium, evrenzo, controloc, vitar soda, pantoprazol, algifen, letrox, growth hormone, aranesp, mircera, zolpidem.
Ocassional smoker, but use nicotine pouches
It would be too long to list all my medical issues, but the most important: metabolic disease "infantil cystinosis" from birth (diagnosed age 2), kidney failure, low thyroid function, genua valga surgery (2021), PEG (when i was little), hemo dialysis (2023), fistula surgery (2023), kidney transplant (2023), first rejection after 5 months, kidney failed completely in like 2 years, but i coukd function for a long time, removal of lymph nodes in the neck (2025, peritoneal catheter placement (12.8.2026).
High blood pressure (had to be hospitalized for bp 230/150, multiple times), severe anemia, extreme low calcium, high phosphorus, high potassium, acidosis, pain etc.
To get to the point, i have this problem which first started at hemodyalisis in 2023, previously thought to be anxiety and panic attacks, which is not true, had taken ssri's, sleep meds, and benzos - got addicted to rivotril, because it was the only thing that helped and i overused it, now clean for 2 years?
One time it got so bad i thought i would die and called an ambulance (got 2mg Apaurin iv.) and it helped. It just come and goes, i have it long-term, when it isnt that bad, sitting, laying down or bending forward helps somewhat, when it gets bad nothing helps and i just have to endure it. I have it everyday, but sometimes its like an attack and it gets super intense. I cant describe it clearly but it is pain under my rib cage, it is so uncomfortable and so bad feeling i would describe it best as pain..like if my insides catch on fire, or infinitely worse acid reflux, its so extremely bad and i cant do anything other that laying down and even then it still bad..when i stand up or sit it gets worse. Pain meds (even opioids doesnt work), today it was insane and even diazepam, neurol and algifen did nothing. Its not from the heart 100% and doctors did not and do not want to help me with it, but some actually nice doctor he thinks its from the stomach and its maybe from the number from pills i take. It doesnt have any specific time/things when it starts, doesnt matter. The worst part lasts about 4 hours and i get really hot when it does happen. Only thing that helped me in the past were blood transfusions, it then dissapeared for 2 weeks, but came back again.
It got to a point i dont wanna live through another second of it, i would rather not be alive, than to experience it. Im lost and desperate, worst thing i ever experienced.
If someone could help me, i would be the happiest person alive.
Thank yall so much!🙏🏻