My cystinuria and me.
Hello, I am Nathalie, Venezuelan, married, 40 years old and clinical psychologist.
My medical history began in 2004, at the age of 23 years with the following symptoms when I woke up one morning, I felt a very intense pain in the abdominal area that I almost fainted, and this prompted me to seek specialized medical assistance.
Once I was prescribed rigorous tests, a large stone in the shape of a coral (staghorn) was detected. For its removal, I underwent percutaneous nephrolithotomy surgery. After one year, the stones were reproduced, which warranted a second percutaneous nephrolithotomy surgical intervention. After six months I resorted to a new surgical procedure of this type.
In a period after the aforementioned interventions, I had kidney studies and cystinuria was diagnosed, they indicated potassium citrate, thiola, di eudrin. A period of 6 years elapses, until a new surgery, since I presented a strong pain.
At present-day, 6 years have passed without surgery, I have not been able to carry out studies or exams because of the socio-economic situation of the country and the personal one, I have not been able to continue taking Thiola, or its acquisition in the USA.
What do I do? I do not consume junk food, red meat, soft drinks, substances with dyes, but I drink plenty of water and fluids, I try to be in good spirits, be positive, strong, optimistic, a warrior, and I try to support myself in the love of my closest family who know about my day to day and about my beloved doctors who care and are always pending.
Especially in the hardest days, to think that everything will be fine, that everything will pass and we will not suffer. we are very few who suffer from this rare disease or condition, we may not be understood but if we must bear in mind that we are strong, that we are warriors, be positive, drink a lot of water and we are going to share our stories, share in such a wonderful group that helps us feel that we are not alone in this.
Thanks for reading my history.