Vivere con la FSGS
Johnathan Grande, FSGS Warrior
Come molte malattie rare, la glomerulosclerosi segmentale focale (FSGS) è piena di sorprese, ma la sorpresa principale si verifica spesso alla diagnosi.
When Johnathan received his diagnosis, he was in high school, an athlete, and a member of the football/basketball team. It never crossed his mind anything was wrong until his blood tests from his routine yearly physical revealed he had high protein, and a biopsy confirmed he had FSGS. In college, Johnathan rarely had symptoms, so he did not spend time thinking about his kidneys or following up with his kidney specialist. Then, his disease surprised him again, and he passed out while with a group of friends, due to lack of hydration and fatigue. Milder symptoms started to occur dealing with bad fatigue and nausea, which was interfering with his life, which led him to reconnect with his kidney doctor.
Unfortunately, after years of not tracking or paying attention to his condition, blood tests after college revealed his kidney disease had progressed. Johnathan’s incident from when he passed out really made him focus on his health due to the life changes that were occurring. Since, he has changed his lifestyle habits and behaviors focusing on his strict diet, physicality, and mentality. Now, Johnathan is active in sports, coaching 7th and 8th grade basketball, but still has questions about the future, especially whether he will need to start dialysis or undergo a transplant. To deal with the emotional stress of waiting to see whether he gets a donor, and what his life will look like if he does, Johnathan practices yoga and plays basketball. Yoga not only helps him move on emotionally, but the stretching helps him deal with the flashes of flank pain he sometimes endures.
La sorpresa di Karen fu un improvviso aumento di peso, e stava trattenendo così tanti liquidi da diventare estremamente gonfia e scomoda. Sapeva che c'era qualcosa di veramente sbagliato perché stava guadagnando così tanto peso - 60 libbre - anche se non aveva appetito e non poteva mangiare. Dopo una visita al suo medico, che ha condotto delle analisi, ed è stato scoperto l'alto livello di proteine nelle sue urine, Karen è stata indirizzata ad un nefrologo, che ha condotto una biopsia renale per confermare che aveva la FSGS.
Dopo essere stata finalmente sottoposta a un trattamento che l'ha aiutata a ridurre l'accumulo di liquidi, è stata in grado di perdere 40-60 libbre di liquidi. Karen sentiva che le cose erano sotto controllo, almeno fisicamente.
However, Karen felt like she had a different life than before, and needed to cope with this ‘new normal’. Did she do something wrong to deserve this? As a divorced woman, she was alone, and often felt the need for someone to turn to, and luckily her family was there. She also recognized her need to talk to a trained counselor, so she posted on Facebook groups asking for recommendations for a therapist. She wanted a female black counselor, whom she felt she could relate to, and soon recommendations came in – and Karen found the ideal counselor, who she still sees. Although she gets most of her information from her doctor, she does turn to some Facebook groups and is looking for more support groups that could help her.
Karen, like Johnathan, also experiences severe fatigue at times but lets herself take it easy when it happens. If she can’t do something one day because she can’t get out of bed, so be it. Living with FSGS and dealing with her changed life made her determined to help others, so Karen went for training to become a peer counselor. She is determined to overcome any challenges thrown her way and is always looking for more information to build her knowledge about her condition.
Sia Johnathan che Karen hanno potuto continuare a lavorare, e sono in grado di lavorare da casa. Per altri con FSGS, come Talanda, andare al lavoro non è più un'opzione dopo la sua diagnosi. Come addetta alle vendite al Walmart, non aveva l'energia per stare in piedi tutto il giorno e, con la minaccia di contrarre il virus, ha sentito che era meglio per la sua salute stare a casa. Si considera fortunata ad avere il sostegno di suo marito e della sua famiglia. La sua unica paura nell'adattarsi a vivere con la FSGS è di diventare un peso per suo marito, cosa che fa del suo meglio per evitare. È stata in grado di affrontare i sintomi della FSGS, come l'affaticamento, e le tensioni emotive di avere la condizione. Come dice lei, "Per me è importante avere la famiglia, la fede e l'amore intorno a me. È ciò che mi fa andare avanti".
