Living with FSGS
Like many rare diseases, Focal Segmental Glomerulosclerosis (FSGS) is full of surprises, but the main surprise often occurs at diagnosis.
An athlete’s unexpected diagnosis during his yearly checkup
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 will undergo 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.
A shocking revelation after a sudden weight gain
Karen’s surprise was sudden weight gain, and she was retaining so much fluid she became extremely bloated and uncomfortable. She knew something was really wrong because she was gaining so much weight--60 pounds worth--although she had no appetite and couldn’t eat. After a visit to her doctor, who conducted tests, and the high protein level in her urine was discovered, Karen was referred to a nephrologist, who conducted a kidney biopsy to confirm she had FSGS.
After finally getting put on a treatment that helped reduce all the fluid buildup, she was able to lose 40-60 pounds of liquid. Karen felt like things were getting under control, at least physically.
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, and 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.
The importance of having a strong support system
Both Johnathan and Karen have been able to continue working, and they are able to work from home. For others with FSGS, like Talanda, going to work is no longer an option after her diagnosis. As a sales associate at Walmart, she did not have the energy to be on her feet all day, and, with the threat of contracting the virus, she felt it was better for her health to stay home. She counts herself lucky to have the support of her husband and family. Her one fear in adapting to living with FSGS is that she will become a burden to her husband, which she does her best to avoid. She has been able to deal with the symptoms of FSGS like fatigue, and the emotional strains of having the condition. As she says, “For me, it is important to have family, faith, and love around me. It’s what keeps me going.”
Did you know there are 13 ways to measure how fatigue affects your life? Take the survey doctors use to measure the 13 areas of fatigue, by clicking here. Check out your score and share it with your doctor who knows about this survey and might have some suggestions on how to manage your level of fatigue.
