"Even a simple cold can cause me to relapse." Meet Hugo, a little hero living with Focal Segmental Glomerulosclerosis (FSGS). This month he'll "Step Forward" and walk for a cure for his disease so that one day, he won't need a kidney transplant. If he faces that fate, maybe someone like Amanda (who Steve posted about this week) will come along and walk with him on this journey, saving him through organ donation.
This post is in honor of strong mothers who comfort, prepare, protect, love, engulf and enjoy "sick kids" even when things aren't "normal." Your image is the deepest imprint on their heart.
A mothers story:
"My son, Hugo “Junior,” was diagnosed with FSGS in the summer of 2005. The first 2 years were the hardest but I feel blessed that he is doing so well. When I say well it does not mean he is cured it just means he has been able to stay in remission FSGS is an illness that attacks the glomerulus, or the main filtering part of the kidney causes protein to leak into the urine. Over time, the protein acts as a toxin that injures the remaining parts of the nephrons. The rate of the resulting damage fluctuates from patient to patient. For some it is progressive and slow, in others it is rapid. In any case, the damage leads to kidney failure, which requires dialysis or transplant. Currently, there is no cure for FSGS. Once the scarring of the glomeruli associated with FSGS has developed, no medication can reverse the damage. FSGS treatment is based on improving symptoms and delaying the progression of FSGS in order to slow the development of ESRD.
For us it all began May 2005. Junior woke up swollen around his eyes. I took him to the pediatrician and was told it was allergies. I was told to give him Benadryl and figured it would help. The next morning he was worse. We ended up back at the doctor’s office. This time they ran a urine test and found very high levels of protein in his urine. We were told he may have something wrong with his kidneys so we needed to get blood work done as soon as possible. The results did not look good and he was started on steroids and diuretics.
A few weeks went by and no improvement; he continued to leak high levels of protein. They added medication and scheduled him for a kidney biopsy. My poor baby had gained about 8 pounds in 1 week due to the water retention, he was so swollen we had to buy him a new wardrobe because his clothes did not fit.
In June he was scheduled for a kidney biopsy. This was probably one of the longest days of my life. We were at the hospital by 5am. As soon as we arrived they began to administer the anesthesia. Seeing him falling asleep from the anesthesia was the hardest thing I have ever gone through. He was beginning to fall asleep but he still had tears running down his face, even with his eyes closed. We spent another 3 days in the hospital and were told they would have the results within a week. After a few days of being home we ended up back in the hospital because he was complaining of stomach pain. Just imagine a 2 year old down on his knees asking mommy to take him to the hospital to feel better. Since then he learned what hospitals were for – making people better. He was now admitted for about 1 week. This is when we received the actual diagnosis of FSGS. It was a very rough day. After the first few days he began to feel better due to the new medication. He loved being in the hospital (wagon rides in the hall, movies in bed, lots of attention and a nice playroom). When we finally were allowed to go home he cried. He wanted to stay and play in the playroom. The nurses said it was the first time they had a patient that did not want to leave. A few months later we were going to Brookfield Zoo and he cried as we drove by the Ronald McDonald Hospital at Loyola. He did not want to go to the zoo; he wanted to go to the hospital and play. I’m glad he has good memories of such a traumatic experience.
October 2005 he reached clinical remission (no more protein in the urine). His medications had been reduced. He no longer needed to take steroids, zantac, antibiotics or diuretics. Things seemed to be getting better.
Summer of 2007 he started having stomach pains and was diagnosed with gastritis and esophagitis. Of course, now we needed to add more medication.
In the past 3 years he has taken steroids, antibiotics, immunosuppresents, miralax, hormone injections, blood pressure medication, diuretics, Zantac, Prilosec, antacids, iron supplements, and Sodium Polystyrene Sulfanate. These medications have caused side effects like weight gain, excessive hair growth, mood swings, aggression, depression, increased appetite, decreased appetite, constipation and more.
I would love to say things have become easier but I think in reality we are just getting better at dealing with it. He now only takes 3 medications and the hormone injection. For us, this is a huge accomplishment. He is a typical 5 year old boy. He played T-Ball this past summer, started kindergarten this fall and is looking forward to playing football next year (maybe, I am still not convinced).
In 3 years his body has gone through more than most of us will ever go through. And unfortunately, this is only the beginning for him. Because there is no cure for this disease he will eventually need a kidney transplant. We have no idea when this will happen. It could be in a year or maybe 15 years, it all depends on the progression of the disease. Even a simple cold could make him relapse and speed up the progression. We do not dwell on it, we just live one day at a time and thank God that he is doing well.
As a mother, this has been a life changing experience for me. At first, I could not understand why this was happening, but now I understand. Hugo “Junior” was put into my life for a reason and I was put into his life for a reason. We have both learned so much from each other. He gives me the strength to get up every morning and go to work. He has given me the strength to return to school and complete my degree in Health Care Management. He has shown me to value every day that we have together. He is my hero!
"Step Forward" Walk to Save Kidneys!
Where: Hammel Woods in Shorewood (Joliet), IL
Date: Sunday, October 19, 2008, 1:00pm
Cost: FREE if you pre-register online, $25 for on-site registration
Register, contribute and find out about a walk in your area!
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