My Story
Hi,
Welcome to my little corner of the interwebs where I plan to educate the masses about kidney disease, specifically IgA Nephropathy while I beg for a kidney. Why beg? Well, I'm a 38 year old mother and wife and I have a whole lotta life left to live. I'd like to do it as happily and healthily as possible and for that, I need a new kidney. But I'm getting way ahead of myself, lets start at the beginning.
It was a rainy spring day in April, 1979 and I was just starting my journey into this world. What? You don't want to go back that far? Fine. Lets skip ahead to childhood. I was a mostly healthy child who suffered multiple ear infections and strep throat, as kids often do. When I was in the 6th grade, I got strep throat and a fever accompanied by a rash on my legs and very dark tea colored urine. TMI? Too bad, we're gonna talk about pee a bunch around here. My parents did what parents do and took me to the doctor. There were so many cups to pee in and so much blood to draw, actually I think I only had like 3 vials drawn at this point but for a girl afraid of a finger prick it was a big deal. I was referred to the Childrens Hospital in Winston Salem and I had to collect 24 hours worth of pee in a gallon jug that we had to keep in a cooler in the back of my dads truck to keep it "fresh". I remember that trip so vividly. Sitting in between my parents laughing about if somebody stole my pee and thought it was beer they'd have a rude awakening. Also, Dad and I made our mouths raw getting fireballs and sour candy for the drive. After a long car ride and all the labs, we were told I had nephritis, inflamed kidneys, and that it'd clear on its own and I'd probably always have blood in my urine, nothing to really worry about. I don't blame them for the misdiagnosis. When I was finally diagnosed, it was still a relatively new disease and pretty unheard of in a 20 year old much less an 11 year old.
All through high school I would have what I now know are "flares" and would ignore them. It always happened when I had a bit of a fever so I felt a little down but not more than usual. When I was 19 I had a particularly bad and draining flare that sent me straight to the doctor. This doctor took one look at my blood filled pee and gave me heavy duty antibiotics. Three days later they called and said there was no infection at all and took me off the antibiotics and sent me for more tests. I eventually ended up at a nephrologist. He immediately ordered a biopsy, a giant needle shoved into my back to pluck out a piece of kidney. The biopsy made me nervous and was a little scary but we learned that I am exceptionally ridiculous on valium and my Dad is exceptionally ridiculous in general. That combination caused me to laugh so hard in recovery that I set off a ton of alarms. It also gave Dad a nice red spot across his forehead from trying to be a rooster with a rubber glove. Oops. That biopsy provided a diagnosis of IgA Nephropathy. I immediately started Prednisone therapy, blood pressure medications, water pills, vitamins, fish oil, and I'm sure some stuff I'm forgetting. I went from 1 pill a day to 16 twice a day. Continuing my care we learned of a trial treatment of immuno-suppression therapy and tried that. At the time of my diagnosis it was expected that I would need dialysis before I was 30. This was 1999.
A bit later I married a Marine, we did some moving back and forth across the country, my kidneys behaved themselves. This was a relatively boring time in my life kidney disease wise and it was amazing. I mean there were still cups to pee in every few months and blood to be drawn just as often, but it always revealed that I was stable, that the aggressive therapies in 1999 worked and now I only needed maintenance therapies. Six pills a day, four of which were supplements, was all that I needed. Looking back, it was pretty awesome. I felt good and I was doing well.
Based on the shock of my diagnosis and the prognosis originally given, I never expected to be able to have a child. Fast forward to 2005 when we felt that it was time to grow our family and imagine my delight when my nephrologist told me I was stable and had been stable long enough that carrying a child shouldn't be a problem. Enter 2007 and the most amazing tiny creature graced us with her presence. I was still stable even after being off all medications for about a year. I continued to nurse my daughter as the Marine Corps moved us a couple states North and then across the country within a year. During that year, I only had one visit each with two different nephrologists and the lack of continuity of care caused them both to miss a significant decline in my kidney function. Once we settled in CA, I saw a nephrologist I had seen 3 years earlier and he was shocked at the decline. I went from about 70% kidney function to 30%. We immediately restarted medications and I was once again stable. My kidney function seemed to stabilize anywhere between 23% and 30% over the next 8 years. My energy was decreased and flares hit me a bit harder than before, but ultimately things were good. I was stable. I still only required a few medications. Things were good.
Today, as I write, I am at about 17%, it was a rapid decline triggered only by the nature of my disease and something we always knew was a possibility. That knowledge doesn't make it any easier. I have had drops in my function before but always bounced back. Now I am part of a transplant program awaiting a kidney, hoping and praying for a live donor to come forward who is a match. My energy is decreased and I suspect flares will be a bit harder, both physically and emotionally. I wake up every morning thankful that I am able to get up, get my nine year old daughter ready and off to school and participate in most day to day activities. I am on a restricted diet for potassium and protein and back on about eleven pills a day not including vitamins and supplements. Life looks a lot different now than it did a year ago, but that's OK. I am a fighter and I have a wonderful team for back-up and fabulous veins for dialysis should we get to that point.
I would love to answer any and all questions about my disease, my journey, my family, my pee, whatever. Just ask in the comments and I will do my best to oblige.
Welcome to my little corner of the interwebs where I plan to educate the masses about kidney disease, specifically IgA Nephropathy while I beg for a kidney. Why beg? Well, I'm a 38 year old mother and wife and I have a whole lotta life left to live. I'd like to do it as happily and healthily as possible and for that, I need a new kidney. But I'm getting way ahead of myself, lets start at the beginning.
It was a rainy spring day in April, 1979 and I was just starting my journey into this world. What? You don't want to go back that far? Fine. Lets skip ahead to childhood. I was a mostly healthy child who suffered multiple ear infections and strep throat, as kids often do. When I was in the 6th grade, I got strep throat and a fever accompanied by a rash on my legs and very dark tea colored urine. TMI? Too bad, we're gonna talk about pee a bunch around here. My parents did what parents do and took me to the doctor. There were so many cups to pee in and so much blood to draw, actually I think I only had like 3 vials drawn at this point but for a girl afraid of a finger prick it was a big deal. I was referred to the Childrens Hospital in Winston Salem and I had to collect 24 hours worth of pee in a gallon jug that we had to keep in a cooler in the back of my dads truck to keep it "fresh". I remember that trip so vividly. Sitting in between my parents laughing about if somebody stole my pee and thought it was beer they'd have a rude awakening. Also, Dad and I made our mouths raw getting fireballs and sour candy for the drive. After a long car ride and all the labs, we were told I had nephritis, inflamed kidneys, and that it'd clear on its own and I'd probably always have blood in my urine, nothing to really worry about. I don't blame them for the misdiagnosis. When I was finally diagnosed, it was still a relatively new disease and pretty unheard of in a 20 year old much less an 11 year old.
All through high school I would have what I now know are "flares" and would ignore them. It always happened when I had a bit of a fever so I felt a little down but not more than usual. When I was 19 I had a particularly bad and draining flare that sent me straight to the doctor. This doctor took one look at my blood filled pee and gave me heavy duty antibiotics. Three days later they called and said there was no infection at all and took me off the antibiotics and sent me for more tests. I eventually ended up at a nephrologist. He immediately ordered a biopsy, a giant needle shoved into my back to pluck out a piece of kidney. The biopsy made me nervous and was a little scary but we learned that I am exceptionally ridiculous on valium and my Dad is exceptionally ridiculous in general. That combination caused me to laugh so hard in recovery that I set off a ton of alarms. It also gave Dad a nice red spot across his forehead from trying to be a rooster with a rubber glove. Oops. That biopsy provided a diagnosis of IgA Nephropathy. I immediately started Prednisone therapy, blood pressure medications, water pills, vitamins, fish oil, and I'm sure some stuff I'm forgetting. I went from 1 pill a day to 16 twice a day. Continuing my care we learned of a trial treatment of immuno-suppression therapy and tried that. At the time of my diagnosis it was expected that I would need dialysis before I was 30. This was 1999.
A bit later I married a Marine, we did some moving back and forth across the country, my kidneys behaved themselves. This was a relatively boring time in my life kidney disease wise and it was amazing. I mean there were still cups to pee in every few months and blood to be drawn just as often, but it always revealed that I was stable, that the aggressive therapies in 1999 worked and now I only needed maintenance therapies. Six pills a day, four of which were supplements, was all that I needed. Looking back, it was pretty awesome. I felt good and I was doing well.
Based on the shock of my diagnosis and the prognosis originally given, I never expected to be able to have a child. Fast forward to 2005 when we felt that it was time to grow our family and imagine my delight when my nephrologist told me I was stable and had been stable long enough that carrying a child shouldn't be a problem. Enter 2007 and the most amazing tiny creature graced us with her presence. I was still stable even after being off all medications for about a year. I continued to nurse my daughter as the Marine Corps moved us a couple states North and then across the country within a year. During that year, I only had one visit each with two different nephrologists and the lack of continuity of care caused them both to miss a significant decline in my kidney function. Once we settled in CA, I saw a nephrologist I had seen 3 years earlier and he was shocked at the decline. I went from about 70% kidney function to 30%. We immediately restarted medications and I was once again stable. My kidney function seemed to stabilize anywhere between 23% and 30% over the next 8 years. My energy was decreased and flares hit me a bit harder than before, but ultimately things were good. I was stable. I still only required a few medications. Things were good.
Today, as I write, I am at about 17%, it was a rapid decline triggered only by the nature of my disease and something we always knew was a possibility. That knowledge doesn't make it any easier. I have had drops in my function before but always bounced back. Now I am part of a transplant program awaiting a kidney, hoping and praying for a live donor to come forward who is a match. My energy is decreased and I suspect flares will be a bit harder, both physically and emotionally. I wake up every morning thankful that I am able to get up, get my nine year old daughter ready and off to school and participate in most day to day activities. I am on a restricted diet for potassium and protein and back on about eleven pills a day not including vitamins and supplements. Life looks a lot different now than it did a year ago, but that's OK. I am a fighter and I have a wonderful team for back-up and fabulous veins for dialysis should we get to that point.
I would love to answer any and all questions about my disease, my journey, my family, my pee, whatever. Just ask in the comments and I will do my best to oblige.
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