Cystinuria Awareness Day in Dixie!
Holly C
Hey!
My name is Holly, and I am 41 years old, and am from Hanceville, AL. , about an hour north of Birmingham. I was diagnosed with Cystinuria at the age of 14, so it will be 27 years this fall since I was diagnosed. One morning, in October 1998, I woke up with a stomach ache that I thought was the flu or food poisoning or something. The pain did not go away, but got worse, and my mom thought maybe appendicitis. I went to the county hospital. I had not even finished telling an ER doctor named Lyn Jetton my symptoms when she diagnosed it as a kidney stone. I did not know much about kidney stones at the time, but I knew exactly the kind of thing she was talking about when she said it. They shot me up with morphine and took x-rays. She joked I could make a necklace out of them. A little humor goes a long way during a difficult time. Dr. Jetton referred me to urologist Dr. Rodney Sanders in Cullman. Not long after, Dr. Sanders provided narcotic pain killers such as Hydrocodone and Meperidine, and Ultram as a relaxing agent, and a diagnosis of Cystinuria was made when they sent the stone away to the lab. I have had Dr. Sanders and his team this whole time since I still live in the area, plus a brief visit to urologist Dr. Burns at UAB in Birmingham.
Two things that make me a further anomaly – since some people with Cystinuria were diagnosed in childhood, I actually do remember a time when I felt healthy and pain free. I had a normal, active childhood of school, church, skating, swimming, riding the tire swing, going to the track meet, playing baseball and stickball mitts in the backyard. Two, despite passing thousands of stones, big and small, I have never had surgery. Do not – I repeat – do NOT try this at home, kids! – as it is not an endurance contest. I encourage everyone to get the quickest intervention they need, and some stones are truly impassable and dangerous if left in there. In fact, there’s probably a few times I should have gotten surgery. I guess I am just as scared, if not more scared, of the stents, trauma from the surgery, and subsequent bleeding afterwards than I am of the stones. Also, in the time it takes to make, prep for, and keep an appointment, a lot of stones will have already passed and the cycle starts again. In fact, I have never had surgery for anything (except wisdom teeth) which makes me all the more hesitant. And I’ve had little visible blood while passing over the years. Go figure.
In addition to rest, water, and vitamin and herbal supplements, my stone hack is simple – prescription pain killers, Thiola, and bladder relaxants such as Oxybutynin. I recently discovered Oxy-b and it has been a miracle worker. Some stones have passed within a matter of minutes upon feeling the effect. As a side note, dietary modifications have seemed to make little, if any difference.
From the begining, I asked my doctor about Thiola and Pennacillamine, but naturally, he did not know much about them and was hesitant to prescribe them, as he heard they could have harsh side effects. I asked at every visit, and 7 years later, in 2005, I was prescribed Thiola! It has not been a cure, but definitely something I cannot live without as it has brought the cystine levels and size of the stones way down. Despite some muscle pain and dizziness from Thiola in the very beginning, this went away quickly and Thiola has been side effect free ever since.
Also in 2005, I started a personal website called Cystinuria Clearinghouse, sharing everything I knew about and had tried for the disease up until that point, and meeting many others with the same through the guest book and email. While this information was free, I also sold an email newsletter with further info for a time. I ran the site for 10 years, and it is now on The Internet Archive/Way Back Machine!
Since, like all stone patients (or anyone with any disease for that matter) I have good days and bad days, trying to describe *how* sick I was has been a little tricky. I have recently come up with the term “semi disabled” for myself. On a good day, I may be busy around the house or in town, swimming, walking, gardening, listening to music, enjoying pop culture, reading, – esp the Bible, Flannery O’Connor, romance novels, or taking temporary jobs. On bad days, when I can hardley make it to the mailbox or corner store, and need to stay very close to a bathroom and have bed rest – I am truly out of commission and this is more like staying in a hospital. I got a two year Associate’s Degree in five years in Child Development and definitely still want to work in a daycare sometime. Slow and steady wins the race, right?
A big shout out to all the friendly, helpful workers and nurses at the Thiola hub! Having Thiola delivered right to your door really “rocks!”
And thx to my closest loved ones for all their tireless love and support in every way!
For Cystinuria Awareness Day (and whole month actually) my nurse Jessica and a press agent Samantha Darwak asked if I wanted to renew The Cystinuria Day Proclamation for the state of Alabama and of course I said yes! This proclamation was originally put forward by cystine patient Mary-Anne Smith (someone I have never met) of Dothan AL, in 2020, and signed into effect by Gov. “Grandma” Kay Ivey. I am glad I could play a small part in it’s renewal! In light of this, I decided to submit my own story to this site to help raise awareness.
Well, as Reba said in her song “I’m gonna take that mountain / ain’t nothin’ gonna slow me down / and there ain’t no way around it / gonna leave it level with the ground.”
Much love to the whole stone community and their helpers, and thank you for reading my contributions!