Medullary Sponge Kidney

AshleySelph | 9:01

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"The minute I started using CBD ... it actually helps. "

Medullary Sponge Kidney Kidney Stones Macrocytic Anemia Renal Diet Gabapentin Medical Marijuana CBD Augmentin Creatine Lisinopril Dialysis

Story Transcript

My name is Ashley Nicole Selph. I am 31. I'll be 32 next month. I'm happily married, living in Southern California. My story starts off with a rare disease. I was in the time in my life when I started getting happy, healthy. You know, my dad had just passed away with his own kidney problems, so I kind of understood, you know, the whole world of dialysis. I just didn't want to go thinking about that route. I started getting, the same, similar symptoms like my dad got and I didn't understand why? At this point, I had just got engaged. I just opened up my own day care in the state of California and life was good, until I went to the doctor one day. Then she decided to run some labs, because I told her that I was passing more than one kidney stone a week. So upon doing CAT scans and X-rays and all these imagings and ultrasounds and stuff and multiple labs, we came to the diagnosis that, I had a rare condition known in the United States as MSK, which is medullary sponge kidney, with side effects of not just anemia, but the rarest form of anemia, which is macrocytic anemia. So, when my body temperature drops or gets too hot or gets too cold, it causes my blood pressure to rise or to drop. And that's another thing I have to look out for, because what they didn't tell me, which I had to look into my own research that, when you have kidney problems, whether it's CKD, chronic kidney disease or renal or anything that has to do with your kidneys, sometimes the antibiotics will help heal your kidneys but cause damage to your liver. Therefore, the diseases ping pong to each other and other organs.

So they put me on a whole renal diet. And they also told me that when your blood pressure rises, a chemical that's harmful to your organs is creatinine. And when my creatinines every week, my creatinine labs are through the roof because of my kidney stones being passed every week. And it's not only that it’s everything can raise your blood pressure nowadays, with the cost of rent being high, or me not being able to work because of doctors thinking, that if I lift too many things I could get a hernia, which is, you know, something that they can't operate on me because the anesthesia and they can't put me under. And so with that being said, my story is battling a rare disease that doctors and scientists are barely knowing knowledge of.

I'm currently on a long-term antibiotic, which is Augmentin. 500 milligrams, three times a day. I have to check my blood pressure three times a day with and then if it's high, I have to take a blood pressure pill called Lisinopril. Luckily, I'm not diabetic. I don't even have a sweet tooth. I have to stay away from salt, phosphorus, and potassium, which is like pickles, tomatoes, avocados, stuff like that. It is harder, now, knowing that I am not able to work adequate, my day care, you know, stuff like that. My husband works six days a week, 10 to 12 hours a day. My roommate, she works at a local fast food place. So, with them both being gone, it's kind of on me, to rely on myself. I can't get an in-home care nurse through the state yet, because they don't think that I'm sick enough to get an in-home care nurse. So, that's where the battle is. That's pretty much my story.

I just want to raise awareness, to doctors and scientists everywhere, like it's a real thing, you know, I just want people to know that they're not alone with this disease. Although it's not common to have in America, only one in 5,000 Americans get it, and you have to be over the age of 30 for it to appear in your bloodstream or during any labs, kind of like cancer and stuff like that. It is hard, you're not alone. I'm trying to find support groups that help with people dealing with medullary sponge kidney. Our life expectancy for people who are battling the disease is not high at all. Even with dialysis, our life expectancy is cut in half. We're told that if we have medullary sponge kidney that kids, you know, since I just got married me, my husband wanted kids for so many years. But we got told the kids right now will not be an option because it would put too much strain on my organs. So that's kind of, you know, we'd have to find a surrogate if we wanted to have kids, and even then we have to think about, you know, would I want my children to see me this sick. I would want to see my kids graduate from high school. So I also, it's not just a physical toll that it takes on your body. It’s mental, it's emotional, it's everything. Seeing my husband hurt, because he can't help me. He doesn't know what to do and my roommate and just for everyone around me. It's a tough, hard disease. I wouldn't wish it upon my worst enemy, I really don't have any lot of enemies but, I’m just saying I wouldn't wish this on the worst of people, in my time.

So I just hope that my story reaches the Swell community as kind of like, you're not alone. There's not a whole lot of resources, when it comes to diseases, but I'm pretty sure if there was a community, we can all help each other and deal with this disease.

Some people are not as lucky as we are. Some people are completely battling the disease on their own, being in the same predicament, not being able to work, you know, not having any income from yourself, you know, and it's hard. Like I said financially, it's hard. And we gave up our apartment in August, because the rent was too high. We had to move somewhere that was cheaper. We had to downgrade a little bit. And then we found my roommate, who just got her nursing license. So, we're trying to get her in to be my in-home care nurse, so I'm not home by myself, because there are times where I can't make it to the bathroom or, you know, I have to have a trash can next to me for the days, where I just constantly just throw up and it really sucks. Currently, because pain meds and my Medi-Cal and everything is so mandated and so restrictive, that the only pain medication I'm allowed to have is gabapentin, which really is a muscle relaxer, and they give it to me to relax the muscles in my stomach.

The only advice I can give to people who are suffering MSK is that, I don't know how big people are on Swell about medical marijuana and CBD and stuff of that nature. My mother-in-law has two different diseases, and she started using medical marijuana the moment that it was agreed to be legal in California. And then she's like, here, try this. The minute I started using marijuana. The minute I started using CBD, the minute my town finally got a dispensary after the five year war with the council members here in my town because our town's only like no more than 10,000 people. We live in a small, desolate town between Palm Desert and Phoenix. We’re like the pit stop town that nobody talks about. So, you know, finally, I started partaking in CBD and stuff like that, and it actually helped. It actually helps my muscles out, like I don't have to rely so much on gabapentin or anything like that. You know, they also tell you, no caffeine so I just, you know, like decaffeinated teas that help sometimes. It also helps to get, you know, certain vitamins, because when you get a cold with this disease, your immune system is shot, from the get-go, it’s shot. And so they tell you, like you know you can't get so many medications because cold medicines have acetaminophen medicine, so they try to steer you away from acetaminophen medicine because it hurts more than it helps. So they said that the only cold medicine that you can have is Coricidin HBP with the kind that has no acetaminophen medicine that is the only cold medicine they prescribe for MSK users, I found out. So I've been doing a lot of research on the web. Like countless nights when I can't sleep, I just read about my condition and what I can and can't do. Again. My name is Ashley Nicole Selph. I'm 31, and I was diagnosed with medullary sponge kidney with macrocytic anemia, and that's my story.