Because the pain from a kidney stone is so severe and unpredictable, those who have ever experienced even one stone dread getting another. Patients in my practice tell me over and over again how scared they are of forming another stone. I wanted to learn as much as I could about everything that bothers them so I asked my Facebook group to write to me about all their fears.
Here is what they said.
“I am terrified of being in that kind of pain again.”
It can take a long time to get medication to manage the pain. Emergency rooms are crowded and sometimes slow to respond. It is not surprising that my patients’ primary concern is pain.
“I never know when I might get another stone attack.”
It is scary to live with an illness that is so unpredictable. Kidney stone pain can come out of nowhere. Many patients tell me they are terrified they might suddenly get that pain at work, in front of their children, on a plane or when traveling in a foreign country.
“I don’t understand how to prevent kidney stones.”
Patients become stressed and feel overwhelmed when they are not getting the help they need, and deserve. Some don’t know how to seek it out. Others have been told that there is nothing that can be done to prevent stones from forming. That is just not true. If you implement the correct treatment plan, you will lower your kidney stone risk. Reliable information based on years of research is available. Dr. Fredric Coe and I have put together The Kidney Stone Prevention Course to teach you how to best implement your treatment plan.
“I don’t know who or what to believe. The internet has conflicting information.”
This is very true. No matter what you are looking up on the internet, always consider your source. Is the information coming from an expert in the field? If not, keep on “Googling” until you find THE expert. I will save you time by telling you to go to this website.
“I am overwhelmed by the information I got from my doctor or alternatively my doctor didn’t tell me much.”
Many doctors are not well versed on how to help patients implement the fluid and dietary changes needed to lessen stone risk. Perhaps you were given a list of foods to avoid and a generic order to “drink a gallon of water every day.” If so, it makes sense that you left the doctor’s office feeling confused. Consult with someone who has the experience to help you implement the dietary changes being asked of you. Ask your doctor to provide a referral.
“I cannot pay all the kidney stone surgery and hospitalization medical bills.”
Many patients are stressed by the number of bills they have accumulated because of kidney stone removal surgeries and/or hospital stays. Call your hospital billing office to see if you can get on a payment plan. If you commit to a kidney stone prevention plan, it will in the long run save you money.
“I currently have stones and I am afraid to travel far from home.”
I hear this daily from patients. They give up traveling because they do not know if they will pass a current stone on a plane or are scared the kidney stone pain might act up in a foreign country. For patients who currently have stones I teach them to be proactive. I tell them to pack a travel emergency bag with pain meds, heating pad, and Flomax (get an Rx from your doctor). I also remind them to stay well hydrated during the trip. Many people don’t drink water on the plane because they don’t want to have to use the bathroom. Although it is annoying to get up and use that tiny airplane bathroom, you now know how important it is to keep hydrated—even during the plane ride!
Before you go, please ask your doctor if it is safe for you to travel and if he has a contact at your destination—just in case!
“My doctor told me to change my diet, but I don’t know how.”
Your doctor may ask you to make many dietary changes to lessen your stone risk. These changes can be complicated and overwhelming. Go to my website for help.
“I am to afraid to eat.”
Another common reason patients come to me is they have lost too much weight because they are afraid of eating. Some even stop eating altogether. This is much more common than you think and is always a real concern for me. There are so many foods you can still eat on The Kidney Stone Prevention Diet. I have successfully worked with many patients to help them regain that much needed weight. I do this by teaching them how to safely incorporate healthy foods while still lowering their stone risk.
“I’m concerned my doctor is NOT proactive in kidney stone prevention.”
If your doctor does not believe in stone prevention it is time to look for one who does. Period.
“I have other medical conditions that conflict with the Kidney Stone Diet.”
This is an area of concern for many patients. Their diabetes doctor is asking them to eat more plant food and their urologist is telling them to go on a low oxalate diet. Now what? It takes knowledge and patience to design a diet appropriate for multiple medical conditions, but it can be done. I have worked with many overwhelmed diabetes patients who also have kidney stones. Once I get all the facts, it is not difficult to manage all the different restrictions.
“I am a teacher and cannot leave my classroom every 5 minutes to use the bathroom.”
I understand that it is difficult to leave the classroom because you are supposed to drink lots of fluids. It is even worse if you have to miss work due to new stone formation and the associated pain and surgeries. Do your best to keep hydrated, even if it means leaving the classroom a couple of extra times.
I have worked with pilots, surgeons, sales people, nurses, and truckers. Each of these professions makes it tough to keep hydrated because of the time required for bathroom breaks. Once they understand the importance of keeping new stones at bay or of keeping small stones from growing, using the bathroom when needed is simply part of their day.
“I currently have stones and fear they are going to get bigger.”
Of course it is scary to think about the possibility that a stone might get bigger. You can reduce the likelihood of your stone(s) becoming larger by asking your doctor to suggest diet and fluid changes. If your doctor has already given you a kidney stone prevention plan, follow it to the best of your abilities. If your doctor did not prescribe a treatment plan, read my article 5 ways to prevent kidney stones.
“I am afraid I will become septic, get chronic kidney disease (CKD), and/or lose a kidney.”
Many patients have suffered tremendously from kidney stones. Beyond the sudden, acute pain, medical bills, hospitalizations, and surgeries there can be long term complications from having chronic stones. Kidney stones put patients at an increased risk for CKD.
Many patients have also suffered long hospital stays due to infected stones (struvite), and have lost kidneys due to chronic kidney stones. Proper testing and a kidney stone prevention plan right after the first stone occurrence is key in lowering your risk of long term medical problems.
This article is for all of you who are worrying about getting another kidney stone or that a current one will get bigger or suddenly pass. If you get tested, educated, and then implement a prevention plan, you can lower your kidney stone risk. Kidney stones can be prevented much of the time when you follow your kidney stone prevention plan. If you don’t have one yet, talk to your doctor.
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