Having a kidney stone can be a very difficult and upsetting event, especially if you are unaware of what is going on and the resources that are available to help you.
The following questions were asked to various kidney stone patients – all of which had unique stone experiences. These experiences are not meant to help you diagnose your own stone, but rather to help you see that each experience is associated with unique feelings, symptoms, and treatments.
4 Patient Experiences with Kidney Stones
What was your first experience with kidney stones like?
- I felt an uncomfortable, strong discomfort but I would not call it pain.
- I experienced minor groin twinges which turned to extreme side pain after a few hours
- I collapsed at home and my wife called an ambulance. When I was admitted to intensive care it was found that I had sepsis.
- My first experience was 40 years ago, and it was very painful and scary because I was in another country.
What did you panic or worry about during your first experience?
- I was very worried about how long my symptoms would last as they were very tiring.
- At first I thought it was something minor, then when it developed into severe pain I was worried it was something serious like a burst appendix.
- I was “out of it” and spent 12 days in intensive care so I didn’t have to worry about anything!
- I was worried about what was happening and what would happen, and it was difficult to get answers due to the language barrier.
What did your urologist suggest to do? What advice were you given?
- I was advised to drink lots of water and take some pain killers and anti-nausea drugs to help manage my symptoms.
- I didn’t have a urologist at the time, and I was simply given sedatives in the emergency room and told to wait to pass the stone, which I eventually did.
- My urologist removed most of my kidney stone, although there was a sliver remaining.
- I received surgery and had a lot of fluids later.
Did you do a metabolic work up?
- Yes, it was quite thorough
- I did not have one the first time I had kidney stones
- I don’t know what this is, so I don’t think I had one.
- Not during my first time having kidney stones because I was travelling.
What did you wonder about pertaining to stones?
- I wanted to know why my uric acid stones would come back so often, as I had them happen four times in under a year.
- I wondered what was causing my stones, as no information was available at the time.
- I was curious to know what symptoms I should expect, because I had not experienced any symptoms leading up to my stone event.
- I wanted to know why this occurred and why there was such a long time between stone events. My last stones were caused by infection.
What did you do to improve your quality of life and what steps did you take to try to prevent future stones? How well did these approaches work?
- I ate much less protein (only 3 ounces per meal), drank water much more often and stopped drinking carbonated water.
- I got my blood tested and changed my diet. I exercised more often and changed my lifestyle.
- I modified my diet slightly, no more nuts or beets, and I drank lemonade. I also made a habit of drinking a glass of water after urination, especially at night. About 18 months after my initial stone event I had another emergency, but this time I just felt queasy, with no real pain. I went to the VGH emergency where I had my stone removed, and I went home the next day with no complications.
- I had surgery to remove my stones and I made sure to drink more water by measuring out the amount to drink at the start of each day. I’ve been stone and infection free for a year.
How did you find out about treatment options?
- Low protein and lots of water with lemon was the answer.
- I found out mostly through my own research.
- I learned about treatment options through diagnosis and operation results.
- I worked with my doctor and a gynecologist to come up with a treatment program.
What advice would you give to people in a similar situation as you?
- Always ask questions! Seek a nutritionist that is knowledgeable about kidney disease, especially the type of kidney disease that you have, and never let up on the amount of water that you drink. Always carry water with you or buy water if you have forgotten.
- Drink more water and lemon drinks, and cut down on your salt intake. Make sure to get your stones analyzed so you know what type of stones you have. Don’t ignore minor side pains that seem like indigestion or groin twinges, go see your doctor about them.
- I am at a loss because I do not have a picture of any symptoms, however hydration and drinking lemonade helped me.
- Don’t be afraid to press the professionals about possible links to other situations. Drink lots of fluids, seek help right away if you need it, and don’t be afraid to get surgery if it is necessary.