A's Kidney Stone Journey Recap
When I posted recently that I'm kidney stone-free, I also posted the news in the kidney stone group I participate in on Facebook. One of the members responded and said: "Like you my first
were oxalate and most recently uric acid. Can you tell me the process
by which you became so sure WHY you made your stones? Was it the
urinalysis exclusively or was it more and if so what steps and measures?"
So - if you're not interested in a recap of my journey thus far, I won't feel bad if you don't want to read this one :-)
The short answer to the questions posed is that testing and really great doctors where how I found out what was going on with me. My process was long - too long for a FB post, so I decided to put it all in one place here. I've blogged about most of my process as it was happening, so I will link back to my original posts where possible (there's often more detail there).
I think it's important to note that my process is most likely NOT the same for anyone else and is not meant as medical advice of any sort, I'm not a doctor. My body makes kidney stones and I'm learning how to stop if from so doing. If my journey helps to at least get an idea of where to start, that's to the good . . .
My process was precipitated by an emergency surgery in Feb 2017 for a 4mm stone that got stuck.
The composition of this stone was 80% Calcium Oxalate Dihydrate, and 20% Calcium Phosphate. I didn't care for the urologist who did the procedure, so for my follow up care my primary care doctor referred me to an excellent urologist (Dr. William Lin). He doesn't really specialize in stones, but he's super awesome and super knowledgeable.
First step was to meet with his physician's assistant. She started the ball rolling by requesting all the imaging and records from the ER, hospitals (two were involved), and the previous urologist. I had to pee in a cup, they took blood for more blood work, and set me up for another ultrasound of my kidneys and bladder, as well as two, back-to-back 24-hour urine collections from Litholink. It was a lot of testing. I learned later that this level of testing is what a good urologist should do.
That CT showed that my kidney was clear, and the numbers from the Litholink tests showed that I did not have an oxalate problem. At all. What I needed to do was to lower my sodium and increase my water. I was scheduled for another CT scan and urine collection in three months as part of my follow up.
During this time through my own online research, I found Dr. Coe's website and through that, Jill's website. I immediately emailed her and booked a private session. I then took her class. Dr. Lin was thrilled - he knows Dr. Coe and was very happy I was coaching with Jill.
My followup CT showed the possibility of the beginning of another stone, but I did super well with the follow up urine collection. Interestingly, however, my pH was clearly wonky back then - too low. I struggled with calcium all summer and learned through trial and error that I am lactose intolerant to certain dairy. Mainly milk and cream. I can usually eat cheese if I limit the amounts. This was the beginning of being diagnosed with ideopathic hypercalciuria (IH). Reducing my sodium was not enough to get my calcium numbers to where they needed to be.
Jump to around April 2018, when my primary care doc suggested that I try a high protein/low carb diet for weight loss. In hindsight, this, turned out to be not a great plan for me . . .
In October 2018, I landed in the ER again with what I was sure was a stone. But after a battery of tests including another CT, the ER folks said no - it was a kidney infection. A week later, I was back in the ER again for what turned out to be a 7mm stone. I have no idea how they missed that the week before . . . Another surgery at my local hospital. I never felt OK after the surgery but put it down to the stent. This time the stone analysis came back as 100% uric acid.
Even after the stent came out I still didn't feel right, and I saw Dr. Lin for followup, he was reasonably sure that the local surgeon had left something inside me. He requested an immediate CT, but when he looked at it, said there was no stone, and I went home, still feeling "not right." I received a call from him that night after the radiologist had done the final reading. There was a stone after all. Unfortunately for me, this time, the surgeon had left what turned out to be a 5mm fragment left inside my ureter.
Dr. Lin scheduled another surgery just to get me on the schedule, but he also prescribed potassium citrate and FloMax, and my body was able to dissolve the fragment so I avoided a third procedure. Flomax was a no-go for me. It gave me uncontrollable incontinence, as well as dizziness bad enough that it made me a fall risk. I had multiple follow up CTs to be sure all was well, and in one they found another stone. This time a 4mm one. I was actually able to pass this one a few months later after a horrible day (two days before Christmas 2018) but it left me with a forniceal rupture and elevated kidney function on the left. Dr. Lin said that happens sometimes and that it was nothing to worry about. More tests, more blood work, and everything calmed back down.
In January 2019, at my followup with Dr. Lin, although the most recent CT was still clear he told me that because I had made multiple types of stones in less than two years that I was a unique and special case that required a team - more than just him because he's a surgeon, not a nephrologist.
I am in the Chicagoland area and Dr. Lin referred me to Dr. Coe, who requested another Litholink test with a blood draw at the same time. I met with Dr. Coe and Joan, the scientist who works with him, in March 2019. From these results, my extensive medical history, and all my previous Litholink tests and CT scans, Dr. Coe diagnosed me with IH, a hereditary condition that has definitely been part of my journey. It was mentioned as a possibility in the first set of Litholink results in March 2017, and diagnosed two years later by Dr. Coe.
Throughout this process I continued to participate in Jill's kidney stone group and I private-coached with her again. She's been the boots-on-the-ground with me throughout the entire process. With her help I altered my diet enough after the first stone to not make any more calcium oxalate stones.
Dr. Coe has been very clear with me that my body requires lifetime potassium citrate and a balanced, rather boring diet. It took a couple of rounds of blood work for Dr. Coe to decide the proper dose for me. He felt that the low carb diet was what caused me to make uric acid stones. From August - November 2019 at Dr. Coe's request, I participated in an NIH kidney stone study. I couldn't take my potassium citrate during the study. There were four study arms and I participated in all of them - each arm entailed a 24-hour urine collection and a day in the lab. I passed stone gravel in November and I possibly passed a uric acid stone in October (it went into the urine jug and I couldn't fish it out). I was able to start my potassium citrate again immediately upon completion of my part in the study in November.
I had to follow up with Dr. Coe in November 2019, with another Litholink 24-hour urine collection. I saw him two days after the study was completed. There was one not-so-great piece of news at this visit. My kidney function was slightly reduced. I have to do another urine collection and see Dr. Coe again in April of this year for follow up - I'm hoping my kidneys will be working at top function again by then, but only time will tell.
I hope this helps :-)
So - if you're not interested in a recap of my journey thus far, I won't feel bad if you don't want to read this one :-)
The short answer to the questions posed is that testing and really great doctors where how I found out what was going on with me. My process was long - too long for a FB post, so I decided to put it all in one place here. I've blogged about most of my process as it was happening, so I will link back to my original posts where possible (there's often more detail there).
I think it's important to note that my process is most likely NOT the same for anyone else and is not meant as medical advice of any sort, I'm not a doctor. My body makes kidney stones and I'm learning how to stop if from so doing. If my journey helps to at least get an idea of where to start, that's to the good . . .
My process was precipitated by an emergency surgery in Feb 2017 for a 4mm stone that got stuck.
The composition of this stone was 80% Calcium Oxalate Dihydrate, and 20% Calcium Phosphate. I didn't care for the urologist who did the procedure, so for my follow up care my primary care doctor referred me to an excellent urologist (Dr. William Lin). He doesn't really specialize in stones, but he's super awesome and super knowledgeable.
First step was to meet with his physician's assistant. She started the ball rolling by requesting all the imaging and records from the ER, hospitals (two were involved), and the previous urologist. I had to pee in a cup, they took blood for more blood work, and set me up for another ultrasound of my kidneys and bladder, as well as two, back-to-back 24-hour urine collections from Litholink. It was a lot of testing. I learned later that this level of testing is what a good urologist should do.
That CT showed that my kidney was clear, and the numbers from the Litholink tests showed that I did not have an oxalate problem. At all. What I needed to do was to lower my sodium and increase my water. I was scheduled for another CT scan and urine collection in three months as part of my follow up.
During this time through my own online research, I found Dr. Coe's website and through that, Jill's website. I immediately emailed her and booked a private session. I then took her class. Dr. Lin was thrilled - he knows Dr. Coe and was very happy I was coaching with Jill.
My followup CT showed the possibility of the beginning of another stone, but I did super well with the follow up urine collection. Interestingly, however, my pH was clearly wonky back then - too low. I struggled with calcium all summer and learned through trial and error that I am lactose intolerant to certain dairy. Mainly milk and cream. I can usually eat cheese if I limit the amounts. This was the beginning of being diagnosed with ideopathic hypercalciuria (IH). Reducing my sodium was not enough to get my calcium numbers to where they needed to be.
Jump to around April 2018, when my primary care doc suggested that I try a high protein/low carb diet for weight loss. In hindsight, this, turned out to be not a great plan for me . . .
In October 2018, I landed in the ER again with what I was sure was a stone. But after a battery of tests including another CT, the ER folks said no - it was a kidney infection. A week later, I was back in the ER again for what turned out to be a 7mm stone. I have no idea how they missed that the week before . . . Another surgery at my local hospital. I never felt OK after the surgery but put it down to the stent. This time the stone analysis came back as 100% uric acid.
Even after the stent came out I still didn't feel right, and I saw Dr. Lin for followup, he was reasonably sure that the local surgeon had left something inside me. He requested an immediate CT, but when he looked at it, said there was no stone, and I went home, still feeling "not right." I received a call from him that night after the radiologist had done the final reading. There was a stone after all. Unfortunately for me, this time, the surgeon had left what turned out to be a 5mm fragment left inside my ureter.
Dr. Lin scheduled another surgery just to get me on the schedule, but he also prescribed potassium citrate and FloMax, and my body was able to dissolve the fragment so I avoided a third procedure. Flomax was a no-go for me. It gave me uncontrollable incontinence, as well as dizziness bad enough that it made me a fall risk. I had multiple follow up CTs to be sure all was well, and in one they found another stone. This time a 4mm one. I was actually able to pass this one a few months later after a horrible day (two days before Christmas 2018) but it left me with a forniceal rupture and elevated kidney function on the left. Dr. Lin said that happens sometimes and that it was nothing to worry about. More tests, more blood work, and everything calmed back down.
In January 2019, at my followup with Dr. Lin, although the most recent CT was still clear he told me that because I had made multiple types of stones in less than two years that I was a unique and special case that required a team - more than just him because he's a surgeon, not a nephrologist.
I am in the Chicagoland area and Dr. Lin referred me to Dr. Coe, who requested another Litholink test with a blood draw at the same time. I met with Dr. Coe and Joan, the scientist who works with him, in March 2019. From these results, my extensive medical history, and all my previous Litholink tests and CT scans, Dr. Coe diagnosed me with IH, a hereditary condition that has definitely been part of my journey. It was mentioned as a possibility in the first set of Litholink results in March 2017, and diagnosed two years later by Dr. Coe.
Throughout this process I continued to participate in Jill's kidney stone group and I private-coached with her again. She's been the boots-on-the-ground with me throughout the entire process. With her help I altered my diet enough after the first stone to not make any more calcium oxalate stones.
Dr. Coe has been very clear with me that my body requires lifetime potassium citrate and a balanced, rather boring diet. It took a couple of rounds of blood work for Dr. Coe to decide the proper dose for me. He felt that the low carb diet was what caused me to make uric acid stones. From August - November 2019 at Dr. Coe's request, I participated in an NIH kidney stone study. I couldn't take my potassium citrate during the study. There were four study arms and I participated in all of them - each arm entailed a 24-hour urine collection and a day in the lab. I passed stone gravel in November and I possibly passed a uric acid stone in October (it went into the urine jug and I couldn't fish it out). I was able to start my potassium citrate again immediately upon completion of my part in the study in November.
I had to follow up with Dr. Coe in November 2019, with another Litholink 24-hour urine collection. I saw him two days after the study was completed. There was one not-so-great piece of news at this visit. My kidney function was slightly reduced. I have to do another urine collection and see Dr. Coe again in April of this year for follow up - I'm hoping my kidneys will be working at top function again by then, but only time will tell.
I hope this helps :-)
Comments
I appreciate you ! Now to find a good urologist! Thanks’