Kidney stones

@jolinda
I’m sure my perspective would change if I had a transplant. I know I should drink more but unlike you I don’t have the luxury of drinking whatever. My only option is 2 cups of nonfat milk which isn’t much different than water. Because I donate Platelets every 2 weeks I stop eating things that inhibits iron absorption like milk cheese broccoli almonds about one week prior to donating so that leaves water only every other week.
I know I take having my kidneys functioning well for granted and those who had transplants are an inspiration and I’ll try to man up and drink more water.
Jake

Hello fellow stone sufferers,
I recently got out of the hospital because of what my doctor says is a massive stone. They put a stint around the stone but were unable to remove it due to its size. Has anyone had a large stone that couldn’t initially be removed? If so how was it ultimately removed?
Thank you for your input,
Jake

@jakedduck1 Hello, I am Carol a Volunteer Mentor in the Diabetes/Endocrine Group. I have Diabetes 2. I also have had kidney stones for as long as I can remember. I can certainly sympathize with you and your massive stone situation. Five years ago I had a severe attack of a huge stone in my right kidney. It had been there for years and the dr. said it was too large to exit and get into the tube. I guess, however, it must have lost enough of its size that it did get into the tube and caused as much pain as birthing my only child decades ago. I was sent immediately to my urologist. He put stents in to bypass the tube; they remained for six weeks while the tube's swelling and irritations healed. After that time the urologist used laser surgery to blast the stone into pieces and flush out the tube. Stents were put back in after the surgery for six more weeks for the tube to heal. The laser blast was out patient, and I was able to come home to heal and for any pieces of the stone to be flushed out. After six more weeks, the stents were removed and all was well. I have never had a urologist tell me that a stone can't be removed, especially with the laser. It blasts the stone and it is in little pieces. I have calcium stones. My husband also has stones; his are uric acid stones. Has your urologist mentioned a laser procedure? I don't know, but maybe all uros can't do laser; I'd check it out. It was a blessing and the blast was no problem, but the stents were awful! If I can tell you anything else, please contact me. Good luck.
Carol

Jake, I have not been in your situation, but I did find this information.
https://www.mayoclinic.org/tests-procedures/percutaneous-nephrolithotomy/about/pac-20385051
Here is some kidney stone information that i read in Mayo Newsfeed today. You will also see some related articles at the end.
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-what-causes-kidney-stones/
What have your doctors got planned for you since the stone did not come out? My girlfriend told me something once about her doctor using a laser or something to break it up and she successfully passed it afterward.

@jakedduck1, I am so sorry, Leonard! I wondered where you were.

Several years ago sonograms and a CT scan showed some fairly large stones in my left kidney. I haven't experienced what you just did but I did have a large stone we all thought had passed because my symptoms resolved.

As a result, I made the decision not to follow up with another sonogram or scan due to financial constraints and since I had no further symptoms my docs went along with this.

But what we now think actually happened was that the stone moved enough to completely block my left kidney so when the pain came back we thought it was another stone.

Once again the symptoms resolved and I experienced only occasional discomfort.

Four years later after a bout of 'flu and pneumonia labs showed a fairly sudden drop in eGFR and elevated BUN and creatinine levels and an MRI showed a completely blocked and atrophied left kidney. That's how I got into Stage IV CKD, though diet and fluids and rest improved the situation to Stage III-b.

I'm telling you all this because at this point, for me lithotripsy won't change anything and my neph watches me closely to make sure the stone doesn't do anything mean to me. But for you, lithotripsy might help. IDK if you already had lithotripsy and it didn't work or if it hasn't been tried yet but I do know a second lithotripsy has helped my brother with his kidney stones and a friend as well, who had litho and stents and whose stones eventually were passed like @retiredteacher was talking about in her post. I also know that stones can disintegrate on their own then re-form, they can become several little ones, they can dissolve, or they can accrete.

Years ago my brother had major surgery to remove a stuck stone because lithotripsy didn't exist yet. Has your doctor suggested surgery? Or is your medical team planning to adopt a wait and see strategy n case the stone shrinks?

Whatever happens, whatever they and you decide, please know I'll be thinking of you and sending you positive vibes!

@kamama94
First of all I’d like to offer you an apology for not getting back to you.
I was told they couldn’t do lithotripsy because of the location and size. They claimed other structures could be damaged. After the stint was placed I couldn’t urinate so was catheterized every 6 hours. The fun just doesn’t stop. Meds helped but urinating is still very painful. After the stint was placed my numbers improved so no permanent damage. I’m very lucky. On Aug 14 they are suppose to decide how to get it out.
Jake

@jakedduck1, no apology needed. I'm just sorry you had/are having to go through all this. Stones are horrible, aren't they? Please feel better soon!

Hi this is my first post. I suffered undiagnosed from kidney stones moving down and back up, stuck at either ends if ureter. The pain was so variable but every day I had pain for the last 2.5 years, being told it was most likely Irritable Bowel Syndrome.
The ultrasounds DID NOT see them, even though when I finally got a CT scan in June I was literally riddled with stones in my left renal system, tha largest 15mm. I describe the pain as lasting 2 hours at the longest and yes I could feel the specific spot at the urethra. Most days it would come on to about a 3 to 5. But most weeks it was in the late evening or until about midnight when a pain attack would start, and those attacks were an 8 to a 10. No doubt this was the worst pain. Child birth was easier because I knew there was going to be an end. And I was surrounded by people so knew what to do.
My pain was specific to my left side. It moved between front and back, all up the left side of spine and a very specific shot at front left - my urethra. And I have suffered from gut pains really badly too. So I can say that key differences/ points to note are:
- Gut pain does not stop for breaks. It lasts for days. Stones pain comes in waves but it has stayed with me in a specific spot to the point when that spot (at my ureter) is not able to be touched physically. And I am unable to be still to try to move the pain. Gosh even writing this takes me back into a memory of the trauma of it happening for so many nights without help. Prescribed panadol...
- If pain crosses over the mid line, I would rule out kidney stones unless the pains felt separate/ unrelated. Then it could be stones on both sides.
- There is no relief from the pain in bowel elimination.
- You can feel the pain move.
After 3 surgeries in the last 3 weeks I can finally say I an pain free, for the past 4 days - the first timm's in 2.5 years, thanks to laser surgery and stents. By the way, the catheter during the post operation made my pain SO much less with the 2nd stent. I thoroughly recommend requesting the catheter. It sounds terrible but it was surprisingly totally fine. Not painful. Just reduced the infection feelings significantly.
Hope this helps someone.

What was your prognosis now that date has passed?

For me I never drank 2 litres a day like instructed. But I did find that once I got over my water-ist attitude and started actually guzzling it against my will, I got more thirsty. So I have become a better water drinker because I became more thirsty when I started drinking it more. I think something happened in me where I became more aware of the feelings in my throat and mouth. I was tuning in when I thought I was already listening. Guess my body just turned up the volume in the chatter dial once I said, bloody hell. If I don't start drinking more water right now I will keep getting this pain-worse-than-childbirth for the rest of my days. It was after the 3rd ambo trip into emergency that I got the message. All the best.
Marnie aka remaghdia