Gosh Norma, so sorry to hear this! I know how to prevent them, but know nothing about how to get through it, or treat them.

My brothers and mother have had them, but I never have. My oldest brother (who does not have PKD) had one a couple months ago, and went to ER. They said to drink lots of water and wait it out. He ended up getting a severe Mnire's episode, which actually dwarfed the pain of the stones. He didn't know up from down and wanted to die for about 36 hours. Each time I talk to him, he says that they must have gone away eventually.... on their own.

I hope that's the case for your son, that it SOON passes without any harm and the pain lessening. It's so hard to be the parent of a loved one going through something like this.

Sorry to hear about your son. I have heard that most times, a kidney stone pain is much worst than giving birth. I had a colleague that went thru a barbaric procedure, which I assume is the one you are referring to. You wont believe this but the procedure did not work. It seems like kidney stones are not round and smooth, like a river rock usually is (polished for years by hydraulic currents). Kidney stones may be irregular and with needle sharp edges. Doctors tried the barbaric procedure but had to abandon it because when they held the stone and tried to pull it out, the stone was badly stock in the urethra and while pulling, they were also pulling strongly on the urethra and there was a chance that the urethra may rip. So the doctors sent him home. It took him more than a month but it finally came out. Its hard to believe how something that is stock in such a way may come down on its own. In this case, Nature 1, Science 0.
Hope he feels better soon.
PKDAD

Thanks Heather, yes you know all about it when our adult children get sick, it's not a pretty picture. It appears that men are more prone to them and for sure he will be changing his way of life after he gets through this thing. He's supposed to catch it when it passes, so they know what type of stone it is, sure hope he is able to do that. They just got back from Costa Rica when this happened, he apparently was peeing blood before they left but didn't want to upset their special family vacation. Can you imagine what it would have been like if this had happened in a third world country? You pretty much describe accurately how my son feels, I just wonder how long it can go on and have heard of horror stories! thanks again Heather..

love,
Norma...

OMG PKDAD, I can't imagine such a thing and that is just want they wanted to do to him today, but he declined for now. I guess we'll see just how long he can take it. At least with childbirth, it's overwith in a reasonable length of time and a child is produced, not a stone! I can't even fathom the pain people must go through with all of this.
Thanks again PKDAD....

Norma,

My prayers are with your son! My brother has PKD and has had numerous Stones. I think the ER just gave him pain meds and sent him home. I don't know any more than that, just that it is horrifically painful. I am so sorry for you and your son! I know how difficult it is to watch your children be in pain or sick, and nothing you can do about it. I'm surprised that there isn't some kind of med, or drink or something that can help disolve or break the stone up. Well, I am thinking and praying for you both.

Kelly

Hi Kelly, thanks so much for your thoughts. You would think that by now in this day of modern medicine, that something would have come along to help it, but I guess not. When the "procedure' was described to him to get the stone out, he gratefully declined. Did you read what PKDAD had so say about that so called procedure? Oh my.... doesn't sound good at all. It's awful when your kids are young and sick and even worse when they are adults, I feel so helpless.
Thanks again Kelly.

Love,
Norma...

Norma,
I did read PKDADs entry. yuck! Yes, I think I would decline as well. For sure!

Take care,
Kelly

Now for a reality check.

Kidney stones can HURT. Passing a kidney stone has been likened to giving birth, having renal colic and having a pancreatitis attack all at once.

Drinking tons of water, as in 3-4 liters of water and water only, is one of the best ways to get the stone to pass. Maximize the flow of fluids through the kidneys and through the system. But keep track of the flow in and out. If the flow out suddenly decreases or stops, that's an emergency and cause for an immediate ER visit.

Take pain medication as prescribed. Do not skimp or try to be stoic. Some doctors add an antispasmodic as well to lessen the spasms of the muscles around the stone and allow it to pass with less pain. There are medications targeted towards the bladder; I just don't recall the name.


There are multiple procedures to remove a stone and they are not as barbaric as they sound. For starters, you are highly sedated if not under general anestesia. Yes, a stone has nasty ragged edges. But when going up the down pipe (if the stone is reasonably accessible that way), the stone is captured into a CLOSED container (despite it being called a basket) so it can't cause any more damage while it's being removed. If left alone it's going to poke and prod and tear things up all along the way, if it's going to go anywhere on its own anyhow.

Lithotripsy (extracorpreal sound wave litotripsy) is another option is the stone is higher up. This procedure, done under general anesthesia, creates hundreds of cracks in the stone and afterwards, with the help of at least 1 gallon of water per day for at least the next 3 days, the water forces itself into the cracks and breaks up the stone, allowing the tiny pieces to pass painlessly and often so small that they can't be captured in the sieve provided by the urologist (worked wonders on my 3 cm kidney stone that was stuck in my kidney as it was too big to go anywhere, can be used anywhere along the route). Be sure to get and take the pain medication afterwards; the kidney can go into renal colic afterwards and be quite painful for up to a week after the procedure (but nothing like trying to pass the stone).

If his fever keeps going up, he needs to get checked. Kidney stones can lead to bladder and kidney infections (somehow stones and the problems they bring tend to bring with them bacteria). The last thing he needs now is a UTI or kidney infection.

Jimmy needs to eat. I know he doesn't want to, but he needs to keep something down. Otherwise he's going to end up even sicker and weaker and it will take even longer to recover from this episode.

I hope this stone passes soon. Please let him know there is nothing gained by being stoic and trying to just gut through this. If the stone is in the urethrea or within a reasonable distance, he really needs to take his urologist up on the offer of the in-office procedure; with IV sedation he won't remember a thing and he'll be out of agony in no time flat. The procedure sounds much worse than it actually is. I have a brother-in-law and a good friend both with a propensity towards developing kidney stones and they've both gone through the "up the downpipe procedure" multiple times and have repeatedly said they would go back to the urologist any day rather than deal with the pain and regret having held out for so long the first time. Let Jimmy learn from their 20/20 hindsight and be out of pain now.

Make him lots of good soup, then take him to the urologist tomorrow so he can sleep peacefully tomorrow night.

Gentle hugs,
Ruth

Ok Ruth, you've got it, your email in on route as we speak. Rembering that his wife is the "I can't think of a word, ummm, a nature can cure itself sort of person" She is very irritated with him and says that this is all a result of him not eating the foods that she puts in front of him. Which basically is nothing because he is the chef in the family and that is his career, so who knows whats going to happen now. I do know that she's fed up with him and that he's fed up with the whole deal. they are taking their first child off to college next tuesday and Jimmy plans on doing everything that is required! I imagine he will change his mind about having the "barbaric procedure" done pretty quick due to the pain he is in. At this point he is taking non barbituate drugs, was on a morphine drip prior, but his wife has told him this is way better. The urologist offered them 3 different scripts, two that are and one that isn't and thats what he's taking. Sigh.... I know that you don't know where I am coming from at this point, but being a mother in law has it's limits...:( I have to be very careful what I say and do! I love them to death, but she is from the world of all natural and thinks that it will cure anything, in the meantime, he is suffering unbelieveable! I sure hope that your email helps our cause and thanks ever so much!

lots of love,
Norma...

Norma,
Guess the person who came up with that stupid saying "your daughter's your daughter all your life but your son is your son until he takes a wife" must have gone through what you are experiencing in the daughter-in-law department. I add my hopes that Ruth's reality check gets through to them!!
Lisa H

My daughter in law is the most beautiful, caring, loving person I have ever known and I don't know what I would have done without her. However, she is strong in her opinions and I guess I have to respect that, even in regard to childhood inoculations. who knows, she may know more than I do. But when it comes to seeing your child suffering, no matter how old he is, is quite another matter. We shall see, won't we. Thanks Lisa

love,
Norma...

As a clarification, I was not suggesting that anyone chooses to ride it out instead of seeking medical attention. My intention was just to give testimony of a colleague (non PKD) that had that specific complication. While I would not dare give a % when this complication happens, because I have no idea, it is my understanding that it is a common complication. I assume most of the times the procedure is successful.
Even if your son decides to wait for the stone to pass, he must be monitored and play close attention to where the stone is located, because if it is stuck in the urethra, it could create a backflow in the urine that could lead to an infection.
Hope he spits it out soon.
PKDAD

Norma
It's essential he take all the medication that were prescribed. The situation has gone beyond the time for natural medicine and it is now time to take advantage of everything that allopathic (Western) medicine can bring to bear on it.

Here's a good arguement for you on this particular situation:

Back when we relied on natural medicine for everything, we weren't getting kidney stones at anywhere near the rate we do now. In large part it's because we didn't have all the sugar, fats and other non-natural ingredients in our diet. Sugar was a treat, saved for a special occasion. And there was no high fructose corn syrup or other corn based products other than corn bread, corn muffins, tortillas, etc. There was no carragean, malodextrin, or artificial flavors and colors, nor where there any of the innumerable chemicals that are in our foods these days. No sodas in lieu of water. If you wanted an apple, you picked one from the tree or got one from the cellar; you ate food when it was in season, or you canned or stored the rest. People could drink get their fresh water right from the stream or lake. Fresh air and sunshine were plentiful and skies were actually blue, not this dusty gray we think is blue today. All of the beef that was eaten was grass fed and full of omega-3s (they just didn't know it) and no one was eating the 16 ounce steaks; those are an invention of the resturants. Meat was rarely the main focus of a meal; it wasn't as plentiful as most people think (it was raised for sellling, not cooking) the main focus of the meal were the vegetables, either fresh, canned or root vegetables and grains were. The Sunday roast was the big meal of the week and the leftover meat from that often served for most of the rest of the week. Fruits came from the tree, vegetables were grown in fertile soil and everyone know where all of their food came from (if they didn't grow it themselves, they bought it from someone who did). Only the staples, the flour (whole wheat), salt and such was in stores, that's if you didn't make it at home (the wheat flour at least).

But that was a long time ago and times and medicine have changed. Yes, there is a place for natural and organic in our food and our medicine. But thank goodness there is also a place for allopathic (Western) medicine, complete with anesthesia instead of a few shots of whiskey and a knife to bite down on. Willow bark is the original aspirin (Bayer just put a patent on the modified version and gave it a different name). We have antibiotics that prevent patients from dying of sepsis from a ruptured appendix. We have imaging studies to find out what the problem is instead of surgeons opening you up from chest to groin to see what's wrong inside (and someone holding the chloroform or ether near your nose in the hopes it's the right amount, but not too much). And we have pain medications that weren't even imagined just 50 years ago (morphine doesn't hold a candle to some of the medication we have available now).

Jimmy needs to be taking all the allopathic medications his urologist prescribed. Pain causes the muscles to tense up, including smooth muscles he has no control over and he is unaware of that are in the area surrounding the stone. If his pain isn't under control, there is little hope of that stone ever getting out. 2 out of 3 medications isn't enough; there's a reason his doctor prescribed all 3 and he needs to be on all 3. If the third is a benzodiazepene, then it's to relax the muscles (Valium was designed to be a muscle relaxant; it was later found to also be an effective anti-anxiety medication. So if that or one of the other benzo's is what was prescribed, ignore the negative label associated with it and no, he won't get addicted; it's simply prescribed to maximize muscle relaxation and get added pain relief, not for anxiety).

This is his body; he needs to stand up for himself (metaphorically) and take all of his medication and get this stone out of his system). There is time in the future to discuss holistic versus allopathic medicine; this is not it. This is one of those times when natural/holistic medicine has done what it can and it's time to take full advantage of all the tools allopathic medicine has, and that means TAKE ALL YOUR MEDICATION as prescribed!

If it's a case of your daughter in law will not pick up his other prescription, then you may need to go get it for him. If it's a case of her taking away his medication, well if it's pain medication or a benzodiazepene that she's taking away, that's a felony. That's how serious pain management is. These pills aren't doled out just for fun; this is serious pain and requires serious medication and it's treated as such.

Please encourage him to take this as serious as it truly is. Getting the stone out as soon as possible is important. The longer it stays in, the longer he will be in pain, the longer he has a risk of getting a UTI or kidney infection, and the longer he has a risk of the stone causing a blockage or other type of emergency (and when it's an emergency they don't always wait for the sedation to fully kick in before starting the procedures).

Lots of hugs,
Ruth

YEAH, the child passed the kidney stone! I mean the adult child..:( I keep forgetting that he is 44 years old. Please forgive me, as I know not what I'am doing, hahahaha...Anyway, Ruth sent him a letter last night telling him to drink at least 2 to 3 liters of water a day and he began that last night, being that he isn't sleeping anyway. He went to work this morning for a couple hours, came home, was in misery and asked his wife to call the nerologist for an apt. He said that he began peeing blood like crazy, then all of a sudden it came out, smaller than he could imagine, thought that it must have been huge, but in reality was only about 9mm or so. Thank God he caught it in the strainer the doc provided and he is so relieved. Is having a lot of renal colic and I told him to keep drinking lots of fluid and to take it easy tonight, said he is going to work tomorrow for a couple hours, but promised he would be kind to his body. This has been a eye opener for me, let me tell you. If you think that when your child grows up and is married and on his own, think again because it's just twice as bad as you aren't there to care for them. He is married, has a wonderful wife, two beautiful children and doesn't need his momma anymore, well sort of, ...LOL Anyway, folks thats it, he has an apt. on Friday and will go to find out what kind of stone it was. He did tell me that it was really jagged and pointed, sounds awful. Still peeing blood and lots of it, but promised that he will take it easy, what more can a mom do? thanks for all your help and words of encouragement, I really appreciated it more than you know. I Guess he is one of the lucky ones, from what I have heard. This was only about 2-1/2 weeks of pain...:( Good Grief.

lots of love,
Norma...

That's great, Norma. What a relief for everyone, especially your son!!
Lisa