Glad to hear your follow-up is going somewhere and you can pass at least some of these stones without help. Let us know what your parathyroid hormone shows if you will. That may prove to be the culprit in this long dilemna!
So... I've been doing some investigating... Turns out a lot of people in my family have kidney stone issues. My grandpas brother, his brothers daughter, his daughter (my aunt), my cousin (his daughters son), my sister (his sons daughter) and me. So it obviously originates from my great grandparents. Just curious if anyone knows hereditary causes for kidney stones? I've only found a few from reading online.
Yes, there is a hereditary tendency to endocrine gland adenomas (very small benign tumors) involving the parathyroid glands, or multiple endocrine neoplasia )MEN including parathyroids, that predisposes to calcium stones. Uric acid stones are hereditary also and associated with gout. So I am glad your parathyroid hormone levels are being checked, and that is quite a family history of stones.
It really is! I never would've known if I wouldn't have asked specifically! So I will be bringing that up at my follow up as well. I plan to do the parathyroid test tomorrow (as long as my boys are happy enough lol). I don't know how long it takes to get results back but I hope I get them soon! I lose my secondary insurance end of August so the sooner the better!
If you have elevated PTH you will need to see an endo and possibly surgeon, will need MRI of paratyroid glands, etc, which will take some time. Because of your insurance situation, I would get those appointments set up now, in anticipation. It may take a week to get PTH results back. You can always cancel those appointments if not needed. Is there any way you can prolong your secondary insurance past August? I would as I truly think you may be headed for parathyroid surgical removal, with MRI and consults preceding that. Don't want to scare you, just giving you a heads up to be prepared, just in case you have a high PTH that needs treated to stop these stones.
That's actually a good idea. Upon further investigation I found that both of my grandpas brothers daughters have kidney stones, as well as one of their children! I read up on MEN1 and it actually could be a good fit for what we have. One of his daughters is also hypoglycemic, which I read can be caused by MEN1 as well. This is all very interesting! My insurance through ohp ends at the end of August, I had it because I was pregnant but have had the baby so there's no way to prolong it. However, I have already met my deductible through my first insurance, but that resets in October. So if I could get all this stuff done before October I'll only have to worry about co pays. I am going to reapply for ohp but even if I'm accepted it won't be as great of coverage as I currently have (100% on basically everything). If it does turn out that's what we have, I'm surprised no one has got a diagnosis yet! You'd think with the girl who has calcium stones AND is hypoglycemic they would've done some investigating!
I would try to find an endocrinologist familiar with MEN, perhaps at your local university medical center. It is rare, and many Drs will not be familiar with it. (The likely reason no one has been checked or diagnosed yet in your family.) The condition has far reaching implications if present, for your entire family and future generations. There are websites and registries for rare diseases/disorders that have good info on this. Good luck and keep us posted on progress, please.
Update... My 24 hour urine came back totally normal, slightly low magnesium but nothing to be concerned about. So my urologist is referring me to a nephrologist to see what should be done next. In addition I have 2 stones in my right kidney too large to pass, I believe they're both around 6mm, so I'm doing shock wave lithotripsy in about a month. I would wait, but my insurance resets Oct. 1st and considering I'll need it done anyway, its better to get it done while my deductible is already paid. I am a little concerned about recovery time, I have a 21 month old and a 3 month old to take care of but it looks like my sister will come stay with us for a week or so in case I need help. Does anyone have experience with this? How long is recovery usually? And what could a nephrologist find that my urologist can't? I mean what kind of tests would he do next?
Hope you have good pain meds to take. I assume they told you, but be sure to strain your urine with a fine strainer to catch stone fragments and save them for lab analysis so you know what type stones they are. That is important for both diagnosis and prevention of future stones. Just put them in a little jar. Hope you feel better soon. You will be rid of these soon!
They told me to catch them but said since I've already got 3 analyzed they won't analyze, just look at them. Peeing straight blood since the surgery. I assumed my kidney would cause the most pain but in reality its my bladder. Even taking 7.5 vicodin every 3 hours barely makes it tolerable... Feels like someone is stabbing me. I called for stronger pain meds but they make me come into office to pick it up and that's a 45 minute drive so hopefully my husband can leave work to pick it up. This is worse than I expected that's for sure. Last time I had a stent it didn't hurt hardly at all :/
You probably have a lot of stone fragments in bladder poking and causing the stabbing pain. Those should flush out fairly soon. Maybe you could take 10mg Vicodin instead of 7.5mg to avoid the drive. They can call that one in. Or give you 5mg that you can take 2 of now then drop to 1 at a time as pain lets up. Sorry you are going thru this! I hope it gets better soon!
I'm still having pain in my bladder. It's not as bad as yesterday but definitely hurts. Hurts the worst when I need to pee, during and after. I'm still peeing dark red blood each time (peeing into hat so I know) I'm wondering if I should be worried that the blood isn't lightening up? It's been about 50 hours since surgery I thought the blood would be less at this point.
The blood may be less but hard to assess as even small amounts of blood will make the urine look red. I would not be worried, but would check in with urologist before weekend with any concerns and ask for an estimate on how long it might last. I'm thinking up to a week or so. Glad the pain is less today. You're on the mend!