Hey all, I usually post on the chonic pain forum and Friendly One mentioned I pop over here. I have a disease that causes chonic kidney stones. My first were when I was 18. They did a cat scan and I had tons of little stones passong on both sides. Since then I've had over a 100 stones, 3 basket retrivels, 4 lithotripsy's(all in the last 18 months) and 2 stints which I will never have again.

Unfortunately my stones are bigger my last 3 being 1cm each with a 8 and 10 mm. My last bout was 13 and last scan showed a 6mm on the left.

Friendly said something bout NO lithotripsies and I wanted more info. My doc is concened since I've had so many so recently. What do you do if not litho? One of my Uro's was going to go through my back to get 2 stones with one procedure but the thought of major surgery and 8 days in the hospital feaked me out although I ended up in the hospital for 5 days anyway.

I've had some real bad episodes with these stones and my uritor's have had it. During one basket extraction, he lost the stone as it went back up and it had a sharp point and got stuck. He finally got it but they had to keep me sedated for 3 days because the pain was so bad. I cannot tolerate stints, have had a real bad expeience with that, the stones got stuck behind it and when they removed it lots of swelling and passing those pieces was horrible. Even with litho, my stones don't turn to sand, I still pass fairly lage pieces. For awhile there I was passing stones every couple weeks. I wanted to die the pain was so bad.

Because my disease is causing them and we can't get it into remission I am stuck with these stones so any input will be much appreciated.

I know alot of this has been said already in the other posts, but they were so busy, I thought I'd start a new one rather than answer one of the others.

Thanks!
Melissa

What is the illness you have causing them?
I guess drink lots of water.Im not sure what they would do with so many.Im sure someone on here can answer your questions tho.I so sorry and will pray for you

Hi Boxer...It's the stone queen here, now friendly one. Anyway....I'm glad to see you posted a thread over here! You said you've been through some of my prior posts. So, do you know all the surgeries I have had? The reason I ask is because ALL of my docs tell me I'm NEVER to have another lithotripsy....EVER! I have had the surgery where they go through the back called PCNL (percutaneous nephrolothotomy). IMO, it was worse than being cut open. I was in the hospital for a week. Bad....very bad (fever, severe infection).

The reason for this is because I now have only one kidney. The other was removed almost 2 yrs. ago due to toooooo many lithotripsies, stones, scar tissue, etc. Lithotripsy has also given me high blood pressure for over 16 years. I started having litho done in 1987 when it first came out. I was 16. I started having stones at age 9. By age 20, and tons of lithos later, I have high b/p. I'm 36 now. How old were you when you joined the "stone club"? High b/p isn't good in itself, definitely not good with only one kidney. This is why I'm not to have anymore done.

My docs say a few probably won't hurt someone that is healthy, but don't keep having them done. I've had over 40+. We just stopped counting. Then there is all of my other surgeries. Won't go into detail since most of you already know how many I've had and what they have been. I will just say I've had over 65+ surgeries all together, with 14 of them being major, invasive with huge scars.

Just curious....are the stones the reason you are in PM?? I am. That's another catch 22. The meds I'm on (Oxycontin, Actiq, Xanax, b/p meds, heart rate meds) are filtered a little by the kidneys or in my case, kidney. My only kidney is already dysfunctional/failing. But, I have to have these meds just to get out of bed and my docs know that. They are worried about the extra filtration of these meds, but I don't really have any other choice. I thought about having a fentanyl pump implanted into my spine, but I've just heard so many bad things about them going wrong. I'm not in full blown failure yet, because I would be dead. I WILL NOT go on dialysis and transplant is not an option.

So, Boxer, ask away any other questions you might have and I will try to answer them, ok?? Take care and bye for now!! :angel:

P.S. Sorry, I just reread your post about your stone disease starting at age 18. If you don't mind me asking, what disease started your stones? Mine was primary hyperparathyroidism. I've had over 400+ stones. We stopped counting years ago, so who knows by now.

Friendly wow you sure have been through it. I was 17 when I first began having stones. Unbeknownst to me I had sarcoidosis which is why I have stones. I'm on pain management for sarc,(which is an auto-immune disease so I get the joint pain, chrippling fatigue, muscle pain, right now it's affecting my lungs, kidneys, skin,blood,and lymph nodes) cancer and a whole buch of other things most of them as a result of both the cancer and sarc.

With my last litho, the doc was beginning to get concerned, but my stones have been so big and I DO NOT want to be cut open as I have had 15 surgeries and I am so OVER that. The problem is there you are dying in pain with a 1cm stones sitting above the uritor and all you want is it OUT. I'm going to have to do some research on the other options. What does the PCNL consist of. I am always concerned because of my disease I usually have complications and it sounds like you did too with this PCNL. Is the best answer to be cut open??!!

Hopespring, I can always use prayers, thanks!:angel:

Melissa

Hi Boxer,

It really just depends on what your doc is comfortable (and you) doing when it comes to surgery. Generally, when stones are over 1cm, the PCNL or open surgery is usually the best way to go. Lithotripsy, generally, is not a good thing for a stone that big. You just end up having repeat procedures done (like me) and then you are left with tons of pieces that may or may not get flushed all the way out. If they don't come out, more pieces start sticking together and growing and then you are right back where you started, possibly with an even bigger stone.

The PCNL (percutaneous nephrolithotomy) is where they make about an inch incision in your back right above the kidney where the stone is. Then, they can put instruments in the tiny incision and dilate it and open the kidney, again with a tiny incision and then dilate that. Most of the time, the stone can be taken out whole. If it's too big (yours may be and depending on location of stone) they can break the stone up and suck the pieces out through the instruments.

You have a tube that comes out of your back called a nephrostomy tube that drains your kidney. Everytime you move, it hurts like hell, at least it did for me. Probably because I was just sooooo sensitive with that kidney. That was the kidney that was eventually removed. Average hospitalization time is 3-5 days, that is, if everything goes as planned...i.e., no infection, no fever. Sometimes, more than one access incision is needed. It just depends on the situation. The more incisions, the more neph tubes you have.

When I had mine done, they put me to sleep for a while so the interventionalist radiologist could put the neph tube in. Then the next day, I had the surgery. Sometimes, they can do it all at once. Just depends on the surgeon and his schedule. I must warn you though. This was the WORST procedure I have EVER HAD! This was because the surgeon promised he had already talked to the hospital PM team and I would be set up with a PCA pump and given liberal amounts of meds due to my tolerance and currents meds. WRONG!!!! He didn't talk to the PM team and I wake up in recovery SCREAMING MY HEAD OFF!! The recovery nurse was like "we already given her 50mg of Demerol, she should be out". Are you kidding me???

Well, the surgeon comes in and I'm yelling at him, my husband and mother are also yelling at him, the nurses are yelling at him because my b/p is 250/150 and they think I'm about to stroke out!

Well, 30 minutes go by (seemed like an eternity) and my b/p is still climbing and I'm still screaming and my family is a nervous wreck. Finally, the PM team comes in and hooks up my PCA pump full of Dilaudid. I kid you not, it took 15 mg of Dilaudid spread out in 5 mg doses in 30 minutes to finally take the edge off. I was still miserable. Don't leave it up to the surgeon to make sure you will be taken care of in recovery. Us chronic pain patients, as you know, make docs and nurses very paranoid with the doses we need. I remember one of the nurses telling me they have seen people die with just 1 mg of Dilaudid. I said "you don't know ANYTHING about me or my situation. I'm not going to die on you. Look at my med chart". She did and said "you poor thing, your are an addict". WHAAAATTTTT!!!! Totally idiots!!!!! This is just so sad that the med profession does not know the difference between dependency and addiction and I was in NO mood to explain. This is not something you should say to a post-op patient that is in horrendous pain and stroke level b/p. I basically told her to get her a** away from me before she ends up on the floor from me punching her in the face!

Anyway, whatever you decide to do please talk to the PM team BEFORE your surgery and have a plan in writing! That is one mistake I have never made again. By the way, I never went back to the SOB doc, either!

If you have anymore questions, ask away, ok?? Talk to ya later!! :angel:

Thanks Friendly for the info. Your surgery sounded like mine. I went into the hospital on wed for litho with stent. When I woke up in recovery I was miserable, but I really wanted to go home even though my husband and I had decided before the surgery if I was in pain I wouldn't go home. Well like an idiot I went home and in less than 12 hours, we were calling the doc for an admit. He said since I went home I had to go through the ER. OMG! Of course it was slammed but since I just had had surgery and I was running a 103 fever, they admitted me right after triage. I travel out of town for my PM so the doc that wrote my med orders was the GP on call. The only thing that saved me was my Uro had me admitted with the meds I was on so with the little the GP added I was somewhat OK. AFter being in for 3 days and no stones passed and I went through with a bad pain episode where they upped my extra pain meds ( every 3 hours instead of 4 whoopie:rolleyes: ). He thought he missed the stone and we scheduled another surgery to remove the stint. Well I don't know what happened in surgery(actually the stones had gotten backed up behind the stintand my uritor was swollen) but I woke from the anesthesia screaming. My nurse felt so bad but when she came over she said "you poor thing you just had a kidney transplant." WHAT?? That did get through my haze of pain and I told her NO< look at my chart. Anyway she ended up giving me like 4 shots and then called the doc to get permission to give 2 more. Now this was bad pain, writhing, sceaming pain. I could not figure out why they couldn't get it under control. She told me that was all she was allowed to give and they woukd give me more upstairs.

By the time I was on my way upstairs, the pain had become tolerable, but after an hour it came screaming back. I pushed the button for the nurse and said I needed more, but she said I needed to wait 3 hours. I told her I couldn't. She started to get mad and had the LPN come in and take my vitals and they were like 180/120. So she goes and call the Uro who calls in PM who order a pump. I begged for a shot until they got the pump on the floo but the PM intern said he didn't want me to quit breathing. I knew I could have had it, but I had to wait. It was an eternity waiting for that pump and mine was giving me 1 mg of dilaudid every hour and it took 6 hours to get my pain controlled. My husband stayed with me as I paced the halls until 1:00am. It was horrible, I still get nightmares.

I almost couldn't go back into surgery after that I was so afraid I would wake up in that kind of pain again. But the Uro I use now is not stingy with pain control. He once said he'd keep me knocked out until he could get to the stone. He is so good I've had him as my Uro for 15 years all except for that one time. I wish he was my doc for everything.

I'll have to talk to him about that PCNL, thanks!

Melissa