Had my PCNL done - nightmare

Posted , 8 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

My PCNL procedure is over and it was a horror show. The best thing I can say about it is that it’s over. The doc does not yet have a stone report so I don’t know what I’m supposed to avoid. I am so envious of people who had no pain. Mine was excruciating beginning with the guide wire procedure that precedes the surgery. They took me into radiology about 1p. I was given Versed and Fentynyl and rolled over on my stomach. Did not feel the wires themselves but afterwards took me back to holding bay where the pain was unbearable for hours. It was so bad I began retching violently and with an empty stomach it made the pain worse. I expected to see internal organs in the vomit bag that’s how intense it was. I couldn’t stop dry heaving. Mouth was so dry I begged for a wet cloth on my lips to ease the suffering from mouth stuck together. Couldn’t even swallow, there was not one drop of saliva. They gave me morphine which took the edge off but the pain was so intense. A few hours later I finally had surgery. Mask over face, told to breathe deeply then I was out. Surgery took 1.5 hours.I woke up in recovery and was there 4+ hours. Problems with BP. A friend came to visit me but they wouldn’t let her in. Finally made it to room late that night. Pain was horrendous and continued for next three days in hospital. Nurses fussed at me for screaming so loud but I couldn’t help it. Got either morphine or other pain med. plus Aleve. Ct scan next day found small stone in other kidney but doc said I would pass that. I said good because there is no way I would ever go through this again. I swear I will do anything to prevent these stones. No pain meds at home yet, supposed to get them on Monday. Meanwhile just Aleve and lots of water. Bag fills up pretty quickly, deep red bloody urine. Unsteady on feet but have a walker. Truly one of the worst experiences of my life and that’s saying something. I pray for everyone facing this nightmare I hope you have lots of help, I don’t.  — JoBelle

0 likes, 15 replies

Report

15 Replies

  • Posted

    OMG. I'm am very worried now. I am so sorry you went through that. I am having the surgery Tuesday.  What scares me is I am in recovery. I have been clean almost 5 years and the pain thing is freaking me out now.  That's crazy that they let you lay back there throwing up and in such pain. 

    Report
    • Posted

      Nichol you will be fine. Most everything I read prior I surgery was so positive and uneventful, so I have to hope my experience was unusual. I am sure they will be sensitive to your recovery issues if you make it clear you are concerned. And if you have someone with you that helps a lot. I think they treat you differently when you’re alone. This was my first hospital experience on my own and it was very different. They don’t like it when you’re alone for some reason it annoys the staff. Maybe they were afraid I’d bother them for things but I never did unless the pain was unbearable then I would scream. But I wouldn’t bother them unnecessarily. It’s weird how you are viewed when you’re alone but I guess that’s the way it is. You take care and stay focused on the positive. There seems to be more of that than my my experience. Besides I can not describe the relief when it is over. Make sure you have enough meds at home including for nausea. I was glad I had some at home for last night. Best of luck and take care. — JoBelle
      Report
  • Posted

    I had the wire inserted during surgery, after urologist crushed stone. I awoke to horrible discomfort with tons of pressure on my bladder. I stayed overnight, the pain/discomfort was unbelievable. I couldn’t wait for the next pain med. Took a week off from teaching; went back, even though I had dr note for 3-4 weeks. If there’s ever a next time, I will definitely take the time. After 4 weeks of hell, had it removed. Been living on water, lemonade.
    Report
  • Posted

    I'm glad that this ordeal is over for you and very sorry to hear about your painful experience.

    Question, did you have your operation in the United States?

    Report
  • Posted

    Hi Jobelle

    OMG what an awful experience to go through I can not believe you had to endure all that pain . I could not have gone through all that sounds like torture. I am so glad I don't live in the USA if that goes on we complain over here about our health service never again will I complain after hearing this story so sad you had to go through that ordeal 😓😓😓I do hope you can recover well from now on take care x

    Report
  • Posted

    I will Be having that surgery shortly as well.  This story is freaking me out.  I dont Know what to expect.   I would Think it can’t be any worse than 3 child labors, 1 c-section and a deathly hypertension episode after the c-section.   At least that is what i keep telling myself.  But, I really don’t know what to expect.
    Report
    • Posted

      Kate..easy..don't freak out. I had mine done...but everybody is different. I had the hole and guidewires in for a week prior to surgery. And 2 stents and a cathetar strapped to my leg. Blissfully..like labor. The ordeal is soon forgotten and relief sets in. Breath..just breath and no worries

      Report
    • Posted

      HI Kate,

      You should be fine. Joebelle's case is very unusual. I have been dealing with stones for several years and had all three procedures done including PCNL and did not experience nearly the problems that she had. I had a very good discussion with my doctor/surgeon before surgery and brought many of the concerns that I saw on the net. He addressed each one. I spoke with the nurses and Dr before the guide wire was put in and was given strong pain meds in my IV. I did not feel anything during the whole procedure.

      Also, I did not feel any pain until after I come out of surgery about 2 hours later. The stent was placed in the back-best thing ever (virtually no pain and I was able to move around easily). Also, no pain experienced when the stent was removed!!

      Please make sure that your surgeon write in that pain meds are put into your IV instead of being taken orally. I woke up in pain as the pain meds wore off after surgery and was too nauseated to take them orally.

      I had stayed at the hospital overnught and went home the next day. My lovely made enough jello to last a few days and I just watched TV and read my Bible for one week until the stitches were removed. I slowly resumed my activities. It takes about 2 weeks for the outside to heal and about 4 to 6 weeks for the inside to heal.

      I usual do not take anything stronger than advil for pain; but in this case, I took the prescribed meds and felt very little pain as opposed to the other procedures. My pcnl was probably the best procedure out of the three that I experienced. Good recovery, pain was minimal and the stones were removed.

      I wondered where Joebelle lived. I only heard of stories like hers in places outside of the US.

      Report
  • Posted

    Oh my dear ..I know your misery. I hope they get the lab report back soon. Im 6 months in from my pcnl and the stones are back. Take it easy..gets better every day and good luck in the future with your diet or whatever to avoid the story repeating it's self.

    Report
  • Posted

    Sorry you had such a difficult time.

    I had really bad stomach ache on the second day after surgery and again on the fourth day.

    I think it is better if they put you to sleep before they start rolling you onto your stomach. That is what they did to me..

    I had blood in urine for a few days after surgery.

    Before surgery there was a lot of blood in my urine.

    I think with me I was so fed up with the pain of the kidney stones, I was prepared to go through absolutely anything to get rid of them.

    Saw consultant for a follow up a few weeks ago.

    Had another x ray.

    He said there was no sign of any stones now and he did not expect me to have any more trouble.

    Completely discharged me.

    Hope you get your pain meds soon and that you are able to put this nasty experience behind you now.

    Praying for you that you will make a good recovery.

    Do take care and keep in touch.

    Much love

    Sarah xxx

    Report
    • Posted

      Thanks Sarah I cannot wait to get pain meds. This pain is crazy, not one second of sleep last night. Nasty experience is right! Am so anxious to wipe my memory banks of this horror. So glad you are done, stone free, with good prognosis. Thank you for your care and concern. — jobelle.
      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up