Kidney stent hell
Posted , 3 users are following.
Passed a stone in July 17, infections afterwards, hospitalised with sepsis Aug 17, 7mm stone stuck in place was found when scanned after I'd been in hospital a week due to wrong type of scan being booked by medical registrar.Had a stent put in to relieve kidney pressure, told would be out in 3 to 4 weeks. Agony from day 1, cramps, stabbing pain, pain in testicles, stinging urine and blood with every pee. Stent left in for 17weeks, due to hospital forgetting to book removal date and cancellations when gowned up ready for surgery. Eventually removed early Dec and stone removal awkward, needed stent replacing as stone had caused damage. Told stent in for 7 to 10 days. Rigid cytoscopy has ruined my penis dont know what they did but they must have pulled and pushed when it was in, had 4 small cuts on end of penis shaft and it appears "bent and broken". Twice as painful as first stent, tried to remove it under a local in late December, couldnt do it, surgeon asked me how I pee as it looks awkward, told him I have to sit to wee as it just comes out at wierd angles. Couldnt remove it due to penis damage and the fact I was screaming the place down, never ever have this procedure folks, it is a form or torture. Since then I have been almost bed ridden, in agony, penis bleeding and urine bright red and cloudy and feels like passing acid. Hopefully out this Friday in theatre while knocked out, just hope I have a penis left when they have done!!. Then the questions will begin as I complaining in a big qay about the treatment I have had. To date I have not seen an urology doctor about my issues, other than when having surgery for a few minutes to sign my consent. Have asked to see or speak to someone but nothing arranged. I have complicated health issues, short bowel, ileostomy, fibromyalgia, bowel to bowel fistulas and hypertension, bit of proper urology advice was been very amiss. Hope after Friday I can get rid of the stent pain.
0 likes, 4 replies
Luna_Sea rob05788
Posted
Let me start with saying how sorry I am that you have had to endure such a horrendous ordeal. It doesn't sound like you live in the states? If that happened here, I would be looking for a lawyer to represent me in a malpractice lawsuit. You have been done a serious disservice.
From this point on, assuming your particular healthcare allows it, you need to demand the service of an actual urologist that you can talk to and air your grievances with. Especially if it turns out you now have erectile dysfunction or other such problems. I wish I had a better understanding of how things worked in other places, but here I was sent to a urologist when the stone was discovered and he made the treatment decisions. I also have the power to change my urologist at a whim if I don't think he's doing a good job (which I did with my first urologist and found one that I'm much happier with).
If you live in Britain (as quite a few people on this forum seem to), some of them have found showing up at the hospital whenever they are feeling pain moves things along much more quickly, otherwise, they are forgotten or put on hold much like yourself.
You describe the stent (the first and following one) as painful. Are they giving you anything to make it less painful? Typically these meds include hydrocodone (mostly for stone pain), flomax or something similar (to dilate the ureter) and urabel/uramit (changes the color of your urine and controls spasms that cause pain from the stent). I have personally found the combination of these three make the stent tolerable to live with. If you haven't been given this combination, I recommend calling them and insisting on it.
I hope you are not permanently damaged. I'm appalled by the service you have received and the lack of care for your comfort and well-being. I also hope you have some recourse to bring light upon what you have gone through. I used to think my first kidney stone treatment was a nightmare because it took a month to resolve...but I have since come to realize how good I have had it.
As much as I dislike our american insurance plans, deductibles and out-of-pocket expenses...the speed with which I receive my services almost makes up for how expensive it is.
rob05788 Luna_Sea
Posted
Thanks for your reply. I am in the UK, personally I'd
Ike option to not pay the state my National Insurance but pay a good private plan instead, but can't afford both and state one is a compulsory deduction. I am on Tramadol, Lyrica and Pregablin for my existing pain, docs wouldn't give me anything to ease the bladder spasms, said it woud affect flow from kidney??. Have spent a lot of time in hot baths and showers as well as using heat packs. I was never told that having an ileostomy can lead to kidney stones, evidently the problems with keeping hydrated and the fact that the large intestine, which I dont have anymore, absorbs chemicals that regulate the uric acid in your system and that helps avoid kidney stones like mine. Could have had a different diet and taken a supplement had I been told this. Cannot wait for tomorrow and this stent out, of they have to replace again I think I will literally cry. I am going to seek legal advice, as my care has been very poor over the lat 7 months.
Thanks again for reply.
Best wishes
Rob.
sarah87162 rob05788
Posted
I had kidney stones removed at beginning of December and had a stent and a catheter. for a week while I was in hospital. I was a complicated case as I have horseshoe kidneys (joined together) which made access to the stones very difficult. However the consultant did manage to remove all the stones so I was very lucky.
Think I may have another urine infection seeing GP tomorrow.
Take care and keep in touch
Sarah
rob05788 sarah87162
Posted
Thanks for your reply. I am taking it further. Have written to hospital asking for their comments. Booked an ultrasound scan which was wrong one. Needed a bladder and kidney CT scan. Only got one as an emergency at 5pm on my 6th day in hopital. My left kidney has cysts so need to keep right one ok. Just hope its not damaged by the stent. Never looked forward to a surgery as much in my life as I am tomorrow's and I've had many surgeries since birth. Born with a small tail on end of spine, bowel outside body and no rectum. Got my fingers crossed for tomorrow.
Thanks again
Rob.