Bi-lateral kidney stents

[thomas62]

Hi ladies, I needed to have stents put in prior to my last surgery in London last October in order for the surgeon to disect or peel a growth of my right ureter and which was successful. However, today at my local hospital review I was told I would need to have these stents long-term. My last CT scan states 7cm fluid collection around the distal ureter. This may represent a post dissection lymphocoele but a contained urinoma is a possibility. Are there any other ladies who have required stents and why? I must admit my review "floored me" and upset me. Best wishes. Gwen Xx

[Solange]

Hello Gwen. I'm just so sorry to read about your troubles. I'm afraid I know nothing about kidney stents so I can give no advice. I can understand how upset you must be and just want to offer you my sympathy. Hope things turn out to be a bit less worrying than they seem now.

Sending love and a gentle hug, Solange 😊

[thomas62 in reply to Solange]

Hi Solange. Thanks for your rapid response - much appreciated. Yes, it has made me feel r -really down today. When I started on this journey the medics told me I had kidneys of an 18 yr. old - well 6 yrs. on I certainly don't now! Also the thought that I may end up with nephrosomies fills me with dread. In a way all this makes me feel worse than my cancer has!!! I suppose I'm just feeling sorry for myself and having an off day. Best wishes. Gwen Xx

[Artgreen]

I’m sorry to hear this it must have been a shock if you weren’t expecting it.

I had stents to relocate both kidneys during surgery and they stayed for a few months and apart from UTIs I got used to them to a certain extent and didn’t need painkillers.

I felt I healed more quickly once they were removed just before chemo started.

They are remarkable in what they manage to achieve so I was grateful for them and it all works fine at present.

I do hope you get on well with them again and don’t find them too uncomfortable

Love

Alex

[thomas62 in reply to Artgreen]

Thanks for your reply Alex. Yes it was a shock. I went on my own as I thought all would be str.aight forward, i.e. just a date for removing the stents or even more short-term stenting but to be told long term was a shock and it really upset my day. I know you're right and I do agree with you when you say it's remarkable what they can achieve - yes, I'm grateful for my stents and I couldn't have had my last surgery without them! I don't know when this problem occurred - when the stents were fitted or as a result of my last surgery when I had a growth on the ureter which needed either peeling off/resecting! I'm glad yours were only temporary. Alex how do you know if you have an infection with these. Gwen Xx

[Neona]

I’m so sorry you have this to deal with. I have constant kidney problems as a result of damage from my original chemo and it is exacerbated by the trial drug that I’m on. I don’t know about stents though as mine is severe loss if magnesium.

[thomas62 in reply to Neona]

Hi Neona, Thanks for you reply. I'm sorry to hear that you have problems with your kidneys. How does your magnesium loss effect your kidneys Neona? Gwen Xx

[Neona in reply to thomas62]

I don’t know if it is doing further damage to my kidneys but the low magnesium levels cause cramps and spasms which are really painful. It can be dangerous if it affects the heart. I have to go to hospital for an infusion every week. However giving up the trial drug will leave me with few options and it has kept me stable for 26 months so I have a lot to be thankful for.

[thomas62 in reply to Neona]

Hi again Neona, Has your magnesium loss affected the output of your kidneys? The problems I'm having have definitely had an impact. Gwen x

[Neona in reply to thomas62]

i think it is more the other way round but I don’t really understand why kidney damage caused kidneys to spew out magnesium. Unfortunately mine is made worse by loss through my iliostomy so I’m pretty stuffed really. Just home from A&E for yet another infusion and was kept in for the night.

[Artgreen]

Dear Gwen, I don’t think you do know when you have an infection unless you buy some urine testing strips on line which I did. It feels like a mild UTI quite a lot of the time for some and it did for me but there wasn’t always an infection present by any means.

They aren’t very expensive and your GP may even write you a prescription for them.

Cranberry juice did seem to help keep them at bay for me too. A paracetamol every now and then for some relief from the low level pain helped a lot.

I do hope your longer term need for them means months not years. We do self heal which is a comfort.

Sending love

Alex x

[thomas62 in reply to Artgreen]

Hi Alex, I am hoping that the lymphocoele or urinoma disappear over time - don't know if this is a possibility or not! I tried to ask the Dr and get more information from him but I had difficulty understanding his accent and also that currently my ears are full of wax and olive oil - due to be syringed a week today. I have noted what you say abt testing strips. Gwen x

[Terrileeloughlin]

Hi gwen, I'm sorry to hear this, here's hoping it can be sorted out as quickly as possible for you. Sending love❤❤

[thomas62 in reply to Terrileeloughlin]

Thanks for your kind thoughts Terrileeloughlin Gwen Xx

[Brom42]

Hi Gwen, my mum had bilateral stents fitted last August a few weeks after her hysterectomy. She was admitted to our local A&E and eventually has the blockages confirmed and the nephrostogram showed she needed stents. We were told it was a quick fix until mum had completed the 6 sessions of Carboplatin/plaxitaxol/Avastin. She was due to have them removed as per the guidance of the consultant who did her sugery on 28/2. The local hospital Urologist told my mum they were to be replaced. We freaked out a bit as she was desperate to have them removed. It transpired that she may have scar tissue and stents will need replacing every 12 months. I can't tell you too much info as we've currently in a situation of not being given all the info as to why she had blockages post surgery. What the local hospital has agreed to is to remove, then test with dye, if ok leave them out, or if the scar tissue is there & a problem then the plan is to replace. Still in limbo & mum upset a bit but she is reviewing her options. Not sure if this helps x

[thomas62 in reply to Brom42]

HI Brom42

Sorry to hear abt your mum's problems. Yes I also thought it was to be a quick fix - I believed I only needed them fitted so the surgeon could operate to remove a growth off my right ureter yet know I'm being told I'm to have them permanently - can't really get my head around this. I think it is a good idea for your mum's hospital to test her ureters with dye -maybe it could be a possibility for me. Think I might take the issue I have further!! Thanks again and best wishes to your mum and yourself. Gwen Xx

[Janice252]

Hi Gwen. Sorry about your review. We never really know what we're going to hear. It's so stressful. I have had a stent in my left ureter for 2 and a half years now. I have never had any cancer in my kidneys but my first surgery was a bit of a nightmare. My iliac vein was cut and a vascular surgeon had to be brought in to repair it. I was in ICU for 3 days , in absolute agony. After much pleading from my family, they finally took me back to theatre and found they had cut the ureter too. A stent was put in and also a catheter and a nephrotomy. Doing chemo was difficult with those bags ! They were removed after 6 months but my stent is still in place . It's replaced every 6 months and I'm not hopeful of it ever being removed. To be honest it doesn't bother me too much. My only problem are the spasms which are really painful. I was taking Baclofen but apparently it was affecting my blood ! We can't win !Neona mentioned a lack of magnesium might cause spasms so I'll look into that. Hope you're as well as you can be.

Janice xx

[thomas62]

Hi Janice,

Thanks for your reply. Yes we think we know what's going to happen next especially when you are told it's only for the operation and then, next minute, you're told they will be permanent. Can't get my head around it!! For yourself, how awful that your vein and ureter were cut - you go into surgeryto be helped not to have more problems. However, I suppose you're thankful that repairs could be done but you're still left with the after effects, i.e. needing perhaps what might be a long term stent and the necessity of nephrostomy. You didn't need these events - it was enough to go through a tough first surgery. And stressful for you and for your family!!! Did you have any comeback off the hospital or just purely accidental! My stents haven't bothered me too much but I'd rather they didn't need replacing. Brom42 states that her mum is having dye put through her ureters to see if stents are required - I might ask about this as well. Yes worth checking your magnesium levels. Best wishes. Gwen Xx

[Kkaren]

Ha don’t get me started on stents!!! I had to have them fitted as during my hysterectomy the surgeon stitched one tube and twisted the other. I’ve had them since June 2018. They have obviously been changed during that time however on two occasions the urologist has been unable to change the left one and I’ve needed a nephrostomy. Seriously considering medical negligence as this has caused me far more stress and trauma than the diagnosis did.

[thomas62]

Hi Kkaren,

W ow your experience sounds appalling!! Presumably your nephrostomies were temporary! Yep I would consult a medical lawyer and ask the questions. I am seeing my palliative nurse next week and I'm going to ask abt. having a referral to a consultant even if I have to pay for one. Best wishes. Gwen x

[LindaMorrell]

HI Gwen.

I have put a few posts on this site regarding SLE and APS over the years. I had a new heart mitral valve and 2 new arteries fitted with open heart surgery 1st Oct 2019.

Jan 7th 12 weeks after the heart issues and back to work I started to pee out what looked like bottles of Chianti that morning the urine cleared but then the horrendous pains came. I was rushed by ambulance to hospital they thought it was a kidney stone. It was actually blood clotting in the right Ureter. The ureter that comes down from the right kidney into the bladder. A 10" stent was inserted and removed 5 weeks later. A biopsy was taken and another stent replaced the first. No real pain just uncomfortable. and a lesion on the inside of the Ureter After both operations I continued to. pee out what looked like dark/black red wine. On top of this I endured daily visits from the blood nurses to administer Clexane due to an issue in getting my INR range back up. I did eventually get in my safe range last week.

The biopsy showed low grade cancer cells with a possibility of more small ones in the kidney.

30th March Last week I had to go private to get things moving. I was designated as category1 patient and this Wednesday 1st April I get the right kidney and the right ureter removed. I am not in pain. I look fit and well, though I am restricted on things I can do.

If I was you, I would learn as much as I could. I didn't experience your problems and I hope they are very soon sorted. My pains came when it had already manifested.

I hadn't heard of anyone else having problems with the Ureter with APS - Lupus

I am in good spirits and glad it is all being removed. I am lucky the left kidney is good so hopefully as long as the cancer gets removed I will make a quick recovery.

Not a good time to go into hospital but needs must.

Take care. special thoughts and quick healing for you

Kind regards. Linda

[thomas62]

Hi Linda, Thanks for your message. You've been through the mill haven't you and a very worrying time re. your open heart surgery. I hope this is the end of heart issues for you. But then what a shock for you re. your ureter and kidney. I myself haven't had any bleeding at all when I pee - in fact, it's generally quite clear but I will definitely make sure I keep a check on this following the issues you're having with the ureter/kidney. What a shock for you to find out that you have low grade cancer cells - have these come from the lesion you mention on your right ureter?? Is your cancer low grade serous Linda? I don't know what SLE and APS are - presumably APS is Lupus! I'm finding it quite difficult to learn abt ureter/kidney issues - I've only seen one dr. at a recent review who said the stents would be permanent although would need changing frequently and also possibility of nephrostomies - however, I couldn't understand what he was saying very well due to his accent and also because my ears needed syringing! I find it all very scary. I'm now waiting for an appointment at my local hospital to have the stents changed. I do have 3 monthly scans so these will give me info on what is going on here. - hopefully! Good luck for lst April and hope that all goes well. Will be thinking of you. Best wishes. Gwen x