Nephrostomy Tube

Sorry, can't help with your question but I'm sure there is someone on here who can! You should also ring up the Macmillan nurses on here - they will find out everything for you.

All the best

Andrew  xx

Thank you for your reply Andrew.

We have a MacMillan Nurse who calls every week but she says that the decision lies with my husband. We were only trying to find out if anybody else was/is in a similar situation.

Incidentally, I have been following your own journey since Day 1 and wish you a long and happy life with tgirl. I can't begin to think that the Wedding will be a scrap less than perfect.

Best Wishes,

Tricia.

Hi Tricia,

I hope you find someone on here who is or has been in the same situation. Finding other people on here to chat to really does make a difference! Might be worth putting up a simple blog asking the same question as that might get a wider audience as not everyone looks at the specialist groups/forums.

Makes me smile at the thought of people following my story over these months, there seems to be a lot out there that nag if I haven't blogged for a few days!

sending love n hugs

Andrew xxx

Hi, I know just how you feelmy son has one in his right kidney and today is getting another in his left as his cancer is inoperable so I see then as a life line also so nice to be able to share with someone else who is going through this as. We have never had any thing in our live's  like this before give you husband my best wishes and you take care of yourself. I will keep you updated on my son's progress

Linda.

hi

yes, i'm on my second nephrostomy tube. i had the first one when i had chemo to speed up drainage from my kidney (i only have one)after a stent caused a further blockage. that came out on its own after the treatment stopped and i thought i'd die on the spot as i'd been in acute renal failure when it was put in as an emergency procedure. however i lasted a year without one before my kidney function got really bad again through blockage by the bladder tumour. my new one was fitted about a week ago and i'm getting used to the inconvenience all over again - altho as a woman i can appreciate being able to pee without full body exposure from the waist down!

i found your post after many internet searches for a nephrostomy support group or society but there doesn't appear to be one which is a shame. from what i've heard it seems to be regarded as a relatively temporary set up, but can be replaced

like many others no doubt, i've found out that the treatment of cancer is often far from being an exact science. it is not very reassuring when it seems the specialists don't know what to do for the best and all i can say is that at least it gives patients a chance to make choices even if they are very hard ones

all the best

gabimac

Hi Linda,

Thank you for your response to my post.

Sorry that I'm late in replying - comp. problems.

All that I want to say at this moment is, how is Raymond? That is important right now. I have just read your post re the second Nephrostomy Op. being put back and I am thinking of him, also yourself and family.

With so many good wishes and positive thoughts.

Tricia.

Hi Gabimac,

Thanks to you also for your response.

Well, my husband decided that the tube was staying put and the Urol. said, okay. In the last few days he has had pain just above his right kidney (his only kidney) and finds it difficult to sit/lie comfortably. We were thinking that perhaps we should have asked to have it changed as it's been in place for 6 mnths now. However, if the pain becomes even more troublesome and the 'floaty bits' in the tube increase, then we will ask for guidance (I hope?!).

I do hope that you are becoming accustomed to the new bag, but sorry that you have to have one again. But hey, who wants the dreaded blockage.

All good wishes,

Tricia.

Hi Tricia,

Thank you for your lovely message, It has been discovered that Raymond has an aggresive lymphoma and has to have kidney stent's put in and a bone marrow test on Monday and a C.T. scan on Tuesday. I will keep in touch and let you all know how he is.

Thanks for all the positive thought's

and good wishes,

Linda

Hi Linda,

Please tell Raymond that we will be thinking of him. All the tests that have to be done certainly make your nerves frazzled. Try to be strong.

Love and Courage,

Tricia.

Hi Tricia,

Thank's for  your reply I will pass on your best wishes to Raymond and I will keep posting as the test results come in.

Best Wishes,

Linda.