30 week waiting list

[jules45]

Hello everyone, Ive been posting on here for a while about being on a catheter after suffering two bouts of bladder retention which are quite serious. I am a cirhossis patient with portal hypertension and had to have an emergency catheter fitted on 1st November which I still have waiting on a urology appointment. Just had the news its a 30 week wait in Wales. I thought the doctors receptionist said 13 weeks! So its 30 weeks for urgent referals. Going to investigate a private consultation and see if my auntie can help me out with it. Feeling very deflated after this latest news. Will still try and have a happy christmas and hope you are all okay.

Best wishes

jules x

[gamesmaker]

That seems a terribly long wait. Good luck and try and have a good Christmas

[jules45 in reply to gamesmaker]

Hi and thanks for reply. Happy christmas to you too.

julie x

[AyrshireK]

That sounds shocking, can your liver team not pull strings to get you seen sooner? due to possible implications on your health generally through infection etc. Didn't think a catheter could be left in place that long but I don't know the ins and outs of the procedure (pardon the pun).

Wishing you all the very best.

Katie x

[Bolly in reply to AyrshireK]

Oh my that's awful. Catheter can be left in permanently as long as a nurse puts a "clean" one in every few months and the leg bags are changed at least once a week. There is a risk of infection from the catheter so tip top hygiene is imperative. I have one client with bladder disfunction who self catheterises daily and has done for years as he is disabled from the waist down and another with kidney disease where I change the bag for her but the district nurses change the catheter.

[jules45 in reply to Bolly]

Hi Bolly, yes the waiting time is not good. Just managed to secure funding from my auntie for a private consultation and an MRI but that is it - after that it is up to the what the results are. A good thing is that the private doctor is based at the hospital that manages my liver so I have given them the details of my hepatologist etc. He would have been the doctor I would have seen in 30 weeks time on NHS. I realise I am lucky to have a generous aunt as there are many that wait and wait and wait. I was becoming so depressed. Catheter been changed from 16mm to 12mm and I go to district nurse weekly.

lovely to hear from you

julie x

[jules45 in reply to Bolly]

Hi Bolly, had the shock of my life today as I have been sent an NHS appointment for consultant urologist at my main hospital where they hold my notes for 11th January! Hooray at last.

Best Wishes and thanks for support

julie x

[Bolly in reply to jules45]

Great news. Now you can pay back Auntie and have a less anxious Christmas!

[jules45 in reply to Bolly]

Hi Bolly, just sent a cheque to my auntie and cancelled private appointment. I will definitely have a better christmas and hope you do too

julie x

[jules45 in reply to AyrshireK]

Hi Katie, been told no letter of support from anyone will make any difference at all. As Ive just told Bolly I have been lucky to be given a lifeline by my auntie who is paying for private consult and if needs be an MRI. I am so depressed about wearing a bag day in day out and the night bag change etc. I am so lucky to have my auntie as I feel for other people who have to wait and wait. This lifeline is only a one off and I said I would pay her back which I will. I thought the same as you having a catheter in for months can't do you much good. Bolly said providing catheter is changed it does no harm. Go to district nurses every Friday for a leg bag change but not an internal change.

At least Ive been thrown a christmas lifeline.

julie xxx

[AyrshireK in reply to jules45]

That's a shame that you've had to go private, 30 weeks is a terrible waiting time but hopefully when you have had your private consult and necessary tests you will get some proper treatment. Glad Bolly has been able to put your mind at rest regarding the catheter (every day is a school day so i've learned something there). I hope you manage to get rid of the horrid bag and make some progress and manage to have a decent Christmas.

Katie xx

[jules45 in reply to AyrshireK]

Thanks Katie for all your advice this year and a happy christmas if I dont hear from you before. Keep well. Private consult on 21st December in Newport, Gwent.

julie xxx

[jules45 in reply to AyrshireK]

Hi Katie, had some good news. After organising private consultation and raised the money had an NHS appointment come through for 11th January! Im so pleased. Thought I would let you know.

Best wishes

julie x

[AyrshireK in reply to jules45]

Good stuff, glad they got that sorted for you.

Thoughts with you.

Katie xx