The time has come....

[Nikki41775]

well, it looks like the time has come. My doctor wants me to see a surgeon to have the access point put in for PD dialysis. So, I am going for my consultation this morning. I'm scared! Scared of the operation, scared of the recovery time, but mostly scared of dialysis!!

I miss my old life. My latest labs show that my creatinine has jumped to 4.4 and my potassium is back up to 5.6. It amazes me how quickly I went from feeling fine..no symptoms of this disease to feeling just awful every day all the time. It's become a struggle for me to get up and go to work every day when all I want to do is sleep. I know dialysis will help me and ultimately keep me alive until I get a kidney...I just wish I wasn't so scared.

My question for anyone reading this is this- have you had the procedure for the PD catheter and if so, what was your experience? I'm trying to get through one thing at a time so I figure I'd worry about dialysis after I get through this.

Thanks for listening and sorry for venting...

[Philipjm]

Hi Nikki,

I started on PD - 4 exchanges a day, worked great for me, felt so much better.

The procedure is straightforward and only takes 40mins ish.

I had to change to HD as my pd tube became infected and could not clear the infection.

My fistula procedure took almost 2hours, I had a block in my arm and felt nothing. A little sore later but was oK.

Started HD 5 weeks later and have been great since.

Soon went to home HD and within 2months changed to nocturnal HD every other evening, 7.5 hours while I sleep, I do get around 6hours sleep, hard at first but about 3/4 weeks to settle into routine.

On nocturnal with my nxstsge machine I am getting the same clearance D a Kidney transplant and I have an almost normal life.

I am 71 and still work full time, holidays can be organised if you plan well. We are of to Australia next summer.

If you are on the transplant list at around 15 eGFR there is a good chance you may get a transplant before you need dislysis (in the Uk). I have been for 2 while on dialysis over the last 3.5 years but sadley the donor kidneys were not viable, dissapointing but possibilities are coming.

It will

Happen one day, being positive and working with yiur renal unit is the best medicine.

Hope all goes well for you

Philip

[Nikki41775 in reply to Philipjm]

Thanks for writing! I got on the transplant list as of November 1 and have a live donor who has yet to be tested.

That’s great that you are doing so well! Hearing stories like yours makes me hopeful for a positive outcome for me

Enjoy Australia when the time comes!!

[AnneEG in reply to Philipjm]

Hi Philip, just read your post from a year ago. Hope you're doing well. Assume you are in the UK? I'm quite new hear and live in Scotland.

[AnneEG in reply to Philipjm]

Can I ask what it's like to have HD with a fistula and was it fitted with a local anaesthetic ?

[Nikki41775]

Well the surgery date is set. December 7th. So scared..,

[Philipjm in reply to Nikki41775]

Hi Nikki,

Wonderful, I am sure all will go well

Best wishes

Philip

[Bunkin in reply to Nikki41775]

Hi! Haven’t been thru it yet but am nearing it so can’t help with any of that. I too am curious about the procedure and dreading it. But I’m trying to focus on the latest news on the bionic kidney and the wearable kidney. The wearable kidney has been thru 3 of 5 trials to get approved and has had great outcome. I know that you n our lifetime, in the near future, this will be developed and we won’t need dialysis! My thoughts and prayers are with you in the upcoming days. You can do this!! If you need to talk just shoot me a message. I know it helps me to talk to someone in the same boat.😀

[Nikki41775 in reply to Bunkin]

thanks for the encouraging words! It definitely helps to talk to people going though the same thing!

[fleo]

Nikki, best of luck to you. I have a meeting with the surgeon next week and they want to do a fistula and a PD catheter. I've talked to others and the actual procedure shouldn't be difficult, I think the mental aspect is harder thinking of a tube extending from your abdomen, but I think it will be so much better than going to a center. I'm not sure I'm sold on the back up fistula at this time though.

Good luck on your procedure, I'm dreading it too, but know it's the first step on a journey.

[Nikki41775 in reply to fleo]

Best of luck to you too!! Why does the surgeon want to do both?

[fleo in reply to Nikki41775]

Nikki, the logic of getting the fistula in addition to the PD catheter is basically a backup plan in the event the PD catheter fails or I get an infection and have to fall back on hemodialysis. If the PD failed and I didn't have a mature fistula, then I would have to the temporary catheter through the neck until the fistula was ready. I don't mind the extra surgery to have a fistula ready for use, if needed. I will be asking the surgeon about having a "buried" or "embedded" PD catheter so that the tubing is place underneath my skin, mature, and be ready to use when I progress to the need for dialysis. My labs say I'm need dialysis now but I feel well enough to delay the start of dialysis, which obviously can change quickly. Good luck to you on your procedure. Ask lots of questions.