I am right there with you

[redrider269]

I was diagnosed in oct 2016 with FSGS stage 4 the first time a was seen by a kidney doctor. I am now stage 5 and I just went to see a surgeon about have the catheter to start PD dialysis soon I am scared to death because I don't know what to inspect. I also work full time and need too.

[Philipjm]

Hi Redrider, it is very scary to be told your have CKD. I started CAPD 4 years ago, worked great for me and greatly improved the quality of my life.

Due to an infection I had to change to HD.

I work full time, with PD I had to have 4 exchanges each day, my employer found me a quiet room with hand washing adjacent, hygiene is so important with PD.

Yiy could adopt for machine PD and do it over night while you sleep. I do HD at home over night while I sleep, every other night.

Just have to plan everything and it should run smoothly, your employer should make reasonable adjustments to allow you to dialyse at work if you choose CAPD.

Your renal team should talk you through all the options. The procedure for the tenkoff catheter is a short procedure ax a day case. Once fired need to heal the wound then start about two weeks later. In my case my dedicated renal nurse came to my house to check I had a suitable room, nurse visited once a month to take bloods. Life can be good again, I still work although I am 72, I travel, look after a large garden, holidays need to planned but they should not be a problem.

Speak with your renal team and they will be great at explaining all.

Best wishes

Philip

[redrider269 in reply to Philipjm]

Thank you!

[Bunkin in reply to Philipjm]

You are awesome!

[Bunkin]

I am nearing that point as well. I, too am petrified. Not knowing for sure what to expect and afraid of infections. But they say PD is easier on your body and I live a good ways from my doctor so HD isn’t really an option. Please let me know how your procedure goes. My appointment is in September. Prayers for you. God can do anything 😀

[Philipjm in reply to Bunkin]

PD is done at home as is HHD, no need to be near your renal team

Philip

[Bunkin in reply to Philipjm]

Not here for HD. Our water is not good enough

[Philipjm in reply to Bunkin]

With the nxstage machine filter and ioniser should be ok.

Philip

[areyoukidneyme]

Hello! I was also scared to start PD. I had the catheter embedded in March and then resurfaced in June. I’ve only been doing PD for a couple of months but honestly, it’s one of the best things that has made a difference in my health.

The very next day after I had my catheter resurfaced, I started PD training. It took two weeks and the nurse was so helpful. That’s what made the difference for me, the team of PD nurses who are available 24/7. I was able to ask any questions and shared concerns.

I was initially afraid of doing home dialysis because of the hygiene factor. But it’s well worth it, in my opinion. Yes, you have to clean more frequently but remember, you don’t want any chances of infection. Currently, I’m on antibiotics for peritonitis (I’m convinced I have something else but whatever. The test came up positive). It may take a little bit of time, but you’ll get the hang of it.

I can’t say much on the work aspect as I don’t work outside of the home. But PD offers a lot of flexibility.

Good luck!

PS: Part of your team should include a social worker. He/she can help you find resources and apply for government aid for some extra help (if you’d like to of course!). So far I’ve had good experiences with mine and have been able to get disability assistance (being on dialysis qualifies you). She has also listened patiently to my rants about adjusting to living with PD. I’m very thankful for mine

[redrider269]

thank you