New to Dialysis and Pretty Worried

I have Microscopic Polyangiitis and it has destroyed my kidneys. My creatinine level is at 4.4, my Neph said I have anout 11% kidney function remaining. I’ve decided (I think) on CCPD, and he has had me meet with a surgeon for a catheter placement, but now everything is on hold because I’m not “too” sick yet. I’m just scared, how long do I wait before I get the catheter? Is a presternal catheter better? Should I go ahead and get the catheter and then wait to start dialysis? I’m taking the kidney school modules, and I have very good doctors, but this is all so new!

Dear Worried in SLC,

I am sorta new to the whole thing too. My dad just had the presternal catheter implanted and had some complications but will resume training and dialyizing Friday (hopefully). DO NOT WAIT!! Whatever catheter you choose is best for you-get it as SOON as you can. My dad was at 10% and then dropped to 6% real quickly. He is tired, sleepy, real weak, and doesnt have much of an appetite. However, he is okay enough to not get the neck cath-he doesnt want it. The neph was waiting on him to get sick. Get the surgery as soon as possible and start dialysis as soon as you can. It will take close to 2 weeks before the catheter heals. And you need to really plan for complications unlike us or our neph. From what I understand, PD is best when a patient still has residual kidney function.

I suspect that your nephrologist is suggesting that you wait because Medicare doesn’t consider someone to have kidney failure until:
– creatinine level is 6 for people with diabetes or 8 for others
– creatinine clearance is is 15 for those with diabetes or 10 for others
– the doctor certifies that someone has another condition or symptoms that warrant starting treatment sooner

If you have other insurance it probably doesn’t matter, but if you don’t, the doctor may be trying to schedule your dialysis start and your PD catheter placement so Medicare will cover its placement. The way it works with Medicare is that if a patient starts a home training program for PD or HD before the 3rd month of dialysis, Medicare can be backdated to the very first month dialysis starts which could be the same month that the PD or HD access is placed.

Thanks, I have an appt. with my Neph on 8/4 and I’ll ask him about the catheter. I do have other insurance, so I don’t think it will be an issue, and I don’t want to get the neck catheter, either. The presternal catheter sounds good to me, but it wasn’t ever mentioned to me as an option, I’m going to ask about that as well.

Thanks for answering me, this is all happening quickly and I feel kind of overwhelmed and alone. I really do have good doctors, it’s just scary. Any help is welcome!

Presternal catheters are not yet done in all parts of the country. If you think you might want one, please download our article about them (which includes all of the references a surgeon/doctor might need) and print it off and bring it along to your appointment. If necessary, we can try to put your doctor or surgeon in contact with someone who does the procedure.

Here’s the article:

p.s. If you register as a member, you’ll get email notices when someone replies to you.

Thanks, I’ll print the articles. I tried to register as a member, but it said my email address,, has been banned. I don’t know why, because I’ve never tried to post before. I would sure like to register, any help would be appreciated. I sent an email to the administrator yesterday. Thank you!

I’m sure we (probably I) didn’t ban your email address–but we probably banned your domain name because someone spammed us from it. We have a zero tolerance policy for spam.

I’ll undelete it and feel free to re-apply for membership. Wait about half an hour so I can be sure to get to it.

Thanks for your help, Dori, I’m all registered. These boards are great, and the Kidney School modules are very good. They were recommended to me by my Neph. I live in Salt Lake City, Utah, do you know if they do presternal catheters here? RaeDean

Hi Rae,

Glad you’re all set, and that you liked Kidney School. :smiley: I’m not sure if anyone in Utah is using presternal catheters.

RaeDean, I emailed the Doctor in Missouri and asked him if he knew of any doctors in my area that used the presternal catheters and he forwarded my email to Tyco who mfr’s the caths who emailed me the name of the doctor in my area. They are real helpful and quick to reply.