Getting a PD Catheter Soon...

[mallory]

I saw the doctor yesterday, my kidney function has dropped from 11% down to 8%.  He said it's time to start dialysis.  I have an appointment Monday to see the surgeon about getting the PD catheter, they want to do it next week and have me start dialysis within a couple of weeks after that.  He said if the catheter isn't usable soon enough, they'll put me on hemo temporarily until I can use the catheter.

I knew this was coming, and, thanks to a lot of good advice from all of you, I thought I was ready for it, but I'm pretty nervous.  I was supposed to go out of town next Thursday through Saturday, the doctor looked at me like I was crazy and said I can probably still go on my trip if I get the catheter before I go.  Do you have to do anything with the catheter within a few days after you get it?  I'll be in a little, tiny town that doesn't even have a doctor, let alone a hospital so I hope it will be okay.

I asked him if I could wait to get the catheter until I got back the week of the 6th, he said "Do you realize you only have 8% of your kidney function?"  Yes, I do, I was just really looking forward to this trip.

I was sort of encouraged because he said we'd look at getting a transplant as soon as I've got the vasculitis under control.  I've always felt like he was kind of avoiding the issue of a transplant with me, and I was afraid he really didn't think I'd ever be eligible.  Yesterday he sounded more encouraging.  I still don't know if that's what I want  to do, but I'd sure like to know that it's an option.

Anyway, any advice is always appreciated.  It's so good to know so many of you have already been through this, I don't know anyone else who's on dialysis and it's hard not having anyone to talk to who understands what you're feeling.  This site has been great, thanks to all of you for all of your good advice and support!

[Ohio Buckeye]

I had my pd surgery 3/1, started training for capd 4/4 and started ccpd 8/14.
My surgery was on a Weds. as outpatient.  I went to my sis-in-laws to stay til
Fri. or Sat.   I was groggy and sleepy after the surgery and slept a lot.  They gave
me a pres. for pain which I took maybe 2-3 days.  It also made you drowsy.
I ate a bite on the way afterwards and slept all afternoon.  Remember I got up
around 7 or so to eat a bite of dinner and all at once felt nauseaus and hurried back to bed
w/out eating. did not get sick.  Nurse called the next day to see how I was and said
that was normal.  I was able to go to church on Sun. and went back to work Mon.
If I had to do over I would have waited til about Weds. for work as I was sore and I stand up
all the time.  I went in 2 wks later and they flushed the tube to make sure it was clear, etc.
then week later repeated it.  Then I waited 2 wks to start training as I wanted to do a
short trip before I started dialysis. The catheter was ready tho in 2 wks.
I got drs. permission to do that.
I suppose it depends on what anesthetic you use on how groggy you will be.  I definitely
would not drive anywhere that soon.   I'm surprised the surgeon would schedule you so soon when you see him. Most are booked up for next few days.  I saw mine in early Feb. and he scheduled me 3/1.  I did not feel real bad after mine mostly sleepy.  It would also depend on if was like early
Tues. am. or weds.  It is highly unlikely you would need med. care but I'd be afraid to be too far
from it just in case.  That's just me.  I did not do hemo afterwards.
It would be a hard decision about waiting. I worried some people when I waited to start
dial. to take a trip. Everyone is different.  I didn't feel bad but when I did start I felt like my
body was telling me it was time. Maybe talk to your doc a little more.
Also, consider if you do wait and need med. care and it is not near. 
I've been told not to lift over 25 lbs. after having the pd surgery.   
Hard, hard decision.  I will be thinking about you and keep you in prayer.
I remember how I felt the day before mine, nervous and depressed, cried a lot.
I feared it would be so much worse than it all is. Thought I'd
never travel again and last wkend did a NY trip and had such fun.
I hope you get the option of the cycler after you learn the manual way.  Doesn't
take long to set up and frees your days.   
Probably you'll discuss with the surgeon your preference for anesthetic, which will be
a deciding factor also.  Hope I've been some help sharing my experience.
and is the trip going to be a lot of walking, relaxing, someone else driving, or flying?
you won't feel like take long walks to sightsee, etc.

[Rerun]

Make sure and buy some stretchy pants.  They have some nice sweat outfits.  Something with loose elastic around the waste.  You'll do fine.  I liked CAPD.  The freedom of doing it yourself and the freedom (or more freedom then Hemo) of fluids and foods.

[goofynina]

Make sure they give you the ointment that you put on after you shower, or in your case, change the dressing since you wont be able to shower right away and beware of the tape,  if they give you the plastic tape, which holds the best, it tends to stick really well and it can really irritate your skin,  tear it in half and use half the size to secure the bandage.   Once you get a routine, your going to be soo happy with it, i know i am,      and any questions at all,  DO NOT HESITATE TO ASK     we are here for ya girlfriend...

[mallory]

Thanks, everyone, for the good advice.  I have an appointment with the surgeon in about an hour, I'll find out then if I'm getting the catheter this week or next week.  I'm still hoping for next week, though my nephrologist was pretty insistent that I get it this week.

Ohio Buckeye, I know just what you mean when you said you thought you'd never be able to travel again and you wanted to do a trip before you started dialysis.  That's just how I feel.  The trip next weekend isn't a big deal, four of my cousins, my aunt and my sister and I are going to a lodge in a little town called Altamont, Utah.  They have a scrapbooking retreat there about twice a year where everyone brings their scrapbooking stuff, takes classes, they provide the food, there's a swimming pool and hot tubs, it's pretty fun.  It's about a three hour drive from my house, my sister can do the driving.  If I do have to get the surgery next week and they let me go, all I do is sit and make scrapbook pages so it won't be strenuous or anything.  Needless to say, I won't be swimming or in the hot tub. 

I've got some good stretchy pants, and I appreciate the advice about the ointment and the tape.  My skin is sensitive because I've taken Prednisone for so long, so the tape will probably be a problem, I'll be careful.

I know it will be okay, I really do.  If anyone has any other advice, I appreciate it.  Thanks again for all your help!

[JerseyGirl]

Hi there - the catheter will need to be flushed usually no more than 48 hours after insertion.  The surgeon usually uses heparin on insertion so it is OK to wait the two days.  I usually do a sterile dressing change at the first flush visit too.  Afterwards, the cath should be flushed each week until training.  Good luck!

[mallory]

JerseyGirl, Yes, you're right.  I just got back from the surgeon, she said she does this surgery on Wednesday, then I'd need to have the catheter flushed on Friday.  She said I could wait until the 8th for the surgery.  I was so glad!  She did warn me that if my kidney function continues to decline and I get sick, I'll have to do hemo until they can start the PD, but I'm okay with that.

So I'm going on my trip this weekend, and next week I'll get the catheter.  They said about two weeks after that I'd start dialysis.  Just in time for Thanksgiving!  Oh well, I knew my kidneys weren't going to last forever, and I'm glad I made it through the summer. 

Knowing that so many of you are doing this successfully is a great comfort when you're about to start dialysis.  Thanks for all your help!

[Fox_nc]

I too, will be getting my PD catheter soon.  Hope to get the ok tomorrow to schedule it.  When I had it before I did travel a bit, and at that time the cyclers were a bit bigger than they are now.  Luckly Baxter delievered one to my vacation location with all the supplies I needed.  It was fab-u-lous.  And since now they are small enough to pack up, I can't wait to get one and hit the road!

Good luck to you!

[Ohio Buckeye]

That is strange, they did not flush mine 2 days after the surgery.
I am so glad you will be able to go on your trip.
Have a wonerful time!!!!!!!!!!!

[angela515]

I noticced in your first post on this thread that you stated you didn't know if you wanted a transplant or not but you would like the option to be open. I'm just curious as to why someone wouldn't want a transplant? Maybe I just dont undersand why b/c I had a transplant before, and everything in my life went back to normal... the only difference was I had to take pills everyday so I wouldnt reject, and go to my dr appts... otherwise I was allowed to eat everything again like I was never sik.. drink as much as my heart desired... and lived a normal life.. im just confused why someone would rather stay on dialysis then feel wonderful again?

[mallory]

I would like to get a transplant.  But, there's just so much other stuff involved.  I have vasculitis, that's what destroyed my kidneys.  So, I can't get a transplant until I've been off the immunosuppressants for the vasculitis for six months.  That way they can be reasonably sure that the new kidney won't be immediately destroyed by the vasculitis.  So I worry that I may not be able to get a transplant because, so far, they haven't been able to keep me off the immunosuppressants for very long without the vasculitis coming back.

Then I worry about where I would get a kidney.  I have some relatives that I believe would give me one, but that seems like such a huge thing to ask someone to do, I'm struggling with asking someone to make that kind of sacrifice.  What if someone gave me their kidney, and in six months, the vasculitis came back and destroyed it?  I just have to come to terms with those kind of questions, but I would like to get a transplant if I can.

[Ohio Buckeye]

Mallory, did you get to take your trip and have a good time?
I hope so.
Is the surgery still scheduled for Weds. 11/8?
I will be thinking about you and keep you in prayer.
I know after you get your routine down, you'll be happy with your choice.
I remember at first feeling like there is so much to learn, etc. and you go in
feeling overwhelmed anyway with all the changes taking place, but after you
get used to it is as routine as brushing your teeth.
Take care and God bless!

[AlasdairUK]

I remember when my transplanted kidney started to decline and I knew I was going back on to dialysis. I was worried about how well I would cope. It is a stressful time as you are going to have a change in your normal routine.

Looking back, my health is much better now that I have started dialysis and off the poisons they call medicine to stop the rejection. My thoughts are with you Mallory for your operation tomorrow.

[mallory]

Thanks, Ohio Buckeye and Alasdair, for your kind thoughts.  Yes, my surgery is scheduled for 11:45 tomorrow.  I'm pretty nervous, but it will be fine.  I had a really good time with my sister and my cousins on our trip, and it's something I will be able to do again, even when I'm on dialysis.  At first I kept thinking I'd never be able to do anything again, but I've decided I just have to make the best of this, and I will keep doing the things that make my life fun and worthwhile.

I really appreciate all of you, I'll be back soon!

Mallory

[angela515]

Ahhh, I understand. I hope your surgery went well.    As for asking a family member to be tested, that can be hard. The first time I was on dialysis in 1999 I never had to ask, my mom demanded to be tested and matched so she donated. This time, obviously she an't donate.,.. my dad cant b/c hes diabetic... I have 3 brothers. One was tested and matched but something about his vien that connets to his kidney is too small to connect to me so he cant. I have asked my other 2 brothers, one wont b/.c he dont like needles, the other one said he would, but he nevr called so I stopped asking that must e his way of saying he dont wanna do it but he didnt wanna be mean and say no. We still get along fine its their own choice not to do it. Anyways im rambling... lol...

[Ohio Buckeye]

Thinking about you and hope you are doing well.
Keeping you on my prayer list.
You will be able to do that trip again and others as well.
Take care and God bless you with a speedy healing,

[mallory]

I'm back, and I have the catheter!  The surgery wasn't bad at all.  They said they were just going to give me a local anesthetic and a "light" anesthetic so I would be sleepy, but I was completely out.  That's fine with me, I was kind of freaked out thinking about them doing the surgery with me awake.

I'm a little sore today, and the darn thing keeps bleeding.  They said it probably would because I've been on so many different drugs that have affected my healing and my blood.  But, it's not too bad, it really isn't.

I have to go tomorrow at 9:00 am to get the catheter flushed.  I don't even know what that means, but I'll be learning a lot of new things for awhile.


Thanks for your prayers, I sure do appreciate all of you!

[Rerun]

Glad you made it through the initial step.  Take someone with you or take notes to remember how to keep it clean etc.  Good Luck Tomorrow.

[goofynina]

Hi Mallory,   I am glad to hear that all went well with your surgery,  as for the flushing, all they do hook you up to a dialysate bag and put in about 2000ml into you and then take it out, thats all,  not painful at all except at the end of the drain you might feel a little pinch (which goes away in time) but its not too bad.  Please let us know how it went ok... 

[anja]

Hello Mallory, glad you have the catheter placement behind you.  Hope the bleeding ceases soon.  Next comes the training, I remember how apprehensive I was, but it will become second-nature in no time at all.  Take care! 

[Ken Shelmerdine]

Hi Mallory
So glad your surgery went well. When they flush you it's just a fill with fluid and a drain off. They measure carefully the amount that comes out to see if the tube is in the right position to get all the fluid out. Don't worry if the last 100ml or so won't drain as happened to me because they assured me it's normal. Are you going to be using a cycler or CAPD or both?






EDITED: Fixed Icon Tag Error - Sluff, Moderator

[AlasdairUK]

Hi Mallory,

Good to know that it went OK. I do not even remember my operation for CAPD. That was 12 years ago and I'm on HD now so can not offer any help. There are one or two experienced CAPD or APD members lurking around on the board which I'm sure can answer almost anything you would like to know.

[angela515]

Glad your surgery went well. Now comes the fun stuff. Are you going to be doing CAPD or CCPD? I did CAPD for the first month for training purposes and so on.. then I switched to CCPD, and do it while I sleep... keep us posted hun.

[Fox_nc]

I'm following in Mallory's footsteps.  My placement is scheduled for 11/22 and I can't wait!  One step closer to no hemo!  Whoo Hooo!  Since I've done it before and the hemo is killing my spirit, doc is going to "fast track" my training.  If all goes well, I should be doing dialysis at home by Christmas!

[Ohio Buckeye]

Well, that is good news!
It is not hard to learn and it is great that you'll
be doing in by Christmas.
Won't be long now...........