My First Post in the Dialysis Section on IHD

[Kathymac2]

Well, today I had my buried peritoneal catheter externalized. I've had the catheter for over two years while my kidney function slowly went from GFR 15 to GFR 9. I've had some swelling in my lower legs/ankles/feet and increasing nausea with weight loss, so; together with my doctor, I decided it was time to start dialysis. 

For anyone with a buried catheter facing having it brought out for use, don't worry. The procedure done under sedation using local anesthetic is virtually painless (unlike the procedure to have the catheter buried which left me sore for weeks).

I go to the dialysis clinic on Monday to have the catheter flushed, then I guess I will start the training period. I have no supplies yet, but my home office is cleared out and ready for the onslaught of boxes of supplies.

I'm hopeful I will do well on PD.  My nephrologist says since I have fairly good residual kidney function I may be able to get away with only two exchanges a day for a time. That sure would be nice, if true.  I am 68 years old and retired, so thankfully I don't have to worry about going to work.

The main reason I wanted a buried PD catheter was so that I could start PD rapidly when I had to and to avoid getting a catheter in the chest. I know this doesn't work out for everyone, but so far, it has for me. I'll update on my dialysis journey as I go on in case anyone is considering PD dialysis.

[kickingandscreaming]

The buried catheter worked OK for me except that it gathered a LOT of fibrin  and that kept clogging up until I finally needed to get a new catheter.  I hope you have better luck.

[Kathymac2]

kicking and screaming - I remember reading that you had trouble with fibrin clogging your tube. I hope that I will not have that problem, but I'll just have to wait and see. Too bad this dialysis business is so hit or miss. You would think after so many years of medical experience with dialysis, both hemo and PD that the process would be much smoother and more sophisticated.

[Cupcake]

Best of luck KathyMac! You will do great. I was on PD for 2 years and was able to preserve my residual kidney function. Some people are clotters some are not. They gave me heparin to add to the bags if needed and I never did.

[Kathymac2]

Thanks for the good wishes Cupcake. I'm still holding out hope for a transplant after six and a half years on the list. I'm hoping PD will work well enough to keep me healthy for transplant.

[Simon Dog]

Good luck with the xplant.  I got mine 6 years and 4 months on the list, type O-.

[kickingandscreaming]

For the record, my fibrin experience stopped a while ago.  At first I needed to inject heparin into my bags every night.  Then every other and then finally not at all.  Haven't needed to use it for about 2 years now.

[UkrainianTracksuit]

Best wishes with the dialysis process! I hope that you start to feel better soon (nausea and edema) and you stay as healthy as possible. Take care and good luck!

[Kathymac2]

Good luck with the xplant.  I got mine 6 years and 4 months on the list, type O-.

Thanks Simon Dog. Here in Southern California they quote 10+ years wait time for type O blood. I am type A and the wait time last I checked was 6-8 years.  Really, it's a miracle more people don't die while on the wait list.

[Kathymac2]

Best wishes with the dialysis process! I hope that you start to feel better soon (nausea and edema) and you stay as healthy as possible. Take care and good luck!

Thanks!  Your good wishes are appreciated.

[GA_DAWG]

Same around here Kathymac, 6-8 year wait with type A blood. Hope everything goes well for you and a transplant comes sooner rather than later. Best advice is to educate yourself as best as possible so you know what questions to ask the doctors, nurses and techs.

[MooseMom]

Good luck and best wishes to you, Kathymac2.  You sound educated and prepared, and that's half the battle.  I'm hoping that dialysis will keep you in good shape and will merely act as a bridge until you get your transplant. 

[Kathymac2]

Same around here Kathymac, 6-8 year wait with type A blood. Hope everything goes well for you and a transplant comes sooner rather than later. Best advice is to educate yourself as best as possible so you know what questions to ask the doctors, nurses and techs.

Thanks GA DAWG. I'm doing my best to get up to speed. This website is very helpful for practical advice.

[Kathymac2]

Good luck and best wishes to you, Kathymac2.  You sound educated and prepared, and that's half the battle.  I'm hoping that dialysis will keep you in good shape and will merely act as a bridge until you get your transplant. 

Thanks MooseMom.  That's the plan.

[Riki]

When I started, the buried catheter didn't exist yet.  I remember asking about having it put in earlier, so that it would be there when I needed it, and the doctor I asked said no.  He told me that if the catheter is not used, it can clog up.  But then, that was about 20 years ago.

For fiberin, all I really had to do was one twin bag exchange a month with heparin added.  That seemed to work well for me.  That first time the catheter was used after it healed, though, scary.  The fibrin the fiberin that was coming out, it looked like pieces of wood.  That was only for the first couple of exchanges, though.

PD was great.  I'd go back to it in a heartbeat if I could.

[Kathymac2]

When I started, the buried catheter didn't exist yet.  I remember asking about having it put in earlier, so that it would be there when I needed it, and the doctor I asked said no.  He told me that if the catheter is not used, it can clog up.  But then, that was about 20 years ago.

For fiberin, all I really had to do was one twin bag exchange a month with heparin added.  That seemed to work well for me.  That first time the catheter was used after it healed, though, scary.  The fibrin the fiberin that was coming out, it looked like pieces of wood.  That was only for the first couple of exchanges, though.

PD was great.  I'd go back to it in a heartbeat if I could.

[Kathymac2]

When I started, the buried catheter didn't exist yet.  I remember asking about having it put in earlier, so that it would be there when I needed it, and the doctor I asked said no.  He told me that if the catheter is not used, it can clog up.  But then, that was about 20 years ago.

For fiberin, all I really had to do was one twin bag exchange a month with heparin added.  That seemed to work well for me.  That first time the catheter was used after it healed, though, scary.  The fibrin the fiberin that was coming out, it looked like pieces of wood.  That was only for the first couple of exchanges, though.

PD was great.  I'd go back to it in a heartbeat if I could.

Hi Riki,

Sounds like you were ahead of the curve asking about getting the PD catheter placed before you needed it to be used.

I worried that my PD catheter was buried so long it would be totally clogged up and not work. It worked right away without problem according to my surgeon. I think I don't produce a lot of fibrin for whatever reason. My catheter was flushed for the first time today and there was only one strand of fibrin present.  The nurse used 2000 ml of fluid and added some heparin. The fluid was infused 500 ml at a time, then drained. Totally painless.  I worried because I have read about intense drain pain. So far, so good.

I go back on Thursday for another flushing of the catheter.  I hope that session will also go smoothly. 

[Riki]

I never had any real drain pain unless I was empty and the cycler was trying to pull, or if I had an infection.  My problem, and this was more when I was a kid, was that the fill made me nauseous.  I used to do an exchange at school at lunchtime, and I wouldn't eat until after the fill because I was afraid I'd throw up.

[Kathymac2]

PD Journey - one month update. I started PD about one month ago now. Was trained on manual exchanges first, then on the cycler. Total training time was 6 half days at the training center. On day 7 the training nurse brought the Liberty cycler machine with cart to my home and we set it up for my first overnight treatment. I was left with written instructions and phone numbers to call in case of questions or problems. I had taken delivery of more than one months worth of PD solution and supplies some days earlier. The training nurse ordered both manual and cycler exchange supplies in case I needed to go manual due to a power outage or some other reason.

Note:  we had a prolonged power outage two days later due to intense lighting and thunder near our home. There I sit, in the dark, hooked up to the machine. Luckily I had a small flashlight and my phone with light up screen in the room. After waiting two hours i gave up and disconnected from the machine. I pulled out the written step by step instructions and manually drained. After giving myself a pat on the back for having weathered my first dialysis "crisis", I called it and went to bed.

I'm doing my treatments in the guest bedroom because the master bedroom is too far from the bathroom for the tubing to reach the sink and toilet (old house without ensuite bathroom). This works out better for my husband too since he is not kept awake by the noises from the cycler (beep, beep, burp, slurp, repeat).

Everything is going pretty well. I manage to sleep for an hour or two during my second dwell, then disconnect around two in the morning after finishing treatment and go to sleep in my regular bed. 

The hole in my abdomen is pretty well healed (finally) and I am investigating the best way to keep my catheter from flopping around without using tape.  Lots of different kinds of belts and devices on the internet. Anyone have a suggestion of the most comfortable and easiest method of holding the peritoneal catheter securely against the abdomen?

One month down, who knows how many to go?  I'm still trying to get reactivated on the transplant list after the incidental discovery of lung nodules on a CD scan. It's always something.

Kathy

[iolaire]

Thank you for the update. Sounds like it’s good fairly good. I hope the relisting progresses.

[Kathymac2]

Thanks Iolaire. So far, so good.

[Charlie B53]

Pay STRICT Attention during Training.

Make double sure your hands are CLEAN and thaat NOTHING EVER Touches any fitting.  Your Transfer Set or and bag hoses, anywhere.

I did 3 1/2 great years on PD until I inadvertantly must hav 'touched' something during my set-up.   I was in the ER long before morning.  Infeection grows that fast and that bad. 

Long story shorter.  My cath had to come out and I've been on Hemo almost 2 1/2 years.  Still doing well.   But have to stay way careful with diet and fluids now.

On PD I was allowed anything, everything, and could drink like I Fish!

I sorta miss that a LOT!



Stay Safe!

[Simon Dog]

If you do not have an emergency antibiotic kit from your clinic, ask for one.   I was not offered one, but when I asked it was readily forthcoming.

When I was on PD I had a vial of Vanco and two of (I think gentamycin).  The procedure was to get clearance from on-call RN first but to

(a) Save the first drain bag which will be cloudy
(b) Do several rinses with PD fluid (get number and dwell time from RN) to reduce the concentration of bacteria in the abdominal cavity
(c) Mix antibiotics with sterile saline (provided in vials), inject into bag, drain abdomen and fill with this drugged bag
(d) Report to nearest ER for insurance verification and treatment, taking that first bag of drainage with you for lab testing. Bring empty antibiotic vials with you since the staff will not know you and if they can rely on your self-report on dosing.

The one dose will not cure the infection, but if you are stuck in an ER waiting room for a few hours, you will already be started on your treatment rather than welcoming the new baby bacteria born into the families living in your gut.  They reproduce faster than undocumented immigrants.  This is doubly important if you are traveling as there may be more delays in finding an ER, having them contact your doc, etc.

[Kathymac2]

Pay STRICT Attention during Training.

Make double sure your hands are CLEAN and thaat NOTHING EVER Touches any fitting.  Your Transfer Set or and bag hoses, anywhere.

I did 3 1/2 great years on PD until I inadvertantly must hav 'touched' something during my set-up.   I was in the ER long before morning.  Infeection grows that fast and that bad. 

Long story shorter.  My cath had to come out and I've been on Hemo almost 2 1/2 years.  Still doing well.   But have to stay way careful with diet and fluids now.

On PD I was allowed anything, everything, and could drink like I Fish!

I sorta miss that a LOT!



Stay Safe!

Thanks CharlieB53. Good advice. One side benefit of doing PD is that I have the cleanest hands in town.

[Kathymac2]

If you do not have an emergency antibiotic kit from your clinic, ask for one.   I was not offered one, but when I asked it was readily forthcoming.

When I was on PD I had a vial of Vanco and two of (I think gentamycin).  The procedure was to get clearance from on-call RN first but to

(a) Save the first drain bag which will be cloudy
(b) Do several rinses with PD fluid (get number and dwell time from RN) to reduce the concentration of bacteria in the abdominal cavity
(c) Mix antibiotics with sterile saline (provided in vials), inject into bag, drain abdomen and fill with this drugged bag
(d) Report to nearest ER for insurance verification and treatment, taking that first bag of drainage with you for lab testing. Bring empty antibiotic vials with you since the staff will not know you and if they can rely on your self-report on dosing.

The one dose will not cure the infection, but if you are stuck in an ER waiting room for a few hours, you will already be started on your treatment rather than welcoming the new baby bacteria born into the families living in your gut.  They reproduce faster than undocumented immigrants.  This is doubly important if you are traveling as there may be more delays in finding an ER, having them contact your doc, etc.

Such valuable advice. Thank you Simon Dog. I will see the nephrologist this week and ask her about this. The ER waiting room is no joke. Things can get out of hand in a hurry on a busy night.