So my journey begins. I had surgery this morning for placement of my PD catheter. All in all, the experience hasn't been bad at all. They used general anesthesia, so I don't remember any of it after they gave me the happy juice. I barely remember my driver leaving the hospital and pulling into the driveway. Pain is minimal. Mostly just when I go from sitting to standing. We'll see what the next day or two brings. I posted more detail on the Kidney Dialysis forum for those interested in more detail. If you want specific answers. I'll do that here as well. What I learned from others on here helped me prepare mentally and physically for this event, so I met it head on with knowledge instead of fear, which is a huge blessing I got from all the chats with others here on this forum. I encourage those who are new year to continue using the site for much needed info and support.
Beginning Peritoneal Dialysis: So my journey... - Kidney Disease
Beginning Peritoneal Dialysis
Hi RonZone here I am cheering on for you for a speedy recovery. You have shared invaluable experience/knowledge with me and I thank you. Will be looking forward to your posts as I learn. I should have my PD in August if Covid does not wreck havoc in the hospital system. Big hugs and greetings from Melbourne, Australia.
Plenty here and expected to peak mid August. It’s the omicron variant. But people’s attitude have changed. People don’t care as much anymore.
Hey Ronzone,. You're completely right about being physically and mentally ready and also about hitting it straight on. I had my PD op April 21, in my experience the op was fine, took 2 weeks until I could laugh without pain but now I'm grateful that I don't have to go to hospital 3 times a week and the dialysis is within my control. (I wouldn't be able to do haemo myself at home) I can only speak in respect of my experience but PD at home is the best option I think. It gives you the freedom to still continue with your life, although you do have to change things round a bit on your life. I hope you find it as positive as I do.
Hi Topcat how do you deal with supplies when you travel say interstate or overseas. How do you coordinate the supplies. I hope I can continue to travel with PD. Thank you.
I know the company we used for my Dad had a book that came with the cycler machine and in it it said they could ship supplies where you were. I don’t know if that applies to overseas or not. If not maybe they could arrange something with another company. Best wishes.
Hi Mightazn,I'm on the UK and here I get my supplies each month, storing them in my garage. I'm not in a cycle yet, just two bags each 24 hours. We've only been away camping or staying at hotels and I bring it all with me. If I wanted to go overseas on holiday honey would ship what I need to where I am. Lots of places over the world it can be shipped to, even on cruise ships! Hope that answers your questions. 😁x
Predictor text sucks sometimes...i really should re read before I press SEND
Yes, I look forward to being able to laugh, cough, or even take deep breaths without hurting! But that's ok. I have Netflix to keep my mind of of things and I'm not afraid to use it. The doc gave me some pain medicine, but so far I've been able to do without it.
I agree with this do much!!
Ron glad it went well and hope your journey with pd is smooth sailing .
Glad I got that trip to the beach in before getting this done 
I'll put today's notes in a new post so folks have access to it. Seas got a tiny bit rough last night, but I'm still afloat.
Thank you for this. I appreciate all the info I've gleaned here. I'm not quite there yet but my choice when the time comes is to do PD also as I wish to continue working as long as possible.
I totally concur with you, this forum is an excellent resource for kidney patients, thanks to all the participants. Thank you for sharing your experience.
Glad your Surgery went well...I am so excited to hear how much better you feel as your training and PD progesses...
You are a Good Soldier...Life is Good
Been on PD for 17 months and this week we are camping in the beautiful Black Hills of South Dakota...Nailing lt !!
Uh, last night I hit a bit of a snag in the process, I'll post an update in a new post. Nothing that can't be handled, but something that caught me a tad off guard. On a separate note. I lived in Rapid City South Dakota the summer of 1974 and spent a good bit of time in the Black Hills in Spearfish Canyon and on the Oglala Reservation. I would've stayed there forever if I hadn't had to go back to college and finish my degree and then actually find a job in my field, which would've been tough to find in the Hills 
Maybe I can visit them again someday with my cycler in tow!
I am from the State of Wyoming...so only about 240 miles from Keystone...so we come to these parts quite often...Did quite a bit in the last couple days, so my butt is dragging a bit...lol...but so very lovely up here...
Hope all is going to be well and keep us posted
Glad to hear you’re doing well!!!
So far, so good! Thanks for the note!
Thank you, I needed to hear this😊
we’ll had my first session today cause despite the Lasix I’ve swelled so bad I wasn’t sure I could get my shoes on and my labs were awful.
So it was 2 exchanges of 2.5 solution. No one has mentioned the 9 month pregnant feeling after it fills your peritoneal. Holy hell that hurt until it started dissipating during the dwell. For those of you never been pregnant it’s like eating and eating until it hurts.
No drain pan and she said I was drawing well. It took off 3 lbs of fluid and I was starving when I got home.
I start training on Mon and I should be able to shower after that. She comes for a home visit which should be interesting on the 22nd. I can train on cycler after that.
Yes...its like a balloon filling up...lol...I bet you felt better getting that fluid off...There are times I still feel that pressure, but I have learned to eat about 3 hours before treatment....you still feel it filling but not quite so much pressure...Good luck with the training. I am sure you will do just fine !.
it certainly was unexpected. Should I take notes for the training? I was going to but there’s no way I could have concentrated I was focused on ignoring the balloon in my belly.
Not sure how your Clinic trains you...but mine gave me workbooks showing each step of the process...and tested me every day to see how much information I retained...The important thing us to do it just like your PD Nurse shows you...even if it seems redundant...and make sure your hands and area is clean..Infection is one of the biggest reasons that PD fails...I think about that every time I set up...hook up...un-hook and cleaning my exit site...if I let those those "germs" get in I may have to go to Hemo Dialysis at the Clinic...
It also really helps to make yourself "packages"..to remember your steps...I gather everything I will need for the treatment and keep it in a disposable plastic bag (ziploc)....I do the same thing for cleaning my exit site
Oh forgot to mention. What I did was take video's with my phone of my PD nurse going through each "step" of the training (did this for manuals, then later for cycler as well), then watched the video's at home to produce the "notes" that I posted on the forum during that first manuals week, along with the documentation they provided me.
So how much fluid did they put in you for this first session? They started me off with small amounts so I could get used to it gradually over the entire manuals training week. Started with 500, then next day went to 750, then 1000, then 1500, then last day 2000. I assume they started you on the full monte so as to get the fluid off that you were retaining, which from your later posts, was a good thing, so it was probably good that you went through this first one with all the discomfort that went with it toward that end. 3lbs. Holy smokes. So you start manual training tomorrow? Were they able to get your prescription figured out without the Neph?? Or did they contact him or something?
So showers start next week. Whoo hoo! That's a wonderful feeling. And you have your cycler training already scheduled. That's good too.
thanks these are such great tips. I’ve been watching her work carefully but I need to “do” to learn things so they stick.
Still not sure about doing manuals and going to the office. I don’t have much control of the environment so hope to get the cycler soon.
When should I expect any supplies? Surely be the home visit or how else am I to demonstrate?
You probably won't get your supplies until after you are trained and house inspection...They just check your house for enough space...rugs you might trip on...and want to see antibacterial soap and hand sanitizer at your sinks and general cleanliness
My PD nurse actually ordered my manuals supplies, and then placed the first order of cycler supplies as well, and gave me a bunch of stuff they had at the clinic (tape, soap, gauze, hand sanitizer, 4 x4 island dressing, etc)
After they have shown you a few times, they will watch you do it...this will take place at your Clinic, not your home...Once your PD Nurse feels you are capable , you will be sent home with supplies and basically be on your own...so learn all you can
actually she said she’s coming out to watch me do it which means opening the gate Ang putting dogs and cats in the garage with the door shut. I’ll need to have my husband here to make sure they don’t kill each other cause there’s a stranger in the house.
Hmmm....your Clinic is alot different than mine
it’s a small independent clinic not affiliated with Davila or fresenious. I think there are way more hemo patients than PD in this area.
yeah, the way it worked for me was I did the incenter training, where I watched the PD nurse monday and tuesday, then on wednesday she let me do it all. She was very patient with letting me go slow so I didn't mess up. I also told her that I have to "do" to learn, that I don't learn nearly as well "watching", though watching did give me some familiarity of the process, but I'd already gotten familiar with all the training info they gave me the weekend before. I assume they will give you a book for reference or something. Do you still have the cheat sheet I sent to you? (which you will need to modify based on that they tell you for your specific setup). If you want it, I can send it again. It's like a pilot's pre-flight checklist, that used for all those months while doing manual flushes waiting for starting on the cycler. And yeah, on friday, my PD nurse came to my house and watched me do one exchange at home, so she knew everything was set up and working properly. Oh, another tip. You'll use a LOT of paper towels cleaning everything with bleach water, so stock up, if that's the method they use. Then on Saturday and Sunday, I did 4 exchanges per day all on my own (I basically didn't do anything else those two days)until the back pain shut me down Sunday night and I drained out Monday morning and that was it for that.
At first I didn’t believe people who said how much better they felt doing dialysis but wow after the one session on Friday I feel 100% better… no more swelling, appetite back. Once I can take showers I want to start walking again.
I think your situation is very different from mine in that I didn't have the water retention issue, so I'm very happy you were able to get with the clinic and get that taken care of. That made your need much more immediate that mine and some others. Glad they were able to accommodate you. Did you have to go in and talk them into this or how did you get them to push up the manual training schedule and this first exchange? Tell me again the cause of your kidney failure, it's not PKD like mine, so it would have different "symptoms", like the water retention. I wonder if the water will come back over the weekend or if it will stay reduced until you start manuals this week. Really glad you feel better! Now you can work with them to figure out how you're going to work out doing this while working, and you can talk to your boss about it as well and come up with workable solutions.
Hey, we should take this thread over to the Kidney Dialysis page so new folks looking to start dialysis can glean from your posts. Here's my first training day post. You should start your own new post documenting your experience on these Dialysis pages:
Darn I typed a huge response and lost it. So the next 2 weeks are training on manuals, then on 24th home visit and 28th follow up and labs. No cycler training scheduled yet.
They used 2 of the 2.5 solution smaller bags she said than the cycler ones. And yes I have your cheat sheet saved so I’ll see what’s the same and what’s different.
My regular neph is back in office on Mon so I’m thinking they were able to contact him Fri.
Mine was caused by BP although until the swelling it was under control. I’m not convinced that’s the real cause but it doesn’t matter now.
I’m wondering if this will help get my ALB out off the gutter . At least my appetite is back so maybe adding a little more protein will help. I’m still waiting on insurance approval for the anemia but maybe that’s better too.
The swelling is still gone but I’m going back to the office Mon and it’s sitting in my office chair that makes it worse. I’ve had my feet up all weekend.
So that’s where I am today.
I HATE when I lose stuff I typed like that. Makes me want to bite bullets. It's a huge pet peeve, cause no matter how you try to recreate it, it's just never as creative as the first version
Ahh, 2.5 solution. Yeah sounds like they got hold of your Neph. Those gave me bad cramps, so i had to go back to 1.5. I guess they were taking off too much water with the 2.5 but in your case that's a good thing! The first week i had manuals training, then the second week (which I didn't get to do) was supposed to be how to deal with emergencies like contaminating your transfer set by dropping it or hitting it against something "dirty" while the cap if off, or forgetting to put your mask on and coughing into it, or dropping your patient line on the floor and continuing to use it instead of throwing it away and starting all over with a new one. They show you how to put medicines into your manual bags (like heparin in case you get fibrin-clots of protein-in your drain bag). And what to do if you're in the middle of a fill or drain and you hear the tornado sirens going off (definitely a possibility in Alabama and Oklahoma!) So second week was easier. (again, I made videos on my phone for later review). And I didn't get that training until I was 2 months in because of the back pain issues.
Ahh, BP, thanks for the reminder. Getting old, can't remember crap anymore. But yeah, who really knows. And yeah. hope this takes care of ALB since you're able to do protein again. Oh, they've been having me do iron infusions for several weeks now. My iron was 17 when I started manuals. (suppose to be between 30 and 50). I'm still getting those to help bring it up.
Really glad the swelling is under control (for now). So how are you handling the schedule for going back to the office and doing manuals training? Training in the morning, work in the afternoon??? Just curious. Hopefully you are planning some what shortened days at work so you can get home and put your feet up. And if need be, work from home some if the boss will allow.
so next week training is M T W in the afternoon. Following week it’s W Th F in the afternoon. She’s been good about scheduling me later in the day so I can at least work a half day and not use up all my PTO.
As for once I’m on my own and still doing manuals, I’m not sure how that will work. Logistically it’ll be a nightmare…solution….solution warmer….sterile supplies. Just not sure how to cart everything and my laptop and lunches. I’ve asked my coworker to shut the vent and he goes at lunch to workout so he won’t be there.
Bathroom is down the hall so I’ll have to do my extreme hand washing then use a paper towel to open doors.
Given my 3 day training I’m wondering if I’ll only have to do a few days a week of dialysis which would be beyond fantastic. Not got my breath held on that.
Ok, well that's good that you can work am, train afternoons. yeah, it's going to be a bit hairy to pull off during those weeks of manuals. And as for reduced days a week. Hell ASK if you can do that, like three days during the week doing manuals while in the office, then full manuals on weekends. Never hurts to ask! Yep, I know all about the using paper towel as a glove to open doors They should make paper towel mittens! Good that you can shut off the vent using lunch and be alone. Really glad you're getting things worked out. It's a pain in the carcass, but you can do it. More than one way to skin this cat.
Will be thinking about you today during work/PD training.
training was with a different nurse but not all that different from what others have written. I did run into all the paperwork you all reported.
I still seem to be draining well but darn that full hurts. They are doing a TB test too for some reason and I can’t get that spot wet. No shower yet as I don’t have the antibiotic they just called into my pharmacy.
They did give me a booklet with the training but I’m tired after my day so I’ll just pick up tomorrow.
it’s just logistics and like a puzzle which I love doing. I can’t wait to figure out visiting my daughter and then my mom. Both require a plane trip so I either take 2 weeks and try to drive there alone or navigate the shit storm air travel has become. Wish I was rich so I could fly private.😎
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