Started my PD yesterday.

[highway61]

 

Started my PD at my clinic yesterday. I pulled out 1.5 lbs of fluid across two exchanges. Seemed to go OK. My BP is higher today, 160/95. I am feeling fine and look forward to today's session.

It feels good to be fighting back. Up to this point I feel I have been just a passive victim of this disease using drugs to treat the symptoms. Starting PD makes me feel like I am taking back some control over my own body.

The clinic will be providing me with a Fresenius Liberty cycler later in the week. I have read mixed reactions on here over those. This is a Fresenius owned clinic so that is my only option. Their CAPD equipment sure is fairly easy to use so I am hopeful.

[billybags]

highway61. First of all welcome to the site     I am glad your first go went OK. Things will get a lot easier as you go along. My husband did about 6 months on PD and has been on a Baxter's cycler for about 2 years . It gives you a lot more freedom. Look forward to your posts . Don't forget to ask if there is any thing you do not understand, any thing you need to know. Good luck.

[Joe]

Congratulations highway61! A great step forward. Here's hoping all goes smoothly from now on.

[highway61]

Thanks Billybags and Joe. Day two went just as well. Did another two exchanges and pulled out 1 lb of fluid. A slow day. :-)

Got some introductory training on the Fresenius Liberty cycler. It seems a little more complicated than I was expecting, especially compared to how simple the manual method is. But I can get it.

The only issues I think I will run into is that you can only pause once during the night. I am still urinating and get up at least once, sometimes twice to hit the head. Plus in my job we all take turns being on calls. My wife suggested I just handle the calls from the bedroom instead of going to my office. That solves that, but I hate to disturb her. She is so sweet to me.

So .... so far, so good. This site sure has been a big help preparing me for this and I think that has made it much easier. Thanks everyone.

P. S. Hey Joe, I am into Apple too. Coolness.

[msrosefromms]

Make sure you get the cassettes with the longest tubes. I think they are 15 feet, I have the longest one and do not pause when it go to the bathroom.Hopefully they will reach your BR.

[highway61]

Thanks msrosefromms,

In our home we don't have a bathroom off of our bedroom. We are thinking of moving our bed to the guest room since the drain line might reach the toilet from there throughout the walls. We plan to take it slow.

The clinic gave us a catch bottle to use, which as gross as that is, should work. Plus it would give me less excuses to measure my output.

I love this message board. It is so helpful to speak to and hear from fellow PD'ers with more experience. All the training I get is great, but clinical. Here we have talk about things people have experienced and offer help with. Priceless!

[Joe]

My cycler comes with 20 foot lines for both me and the drain bag. I just have the drain in a tub on the floor beside the cycler. It's in a tub just lin cases it leaks (and it did a couple of times when I was getting started) 
With the 20 foot line for me, I can make it to the toilet if/when I need to.

And yes, I do love my Apple(s)

[chook]

When I was on the overnight cycler I was still peeing 4-5 times a night so we had a camping porta potty in the bedroom as our toilet is a long way away. I just emptied it every morning and rinsed with disinfectant, didn't worry about chemicals etc. It was never a problem.
Best of luck with everything!

[billybags]

Glad thinks are going OK. You will just have to have a bowl, OK a washing up bowl, OK a bucket  next to the bed for when you want a pee. If you need the other, which some times happens if things are pressing on your bowels we have an emergency procedure with a cap to free you for what ever. Trust me you are doing great.

[Willis]

I use a plastic 15 liter gasoline can to drain in to. It has a handle on the top and the backside so it's easy to carry to the bathroom. The handle on the backside makes it easy to pour. Cost was about $8. No worries about setting up or tripping on extension lines. It's a bit heavy but manageable and gives me a chance to make sure the fluid is clear.

Stickman Industries sells a very cheap "clip" that helps keep the line from falling out of the can (or it can clip on a toilet or shower). Stickman is where  I got my belts to hold my cath. Another topic, but highly recommended.

As for "calls" during the night, I use a plastic jug which I kept from the hospital when I had my cath surgery. Not very elegant, but it's usually in the dark anyway.

For those REAL toilet emergencies, as someone mentioned, at least for Baxter there is the Flexicap which allows me to unhook myself during any dwell cycle. If I'm not in a dwell cycle and really must disconnect, the Baxter machine can be paused anytime. The only problem is that after a short period (seems like about 5 minutes) a really loud and persistent alarm goes off. I could live with that but my wife might do something destructive.   

The other option, for the Baxter, is to just turn it off. If you turn it back on within an hour (or maybe two can't remember) the machine will just pick up where it left off. This feature is designed for power outages, but I don't tell the machine. Shhhh!

 

[Joe]

I didn't know that Willis. Just shut the d#$! thing off!

[highway61]

Wow, what a great collection of suggestions! We will definitely take all into consideration. We really want to make the most out of our treatment. I say 'we' and 'our' because my lovely bride of 34 years is committed partner in this fight. Plus I am so happy to be able to fight back against this disease that I want to make sure I maximize my efforts.

Today's news is simply awesome. We told our nurse that we wanted to be very aggressive in my treatment. She talked to my neph and he agreed to let me fill from a red bag today. I handled it OK, but the awesome part wast the I pulled 2 lbs of UF on my drain. Just gotta love that! We followed that up with a green bag and drained another pound out on a short dwell. Three pounds today! 

Thanks everybody for all your help and encouragement.

[chook]

 
Great news that things are improving.
Re the 'we' and 'our': I'm the same - I say when 'we' had the tranplant, because you're so right, it's a team effort.

[highway61]

Thanks chook!

I have lost 10 pounds now. Pretty cool. My legs are smaller. Yeah, my lovely wife is as effected by this as I am and works tirelessly to keep things going.

[bleija]

its great to have that support, i know i dont think i would be here today if it wasnt for my husband... every surgery and every infection he sacrafices to be there by my side to do anything to make me feel better, he makes sure i keep sterile procedure and lugs my machine and boxes for me everytime wer go somewhere overnight