in LOVE :)

[tbarrett2533]

It has been a long while since I have posted and I just want everyone to know that I just love CAPD, short and sweet...... 

From the homemade heating system that allows me to heat a two day supply to the mobility that it allows me to have to the luck that I got a great membrane that does not absorb so I can have super duper long dwell times and not worry so much about keeping such a tight schedule so my most recent awesomeness........... my brother made me a soft plastic old (but new) potting dish that is about 6-7 inches deep round and placed it on my IV pole then took a clothes pin and stuck it there with a twist tie to hold my drain line in place so that not only can I be mobile while I fill (Which I always have done....... I do the dishes, get dressed, cook, clean, etc, etc) I now can do that while I drain, just toss the bag in my lil black pot!!! oh yea and its soft yet hard plastic and its round so when I to take corners it will take them just fine!! 

I think I should sell this system right along with my handmade warming system!! I would be rich!!

oh yea I went to the casiono this week and two cookouts and you know what I packed in the car besides myself? solotuion and my pole and suppies and off I went, no machines, no timers no nothing!!


I friggin LOVE CAPD!!!

I say until I get MY new kidney, SCREW you kdiney Failiure, you are not going to slow me down any!!!!!!

[wbdoug]

I LOVE IT!!!!!!!!!!!!!!!!!!
If I wasn't on the machine my pole would be equipped with a bucket faster than you could say "Drain Complete".

Keep up the good work!

Bill

[deniferfer]

I LOVE YOUR ATTITUDE!!!! How you don't let D bring you down and you found a way to make it so you can be mobile and not feel tied down. Right on, you should design and sell you idea and make some money. I know other would love it too!!!!

[MaryD]

I love my CAPD, too.

My drain-in, drain-out time is spent on the computer or piano practice though.  I'm too clumsy in the feet department to do much moving around.

[brenda seal]

Laurie can't wait to go back to CAPD  - hates the machine and it's alarms  with a vengeance ! They have him on for 10 hours at the moment . The bloody thing is called " Sleep-Safe ". No chance of anyone sleeping as the alarm goes off all the time on drain unless Laurie is sitting bolt upright !

[tbarrett2533]

I will NEVER try the Cycler......... just hearing the words "8-10 hours" of dialysis makes me want to puke  I can not even think of being literally tied to a machine for that long, plus I don't sleep at night........... Kidney failure makes me have insomina!!
who in their right mind would want to be tied to a machine for that long!! the machine would dictate their entire life as far as I am concerned......... "Oh I am sorry I cant go to that play, or out to dinner that late or to that casino or bar past 8pm  or (oh i am sorry I cant to to breakfast that eary I am still hooked up) I got to go hook up to my cycler" FRIGGIN crazy

again this is just my  it may work for some people but it is not for me, not at all!!! I am in total control of what time I do my treatments!! no machine, no alarm, no bells, no drain pain, no added equipment, no extras when i do get the chance to sleep!!!

[tbarrett2533]

I LOVE IT!!!!!!!!!!!!!!!!!!
If I wasn't on the machine my pole would be equipped with a bucket faster than you could say "Drain Complete".

Keep up the good work!

Bill

Friggin AWESOME

if i could get my pole to say this I would  ........... OMG I am going to decorate my new invention with that........ "drain complete" my lil black bucket (the one in my pic there) I am going to paint it on there lol 

[tbarrett2533]

I love my CAPD, too.

My drain-in, drain-out time is spent on the computer or piano practice though.  I'm too clumsy in the feet department to do much moving around.

create a system like I did so you too can be mobile like I did............ look at my pic.......... I am mobile both during drains and fills and yea yea yea you are going to get people that are going to say what if you fall you could rip your cath out.......... well I got just as much chance of falling doing anything else and I am not an idiot if I were to start to fall while doing a treatment I would "fall with" my pole to ease any pulling on my cath!!!
Dialysis should slow NO one down as far as I am concered!!! JUST saying

I created this lil mobile system, I have the 2 day warming system who the heck knows what else I will come up with lol 
I fake kidney lol

[tbarrett2533]

I LOVE YOUR ATTITUDE!!!! How you don't let D bring you down and you found a way to make it so you can be mobile and not feel tied down. Right on, you should design and sell you idea and make some money. I know other would love it too!!!!

If I knew how to do this I totally would do this, I am sure others would buy this!! right along with my bag warming system!!!

[highway61]

I am so happy to hear how well CAPD is working out for you. Before I got my kidney I used a cycler. I did manuals on weekends and days off.

I used the cycler at night since I couldn't get up to do manuals during the night. The cycler allowed me to go to work everyday. With my commute of an hour my work day was an 11 hour thing. My neph felt that a dwell that long was OK if using the cycler but not with manuals.

I have to say that towards the end I really didn't trust the cycler totally. It isn't smart enough to consider that if it didn't drain out all 2 liters it was expecting don't try force another 2 liters to go in. Granted it is only supposed to push only so much before giving up but what if your membrane allows it to overfill? For this I would rather be all manual.

If I didn't have to work, I think I would have tried to do without the cycler.

[JLM]

I'm so glad manuals work for you, BUT each of us are different.  I was so tied down with manual and I was so glad to get on the cycler.  Although I start out being on it for 11+ hours it freed up my days. Now it's a tad over 8 hours.  If I want to stay out late I do; if I have to get a early start in the morning I hook up earlier in the evening.  Like you, I fit my treatment into my schedule.  We all have to do that.  There is not only one way for everybody





1

[highway61]

Hey JLM, your reasons for being on the cycler are the same as mine. It was to be free from exchanges during the day. It pretty much worked for me, it did allow me to cycle 8.5 hours a night and work all day the next day without exchanges.

My issue with the cycler is that it is not very precise and it is not totally reliable. Mine would run late for no reason on many mornings. I needed to get up and get ready for work at a certain time and when my machine ran late is was problematic for me.

For me it was a matter of trading off control for convenience. If I didn't have to worry about working the next day I would really rather go all manual.

You are completely correct in saying that everyone's situation is different and each person needs to determine what works best for them. That is very important.
 

[HouseOfDialysis]

Word. I would love to do manuals all day, but my job is labor intensive. And lifting 85lbs electrical units is not smiled upon in PD Land.

My weekend job is less labor intensive, but lots of lifting nonetheless. So, it is a Cycler's life for me.

[JLM]

The straw that broke this camel's back was having two doctor's appointments in a city 60 miles from home.  One in the morning and one in the afternoon and no time or place to do an exchange.  Plus dealing with a husband with advancing Alzheimer's.  I had a melt down. It is so much easier doing CCPD.  Husband is now in an "Adult Care Facility"

[highway61]

Sorry to hear about your husband JLM. If I was in your situation I think I would have had a meltdown as well. Wish you the best in moving on from here. You will be in our prayers.

[JLM]

I believe that God's got my back and that I am where God wants me to be, not one step ahead nor one step behind.  And when things really go to crap, I pray for somebody I know who is having a rough time.  It takes my focus off of me.  One has to do the mode of dialysis that works for them (getting back on topic)

[Grumpy-1]

tbarrett2533   For some of us "manual only PD" is only a wish.  I have to do 6 exchanges per 24 hours and using the cycler works for me.  YES it does limit what I can do in the evening, but only Sun, Mon - Thur.  Fri and Sat I can change the schedule around because I don't have to get up for work as early.  I'm totally mobile with my PD.  Ride a motorcycle (day and weekend trips) I have a trailer I can pull with the bike and have rigged it up to be able to carry the cycler in it if needed.  I tease the PD nurses that I'm going to figure a way to put the IV pole on the bike and I can do an exchange riding verse having to stop for a hour.  But that isn't really an issue either as the group I ride with loves to eat and is more than happy to stop at a local bar/restaurant for an hour.    grumpy