need to vent

[Claudia30]

Just need to rant and vent to people who understand. My friends are supportive but can only support me so much. i am so damn sick of being on dialysis. I do PD and have to do it 4 times a day every 4-6 hours. I was told when i switched to PD from hemo that my life would be easier and in some ways it is - i'm not so sick. However I have to be home like i said every 4-6 hours, at times i push it so it will be 7 or 8 hours. I am not allowed to do my exhanges in the public bathroom at work, besides it takes me a half hour to fourty-five minutes to do.The nurses at the clinic tell me to clean my car out and do it there - but i'm terrified that i'll be in the middle of an exchange and a cop will come up and ask me what i am doing. i know i should not feel embarrased but i am, you know? When i first stated on hemo a year and a half ago, people who saw my arm and didn't know me thought that i was getting beaten up by someone. Anyhow, hemo allowed me not to worry about my dialysis treatment until that day and then i could shedule everything around it, but now i have to make sure i am home - or at least somewhere somewhat sterile when i have to do my exchanges. Don't get me wrong, i am glad to be at least kicking and able to function somewhat, but it is hard in general and you (as everyone here knows) has those days when you wonder if it is worth it. You know it is worth it cause most if not all of us will get a transplant or are doing well on dialysis - just frustrating. I was told i could travel and do more things but i can't...i cant just go with my friends on an overnite or weekend trip cause that would entail me carrying around two or so boxes of solution.  Sometimes i want to just pop someones nose if they tell me again "you look so good" or those ignorant fools who when i tell them i'm on dialysis say "you, on dialysis but you don't look sick." grrrrrrr 

well thanks for listening...gonna go watch American Idol and do my dialysis. have a good nite.

[livecam]

By federal law you are entitled to reasonable accommodations at work for your medical condition.  One of those would be a clean, private location within the workplace for doing your exchanges.  This would ideally be a place where your supplies could be kept and that you could lock while doing your exchanges to avoid people coming in and having any contamination take place.  Your work hours might also need to be changed to allow for better treatment times or for you to go to medical appointments.  There are clear federal requirements here that an employer must meet.  How you approach it with them is also important.  You want to be factual but not overbearing.  Dialysis sucks..I remember it well.  I hope you can get some of these problems straightened out.

[KT0930]

Claudia, I don't know how large your company is, or how your relationships are with any of your superiors, but is there one you can sit down and talk to and explain the situation to? Especially the logistics. As LiveCam said, by federal law, they have to provide "reasonable accomodations". For me, they allowed me to use the conference room for the two exchanges a day that I had to do during business hours. There was a computer in there, and once I was connected, I just continued with my regular work (except for answering the phone). Sometimes my exchanges took up to 90 minutes, and they were still ok with that. They did make me sign a form holding them harmless and acknowledging that nothing I was doing would put anyone else in the business at risk.

If you're not comfortable with that, can you talk to your clinic about the cycler? Then you do your exchanges at night (maybe one a couple of hours before bed, depending on your prescription), and you don't have to worry about it during the day. You would have to take 3-5 days off for training, but again, that falls under "reasonable accomadations" and if your employer really gets nasty about it, you could take those days unpaid, then there's nothing he/she can really say about it.

Also, for overnight trips, get in touch with the company that your supplies come from. They should deliver the fluid to your destination for you so you don't have to carry it with you.

[stauffenberg]

I remember watching two old patients getting acquainted in the waiting room of my dialysis center.  One was switching from PD to hemodialysis because he was told it would allow him more freedom, and the other was switching from hemodialysis to PD because he had been told it would allow him more freedom.  The only difference between the treatments with respect to freedom is that each is its own kind of slavery.

There is now an official clinical entity known as 'dialysis fatigue' that occurs in PD patients who get fed up past endurance with the constant need to do exchanges.  When I discussed that option with the healthy members of my family, they insisted I had my facts wrong, since no treatment would ever be imposed on patients if it were that onerous, in their view.  The whole situation reminds me of the torture used by the Barbary Pirates.  A person would be chained to a wall with a dull sword in his hands and some delicious food just out of reach of the maximum extension of his arm holding the sword.  He would then be left there to contemplate the grim fact that unless he sawed his own arm off with the sword, he would starve to death.  In dialysis as well, you have to be willing to let the treatment of the disease ruin your life so that you do not die of the disease.

[George Jung]

This is exactly why I choose to be/remain in-center.  I go Sunday, Tue, Thur, from 6:30pm - 10pm.  I have all of my days free to do as I please AND Friday and Saturday OFF.  I hope you can find a way to make things not so troublesome.

[Ken Shelmerdine]

Claudia
As KTO90 suggests, do ask about changing to cycler PD. It gives you so much more freedom. You have your days completely free. You've done the hard part (having the catheter fitted) now all you need is training on the cycler and believe me it is so easy.  Good Luck