It happened again, this time worse.

[Adam_W]

I just had a repeat of the incident I had before with my tech taking me off when the UF time ended, but not the remaining time for dialysis. This time, it was caused by a bicarb supply problem that sent the dialysate flow on my machine and several others into bypass for about a half hour. The UF remains on when the machine is in bypass, so my UF time ended, even though my RTD had 30min left. My tech started to take me off when the UF ended(different tech), and I told her about the difference in UF and RTD, and made it VERY clear that I didn't want to lose 30min of my treatment. She (and others) told me that it's centre policy to follow only the UF time, NO MATTER WHAT THE RTD INDICATES! I made it very clear how I felt about that, but they told me that they can't change the centre policy, and that losing 30min here or there isn't going to kill me. I KNOW ITS NOT GOING TO F*ING KILL ME, BUT I'VE LOST THAT MUCH DIALYSIS BEFORE AND IT MAKES ME FEEL BAD!!! Plus, some of the other people who also lost 30min or more because of the same bicarb problem are in very frail health, and they COULD die if they lose that much dialysis too often. This issue wasn't all that happened today either. Somehow during my treatment, one of my bloodlines got pulled, and my permacath got turned COMPLETELY upside down. I felt an insanely sharp pain, and I first told my tech, then the nurse (whom I USUALLY respect more than most people I know), then the clinic doctor. Guess what? They ALL blew me off! They tried to tell me it was just the little stabilizer hub thingy that got turned, even though I showed them that the arterial and venous lines were on opposite sides from where they were before today. They almost completely dismissed my pain, EVEN THOUGH MY TECH COMMENTED SHE COULD PHYSICALLY SEE ME CRINGING. It doesn't hurt as bad, but it still hurts. This is just the latest in a string of incidents that are seriously effecting my health and emotions, and it's reaching the point where if I don't get on home dialysis VERY soon, this may be one of my last posts, if you know what I mean. Here are "before" and "after" images of my permacath.



Take care.

Adam

[jbeany]

Owwwwww!

Is the social worker at your center any good?  Could you get some help there?  I don't get how the center has a policy to take you off before your time is up - that makes no sense to me.  UF isn't the only reason we're on dialysis - we need more than fluid removed from our blood.  Is that policy in writing?  Demand a copy of it.  Demand that the doc write special orders for you, or something, for heaven's sake!  Time to be the squeaky wheel, Adam. 

Good luck!

[kitkatz]

Ouchie.  You need to be seen by someone with an ounce of sense.

[Sluff]

Sorry to hear of your troubles Adam.

Please change your pictures following this tutorial  http://ihatedialysis.com/forum/index.php?topic=1297.msg15517#msg15517


"About pictures, I do allow pictures. However I do ask that you do 2 things. 1st, re-size the picture, please make it as small as possible, preferably no bigger than 640X480 pixels, I ask that you size the pic for two reasons, one is many people still use 800X600 resolution on their monitor and if the picture is to big they will have to scroll to see the whole picture. And the bigger the picture the more bandwidth it uses, the more bandwidth it uses the more it costs me, so please keep all pictures below 150kb. 2nd, DO NOT "link" pictures, meaning do not use the link button to link to an outside site. If that link dies then all we will see is a little red "x". You must use the "attach picture" button located in the "Additional Options" link. For certain images members will be allowed to post larger images, that decision is up to the admin team of IHD."

Thanks

Sluff, Administrator

[kimcanada]

Sorry, I am not to sure what I am looking at here, but it sure does look painful, I am with jbeany on this one, the louder you get the more that will get done, good luck Adam, please keep us posted.

Kim

[Adam_W]

Sorry to hear of your troubles Adam.

Please change your pictures following this tutorial  http://ihatedialysis.com/forum/index.php?topic=1297.msg15517#msg15517


"About pictures, I do allow pictures. However I do ask that you do 2 things. 1st, re-size the picture, please make it as small as possible, preferably no bigger than 640X480 pixels, I ask that you size the pic for two reasons, one is many people still use 800X600 resolution on their monitor and if the picture is to big they will have to scroll to see the whole picture. And the bigger the picture the more bandwidth it uses, the more bandwidth it uses the more it costs me, so please keep all pictures below 150kb. 2nd, DO NOT "link" pictures, meaning do not use the link button to link to an outside site. If that link dies then all we will see is a little red "x". You must use the "attach picture" button located in the "Additional Options" link. For certain images members will be allowed to post larger images, that decision is up to the admin team of IHD."

Thanks

Sluff, Administrator

Sorry about the pictures, Sluff. Thanks for reminding me.

[Sluff]

Adam W,

Please put the pictures back. If you can't figure out how then let me have them in a PM and I will fix it for you.

[Adam_W]

Adam W,

Please put the pictures back. If you can't figure out how then let me have them in a PM and I will fix it for you.

They seem to be working now, and if there's any more trouble with them I'm going to shoot myself

[Sluff]

Don't shoot yourself, but I fixed them for you.

[Adam_W]

Don't shoot yourself, but I fixed them for you.

Thanks. When it comes to doing most things with computers, I suck. I actually know my dialysis machine better than my own computer (and I'm on a 2008H-not exactly as "user friendly" as the NxStage).

[Sluff]

Don't shoot yourself, but I fixed them for you.

Thanks. When it comes to doing most things with computers, I suck. I actually know my dialysis machine better than my own computer (and I'm on a 2008H-not exactly as "user friendly" as the NxStage).

That is Ok I just didn't want you to get frustrated and not share your pics. No worries I like helping.

[Adam_W]

Well, good news and bad news. The good news is that the social worker, the unit manager, and the medical director all know about my concerns over the unit's policy. The bad news is that it didn't save me from losing another 20 min of my treatment yesterday (Thursday). I got on late because I had cathflow put in my permacath and it had to sit for a half hour. Because of the clinic's "policy", everyone had to come off at 4:00, no matter how much treatment they have left. I lost 17 minutes of UF, along with 20 minutes of diffusion. My social worker and unit manager are very caring people and they are sincerely concerned about my situation, and they are going to see what can be done to correct this problem. I've started the process of getting into the Fresenius home training program here, so hopefully, I will be gone from the centre VERY soon. Take care.

Adam

[Sluff]

Well hopefully thats a start in the rright direction.