5 years and they still dont understand?

[gothiclovemonkey]

EDITED: MOVED TO Correct Topic.  Rerun, Moderator

This may come across wrong, and ungrateful but seriously...

Some memembers of my family are actually in the medical feild (a doctor and a nurse), and yet, they seem to have no idea about the whole dialysis thing...Ive been on dialysis for 5 years, and pretty much the whole time, I have had the T/T/S schedule....
So, Christmas is coming, and I honestly wasnt even expecting an invite this year, so I was happy to see a text from my aunt telling me that chirstmas with them would be the Saturday after Christmas. Be there at 10 am.
Ok..... Um... I have D on that day, wont be finished until about 2ish, if I am lucky... then I have to go home and get my son and then drive to where she lives, which would end up being... close to 5pm... again if im lucky.
Now, being that that part of my family and I arent that close, I could probably understand that she doesnt think about that when making plans... BUT when she messaged, she asked if my brother had told me... No, he hadnt, and He KNOWS i have d on sat. But did he mention to her, hey... Jen has d, and that wouldnt work for her...?
When I had asked him about a week ago, if any plans had been made, he said something about him only having the day off on actual christmas, so he didnt know when they were going to be doing it. He would be talking to her about it later. I even mentioned then, that my dialysis schedule for xmas was different, it would be monday/thur/sat. So that way, when he did make the plans with her, he could relay that info... smh

I am really kind of hurt by this, but I try not to let it bother me. It isnt the first time, wont be the last im sure. Its unfortunate too, because I actually DO want to have a relationship with them. I dont know why the feeling isnt mutual.

I dont mean to sound ungrateful, I am so happy she took the time to text and tell me when to come, when i wasnt even expecting that. But, why dont they take that into even the slightest consideration? I dont really want to travel on a d day, especially THAT far, but I would at least be willing to do so, if it was at a time I could... Ill be strapped to the machine at 10 am...

Maybe I should be happy I have an excuse not to go... Its better than listening to them bitch because Im wore out from d. saying its just an excuse to get out of cleaning up after dinner... or telling me not to eat dessert or i will never lose weight (or exact words "fit in the clothes I just got you" that werent my size to begin with....)

[Whamo]

If I were you I'd be calling the dialysis center and ask to re-schedule your treatment to a time that might work.  Most of my family will be in San Francisco, flying from New York and San Clemente to be there with my nephew to see his new daughter.  I'll be staying home because I'm new to PD, and I'm not comfortable with traveling yet.  My wife, a nurse, was scheduled to work.  Christmas can be the loneliest time of the year sometimes.  I hope you can get creative and find a way to be there with your family.   

[Rerun]

They will get it.  But it takes 10 years!  Happy Waiting. 

   

[Joe]

I've gotten to the point where I don't care if they 'get' it or not. If I get an invitation that would interfere with my PD schedule, I just thank them and explain it won't work. That sounds like the situation you are in. If you can't change your schedule for Saturday, I'd just thank them for the invitation and decline. Pushing yourself to exhaustion is not going to help anyone.

And Whamo, traveling while doing PD isn't that big a deal. Just take everything with you and keep on your schedule. That's one of the benefits of doing PD.

Good Luck!

[WishIKnew]

When I was on in-center hemo they switched my schedule for me twice so that I could attend 2 events that were important for me to be at for my son.  Maybe try that....

sorry!

[okarol]

I think I would text the aunt back, say "Sorry, I didn't know until nowbut would we love to come. I have dialysis every Sat. but will ask if they can change my schedule. If not, we'd love to see you some other time. Thank you for thinking of us!"

I think people do not know that it isn't a simple thing to reschedule dialysis. But just keep her informed.

[CebuShan]

So sorry you're frustrated! I would try to reschedule D if possible. If the center doesn't want to help, talk to the other patients. One of them might be willing to switch. We used to do that when I was at the clinic.
If nothing else, come spend Christmas up N. IL with us...I'm going to be dog sitting so my schedule can be more flexible!
   Hope you have a great Christmas either way!   

[gothiclovemonkey]

I dont want to change my dialysis to go, really. I need my D, and for some reason my tx center considers switching to be non compliant as well.
I talked to her though, and she said to come when I can, and we will have dinner instead of lunch. Im a little shocked, and she even invited my bf, which really was a huge surprise.
its still kind of frustrating though, that it seems they can never remember that.. everything is always on a saturday, and it kind of makes me wonder if they do it on purpose lol

[jbeany]

No, even if they are docs or nurses, if they don't work for a D clinic, they don't have a clue.  At all.  While I was on D, before my father died, I carefully wrote out my schedule of available times for Xmas for my family.  And my step-mom changed the family dinner at the last second to a day and time that was smack dab in the middle of my treatment time.  (The only good part of losing my father was not having to deal with my step-monster anymore, really.)

I second Okarol's suggestion.  Only I'd change the word "dialysis" in that message to "life support treatment."  Polite and snippy at the same time always makes me feel better.

But maybe that's just me....   

[WishIKnew]

At least once she was reminded she offered to switch it to later.  Sounds like she does really want you and yours to come!  The Saturday thing is tough because I'm guessing many of the attendees work M-F.  Anyway, looks like Christmas after all!  Good, right?

[KarenInWA]

I dont want to change my dialysis to go, really. I need my D, and for some reason my tx center considers switching to be non compliant as well.

Your tx center looks at switching to be non-compliant??? Seriously? I moved around my D schedule a lot in the 7 months I was on it. I had concerts to go to, LV trip to get to, and one day, I even ended up doing D 2 days in a row so I could take my parents to the hospital in Seattle so my dad could have a test done. None of this affected my being able to get a transplant. I got in the required # of hours, so all was good.

That's just crazy, IMHO. The one thing I promised myself when I went on D was, I wasn't going to let it interfere with my life. I do admit, I was very lucky I went to a center that allowed me to do that. Oh, even my very last D treatment was rescheduled for earlier in the day. I had to take medicine to, ahem, "clean" myself out, and there was no way I was going to take that and then have to sit in a dialysis chair for over 4 hours.

KarenInWA

[gothiclovemonkey]

the only people going to be there this year is them, my brother and me so if anything it was my brother...

Yes, unfortunately, they do. I got a letter from them when i got home from vegas telling me I am now 'inactive' because i am considered noncompliant due to my attendance at D. Yes, there were days I missed my scheduled treatment times, but I always make up for them at other times/days. Like when I went to vegas, I didnt want to miss anything while there, so I did it before, and after I returned home. I didnt miss the amount of treatments, just the days I was scheduled. They said I have to show compliancy for 3 months before I can become active again... so in other words, ill probably never be active again,because sometimes i have to reschedule. Like today, for example, I wasnt going to miss my sons' school thing. I called and asked if I could come tomorrow, they were full so the nurse said i could be late, and i could only run 3 hrs instead of 4. SO maybe 3 mos from today, but I doubt that... (I also have to lose more weight before becoming active again)

[okarol]

Scheduling to an earlier or later time is not non-compliance, but cutting short or skipping treatments is. Jenna often changed her Friday 2PM slot to a 5AM slot so we could take a 3 day weekend. Or she would do a 6PM Monday slot instead of 2PM. But she never missed or ended early, so I guess that's why they were helpful when she needed a change.

[kitkatz]

Sorry for the bad language but screw them if they have made plans not around your dialysis schedule.  Celebrate with the ones you love and love you!!!

[WishIKnew]

I guess the trick is planning ahead so you can be sure there is a chair available, etc.  I never got flack about changes, but I always scheduled them ahead of time.  Good luck with the holidays thing.

[Riki]

I second Okarol's suggestion.  Only I'd change the word "dialysis" in that message to "life support treatment."  Polite and snippy at the same time always makes me feel better.

But maybe that's just me....   

Nah... I do it too.. *L*

It'll be 9 years in May that I've been on dialysis, 4 years on hemo as of today, actually.. doomsday, woohoo! *LOL*  There are some members of my family that don't even realize that I'm still on dialysis.  They don't know how sick I was 4 years ago, though Mom says that's her fault because she kept a lid on it, not wanting to worry my grandparents.  I have no problems now telling anyone, including clueless family members, how sick I was then, and how grateful I am to the doctor (I wish I knew his name, or even his face, cuz I don't remember) who decided to act that day, instead of sticking to the original plan and waiting to see how I did on medication.  They really don't know what we go through and don't understand how hard it is on us.  My family lives in another province, so they only see me on my good days.  My friends live in the same city as I do, so they see me on the good and the bad days, so they understand more, and will try to schedule things on non dialysis days for me.  Perhaps that's the same problem you have, at least with some of your family

[gothiclovemonkey]

id probably understand more, if they werent in the medical field... you would think that would at least give them understanding that i have to be there, i have to do this, and when i do, im going to feel like shit.
My aunt even works at a nursing home, shes an RN, and that nursing home has dialysis, and she knows enough about d to be able to tell me about some of her patients had this and that happen... and to say i cant have that to eat or whatnot... so i know she knows.
and my uncle is a dr...
my brother is just an asshat lol i really do think he is the actual reason for all of this. I love my brother, dont get me wrong, but he is King. its always been that way, what he wants he gets. idk why either... he says its because hes a boy and im a girl, and because i remind them of my late mother... which im sure i do, but thats no reason to treat one person differently than the other. And they even treat our children that way... its strange.

At least I have my father. He is awesome. he tries. I have the best father in the universe. I take after my dad, and damn proud of it!

[jeannea]

At my center, switching wasn't non-compliant. It was just almost impossible. Except for the T, T, S late shift, the chairs were full. I once was able to change my Tues night to early Wed morning to accomodate a vacation but that was only because someone else was on vacation. The best I could do any other time was a half hour early or late and I had to ask weeks ahead for that.

Do whatever makes you feel comfortable. If you don't think you can make it, just say thanks but no thanks. Sometimes family sucks. I don't know if it's on purpose, depends on your family, but most people just don't think.