Changed from 5 days to 4 days per week

[Simon Dog]

Congratulations on being able to keep such a rigorous work schedule - no wonder you wanted to go to 4 days.   I work 12PM-6PM M-F and live 25 minutes from work - I could not imagine keeping the kind of schedule you do.  Good luck with the fistula.

[BobN]

cdw, hope everything works out for you.

[cdwbrooklyn]

Thanks guys for your kind words.  It makes me feel so much better as the past couple of days been really hard.  I went to my surgeon and found out I have an infection in my artery buttonhole.  He gave me some IV meds to help the infection.  My nurse started creating a new buttonhole.  I will not use the old artery buttonhole again because this is the second time I got an infection.  I was able to dialyze at my clinic in my nurse’s office.  She set the machine up for fraction 40%, 40 Liters, 450 blood flow speed, 4 hours and 13 minutes.  It felt so good getting treatment as I been without for three days.   I feel good now but I will not recommend anyone to take that amount of days off without dialyzing.  Anyhoo, I’m on vacation next week so I will go to my nurse’s office for 5 more treatments until the buttonhole is established.  I don’t mind dialyzing but this infection thing is way toooooo much.     I am going to look into getting a kidney as four people that were home patients received their kidneys.  I’m jealous.   I know I have vein damage but the nurse say things may have changed and that I should just check to see if I can receive a kidney now.  It does not hurt to find out.  So I decided to take her word and go for another evaluation. 

Thanks again guys.  I am so glad I have people who understand.  It’s hard when you doing it alone.  Not that I’m complaining just very grateful.   

[obsidianom]

Thanks guys for your kind words.  It makes me feel so much better as the past couple of days been really hard.  I went to my surgeon and found out I have an infection in my artery buttonhole.  He gave me some IV meds to help the infection.  My nurse started creating a new buttonhole.  I will not use the old artery buttonhole again because this is the second time I got an infection.  I was able to dialyze at my clinic in my nurse’s office.  She set the machine up for fraction 40%, 40 Liters, 450 blood flow speed, 4 hours and 13 minutes.  It felt so good getting treatment as I been without for three days.   I feel good now but I will not recommend anyone to take that amount of days off without dialyzing.  Anyhoo, I’m on vacation next week so I will go to my nurse’s office for 5 more treatments until the buttonhole is established.  I don’t mind dialyzing but this infection thing is way toooooo much.     I am going to look into getting a kidney as four people that were home patients received their kidneys.  I’m jealous.   I know I have vein damage but the nurse say things may have changed and that I should just check to see if I can receive a kidney now.  It does not hurt to find out.  So I decided to take her word and go for another evaluation. 

Thanks again guys.  I am so glad I have people who understand.  It’s hard when you doing it alone.  Not that I’m complaining just very grateful.

I am glad you caught the infection before it became serious.
Have you considered going to simple sharps rotating sites? The problem with buttonholes is the high risk of infections. We had one and switched to sharps and have been much happier and less stressed as they are easier to manage. There is less prep with sharps and virtually no risk of infection. If you rotate them well they dont damage the fistula. My wife also reports that after awhile  she didnt feel ther needles at all . Over thime the skin becomes less sensitive.
I know its not popular here to be against buttonholes but infections are a big risk with them and you have had 2 now. Each time there is a risk of serious bacteremia and cardiac endocarditis with any infection.
I do wish you well however you do it.  At least you are back to treatment now.

[Simon Dog]

Thanks again guys.  I am so glad I have people who understand.  It’s hard when you doing it alone.  Not that I’m complaining just very grateful.

Are you able to do NxStage without a care partner?   Outside of NY (which requires remote monitoring), I have not heard of that being allowed.

[cdwbrooklyn]

Thanks guys for your kind words.  It makes me feel so much better as the past couple of days been really hard.  I went to my surgeon and found out I have an infection in my artery buttonhole.  He gave me some IV meds to help the infection.  My nurse started creating a new buttonhole.  I will not use the old artery buttonhole again because this is the second time I got an infection.  I was able to dialyze at my clinic in my nurse’s office.  She set the machine up for fraction 40%, 40 Liters, 450 blood flow speed, 4 hours and 13 minutes.  It felt so good getting treatment as I been without for three days.   I feel good now but I will not recommend anyone to take that amount of days off without dialyzing.  Anyhoo, I’m on vacation next week so I will go to my nurse’s office for 5 more treatments until the buttonhole is established.  I don’t mind dialyzing but this infection thing is way toooooo much.     I am going to look into getting a kidney as four people that were home patients received their kidneys.  I’m jealous.   I know I have vein damage but the nurse say things may have changed and that I should just check to see if I can receive a kidney now.  It does not hurt to find out.  So I decided to take her word and go for another evaluation. 

Thanks again guys.  I am so glad I have people who understand.  It’s hard when you doing it alone.  Not that I’m complaining just very grateful.

I am glad you caught the infection before it became serious.
Have you considered going to simple sharps rotating sites? The problem with buttonholes is the high risk of infections. We had one and switched to sharps and have been much happier and less stressed as they are easier to manage. There is less prep with sharps and virtually no risk of infection. If you rotate them well they dont damage the fistula. My wife also reports that after awhile  she didnt feel ther needles at all . Over thime the skin becomes less sensitive.
I know its not popular here to be against buttonholes but infections are a big risk with them and you have had 2 now. Each time there is a risk of serious bacteremia and cardiac endocarditis with any infection.
I do wish you well however you do it.  At least you are back to treatment now.

Yes, I thought about it but I’m not good when in comes to using sharps.  I stick myself very slowly and too much blood comes out with sharps. I will be alright.  I just needed a new buttonhole.  I’ve should of got it after the first infection. 

Thanks again for your feedback.

[cdwbrooklyn]

Thanks again guys.  I am so glad I have people who understand.  It’s hard when you doing it alone.  Not that I’m complaining just very grateful.

Are you able to do NxStage without a care partner?   Outside of NY (which requires remote monitoring), I have not heard of that being allowed.

I do have a care partner should I have any emergencies; however, I do everything on my own.  I do not want to put my care partner through that. As long as I’m healthy enough to take care of myself, I will without anyone else.  It requires a lot of time and I do it late at night while I’m sleeping.  Now don’t get it twisted, my care partner lives above me and can come downstairs any time I need her.  She is very good at that although I don’t really bother her (my daughter).   

Thanks for your concerns.

[Simon Dog]

I take a similar approach - though sometimes my wife comes in when I am finishing to take me off.    The clinic I use insists a care partner be on-site at all times when I am dialyzing, but that doesn't mean I have to have the partner do any of the work.

[noahvale]

*

[PrimeTimer]

Sorry your buttonhole ended up acting an a-hole. My husband has been thru it himself AND a few angioplasties of his AV fistula. It's frustrating! And just like you, we don't like sharps! Bad enough that new buttonholes are bleeders til they form. But...we like the buttonhole method, they become almost methodical to use. Anyways, just focus on getting over the infection and back on track. Wish we could go 3 days without but....ah well. I keep trying to remind myself that this is part of our routine now and we have to try to look at it like we do any other part of our daily routine. I think someone said they look at it like they do when they have to brush their teeth. Bad part about that, is that I don't like having to brush my teeth, either! I'd much rather that shopping, walks in the parks and blowing cash be part of our routine...

[cdwbrooklyn]

Okay guys, the four days did not work for me. First , I realized my blood pressure was too high. I would get off the machine and my pressure would be 160/97. That is  not good as that is the reson I'm on dialysis.  Second, my fistula clotted. It was not an infection is was clotted.  Third, I lost my appetite and lost 10 pounds.  Forth, the machine is not capable in cleaning my blood in four days for four hours no matter how I set it.  I refused to sit on the machine a little over four hours and get bad results. I was doing find at five days at  2:48. I've been very unhappy with my results all week. My nurse is going to put me back on my normal schedule this morning. I tried and it did not work for me however it worked great for another patient as she is much smaller than me.

Don't be afraid to make a change but what's not broken don't fix it!

Have a blessed day everyone.

[obsidianom]

Okay guys, the four days did not work for me. First , I realized my blood pressure was too high. I would get off the machine and my pressure would be 160/97. That is  not good as that is the reson I'm on dialysis.  Second, my fistula clotted. It was not an infection is was clotted.  Third, I lost my appetite and lost 10 pounds.  Forth, the machine is not capable in cleaning my blood in four days for four hours no matter how I set it.  I refused to sit on the machine a little over four hours and get bad results. I was doing find at five days at  2:48. I've been very unhappy with my results all week. My nurse is going to put me back on my normal schedule this morning. I tried and it did not work for me however it worked great for another patient as she is much smaller than me.

Don't be afraid to make a change but what's not broken don't fix it!

Have a blessed day everyone.

Sorry to hear that. I guess you are right , if it works dont mess with it.
Glad you are willing to go back to 5 days. That seems to work best with Nxstage.

[Simon Dog]

Best of luck recovering the the problems... at least you are willing to do what needs 2b done.

[PrimeTimer]

hip hip hooray! hip hip hooray! hip hip hooray! Cheers to you, cdwbrooklyn for your bravery! Thanks for the update. Sorry a "4 day work week" is not a go for you but have provided us with valuable information and insight. Thanks for reporting from the front lines and letting us know what it was like. Hope you are back on track and feeling better soon! The fact that you've been doing dialysis a long time while holding down a job is one thing but it is your attitude that is most intriguing, if not enduring. You obviously love life, you make a good teacher!