CAPD, CCPD, Home Hemo, Daily Home Hemo, Nocturnal Home Hemo, WELCOME!

[Epoman]

This is your section to discuss any type of Home dialysis. CAPD, CCPD, Home Hemo, Daily Home Hemo, Nocturnal Home Hemo. I am adding this site for a few reasons.

Many of our members are on Home dialysis or want to be.
Many of you have requested this section for our site.
And personally I will be starting Home dialysis soon with the NxStage system.

The rules apply to this section just like all the others feel free to rant and vent about any situations you encounter while on Home dialysis. Are site is not about being negative it's about having an "Outlet" to speak how we feel, have a place to go and not worry about having our posts deleted, edited, locked, or censored, However try to maintain some level of decorum and remember this site is accessed by people from all age groups.

So if you are new to Home dialysis or a veteran please join us.

- Epoman

[nquillin]

I am a peritoneal dialysis patient, but am unfamiliar with Nxstage.  Can you give me some insight?   Thanks 

[Epoman]

I am a peritoneal dialysis patient, but am unfamiliar with Nxstage.  Can you give me some insight?   Thanks 

Umm  see the thread below this one.  It's called: "Nxstage.com A great company doing great things, check it out. Portable Dialysis."

[Bear]

well, with a rather cramped 3.2 x 2.4M room, full of machine, r.o., boxes,
boxes, boxes , wrap-around corner desk & hutch and lastly, but obviously
not least, the recliner, the 'back-pack' sized NxStage looks very inviting.....
...I'll have to charge the camera up & do a foto - camera been siting in desk
drawer for...a historical amount of time due to lack of social events etc.,
this past coupla years...

[anja]

I was unnecessarily worried that I would be unable to do P.D. because I had heard that too many abdominal surgeries could make your peritoneum too scarred to work well for that type of dialyzing.  I have undergone 6 such surgeries for various problems; hysterectomy, appendectomy, gall bladder, large ovarian cyst, ovary removal,and hernia repair.  Now wouldn't you think that would be considered too many surgeries to be a good P.D. candidate?!  Well, I have only been dialyzing for 9 months and my numbers are superb!  My dialysis is adequate.  So don't let that hamper your decisions to try P.D. first !  I love that I am doing it at home, on my schedule, do not have too terrific blood pressure fluctuations and I can do other things besides.   I feel so very fortunate and hope I can remain of P.D. forever or until I would feel comfortable with the transplant side-effects!

[Bajanne]

I can't believe it, Anja!  I have had about all of the procedures you mentioned - appendectomy, hysterectomy, oophorectomy (ovary), cholisistectomy (gallbladder), hernia repair.  Only I have to add mastectomy to that terrible list!

[Rerun]

I'm numb!  I cannot believe that you (ANJA) are on PD with that many abdominal surgeries.  I guess I'm starting to get MAD that I didn't insist on at least "trying" it.  They just said "no."  (DAMN)   

[anja]

And, Baj', You won't believe this---I had double mastectomies and two reconstructives- last one turned out to be a mess......We DO have a lot in common! 
Rerun, I am sorry that you did not get a chance to even try P.D.- but I certainly did not mean to make you feel bad, only let everyone know that I learned so much on here that I insisted on trying it.  I do not think I would be a very good Hemo patient-  I love to  eat all the wrong foods for  someone with kidney problems!  I do feel extremely fortunate in so many ways!!!  I do not know the extra grief and pain those of you on hemo with fistulas and grafts have.  I just had the one bout with peritonitis when the catheter was placed, and I didn't like that one bit!  Can't imagine what all you go through, except for what my dad experiences every week at the center, but he still has the chest catheter.

[fireguy]

Graft not bad. Due to fact I have an  illiostomy, PD was not a choice. In hind site this is probally good. Easy to protect graft while still doing my job or fighting a fire. Yes I still do full fire fighting duties in spite of my dialysis. Always was a little crazy. Diet not a problem, I may start a post dedicated to recipes.have lots of no/low sodium recipes.For example, have one for donair meat , both low sodium and low fat but very tasty. Good source of protein.

[Rerun]

What the heck is donair meat?

You have an illiostomy?  I had a colostomy for six months.  That was not fun.  I stunk and was noisy! 

[tiffany1rn]

Hello!
I am an RN and I am training my first patient on the NxStage sysytem. I have been a dialysis nurse for 7 years. I have worked in the acute unit in the hospital as well as the outpatient unit. I started working in the home training department May 1st. I have been handling PD up until July 17th, when I was "trained" on the NxStage system. I would like to hear what other patient's experiences have been. Is there something you wish would have been done differently? Also, for the nocturnal patients....did you have to pay out-of-pocket for the heparin pump and do you use enuresis alarms? If so, which one? I appreciate all feedback!

To Epoman....thank you for your candor and insight!
tiffany1rn

[Epoman]

Hello!
I am an RN and I am training my first patient on the NxStage sysytem. I have been a dialysis nurse for 7 years. I have worked in the acute unit in the hospital as well as the outpatient unit. I started working in the home training department May 1st. I have been handling PD up until July 17th, when I was "trained" on the NxStage system. I would like to hear what other patient's experiences have been. Is there something you wish would have been done differently? Also, for the nocturnal patients....did you have to pay out-of-pocket for the heparin pump and do you use enuresis alarms? If so, which one? I appreciate all feedback!

To Epoman....thank you for your candor and insight!
tiffany1rn

If you would like to read my day to day training journal with nxstage, please go to http://ilovenxstage.com  I love the machine, you mentioned Nocturnal? Well from what I have been told currently nxstage does not have FDA approval for nocturnal. Am I wrong? But I am so happy being home, check out all of my pics.

[pdpatty]

I,too have had abdomnal surgeries and am doing PD.I have been on it for only 2 months,though. I have another inherited condition that was a concern for how well the PD would work for me. I have Ehlers Danlos syndrome, a connective tissue disorder.

I hope it continues to do well as no one can put in a fistula with my abnormally stretchy skin and fragile veins.I just wish there was a way to support my sagging belly. If your belly sags with normal skin,think about it when you have no elasticity to begin with. Talk about a `jelly-belly'. lol

[goofynina]

Hi PDPatty,  Thank you for your reply,  can you please go to the introduce yourself section and tell us a little about yourself?  That will give us the opportunity to get to know you a little better and we can also Welcome you formally.  Looking forward to hearing more from you..


Goofynina/Admin.

[Lulu]

Hi, I have a question about PD. How much does the belly stick out when filled? What does it feel like? And what was your blood creatinine when you decided to start? I am at 18% and feeling pretty crappy. I have been told that most people don't start until 10% unless diabetic. Just wondering if anyone started early? Thanks.

Lulu 

[goofynina]

That all depends on the build of your body (smaller people shows more) but then again, it does make a slight difference in us larger ones as well, AND, it depends on how much fluid you are holding,  i am currently dwelling with 3000 ml each dwell,    and let me tell you, i started off at 2000 (piece of cake) then i went up to 2500 which was a little more difficult but bearable and now i am at 3000 which is uncomfortable but i am doing it dangit    I am not sure what my creatine was, knowing me, probably -0%  lol,  and i am diabetic,  the reason why i went on PD was because i couldnt control my fluid intake, they were raising my dry weight almost on a weekly basis so i opted for PD and Thank God i did 

[okarol]

I,too have had abdomnal surgeries and am doing PD.I have been on it for only 2 months,though. I have another inherited condition that was a concern for how well the PD would work for me. I have Ehlers Danlos syndrome, a connective tissue disorder.

I hope it continues to do well as no one can put in a fistula with my abnormally stretchy skin and fragile veins.I just wish there was a way to support my sagging belly. If your belly sags with normal skin,think about it when you have no elasticity to begin with. Talk about a `jelly-belly'. lol

Jenna had a bladder augmentation surgery. She was advised against PD because of the risk of infection in the abdominal area, they felt it was best to not take a risk.

[angela515]

Hi, I have a question about PD. How much does the belly stick out when filled? What does it feel like? And what was your blood creatinine when you decided to start? I am at 18% and feeling pretty crappy. I have been told that most people don't start until 10% unless diabetic. Just wondering if anyone started early? Thanks.

Lulu 

Mine didn't stick out much... but I did it while laying down asleep at night... and dry during the day cause I demanded it... didn't like carrying fluid during the day.. b/c i couldn't fit in some jeans (even tho I couldn't see a big belly other than what I got normally lol) and it made me feel full and not wanna eat. I only carried 2400 ml per fill. I started dialysis between 15-10% my 2nd time on dialysis b/c it was my choice cuz I felt shitty... the first time I started at like 8% cuz I went to the ER one night for pneumonia.. and found out I needed to start dialysis... blah.

[Lulu]

Thanks goofynina and angela515,
I really apprecate it. I am 18% on an outstanding day. I was holding steady in the mid 20's for a long time but went through a bad miscarraige, cervical infection and gastroenteritis all at the same time in Cabo San Lucas, Mexico. I have been on a steady decline ever since. I don't have diabetes. My kidney disease is from reflux when I was a little girl. My ureters were on the wrong side of my bladder and so my urine just backed up into my body for over four years until I had corrective surgery. It seems that I am pretty hard to kill  so I had better find something worthwile to do with myself pretty soon, only a couple more years and I'll be 40. Did you know that average person loses 1% of kidney function a year after 40. 
Anywaya, this site kicks *ss and I was so sad to read that the founder Epoman had passed. I read some of his posts, he sounds like he had a good sense of humor.
 

[Lulu]

Anywaya, this site kicks *ss and I was so sad to read that the founder Epoman had passed.

Sorry for the typo..

[goofynina]

I read some of his posts, he sounds like he had a good sense of humor.
 

He was so much more than just a good sense of humor     and i thank God i had the chance to give that man a Goofynina Hug, i will cherish those days forever  (I miss ya sucka fish)    

[Tanis]

I have a question?  I never met anyone yet who's kidney's failed from Lupus.  So if there is anyone who has the same disease let me know.  Thanks 

[angela515]

I have a question?  I never met anyone yet who's kidney's failed from Lupus.  So if there is anyone who has the same disease let me know.  Thanks 

Hello.. Here I am. I have SLE. (Systemic lupus erythematosus), I was dx'd at age 12, I am now 29.

What would you like to know?

[BroBrooz]

I am 'BroBrooz', from the Sierra Nevada foothills of Northern California.  Have been on PD for about 6 months. I'm 64, and recently retired, after the moved our facility out of state. My former company was great about the missed and late time associated with dialysis,but don't think that I'd be so lucky with a new employer. Truth be known, I'm probably beginning to enjoy retirement a bit too much! Have been married to MrsBroBrooz for 14 years, have 2 grown (?) kids, and three grandkids (to whom I have read the riot act to about kidneys!). We're active in our church (hence:"BroBrooz'), where I serve in various areas of lay ministry. Aside from a bumpy start, PD has gone well-my Divita team (nephrologist ,nurse,social worker, & dietition)' say i am a 'poster child' for PD. Am on the transplant list with CALPAC,and in process of getting on a second with Sacramento,Sutter Memorial. Am thankful that things are going well- so far so good.






EDITED:Changed color to black-kitkatz-Moderator

[bmevans]

Hi Lula,

I've been on PD for 4 1/2 years now and when I started I believe my clearance was figured around 15%.  My doc told me it was best to start at 15% while I still had urine output on my own.  Over the years, this can become less and less.  I am 6'2" and weighed around 240.  I am carring 2500ml and have carried 3000ml.  Both have had a severe effect on my lower back over the years.  Unfortunately,weigh gain is inevitable.  I weigh 260 now.  When I have looked at a profile of my myself
empty and then full, It is a good 3-4 inch difference.  So, the less you carry during the day, the better off your back will be.  I dwell with 3000ml when on the cycler at night.  I hope this helps and I wish the best for you when that time comes.  Take it a day at a time!