Have you chosen a modality?

[MooseMom]

I'm sure that most of us pre-dialysis people have given thought to which modality we prefer.  Have you made a definite choice yet?  What things influenced your decision?  Have you had this discussion with your neph?

[Jean]

I have chosen in-center nocturnal hemo. After reading everyone else's preferences and taking the DaVita test, that seems best to me. My neph got a black mark in my book, because he wont  discuss dialysis with me. Says it is too soon to make a decision, and when the time comes, he will give me all the information I need and I can make an informed decision. Of course, I never mentioned IHD to him, and at GFR of 24, I know I wont be seeing him too much longer anyways. I know, that is taking the easy way out.

[MooseMom]

The center run by my neph isn't affiliated with any of the big dialysis companies; it's privately run, I guess.  They don't offer nocturnal hemo, but I sure wish they did because I'd like to have that as one of my choices.  I like my neph a lot, so I think that when I next see him, I'll ask him if there are any plans to have a nocturnal unit.  I can't believe your neph won't even discuss it with you.  He deserves your black mark!

[cariad]

I have chosen in-center nocturnal hemo. After reading everyone else's preferences and taking the DaVita test, that seems best to me. My neph got a black mark in my book, because he wont  discuss dialysis with me. Says it is too soon to make a decision, and when the time comes, he will give me all the information I need and I can make an informed decision. Of course, I never mentioned IHD to him, and at GFR of 24, I know I wont be seeing him too much longer anyways. I know, that is taking the easy way out.

You could stay at 24 for a long, long time. Still, I don't care if your GFR is 50, if you are in renal failure and want to hear about dialysis I think the nephrologist should just have the conversation.

[Jean]

Yes, Cariad, I do too.

[jbrock]

I have been researching all the different choices and I just don't know which one to choose. My first gut reaction was to go with peritoneal because I don't want my daily routine to change. I work 3-4  days a week and love to come home a cook dinner etc...

BUT my Neph has reservations because I am a Liver Transplant recipient and he does worry about infection maybe more with me than one who has not already had a transplant.
 
I have looked into the home dialysis but I am not sure I could stick myself yet. Those needles look HUGE. I don't have a problem with needles either with everything I have been through but those needles.....well, lets just say YIKES!!

I would love to hear any and all opinions/experiences you all have on this. Do most start out with in-center hemo?

Thanks MooseMom for posting this subject....I have been struggling with what to do....

Joy

[Sunny]

I have been considering modality for many years now.
In the end, I decided I would do in-center dialysis and gradually learn how to do button holes and stick myself.Then after all went well and I became very proficient at sticking myself, I would try NxtStage training at home. I figure this would take many months or maybe even many years, depending on how things went for me personally. Anyway, at least I have a plan now, whereas for a long time I didn't.

[paris]

My decision changed weekly.  Did I really want all the supplies in my home and have it be a clinic?  Would it be better to do incenter so dialysis was a seperate part of my life?    I went to PD training,  in center orientation, nxstage representative met with me --- I was ready, but my mind was never 100% on any type.   

Jean, my doctor set appointments with trainers in all types of dialysis so I could be informed and I was at 20%.   I don't understand why they don't want patients to have lots of knowledge before so there is plenty of time to plan.   Silly doctors!

[Jean]

I dont know either Paris, maybe they just think we are all too dumb to learn anything like that. HA!!!!

[MooseMom]

Jean,[\b] at least you have IHD to inform you about your choices.  While it is absurd for your neph to not discuss this with you, it's really not his call.  If you want to discuss it, that's your right.  But it's largely irrelevant because you probably already know more about the different modalities than you realize!  You can go it with a plan in mind, at least, and if, when the time comes, you see you'd rather do something else, at least you will already have educated yourself.  There's more information on IHD than any neph can give you in some brochure.

[Restorer]

All I got were some handouts from my neph, but based on that, I did research online, and (despite somehow not running across IHD) I decided PD would work much better than hemo. Really, I think my decision was mostly based on what I kept reading about the fluid and diet restrictions not being as bad on PD - and potassium wasn't a problem, so I could eat potatoes again! 

Having been on both, even with all the trouble I had with peritonitis, if I could go back on PD again, I would in a heartbeat.

[Deanne]

I'm going to try for a pre-emptive transplant. My neph will refer me for the workup when my function drops below 20%. My next lab tests include my blood type (I don't know what it is). My siblings won't be able to donate because it's a genetic variety of FSGS, so I'm just hoping for the best that I can get a kidney before I need dialysis. If I have to go on dialysis, I don't know which route I'll take. I can see benefits and drawbacks to each. I have six cats & dogs which might make the germ-free environment for peritineal a challenge. However, having six cats & dogs also makes it harder to set aside the time for in-center hemo in addition to having a full-time job. I don't plan to quit working.

[AguynamedKim]

With all of the information on this site, I think I'd try PD and see how well I did and/or how long my "tummy kidney" lasted.  After that, home nocturnal hemo as soon as I could get my fistula properly laddered, my button hole started, and self-cannulation down.  Man, I really have spent a lot of time looking at this website...

[MooseMom]

With all of the information on this site, I think I'd try PD and see how well I did and/or how long my "tummy kidney" lasted.  After that, home nocturnal hemo as soon as I could get my fistula properly laddered, my button hole started, and self-cannulation down.  Man, I really have spent a lot of time looking at this website...

With a GFR of >59, I'd say yes, you've been looking at this website faaaaarrrrr toooooo llloooooonnnnnggggg.  We're glad you're here, but you need to go out and have some fun!  And for ME to be saying this, well...I think I'm the paranoid nutcase of IHD, so if I'm the one telling you you are worrying too much, you can believe me.

[AguynamedKim]

   When MooseMom is right, MooseMom is right. 

[kremizin]

i am leaning more on PD.  my mom isn't working and she goes out once or twice a week so i guess PD is more suitable for her.  we will be seeing her neph on tuesday and i want to know what are her (neph) plans.  i dont want to wait wherein we have to rush my mom to the hospital for an emergency dialysis. 

[Henry P Snicklesnorter]

.

[vcarmody]

My husband researched every way.  He thought about PD but wasn't happy how long he would have to be on the machine at night,  His Nep said he would have to be on like 11 or 12 hours and he is not a big sleeper as it is.  We went to a Nxstage open house and I was all for it, Chris not so much (don't think he really trusted his untrained wife doing his treatments).  He went in center.  What a disaster that was, all the infiltrations, being over dialyzed, other patients screaming the whole time, no visitors, no food or drinks. Four hours is a long time to go with nothing to drink or eat especially at dinner time and when your diabetic no less (his time was 3:30 and most times he was not out of there till 830-9). Well he changed his mind and decided Nxstage was his way to go if I was willing to do it.  I had found this site months before and poured over everything myself and had decided that Nxstage was the best way to go.  Everyone on here was saying how much better they felt, how much gentler it was and how much freedom they have.  Having freedom was important to me because I am a police dispatcher and work twelve hour shifts, days, nights weekends, holidays.  My contract states when they need me no matter what my job comes first so flexibility was very important to me, beside the fact I love to travel being on dialysis can really limit your travel options.  We have been on Nxstage for almost a year now, we have been on two Caribbean cruises this year and already booked one for early next year.  Picking the type of dialysis you do really has to fit your lifestyle. This site is an amazing place for research, can't tell you how much it helped me.  I wish I could get my husband to go on here and read everything, but honestly I think he avoids anything to do with his kidney failure.   

[brandywine]

Well, my doctor told me that I had two or three months left before dialysis. I had suspected so. Been feeling like complete garbage. He asked me what my decision was. I'm going with PD. Will schedule an appointment with the PD nurse tomorrow. The process begins...

[MooseMom]

Well, my doctor told me that I had two or three months left before dialysis. I had suspected so. Been feeling like complete garbage. He asked me what my decision was. I'm going with PD. Will schedule an appointment with the PD nurse tomorrow. The process begins...

What considerations made you choose PD?  Let us know how you get on with the PD nurse.  I'm very interested in knowing how you are feeling now that the process begins.  I'm sure everything will go just fine, but it is a scary thing.  But at least soon you will hopefully not feel like "complete garbage"!

[Stoday]

Been feeling like complete garbage.

Yeah, that's how I felt three months before I started dialysis. It got so bad before I started that I ended up in ER for a week. That is not a good way to start. Try to make sure you don't get as bad as that.

[brandywine]

I chose PD because my job requires a lot of travel, especially day trips. It would seriously interfere with my work to go to a center three times a week, and being the primary income contributor in my home, I have to work as long as I can.  I think I'm capable of doing it (PD) myself at home. Also, it just seems a bit less invasive, more natural. I like the idea of daily dialysis. I've read that it's less of a rollercoaster (of sick feeling) than hemo. I watched videos of both procedures on Youtube.  Those were my two options.

[MooseMom]

 

I don't think any neph worth his/her salt would deny that longer, slower and more frequent dialysis is the way to go, which makes sense as this more closely resembles what native kidneys do.  However, the fact remains that in the US, over 90% of patients dialyze in center thrice weekly.  This seems to be the modality we are stuck with, the one that offers the worst outcome.  For those of you who have stated a desire NOT to do 3xweek inclinic hemo, have your nephs been supportive of your wishes?

[JustDee]

I have just reached that dreaded 15 percent whatever so it looks like Dialysis is just around the corner.  Last year when I tested at 20 percent my Neph said "within the year" I'd be on Dialysis and PD would be my best choice.  My Neph then sent me to the Davita Center so I could have a One on One with a Dialysis Tech, lots of information from him, lots of questions from me...in the end PD sounded like the best bet for my life style (I don't really have a lifestyle to speak of but doesn't that sound sophisticated?) Now I'm starting to worry about the Diabetes possiblity from the glucous in the fluid.  My tests usually put my glucous at about 125, border line diabetes I believe.  Does any one know if there is any treatment while on PD that would keep me Diabetes Free?  I would hate to treat one disease only to develop another...just doesn't seem fair, does it?

[MooseMom]

That's a really good question; I've often wondered that myself.  Why not go to the home dialysis forum and post your question there?  Quite a few people here are on PD, and maybe they can answer.

"Lifestyle" does sound sophisticated.  I have a "lifestyle"; it's mostly drudgery.