Barriers to home dialysis

[del]

Your health is so much better on home hemo. Hubby thought he was doing really well on in cener hemo ( 3 X a week) but it was nothing compared to noctural!!! Bloodwork is pretty close to "normal"  .  Doing nocturnal home hemo has made a BIG difference in our lives.  But it is not for everybody.

[G-Ma]

del is right...on nxstage I now feel like getting up and going even after dialysis and any other day, I'm finally getting my house sorted out from when I felt horrible all the time...the only thing I now wish I could do is self cannulate totally alone...I just have so much trouble holding that vein. 

[lruffner]

I am in the process of trying to learn as much as I can about all dialysis options, so I can make the best informed decision for my husband and I. I would think that more frequent dialysis would benefit anyone with ESRD, but I do have a few concerns. I live in a rural area and I am afraid what would happen in an emergency, as well as the frequent power outages we rural people face here in KY. I guess we would just have to notify our electric company and threaten the crap out of them? lol  We have an ambulance station within 6 miles of us, but no one is usually there everyday....kind of pointless for them to build this station to sit empty...but that's our good tax dollars at work 

As offensive as it may be to some here, I have to agree with some of the things Stauff has said. I also belong to another kidney site and have heard from other people the same type of psychological issues dealing with dialysis at home...even PD. One lady went back to in-center, instead of PD, because that is the only way she thought that she and her family could have a little bit of normalcy in life. She couldn't handle seeing the supplies and machine all day long, as it was depressing to her. I guess I can understand that and I am sure that I would love to pretend it wasn't there too, especially if you have small children and such. I worry about putting any burden on my husband, not that he wouldn't walk through fire for me, but I feel it is unfair to him and my guilt would eat me up. My reasoning for saying that, is because I have had to take of my mother since '03, shortly after my husband and I met, and just when it looked like we could live our own life a little and actually go on a honeymoon.....sorry, but you have CKD stage 4. He stuck by me and m mother through her liver failure and transplant, without ever complaining once, except how no other sibling would pitch in. He sacrificed as much as I did, by me being 4 hours away, for weeks at a time. Bla, bla,bla.

As far as a caregiver's role, it is the most rewarding and heartbreaking to go through. We may not be able to FEEL what the illness is like, but the emotional drain, heartbreak, and uncontrollable worry is also something. I promise that no one can know how hard it is to play that role, unless they have walked in their shoes either. I am now playing both. I have CKD and I still completely manage my mother's healthcare and part of her financial responsibilities. Del, Petey, W&W, you are all warriors in what you do everyday. Having done it myself, I just don't know if I can ask my husband to do it until I die.

Sorry if off topic a bit in places, but I just read all 8 pages

[monrein]

I think you've covered the different issues really well in your post.  It's tough to decide the best option and each of us has different factors to consider when choosing our personal best option. 
It is true that home nocturnal offers the best clearances and is probably easiest on the body.  It also poses the fewest diet restrictions.  It does however take up space at home and often requires a partner to be present which could be or become burdensome.  (I did it for five years starting when I was 26).   Any travel time you gain might be eclipsed by the setup and cleaning time you will need to do.  A small generator might solve the power outage situation but I read your concerns to be not so much about that as about the intrusiveness factor.

Then there's short daily which your centre probably won't allow so that's a second at home option with the same drawbacks as home nocturnal.  I do short daily at a self-care centre which is a fairly decent compromise solution but that may be unavailable to you.

Then there are the PD modalities which some people really like but again there is the supplies at home business all over again, plus the catheter being ever present.  Personally, I dislike the catheter thing way more than the needle thing but that's just me and everyone is different.  Many people who do PD successfully would never switch unless forced to.

Then there's in-centre three times a week.  This may be your best bet (unless you decide to try PD first of course) to start with until you get used the whole process and the ins and outs which can seem very overwhelming at first.  When it has become routine for you, you may then be in a better position to decide if you and your family could not only manage it at  home but in fact find that the benefits outweigh the disadvantages.  No one else can know what will be best for your family in this regard and it isn't a choice between right and wrong. 

I'm curious about what you'll decide in the end but remember that you can always change your mind later if you choose one modality and it isn't suitable.  Your first decision however will need to be hemo or PD.

[Lucinda]

This has been a really interesting post.  I start my home hemo training next month.  Because I have known about my kidney problem for years - and had my graft in the past two years, I have had plenty of time to weigh up the options.  My father did PD at home then in centre dialysis but I am opting for home hemo as I am lucky enough to be able to dedicate a special area  of my house to home hemo so I can shut it off when I am not on the machine.  I am going to be writing fulltime from now on so I can still work while I am dialysising and escape into a fantasy world and work during dialysis.  I don't think I am going to have too many problems getting use to the needling and my husband is also going to come to the last couple of weeks of training.  In Australia there is a huge preference for home hemo if you are a suitable candidate.  I am just lucky enough to have had the time to adjust and ready myself.  I feel very sorry for those who have no "adjustment" period before they start the process.  I don't think it is going to be a walk in the park by any measure but I believe I have picked the best option for me.  I am no stranger to dialysis or transplants with family members going through both but home hemo is a preference for me even over a transplant.  In time I may change my mind but while I am capable of handling my own treatments I am happy to go that way.  As for any emergencies, I am only 10 minutes from a hospital and it would be a case of crossing that bridge if I came to it.  It doesn't matter which method of treatment it is, in-centre, home hemo, PD or transplant, there is always a chance something can go wrong with all of them so all the treatments are Russian roulette for everyone with ESRD.  The best chance of dodging the bullet is to pick which one best suits you personally - physically, emotionally and mentally.  There is no right and wrong here.  What works for one may not work for another.  Everyone's experience is different.  For example Zach and Stauffenberg have had two totally different experiences with dialysis.  Doesn't make one right and one wrong.  Both are highly intelligent and informed with strong, yet differing, opinions in relation to treatment options.  Their colours are very different and it makes you realise that with this disease there is no such thing as just black and white. 

[del]

You are right lucinda there is no such thing as black and white with kidney failure and dialysis. It seems like no 2 people are alike - what works for one person does not necessarilly work for another.  We are about an hour and 10 mins drive away from a hospital luckily we have never had an emergency.  We are lucky enough to have room in our house for the hemo supplies (just get about a month's supply at a time).  When hubby finally does the doors to the cabinet in the bathroom you won't even be able to see the supplies. Neither of us mind the dialysis machine and ro in the bedroom .  It is much better than driving 3 times a week to dialysis.  We have only lost the power once for about 2 or 3 mins in the 2 years hubby has been on home hemo.  You are trained on how to wash back manually so power outages aren't really a big issue.  A lot of the training involved emergency situations that you probably will never have but just need to know how to handle just in case.  We have never had to wash back manually (yet).

Home hemo is not for everybody though. Same as PD is not for everyone.  Some people really like PD whereas hubby always hated it!!  Some people just find it too hard psychologically or are too nervous that something is going to happen.  But for the people who want to do it and are able it is the probably the best form of treatment next to a transplant.  As for being a burden on your spouse talk to them and see how they feel. I do not consider it a burden at all. I consider myself a partner rather than a caregiver anyway.  Hubby has just as much to do with his dialysis as I do. More most times!!!

I just thing everyone should be educated on all the treatment options for ESRD and be able to make their own decision of which option is best for them.

[kidney4traci]

I agree with how the thought of home dialysis would be a turn off.  We have my machine our bedroom and a corner of the room is filled with boxes too.  It is not very romantic, but hubby has not minded.  The only thing we minded is that the machines make noise 24/7.  I do turn off the cycler occasionally as it is louder.  But after 4 years we have gotten used to it.  Do dream of what I will do with that side of my room once I get a transplant!  But as for now, it has been wonderful and life changing to have it at home.  I know the topic heading was barriers to home dialysis, but for the most part, I would never want to do any other mode again.  I am only 41 and have have three children.  My kids see my during the dialysis that I don't have to leave for it.  I already work part time so I am away from home less now because of Nxstage.  I would rather stick myself, I have had no problems with that this year as opposed to being in center and getting stuck by tech's that were just learning their job.  I can add fluid myself or shut off the pull myself if I feel like I am too dry.  I can do it at whatever time of day I want.  I can do it what ever day I want - I keep my own schedule.  I only have to see my nurse and dr once a month.  I don't have to listen to someone else's tv on too loud.  I don't have to listen to others getting sick right next to me ( and other body functions we will leave off here...).  I can do it in my pj's and don't have to wear a bra (ha!).  I can take a nap and not be interrupted by others.  I can eat something.  I can go on my laptop.  I feel better too as mentioned since I do it more often at home, getting a  better clearance.  During the hurricane, our center lost power for over a week - I had mine on the next day thankfully and had no interruption in treatments.  We do have a genterator if needed.  We have a RV trailer and we go camping often, and I take my machine with us.  No more having to plan to go to another center during a trip.  So, all in all, my vote is for home hemo.

[lruffner]

Thanks for all of the great posts and advice. I do believe that whichever type of dialysis I choose, it will be at home....really Love the "no bra" thing Traci!! I believe they should be illegal, because for me, they are the most suffocating, uncomfortable contraptions on the planet, next to underwear up your butt!

I never thought about the generator, so that is an idea. I am a visual learner and I wish that I could actually SEE people doing the different types first hand. I have visited my local clinic and everyone looked absolutely miserable. I am sure that they are, but I am not much into "showing" how I feel when it is bad. I would rather be out of the public eye. PD sounded cool, except for the infections, it not being permanent (peritoneal lining), and that it is much harder on the heart. I have some seriously, horrible hereditary cardiac issues in my family, so that is my biggest concern. The docs are pushing hard for the transplant, but I don't think I will be a candidate due to having peripheral artery disease, calcification of my abdominal aorta, and both iliacs. I know that I would be facing some major surgeries just to see if I could qualify and that is a turn off. Besides all of that, FSGS has a very bad reputation for making a comeback, so I am not sure it is even worth it. I know one person who has had 4 transplants and is back on the big D....sorry, but SCREW THAT!

I am not worried about the intrusiveness of it, but I worry for everyone else's convenience. I don't want to disrupt anyone's life anymore than I have to. We have a 4 bedroom house, but 2 of the bedrooms are for my step-children...who we only get to see once a year....and the other bedroom, besides ours, is in the basement. I refuse to be stuck in the dungeon! It's too cold and if I had an emergency, I want someone to be able to get to me!

My biggest problem monrein, in all honesty, is that I am the most indecisive person on the planet. I can go to McDonald's and look at the menu for 20 minutes undecided, but order the same old thing. I do that everywhere! I am completely ridiculous in that dept. and it drives me bonkers, as much as my very patient husband..lol

[kidney4traci]

I like your response. but one thing comes to mind.  You don't have to stick with whatever mode you choose.  If you are unhappy, talk with your doctor and they can make changes, adding pd after home, vise versa... you are in control.  You are the patient, you have the right to choose at any time.  So don't feel pressured to make the "right" decision now.  The point os to get on one so you can start to remove toxins and feel better.  You may actually feel like you can think better once you have started this process. 

[lruffner]

Thanks Traci. I am not at the dialysis stage just yet, but when you are at stage 4, they say there is no exact timeline. I am just trying to learn as much as I can right now, so that I don't feel as if I have been hit by a truck when it does come! I also want to take my other health problems into consideration when choosing, so that I can live as long as possible, and feel the best that anyone can on dialysis. My IU/ Mayo doc thinks that PD would be the worst option for me, due to protein loss, so I will have to make him explain that better.

Have a great day! 

[monrein]

I agree with k4t.  Maybe you just need to pick one, get the access put in so it can heal and you're ready and if it seems undoable you can switch.  It's also a really good point about how the toxins make us "fuzzy" in our thinking.  I am usually very quick in my recall and in my logical reasoning but for now I am "not as good as I once was" to quote a Toby Keith country song.  I notice the mental stuff especially in my puzzle solving abilities.  This aspect of things was WAY worse pre-dialysis and has improved although I still feel I've lost more than a few IQ points.  (I'm a natural blonde so most people don't expect too much of me anyhow....just kidding.  No letters to the editor in defense of blondes please. lol)

[lruffner]

This may be an embarrassing thing to admit, but I am not even close to anyone even discussing an access yet. In all actuality, no neph wants to discuss dialysis at all, just trasnplant, but I am making them discuss it. As of 3 months ago, they speculated about 1 year. The way I see it, that is not a long time, especially when talking about fistulas. I want enough time to get mine as strong as possible, way before I start getting stuck. I am probably a little overboard in the "have to know and being prepared" dept., but that is just the way I work. I want to know all I can and then have all of my choices prioritized. I go back up north in a few weeks and at that time I plan on blocking the door (to prevent doc runaways) and discussing all of the options.

Even though my GFR is still in the lower 20's, I have noticed huge changes in my short-term memory. I can't remember squat, which is not good at all. I worry about that especially since I am still in charge of my mother's healthcare and terrified that I will screw up somewhere. I can't even tell you what I watched on tv yesterday, so something must be up. Who knows.

[monrein]

Lists are my friend and saving grace.  Lists of anything remotely important.  I started D with a GFR or about 18 I think and my creatinine was 3.5 or thereabouts but I felt like crap, bad ammonia breath and some nausea, no appetite really.  I didn't want to get too sick before starting.  I tried holding off till my fistula was mature but still ended up with a permacath as I couldn't wait any longer.

I'm a need to know everything to be prepared kind of person also.

[Wallyz]

I also want to take my other health problems into consideration when choosing, so that I can live as long as possible, and feel the best that anyone can on dialysis.

Home hemo, extended therapy. Slow, gentle, thorough dialysis.  That's my vote.

[del]

As everyone probably knows I am a firm supporter of nocturnal home hemo. A long , slow gentle treatment.  I just wish that someone would devop a portable machine that would be available in Canada-then we could travel without having to do in center treatments.  Hubby hates having to do in center treatments now.

What ever treatment you choose though you can always change if you really don't like it.  The treatment you choose has to be the one that suits you best. Hubby has chosen not to be placed on the transplant list mostly because he has to travel out of province for the transplant and because of the side effects of a lot of the meds. 

[petey]

Del, Petey, W&W, you are all warriors in what you do everyday. Having done it myself, I just don't know if I can ask my husband to do it until I die.

Thanks for your words, lruffner, but I've never considered myself a warrior -- or even a caregiver.  I'm Marvin's partner, and this (dialysis) is just one more thing that we've taken on as a team (especially since he switched from in-center hemo to home hemo).  When you add it all up, Marvin's "contribution" to his home hemo treatments is much more than mine; he does most of the work.  I'm just his "sticker" (he can't cannulate himself).

I love him.  When I became his wife, I promised -- before God and everybody and mainly to him -- that I'd be there in good times and bad, in sickness and in health, for better and for worse.  And, believe it or not, in the 22 years we've been married (the last 14 with ESRD, dialysis, transplantation, and dialysis again), we've had many, many more "good" times than bad and many, many more "better" times than worse.  If I thought that Marvin really wanted to do home hemo (for better overall health, more convenience for him, more control, or whatever the reason) and didn't try it -- or at least look seriously into it -- simply because he wouldn't want to "burden" me with it too, I'd be heart-broken.  It's not a burden to me; it's an opportunity to assist this wonderful man I married and I love with every fiber of my being in his life's journey.  And, though I'm not a dialysis patient, Marvin helps me with my life's journey, too.

Talk to your husband, and see what he thinks.

[willieandwinnie]

lruffner, First, thank you for thinking I am a warrior, believe me, when I tell you that is not correct. I agree totally with what petey said. 

Please talk to your husband and lay out all your feelings. Look at your living situation and see if it is feasible for machine and supplies and remember that supplies will have to be ordered bi-weekly or monthly and they do take up space. Talk about what treatment would be best for you and your overall health. If and when you make the decision, things will just start falling into place. If you need more information or answers, please ask away, we'll be more then happy to help you. 

[del]

Amen petey!!!  That is exactly what I would have said if I could have found the right words like you did petey!!