Need another caregivers point of view!

[buffalogal855]

   Hello everyone - I am the caregiver to my husband who has Stage IV kidney disease due to diabetes. Our nephrologist has enrolled us in one class that discussed peritoneal dialysis at home.  This seemed okay at the time, but they gave no negatives in relation to this treatment.  I am wondering, as my husband is not one to embrace his treatment, how much better this will be for me as opposed to hemodialysis at a center?  My daughter's mother-in-law is a home health nurse and says this treatment will not be good for us because he will be "hooked up" everyday as opposed to 3 times a week.  Also everything must be sterile and the chance of infection is more pronounced in home treatment than center dialysis.  Thank you for you for caring

[Poppylicious]

Your husband may embrace PD because it's done in the privacy of his own home.  There's no denying that it will be intrusive for you (you'll need a spare room just for the boxes!) but daily dialysis will be better for HIM, as opposed to going for haemoD three times a week.  Or it should be ... one negative is that it might not work well (it didn't in my Blokey's case) and that was very frustrating for him.  I think that the positives far outweigh the negatives so it's probably best not to dwell too much on them.  What modality would he like to try?  You probably need to have a discussion with each other about the pros and cons of any modality on offer and come to an agreement. 

I'll be honest with you, I HATED Blokey being on PD and was therefore relieved when it didn't work.  I know, I'm a cow!  But I'm an honest cow.  I saw it as an intrusion into our life and home, and I wanted Blokey's illness to be separate from that.  I imagine that's what your daughter's MiL is alluding to.  However, it was always his choice and I never would have taken that choice away from him.  It was heartbreaking to see it fail and of course I would have learned to embrace it and love it.  As it happened, haemoD with a fistula was the best thing that could have happened for Blokey so all worked out well. 

If your husband can do everything for himself, then your role will be very small. It was my job to empty out daytime manual bag ... *grin* ... but Blokey did everything else.  I was just a spare part flitting around, getting in his way. 

I can't remember how long Blokey was on PD (maybe 3 months) but we didn't have any issue with infection ... he was very good at keeping everything sterile.  Me, not so much! 

We have plenty of partners here who do dialysis at home with their loved ones, and I'm sure they'll have much better advice than me!

 

[amanda100wilson]

I am glad that you are asking here and not taking the word of a nurse who has no experience herself of dialysis. I was on PD for eight years and a short-time doing in-unit HD and personally cannot begin to understand why anyone would wish to do the latter.  PD gave me a good quality of life for several years (I am now doing home HD) whereas the short time doing in-unit was miserable.

To do PD, your husband would be taught universal procedures to prevent infection.  This involves thorough hand-washing and making connections without touching the sterile ends.  There is no such thing as a sterile environment (other than inside sterile medical packaging), the area simply needs to be relatively clean and free of draughts such as open windows or fans which will move dust around.

Yes, you need to connect up every day to a cycler (unless CAPD) is chosen which does the work of changing the fluid automatically through the night , but is is kinder on the body and your husband would feel well and not get the post-dialysis washed out feeling that makes you just want to sleep for the rest of the day.  There is also a much greater risk for cardiovascular events following a weekend without dialysis.

A bigger time commitment is home HD, be it short daily, or extended through the night, but I am now doing short daily and now feel wonderful. 

I hope ultimately your husband will elect to do the modality that suits him and not be unduly influenced by your daughter's mother-in-law.

[MaryD]

I'm a user of PD - not a caregiver.

CAPD sounds as though it will take up an awfully large part of your day (4 x 40 minutes) but I find that it takes 5 minutes to prepare and hook up, and then I can do all sorts of things around the house while I'm draining in and out.  To me, the idea of losing 5 - 6 hours 3 times a week, at a time which mightn't be convenient to me, is not good.

I keep my hook up area scrupulously clean.  I have two indoor cats with all the resultant fluff - and housekeeping is not my strongest point.  I haven't had a problem yet with an infection.

I feel fantastic since starting PD. 

[MooseMom]

My daughter's mother-in-law is a home health nurse and says this treatment will not be good for us because he will be "hooked up" everyday as opposed to 3 times a week.  Also everything must be sterile and the chance of infection is more pronounced in home treatment than center dialysis. 

I am very concerned that a health professional exhibits this degree of ignorance about the fundamentals of dialysis.

There is a higher risk of infection in clinics because 1. there are a lot of dirty, sick people there, roaming in and out as shifts end and begin, and 2.  unfortunately, techs often are not scrupulous about infection protocols.  They get busy, lazy and indifferent.  It is precisely because the risk of infection is higher in a dialysis clinic that patients decide to dialyze at home.

Your husband will want to be "hooked up" as often as it takes to make sure he rids himself of toxins and excess fluid.  For the vast majority of patients, three days a week for 3-4 hours a time simply does not keep them healthy, and this is why outcomes for dialysis patients in the US are worse than those for most cancer patients.  Remember that healthy kidneys are ALWAYS working, so doesn't it make sense that the more dialysis you do, the better you are going to feel?  Being "hooked up" ONLY three times a week in a clinic is NOT a good thing.

You also have to keep in mind that for many patients, in center hemodialysis days are lost days.  There's the travel time (are you going to have to drive him to the clinic and then return to pick him up?), and then there will be his recovery time once he gets home.  He probably won't feel up to anything until the next day.  That puts all the burden on you on his dialysis days.

Dialysis impacts the life of not just the patient but also of the family, so it is critical for there to be open and honest communication.  If you do not want to be involved in his home care, you do not have to be, but you need to make sure he understands that he is going to have to rely solely on himself if he wants to dialyze at home and survive.

Care partners are virtually unknown in other parts of the world; it is only here in the US that there is this mindset that one must have a care partner in order to dialyze at home.

What do you mean exactly when you say that your husband won't "embrace his treatment"?

Last thing...if he were to choose one modality and discover that it really didn't suit him, he can change to another form of dialysis.

[gothiclovemonkey]

Sorry, im not a caregiver, but I was living on my own, with my son at the time of doing PD. I personally felt it was easier on me, and my son sure loved the extra mommy time. It was lovely.
Ya, lots of boxes, but most of mine fit in my bedroom closets in my apartment.
One suggestion I would like to make, try it, if you dont like it, there shouldnt be a problem changing to hemo
good luck

[Joe]

Hi there Buffalogal, and  I also am not a caregiver, but a PD practitioner. I do CCPD which is mostly done while I'm sleeping. I do have the extra time commitment of having to do a manual in the afternoon, but that's me. I'll echo that the environment my stuff goes in isn't sterile, but it is clean. I practice aseptic techniques when I'm connecting and disconnecting, other than that, I'm pretty much in the normal environment, even up to having the dogs in my lap while I'm dialyzing. I have heard that PD patients are more prone to infections either at the exit site or in the peritoneum, but if you maintain cleanliness, there shouldn't be a problem. As GLM said, give it a try. If it doesn't work, you can always go to hemo either in center, which has it's own issues, or at home.
Good luck and let us know how you are doing!

[bevvy5]

My husband started with PD, did a run in in centre hemo three times a week, back on PD, back to in centre and now we are starting nocturnal home hemo.

He never felt so awful as when he was just getting 12 hours a week of hemo.  That is definitely something you want to avoid if PD works well for your husband.  By works well, meaning adequate clearance to take away the toxins and keeping the fluid at a level that is healthy for him.

I also add that he feels better now with more hemo (and we are just ramping up to "full time" nocturnal) than he ever did on PD.  But that's just him - he never had optimum outcomes with it. 

As others have said, he can definitely try one modality and change to another.

[looneytunes]

If by "embracing his treatment" you mean that he depends on you to do everything for him, any form of home dialysis is time consuming.  As a care partner, I can tell you that it is like taking on a part time job if you have to do the majority of the work involved.  With both PD and home hemo, there are a lot of supplies that must be stored and some type of inventory kept to be sure they don't become outdated and that there is always enough on hand to meet his needs.  There is continually the ordering of supplies, set up of whatever modality is being utilized and the clean up when finished and also some record keeping on the treatments for your supporting clinic.  My hubby did PD (with a cycler at night) for almost 2 years and then we did home hemo with NxStage for another 2 years.  He also has spent some time doing in-center hemo 3 x weekly.  He currently is doing in-center nocturnal. 

As far as the risk of infection, it exists for both PD and home hemo.  But, I also agree with MooseMom.  The risk of infection is much greater in clinics than at home.  As long as common sense is used and things are kept clean, hands are washed well, masks are used when indicated...infections can be minimized. 

With all that said, hubby felt much better doing home dialysis than the in-center 3 x weekly type...until now with nocturnal which is working out very well for him.  Though there was a lot of work involved for me, it was worth it to see him feel better and not sleeping all the time like he did when he was doing in-center hemo.  But I would have to say, that with him back in-center with trained nurses monitoring him, I am a lot less stressed.

Whatever you all choose, I'm wishing you the best.   

[gothiclovemonkey]

I am very concerned that a health professional exhibits this degree of ignorance about the fundamentals of dialysis.

When I was in the hospital for surgery while I was doing PD, only one or two people even had a clue as to what I meant when I said PD, and they did not know what to do when it came time for treatments. People dont know much about it.
Of course, if its not on TV... or in mainstream media, no one would know i guess

[MooseMom]

I certainly understand that all medical personnel can't possibly know everything about everything all the time and everywhere!  LOL!  But if you aren't educated in, say, peritoneal dialysis, you shouldn't be giving advice about peritoneal dialysis.

I can forgive ignorance but not the advice that comes from said ignorance!   

[brenda seal]

I am also a care giver to my husband who has recently started on PD , after only the second day he had peritonitis but I am convinced he contracted this at the clinic whilst training . Not many people do know very much about PD , I was quite shocked to discover this included our GP .
It is understandable your husband does not "embrace " his treatment , my husband Laurie had trouble coming to terms with the need for dialysis and saw it as - the beginning of the end . I worked hard to keep him positive , he lived a kind of half life for a long time as his kidney function diminished - he was sleeping up to 20 hours a day and had no energy and was weak and confused . I saw dialysis as a good thing that would improve his quality of life ( and selfishly mine ) .
Once you have initially "set up " - that is - established a place for the treatment to take place and found somewhere to store all the requirements , it quickly becomes part of your daily routine .
As for how much better it will be for you personally depends on how involved he needs you to be in his treatment . The area you use will have to be kept clean , but you have to clean anyway . Would you have to drive him to and from treatments if he were to go to a centre ? To me this would be a bigger burden than doing treatments at home .
My role in Laurie's PD so far has been the initial set up and organization of all the supplies , making sure he has everything he needs  and that it is all readily available . I sit with him while he drains and fills and chat , if he is tired or not feeling well I do the clean up , that is empty the bags and put everything away .
He has not had any other form of dialysis , so we have no basis for comparison . After considering what was available we considered PD would be the best option for Laurie mostly because this way he has some control over what happens during treatments and he absolutely hates hospitals , clinics or anything like that . He feels lucky he can do his treatments at home .
 Good Luck .

[amanda100wilson]

PD is what you make it. If you make a big thing out of it , it will be.  Dealing with the supplies is no t really a big issue, as the Baxter delivery guy will organise your stock, there is no need to keep an inventory.  If you ask them, they will arrange the supplies  in a way that you will know which boxes need to be used first (that is part of their job), snd all the boxes have an expiration date on them.  When you order, you simply count the supplies, takes about a minute, and then placethe order.   In the total ten years that I did PD my husband had absolutely no involvement in any aspect of it whatsoever.  Home HD is a little more onerousin that respect because there are more different items to count and order, but it is still no big deal. 

Hygeine in a dialysis unit depends on the unit.  I used to watch mynurses and techs. And they were scrupulous about washing their hands and the unit was very clean.  However, there is a lot of time wasted just sitting around waiting for them to put you on and take you off the machine, in addition to the traveling time. 

[billybags]

PD every time. Go for it.

[buffalogal855]

   Thank you everyone for the comments!!  Every single one is very much appreciated.  We did have a conference on PD with the nurse and the reason we were interested is that Dave could be at home and dialyze at night.  We were further encouraged by his doctor who thinks we would be ideal candidates.  However my children are worried about me and the stress involved.  When I mention he did not "embrace" his treatment I mean the fact that he does not want to even consider transplant, said he would sooner die than go through this treatment.  I am here for him always but I cannot do everything for him.  He is very angry right now and I'm afraid if something goes wrong I will be blamed.  I told him Life or Death it is his choice and I am willing to fight, but not give up!  Thank you all!  Will post later. 

[amanda100wilson]

Has your husband known for long that dialysis was around the corner for him?  The reason that I ask is that he sounds as if he may be cycling through the grieving process  over the loss of his health and independence, ehich is giving rise to the anger; and also denial with the 'i'm not going to have the therapy/have a transplant.". In other words,"if i say that I won't do this, then it won't happen".  Probably not explaining it too well, but I can remember feeling the same way whenI found out that I needed dialysis.  It's illogical thinking.  My thought process was, if I tell them I won't do it, then they (the doctors) will make sure that I don't have to do it.

It is a very confusing feeling to go through.  It's not that he wants to die/not live, he wants to live as he has up until now.  I felt like a scared animal backed into a corner with no place to escape to.  He will do it, because the options are to live or die, and I am sure that like the rest of us who are on dialysis, that he will come through it.  A large part of it is fear of the unknown and once he starts and settles dow to doing dialysis, then he will come to realise that is is not so bad.

I am not sure why he would not want to receive a transplant, but he may come to change his mind.  One thing that I would say though, is that she should not get evaluated for one unless he is clear about wanting one.  Any ambiguity at the evaluation could mean that he would be denied being listed.  Having had a transplant, I still feel that it is the optimal treatment, despite the negative adpects of having to take the immun-suppressant drugs and the risks that thei use presents.

[The Noob]

i'm a snob. i am hands down home hemo. hated PD, supplies alone broke my back. fluid full of sugar (not good for diabetics) and much more sterile technique with PD. plus easier i thought to get infected. and DH had to have special big boy pants because he looked 7 months pregnant with the fluid he was carrying around all the time with leave the PD in.
he hated the tube hanging out of his abdomen, the belt he had to wear to keep it in place, the lift restrictions so he didn't get a hernia, and the restrictions on a shower, no swimming, etc.

if your going to spend that much time and effort, and room for supplies, why not do home hemo? he can train to do it himself as long as he is okay with the mobility. yes, he can even learn to write on the calender the delivery dates and make the calls and so on.
thing is, if he is counting on you to do all this for him, this is a recipe for divorce. its one thing if they simply can't do it. but quite another when they refuse.
home hemo for almost everyone i've met doing it, says they feel normal again. not the wiped out feeling from in center so they feel like an invalid. DH does all his own treatment and set up/tear down, orders, i help with labs and set it up about half the time. he used his permacath the first 3 months, alternating the fistula as it was new.
he got the catheter out few weeks ago and i took him to hotel to swim and hot tub. no one knows he has a fistula unless he tells them. no more tubes hanging out. no more PD clothes.
the boxes of solution, if you don't use the pure-flow (for home hemo) are smaller than the PD boxes.
if we knew then what we know now, would have went straight to Nxstage!

[buffalogal855]

   thank you amanda 100 and noob for your very candid and informative comments!   Dave is a Stage IV and his doctor wants to get things in place before he needs dialysis.  No doubt we were in denial, but he wants to follow very closely the diet that has the low protein food list and we will work hard on that.  Otherwise the doctor was pleased with his blood work, except the high potassium level so we will do our best to strictly follow his diet.  I am sooooooooooo glad I found this site.  The doctor's office only gave us the DaVita web site.  Love you guys, hand in there and thank you so much.   

[buffalogal855]

   oops meant to say low potassium foods!

[natnnnat]

When I mention he did not "embrace" his treatment I mean the fact that he does not want to even consider transplant, said he would sooner die than go through this treatment. 

Amanda said what I was thinking, about grieving and hoping things just wont happen.  My husband's transplant is slowly (slooooowly, very slowly we hope) failing, and he used to say stoutly "I'm not going back on dialysis, and this is me last transplant".  Read between the lines.  I got really upset about it but then I figured that he would come around, and I've left him to his thoughts with that one.  He seems pretty cheerful.  And he's been feeling good lately, so he might be right, we might have years till the time comes.  I've been looking at treatment options, knowing that it takes time (to install a fistula, as his old one isn't 'connected' anymore; to get the house set up for plumbing; to test for my suitability as a donor, to find out if he can have PD again). But he doesn't want to hear about the results of my investigations at all just yet.  He says we are all 'giving up on Lucy' (that's his transplant).  But at least, recently, he has said he wants to try PD first, which means the talk of signing off when his transplant fails, might be over for now. 

In answer to your original question, Gregory was one of those who didn't do well on PD and didn't like it 'taking over' his parent's home (he was in his late teens at the time).  He did in centre three days a week.  I can't blame him for not wanting to go back on dialysis.  I don't want him to either.  I hope your fellow finds a way through "having to" follow this stupid path, and gets to the point where he can be matter of fact about it all.