From home back to in-center D

[MooseMom]

I was not sure in which forum to post this question, so if a mod wants to move it, feel free.

We all understand that more frequent and slower dialysis gives better clinical results and usually just makes dialyzors feel better.  The professionals can prattle on about numbers all they want, but what patients want is to FEEL BETTER, and most dialyzors feel better with better dialysis for very obvious reasons.  But usually more dialysis means HOME dialysis...you just can't get more dialysis in a clinic, at least not in the US.

So, have any of you tried home hemo (not PD, but home hemo) but later decided to go back in clinic?  If so, what were your reasons?  Has going back in clinic solved whatever problem drove you away from home hemo?  Are you feeling better physically now that you are back in clinic?  Are you happier being back in clinic?

Thanks so much for your replies!

[boswife]

Well, i cant give you a personal example of this but i will tell you of a fellow 'in-center'  patient friend of ours.  He is just the nicest man ever and we used to spend a lot of time talking about his experience 'at home'  and life in general.  So,,, His story was this.  He got trained for home hemo (nxStage) and though his wife was home when he Dialisized, he did it all himself except for the take off.  He was very happy with it but............... he also had his daughter and grand child living in the house, and they were devistated by it.  If they were home when it was time for D, they would just retreat to their room and cry.  He was so concerned for them, he went back to center so as not to disrupt their lives.  I asked him if he would be home if not for them and he said that when they were settled in their own home (which may not be anytime soon) his plan was to go home.  He was home long enough to feel the benifits of 'more' D, and is looking forward to it once again.  He still does his cannulation in center, and is the only one who takes an active part in his treatment there, but still is getting 3x a week and has big ups and downs with it.  I wish (well sort of) that he could just come here and do his D with hubby daily but im afraid that would be a bit much for me in the long run even if he was doing it for  himself.  So, not that that was exactly what your looking for, but just an instance of 'going back in-center'

[MooseMom]

What an incredibly interesting story.  I really don't know what to say!  I have so many questions; I know you can't answer them, boswife, but allow me to just ramble a bit...

I wonder if no one prepared the daughter and grandchild ahead of time.  What exactly was so "devastating" about seeing someone on dialysis that drove them to tears?  If your friend was happier and healthier with his treatment at home, wouldn't that have been some solace to these two family members?

My first reaction is to marvel at the selfishness of the daughter.  Imagine forcing your father to have poorer treatment away from HIS OWN HOME because YOU couldn't "handle it".  I'm a little surprised that your friend wouldn't say something like, "This is the reality of my life; this is the treatment I choose for myself and I will not compromise my health because you are too much of a weenie.  Let me explain to you why having dialysis at home is better for me..."  But I often find that situations that seem so obvious on the surface may be more complicated than we realize.

Still, that's awfully sad for your friend.  I wonder what his daughter will feel like if poorer dialysis leads to problems that could otherwise have been avoided.  And I have to wonder why your friend's wife didn't stick up for him.

If you ever find out the answer to any of these questions, do let me know!  You are easy to talk to, so maybe this man will tell you what's really going on.  But on the surface, I find this to be quite outrageous.  Thanks for sharing this story!!

[tyefly]

My thought are the same as MM.... I think they were either not prepaired or  they are very selfish...  Young people often dont like to face reality....   It would of been good for them to learn to deal with things.  I also feel bad that the father didnt stick up for him self...  but instead just bow out...

Anyway....  I have talk to people who have went home after being home on Nxstage and it was usually because their spouse didnt want to deal with the extra work... or the Patient didnt want to deal with the extra work... I have talk to many people who are interested in doing dialysis at home  but when I fill them in   they say  " I dont want to spend more time on the machine"   Or   they will say  "  If my doctor thought I should dialysis at home I would but he doesnt so I dont say anything...."   It seems to me that many people just want to go in and they stick their arms out and the techs get the job done and then they go home..  Even if you try to convience them that they will feel so much better ..... they cant get past the amount of time it takes to do home hemo.....
  Sometimes I feel like it would be easier to go in center   just three times a week...  12 hours a week.... and I am done..but  then I think back to how I use to feel , the cramps, the crash.... and  well     NO Way..... I would rather do double dialysis then feel they was I use to....  its not worth it to me.... NO Way.... I feel so good....  now...  and now that I am doing nocturnal I should feel better... Not sure what that will feel like....

[monrein]

I did home hemo the first time around and it worked well for me (at that time I did 5 hours three times a week...that was the "norm" back then.).  The second time though I did in center but at a self care clinic, thankfully we have that option here in Toronto, and did 5 days a week.  I decided that although I did everything myself I didn't want to have my small house made smaller still by the modifications necessary and I really wanted my husband to not feel he had to be here just in case.  He supports whatever I decide to do about treatment but for us and our relationship it really was much better to be not dialyzing at home.

Having said this, if the more frequent option had NOT been available, I would have paid someone to come in to be in the house, regardless of whether Lee were here or not, so that he would have been free to come and go.  Thank heaven for self care units outside of hospitals...cost effective, minimally intrusive to patient home life, patient empowering, independence fostering...an all round excellent option.

[KICKSTART]

Its funny i did pd for years but could never imagine myself doing home hemo (not that i have that option, unless my little pawed people could help out ! ) I know there was a lot of stock with pd but luckily i set everything up in a bedroom just for pd , so once finished i could just shut the door on it all. I think home hemo is a little more invasive, alterations have to be made =costs, plus its in your actual bedroom, there constantly. I would love the benefits of it and am very independent even at the unit ..as well you know ! Im sure if protocol would allow they would just let me get on with everything !

[MooseMom]

There ARE a lot of things to consider.  Since we don't have self care in clinics here, if you want to get the best treatment, you have to do dialysis at home.  It's crappy that it is that way, and we're trying to fight that, but insurance companies don't want to pay for extra treatment and dialysis providers don't want to get in more staff.  It's all about money.  So, we have to provide ourselves with the best treatment.

With NxStage, there is no major modifications to make.  That's the beauty of it.  Other machines require special plumbing, but if that's the price you pay to protect your heart and your body, well, it seems pretty small. 

I understand the desire not to medicalize your home, especially if you have a spouse who wants a pleasant environment, but with interesting storage ideas being all the rage these days, a little creativity can reduce the "clinic look".

My husband wants me to do whatever treatment I want, however I want it.  Frankly, I think he feels bad that he has not lost the weight necessary to be eligible to be a paired donor.  His mother has adult-onset diabetes, and her father had it, too, and I know my husband is afraid to find out that maybe he has it, too.  He gets to run away from his fears; I have to face mine because if I don't, I'll die.  Sometimes I wish I could live in denial along with him, but that's just not possible.  Anyway, I think my husband feels guilty for his fear and his lack of willpower, and in exchange, he is eager for me to do whatever I want to do regarding my own dialysis treatments.  He wouldn't dare fight me on this.

I can understand how people would want to spend as little time as possible on a dialysis machine.  Do you all think that more time on the machine at home would be easier for more people to bear than more time on the machine in clinic?  I'm just trying to gauge the psychological burden of more frequent dialysis.  I know that most people feel much better, but on the flip side, it IS more time on a machine and it IS more work.  Yet standard dialysis in clinic can make you feel so very rotten.  So which do you think would win out...feeling physically (and, therefore, emotionally) better but more time hooked up in a home environment, or feeling less well but with less time hooked up but in a clinic environment?

There is no right answer; everyone has to decide how much value to put on which benefit.  Thanks very much for any thoughts you may have on this subject.

[lola]

Otto went back in-center as his heart started to act u and he needed to be watched better. I was scared to death things would go down hill, BUT he is feeling better in-center (i know wierd). I have to say it's soooooo nice to not have all the stuff everywhere. I didn't relize how much it affected us till it was all gone!!!! just my

[MooseMom]

Otto went back in-center as his heart started to act u and he needed to be watched better. I was scared to death things would go down hill, BUT he is feeling better in-center (i know wierd). I have to say it's soooooo nice to not have all the stuff everywhere. I didn't relize how much it affected us till it was all gone!!!! just my

Oh, thanks for that!  I'm glad he is doing better and you both feel more at ease.

[boswife]

I too felt bad that my friend went back in center ~because~ he really wanted to stay home with it...He's very family centered, and he took the feelings of his family into consideration,(i felt they should have taken his as well but.... )  and felt he could handle what ever needed to be done. He's ok with in center as we had a really good group of techs and all.  My opnion is...Doing home D  truly is a huge undertaking and it should be explained more to that  instead of putting it like ......."oh, you go for 2 to 2 1/ hours a day and when ever you want,,,etc.. "  Yea, it is super! and i push it when ever i can, but!!  it is huge and you have really want it and be educated at the responsibility of it ALL,(the ordering of supplies etc..)  and not just the idea that you have this short time on the machine speal.  I can honestly say i LOVE nxStage, and hubby has stated that he wouldnt have it any other way, but for me, it was a big and fearful undertaking, and I thank the good Lord for holding me together and giving me the strength to get over my fears or i would have been one of those WIVES that said NO WAY NO HOW..lol  Im very thankful those first couple months are over     WHEW!!  was this a vent session for me???  im guessing so      So,,,,,,, back to  other stuff...   We also watched a man who was trained right before us come back to incenter within a week of being home! He was a brilliant man and had it down pat, but his wife was a no go!!!  Him i felt real bad for as well because just during training time, his health improved so much and he hated to have to go back to feeling awful because he didnt have support on his decission. 
And Lola, im with you on your decission!!  If things took a bad turn for us,  i would be right in that same spot.  I would hope i could continue to do his needles (yuck) and have a say in treatment.  Im glad otto is feeling better!!  And hope your getting some peace..

[lmunchkin]

Hubby just recently went In-Center for a little while cause (dummy here) slipped on some black ice end of Jan. and just recently able to weight bear. Neph. wanted him back in center wile I was on Narcotics for pain. I didnt want that for him, but he said he would and Neph told me "we dont want you sticking him somewhere else", she is so cool.  So Iam thankful that the center was there for him, but sooooo glad to be at home with him.
I dont have a problem with making our home a clinic like atmosphere.  If it helps him along better than so be it. Before Nxstage, he went to center and they put me aside and more or less, I was errelavant.  I must be honest here, I wanted to be a part of his care and resented the fact that they did not include me.  You see, he was on PD for 5 years and I did everything for him & loved it. Due to complications & In & Out of hospitals, he did in center Hemo for a bout 7 months and now thanks to Nxstage, we are home.
Im not judging, but I dont understand why loved one's wouldnt want the best for the one suffering through not only this disease but all diseases.  Im sorry, I just cant wrap my thoughts around that one.
But back to the subject that was asked. Yea he went back to center, unexpectedly, but is so glad to be back home.

[MooseMom]

Im not judging, but I dont understand why loved one's wouldnt want the best for the one suffering through not only this disease but all diseases.  Im sorry, I just cant wrap my thoughts around that one.

I confess that I'm thinking along the same lines.  When I spoke to my neph about NxStage, he told me that it gives good clinical results but warned me that it can be hard on the family.  He said that if you have a strong relationship, home hemo can strengthen it even more, but if there are problems in the marriage/relationship, home hemo will do nothing to help.

Your love for your husband is very evident.  He is so fortunate to have you.  You have such a profound love for him that is touching to witness.

[boswife]

I'll add this    ,,  the experience of 'learning' and 'doing' was/is beautiful for us in the relationship way. I feel very blessed that hubby feels for me as he does, and his confidence in me was a huge incentive to carry on   The hard part for "us" was,,, i have my own issues, (fear related), and You know fear blocks that part of your brain and believe me, it was tough to fight off each day.  But, now, i cant even believe that i made such a big deal out of it... (well, i didnt, the disorder did    )   I was derermined to do this for hubby though, and im so glad we made it.  I love the 'doing' of it, i just hate that it still gets to my heart/chest (as in pain from fear) some days, and that scares me thinking im going to have a heart attach and wont be able to help him at all...      Anyway, I know this isnt about me  again, but it's im sure a factor of why some go back incenter.

[MooseMom]

boswife, your wisdom continues to delight me.  You've hit upon an aspect in all of this that I had not thought about.  I can certainly understand how daunting it must be to be a caregiver who trains alongside the patient on dialysis.  But to know that your hubby TRUSTS your love and TRUSTS your intellect and ability...I hope you find great confidence in this.  I think you're a STAR!

[willowtreewren]

I found our time "together" during treatments was a good way to force ME to slow down a bit. I'm a type-A personality. LOL

But I had to give up a huge part of my life for the commitment of home hemo. In the past I traveled for business extensively and was the secretary/treasurer of an international organization. I gave that up. And I really missed it and the collegues I had from all over the world.

So, Carl DID go back in-center (with his NxStage machine) for a week while I traveled to Boston for one last meeting. He cannulated himself (a first) during that week, and once I was home again, we went on as usual.

Funny thing. After more than two years away from the hustle and bustle of that high profile life, I have NO DESIRE to resume those activities.

I can certainly understand that NxStage is NOT for everyone. But I was totally on board for Carl to get the very best treatment. I never considered allowing him to go back in-center permanently, even when the stress of never having free time was at its worst.

Aleta

[BillSharp]

While on in-center D, we trained for home hemo on NxStage and then did it at home for about 6 months. During that time I had 2 episods of very low BP (60/38) and it scared both of us a lot. We decided to go back to in-center where I could be watched over by techs and nurses. I've still had some low BP problems, but not quite so severe (90/50), and they handle it quickly. I feel better on in-center, too, better than on home D.

[lmunchkin]

At least you gave it a try, Bill. It is not for everyone because every ones situation is unique, but kuddos to you for trying! Not all Centers are bad either. They are there for a purpose!  I do hubby at home and am quite comfortable with it.  He occassionally has low b/p but if saline doesnt bring it up then I pull him off and end treatment or I will drop his UF down to -0- and just clean his blood of toxins.
What works best for you is best overall!!!!!!!