New and Nervous Caretaker

[kimberlyn50]

He Everyone, well, I been reading here for weeks and weeks, and here I am.  My boyfriend started Dialysis this past September, and our experiences at the Center has been less than pleasurable.  We recently finished NxStage Training, and were to embark on our own at home this past Mon.  Rising above the nerves we both had were a feat in itself.  While in training, I performed his cannulation perfectly, he has a Fistula.  Never missed....as soon as we got home, missed everytime.   Then, we had an infiltrate.  This has pushed our nerves over the edge, I figure its normal to have some jitters, but this one is tough.  The other thing is I work fulltime days, come home, get the machine priming, eat a (fast) supper, then snap n tap the darn lines (takes forever), get him on the machine, finish by 10 o'clock pm, off to bed..just to start over.  We had no idea the time it would comsume.  As my boyfriend said, we had more free time at the Clinic.....we have this weekend do make a decision which way to go....I could use some advice.....boy its so tough........looking forward to meeting some new friends on here........thanks for listening lol

[MooseMom]

I'm really glad you've joined us and have shared your story with us.  It will sound very familiar to many IHD members.  I am the one who will be needing dialysis soon, and it will be my husband who will train using NxStage with me, and the situation you describe is exactly the thing I fear, that it will be all too overwhelming and time consuming.  My husband, like you, works full time, and I can just picture him coming home after a particularly demanding day at work only to have another job ahead of him, ie helping me with dialysis.

Several members are at the stage you are at now, so I am hoping they will come along and post here. 

Like most things, home hemo is probably hard at first but then becomes second nature once you've done it long enough.  At least that's what I am hoping.  The trainers at the clinic wouldn't have allowed you and your bf to come home to perform home hemo if they thought you incompetent, so that is not really an issue.  The whole thing is new to you and probably takes over your whole life right now.

Do you think that maybe he could talk to his clinic/neph about doing nocturnal on NxStage?  NxStage has not yet been approved by the FDA for nocturnal use, but patients do it anyway.  A few on IHD do exactly this and perhaps could chime in.

It's a trade off.  In clinic dialysis is much easier on the caretaker; sure, YOU would have more free time.  But there is a good chance that you'd have a sicker boyfriend, so your free time might be spent watching him recover/sleep.  For the majority of patients who are capable of doing NxStage, the clinical results from that modality is superior to those on thrice weekly inclinic dialysis...that's the bottom line.

May I ask why this weekend is your "deadline"?  Do you really have to make a decision so quickly?  It's been just a week.  Can you give yourselves more time to fall into a rhythm?

[willowtreewren]

Hi, Kimberlyn.

My husband and I have been doing NxStage for 2 1/2 years. Yes, it does take up time. We both work a very demanding 50 hour week, so when we come home after that long 10 hour day we don't even sit down for any relaxation. We get the machine primed and the supplies ready. I have learned to get everything laid out the night before while he is holding his sites. As soon as that is ready I start dinner. I plan only dinners that can "simmer" while I am putting him on the machine. Then once he is up and running, he eats on the machine (one handed, so I cut his meat if necessary), while I eat nearby. Once he is off in the evening we go to bed in order to be up again early the next morning for work.

Is it tough? Yes. Would I love for him to get a transplant? yes.

So what is the pay-off? He is just as healthy as can be and his labs are perfect. He can eat whatever he wants. We can pack up our machine and travel when we want to.  We are in control of his health care and in control of our lives. We can change days off whenever we need to.

Life on dialysis is going to have its short-comings, but the main thing is....it is LIFE!

Aleta

[looneytunes]

Hi Kimberlyn and welcome to IHD!  Glad you found us.      I don't blame you for feeling a little overwhelmed at this point.  It sounds like you have been through quite a bit in just a short time. 

I also am caregiver to my hubby who currently is on NxStage (since April 2010).  We have been through everything you are describing including a failed fistula which was replaced with a graft in November.   It does take some time to get used to the routine as WTW described above.  Like her, I set up the machine and do the priming while dinner is simmering.  We have a Rubbermaid 4 drawer unit on wheels with a weeks worth of supplies in it that sits next to the machine so everything is very handy.  After he is hooked up, he eats in the chair and I join him with my plate.  After dinner and clean up, I do other things like laundry, bookwork, work-out, or just relax until he is unhooked (he runs 4 hours 6 x per week) and then I tear down the machine, get it ready for the next day and we are off to bed shortly thereafter.   I monitor the supplies for ordering and delivery dates, we store it all in our garage (which is heated and cooled).  We did install hard plumbing in the corner of our bedroom where our little "clinic" is. 

The time investment is something only you can determine if it is worth it.  In our case, Hubby feels SO much better than when he was doing hemo in-center 3 x a week that we have opted to incorporate NxStage into our daily lives. 

The clinic was always calling to change his time based on their patient load for that day so the clinic days were lost days entirely.  He often came off feeling weak and disoriented so I had to be with him as a driver.  Then, he might sleep the rest of that day and a good part of the next day.  His labs were never great and on his BEST days, he had little to no energy.  That changed when he started NxStage.  His labs are great and he has more good days now than he has in over 3 years.  Plus, we like to be free to travel and the NxStage is portable so we have been able to go when and where we want. 

So, bottom line is that you all will have to decide what is best for you.   You've come to a good place to learn about the lives of others who are using the system as well as those who have opted for a different treatment modality.   I hope to see you posting on the boards and look forward to getting to know you. 

[boswife]

Aww Kim, didnt i tell ya these ladies would have some great advice for you    It's a great place you've found! 

[Rerun]

Hi Kim I'm so glad you joined.  I did home dialysis a long time ago and my house turned into a hospital and I didn't like that.  So, I go to the clinic and bitch about the way they do things.  Sometimes there just isn't a right answer.

Looking forward to your posts.

Rerun, Moderator           

[Bruno]

Hi Kim and best wishes. About the only thing I can help you with is to let you know it's quite normal to mess everything up once you go home even if you were doing it perfectly whilst training. My nurse support tells me all her home hemo patients have problems for the first month so they make sure they get special attention over that time. Something to do with the change in environment. I know I was absolutely desperate the first 2 weeks and then suddenly it all clicked into place.

[Poppylicious]

  Kim!

I think Rerun completely hit the nail on the head; sometimes there isn't a right answer.  You and your boyfriend have to choose the treatment that works best for both of you and the lives you lead.  I think that you need to give home haemo a few weeks and then make a decision based on that; a week isn't long enough to get into a routine or get settled or try to iron out all the little niggles. 

My Blokey is the one on dialysis.  He's on haemoD for four hours three times a week. He tried PD but that didn't work, and to be honest I found it took over my house and my life (and yes, I realise that comes across as very selfish) so a little part of me was relieved (but not glad) when he had to go back to haemoD.  He has said that he won't even try home haemo and I know he's basing that decision on the effect it would have on me and I love him so much for that (even if it makes me feel bad).  Okay, so he has to strictly limit his fluid intake, but he doesn't really have to watch what he eats (maybe he's just lucky).  Also, going away is a hassle, but we can get away at weekends without having to worry about taking anything other than medication with us.  For four days a week he isn't a dialysis patient.  He is tired a lot, but he does work full-time and on dialysis nights he doesn't get home till gone eleven. It's swings and roundabouts really and you have to weight it up and decide what works best to fit around your own lives.

I truly hope that this works for you both (if you want it to.)

*huggles*