Worried about next week.

[willowtreewren]

I am my husband's NxStage partner and I have to travel out of state next week. I'll be gone for three days and he is going to take our cycler back to the center to be dialyzed there. We love our nurses, but we are both still worried. They just don't know his fistula the way I do.

This is the first time I will be away from him since we started this home hemo journey in August. Before then I used to travel frequently, but I willingly gave up that part of my job. I tried hard to find someone else to handle this trip, too, but it just wasn't in the works.

Have any of the rest of you gone back in-center with your cycler?

I realized tonight that my stress levels were going up and I finally put my finger on the problem.

Thanks,
Aleta

[swramsay]

I use the nxstage by myself from set-up to needles to clean up.
Is there any chance your husband can do it on his own? And perhaps have a friend or neighbor around when he dialyses?

[willowtreewren]

I wish he could, but he doesn't have button holes and has never stuck himself. I have been giving him extra instruction on what to watch for while the nurses are messing with him.

He was infiltrated a couple of times early on. I realize that part of that was that it was a "virgin" fistula, but it takes a great deal of effort to get into his access.

I know I'm just obsessing over not wanting that life-line compromised in any way. The good thing is that he is not going out on the regular floor, but into the NxStage home training area. And he'll have his own machine.

I'm hoping this whole process works well, without any problems, because it looks like I'll have to be traveling more frequently next year. Sigh.

[swramsay]

This might be a good incentive for him to learn to do his own needles huh? (I'm still doing sharp needles - soon to start buttonholes.)

One of the great things about home hemo is the freedom. I wanted to be free from dependence on other people's schedules whether it be the center or a helper. So far so good. If he is physically and mentally capable of learning how to do it himself, this problem may be a blessing in disguise.

[silverhead]

I would think he has been using the Fistula long enough to mature well, why not start establishing Buttonholes?, I'm sure you will find it will get much easier to do the sticks once they are working for you.......

[jbeany]

Tell him to ask for the best nurse or tech, and see if he can have the same one each time - less of a learning curve that way.  I had to switch from my nxstage back to in-center, and I've certainly missed having only my regular partner stick me - I'm sick of being black and blue!

[G-Ma]

Do you have close friends or family that could pop in for a couple of hours.  I taught my daughter in law to stick me for when I didn't feel good and she was so good at it that I just had to come in a few times because I just needed a break.  I'm sure someone would help you and he would not have to drag back and forth.  Just my 

[aharris2]

Have NxStage will Travel - can you take him with you?

[willowtreewren]

Thanks for all your comments.

Our center does not currently support button holes. 

My husband's sister does them, but she is in another state.

We do travel with our cycler. We have a little camper and just set up dialysis in that. We spent a week in Florida last month during Spring Break. It was fun, but by the end of the week, Carl was tired of sitting on the camper cushions for all those hours! LOL! We had considered doing something cross country when we have more time off in June, but after that week, we figure that shorter trips are more up our alley!

I tried to schedule this trip so we could drive, but the school I'm visiting was going to be closed at the time we could take the time to drive there and camp. 

My travel expenses are covered on these trips, but my husband's aren't. It would get pretty expensive for me to take him with me when I have to fly. Plus, since we work together, it would be hard for both of us to be gone when school is in session. I did take him with me when I had a speaking engagement in WV. It didn't cost any extra because we drove and they put us up in a motel. But a major incident happened at work while the two of us were gone! Made me pretty reluctant to do THAT again!

I like the idea of requesting a particular nurse.

Jbeany, I read about your move back in-center. That must have been so difficult after the freedom of NxStage. Too bad you aren't near us. I figure it wouldn't be much harder to do two folks at the same time than just one!
Aleta

[Adam_W]

Last summer I had an accident on my moped and broke my right wrist, which happens to be my stick'n hand. I went back in-centre so one of my nurses could stick me (my dad learned how to do everything EXCEPT sticking), and my nurse had the most difficult time getting my access to work! The next day I came in, I decided I would see if I could stick myself WITH THE CAST, and I succeeded! So for the next several weeks, my dad would set my machine up, I would stick myself, even though it was extremely awkward, and my dad would hook me up and take care of everything else except the machine monitoring and the occasional alarm. I hope everything works ok when he's in-centre. Oh, and I have a graft, so I did all that with sharp needles, and no buttonholes.

Adam

[swramsay]

Hi Aleta,
I was a little confused by your situation so I went back and read your posts to get a better picture. According to you, your husband is "as healthy as they come" and continues to work full-time. I'm not sure why there is such a big dependency on the degree that you help him. It sounds like you are putting all the effort in to his care. With your own life full of 2 businesses, your home and the dependency with your husband's dialysis, you must be exhausted. Maybe I'm different but I know there are many self reliant home-dialyzers who manage very well on their own. My husband is in the house somewhere but he doesn't help me at all. I set up the machine, put my tourniquet on, do my own needles, give myself meds, address alarms, do my rinseback, take my needles out, take down the treatment, clean up .... I make my own batches or hang my own bags, fax my flow sheets, order supplies from nxstage, and draw my own labs. The first few days, I'd yell for him when I got alarms. When he was out of town for a few days, my 10-year-old son was 'in the house'. He could have helped if I needed him.

I think you and your husband might seriously look at transferring his dependency off of you and back to himself. The more responsibility he takes in his own care (and the less involved you are), the better off you both will be. He doesn't need all the help you are giving him.

[monrein]

With all respect Aleta, I agree with swramsay.  The best consistency for the fistula will come from your husband doing his own needles and especially given your need to travel and thus be away at times.  It can be daunting, intimidating etc for patients to contemplate such a thing but once on that path few would ever consider handing back the control to anyone.  I found tremendous satisfaction and confidence in being able to assume the lion's share of the responsibility for my own treatments and felt really good about releasing my husband from the burden of my dependency, despite the fact that he was willing to take it on.  Buttonholes are generally easy to establish once a person has mastered the business of sticking oneself and the sensation of pain was enormously reduced for me by doing my own cannulating.

Best of luck to you both.  This isn't EASY, but it is very possible and the rewards are huge for everyone involved.   

[willowtreewren]

Thanks, guys.
We talked about his learning to stick himself last night. While he's not too keen on it, he may be willing to learn.

I do need to clarify something, though. We work together. Although I am the main huncho of the two businesses I run (one is a private school and one is a teacher training organization), my husband is deeply involved in both. I simply could not do the work I do without his unfailing support. Please don't get the idea that he has dumped his care on me or relinquished control. The only thing he doesn't do is stick himself and pull the needles out at the end. I was the one who really pushed for NxStage because I knew that he would be healthier. Although reluctant, he is willing to do in-center for treatments in order not to be a burden on me. I am the one who simply cannot bear the thought!

Until dialysis we were both working 10+ hours a day six days a week. At the beginning, we tried to manage that and add the treatments to the end of the day, but that just didn't work. We both had a severe lapse in stamina! LOL! We have a very supportive staff, though, and we now either cut our day in half in order to go home and dialyze, then come back to finish out the late hours or leave earlier and just stay at home for the evening. So, in many respects, having the "responsibility" of being my husband's dialysis partner has made it possible for me to slow down a bit. We do tend to work on administrative duties during that "down" time, so it means a slower schedule instead of an insane one. 

My husband is healthy except for this kidney thing. His labs are always great. At the center they call him Mr. Perfect. Until recently he took only his Renalvite, and Zantac.  He has had to add Sensipar, though. We still hope for a transplant, either from a friend or from me, if I can bring my CC up just a bit.

We both renewed research on on the pros and cons of buttonholes over laddering last night. I'll keep you posted. Except for his fistula being tough, it is really great - long straight runs with only one kink between the arterial and venous sections.  I can move up for two weeks before starting at the bottom again. I can foresee that even if we are able to switch to buttonholes, I will probably still do the sticking. We are a really good team.

Who knows! I may get him to join this forum, too. He isn't as "attached" to the on-line community as I am, but I DID convince him to join Facebook this weekend!

Aleta

[swramsay]

Thanks, guys.
We talked about his learning to stick himself last night. While he's not too keen on it, he may be willing to learn.

The only thing he doesn't do is stick himself and pull the needles out at the end. I was the one who really pushed for NxStage because I knew that he would be healthier. Although reluctant, he is willing to do in-center for treatments in order not to be a burden on me. I am the one who simply cannot bear the thought!

Once he begins doing his own needles, he (and you) will wonder why he wasn't doing them sooner. If that is the only thing he doesn't do then it's a easy step to take for a great relief for both of you. He will not have to go back in-center in order to not 'burden' you. You will be free from dependency, guilt and worry. As long as he needs you to do his needles, there will always be the stress every time you can't be there. You said he may be willing to learn to do his own needles then you finished by saying "I can foresee that even if we are able to switch to buttonholes, I will probably still do the sticking." As a mother bird does who loves her offspring, maybe you can push him out of the nest. He will be able to fly on his own, you'll see.

[willowtreewren]

I believe you are right. If nothing else, I still need the freedom to travel for my job. His being able to take care of his own needles would provide that freedom. There are plenty of folks who would be able to come in to "be around" for any emergencies.

You all have given me the support I needed to move forward with this.

Thanks! 

Aleta

[monrein]

A good dialysis partnership is a beautiful thing and since you have found the balance in business I'm sure you'll find it in this arena also.  We're always here for BOTH of you.

[kellyt]

I hope you two get it worked out.  It would be great if he could learn to do it himself, at least just for times like this.  Way to go!  And what great advice your received from everyone!   

[willowtreewren]

Thanks, everybody!

Your support and advice has been wonderful. I leave on my trip as soon as we finish my husband's treatment this afternoon.

We talked about next year and how I'll need to travel more. Carl thought I was just tired of doing his sticks (I'm not), and he understands that doing it himself might be far easier than having to lug the machine back to the center! We'll see how he feels about it after my being gone a few days. 

Of course we are pretty used to lugging the machine camping with us, so it may not seem like all that big a deal to him.

Anyway, I sure do love all you folks here. 

Aleta

[petey]

I just saw this thread, and I feel the urge to chime in.  I hope I don't upset anyone with my words and thoughts.

My husband Marvin also is on home hemo (NxStage); this coming July, it will be two years that he has been "at home" (in-center from 1995-2000, transplant from 2000-2003, and back to in-center from 2003 - July 2007).  Marvin handles a lot of his home treatments/NxStage/PureFlow activities (although I do know how to do everything, too), but I am the one who cannulates his fistula.  Marvin has never even LOOKED when the needles went in (not even when he was in-center, with a nurse or tech cannulating his graft or fistula).

When we pursued the option of home hemo, we went into it as a team.  I went through every minute of every day of training with him.  He never asked me to go with him, and I never asked him if he wanted me to.  I guess we both just assumed that I'd be there beside him all the way, and I was.  He would have done the same for me.

Marvin is not comfortable with self-cannulation; on the other hand, I don't have any issues with cannulating him.  So, why shouldn't I be the one to stick his fistula?  Being at home doing hemodialysis, to us, isn't all about MARVIN doing everything; it's a shared responsibility.

Here's how we work it: When it's time for a treatment (we both decide what time each day is most convenient for both of us), Marvin goes to the machine.  He gets the cartridge in and priming, takes his bps, takes his temp, starts his flow sheet, etc.  I am getting his "on" supplies (gauze, tape, needles, alcohol wipes, etc.) ready and on the table beside his chair.  As we're both working to get things ready, we're also talking -- about our day, our thoughts, what we had for supper (or what we're going to have if it's an early treatment), what we're going to do tomorrow, etc.  It's just another time for us to be together and to share our thoughts and daily activities.  (Now, I can do all the machine stuff, and Marvin can do all the supply stuff -- it just worked out that these are the "daily dialysis chores" we assumed.)  Marvin handles all ordering of supplies, all faxing of flow sheets, all bagging of the trash, etc.  I file all paperwork (copies of flow sheets for us to keep, lab paperwork, packing slips, etc.) in notebooks in his "clinic" (spare bedroom) because I'm the more "organized" one.  We share the duties of cleaning his clinic.  He sweeps the room; I mop.  I wipe down the chair, the table, the counter tops, the sink; he puts new trash bags in the can, keeps his "toys" (laptop, tv remote, etc.) in their proper place.  He flushes the waste line when it needs flushing, and I check for chloromines (he's color blind).  From the first day, it just worked out as a very synchronized system of sharing the tasks of performing his treatments.

I could never look at Marvin and say, "This is YOUR disease, your treatment, your responsibility.  You do it by yourself."  Just like everything else in our lives, we share and share alike.  While ESRD has not attacked my body, it has affected my life.  This disease -- and its subsequent treatment -- is in Marvin's body, but it "belongs" to both of us.

I think it's all in your perspective.  Neither Marvin nor I sees my involvement in his home hemo treatments as his being "dependent" on me.  We just see it as something WE do together.  He is "dependent" on me for other things in our lives, just as I am dependent on him (these are emotional issues here -- not physical); dialysis is not one of those things.  Could he do his home treatments without me?  I guess if he had to, he could.  But, he doesn't have to.  I personally find great satisfaction in the fact that I'm helping him deal with this all, and he seems to be quite satisfied with our set-up, too.

Push him out of the nest like a mother bird does her offspring?  No way!  I'm not his mother!  I'm his partner, and there's a difference.  If we were birds, we'd be flying together; sometimes, I would fly the "point" (lead) position to take the most wind, and sometimes he would (depending on who was stronger, had more energy, etc. at any given moment in our "flight").  If the wind wasn't too bad, we'd probably fly side-by-side.  If one of us couldn't hold out any more, we'd BOTH fly down and rest until we could BOTH travel onward.  As his wife, I'm not responsible for raising him to be a big bird; I'm responsible for flying along with him on this journey (at least that's what I promised when I married him).

Marvin had to go back in-center for a couple of months last year when he had MRSA and needed IV antibiotics (NxStage machine can't do that YET).  I took off work and went with him so I could cannulate him there, too.  Of course, my job (high school teacher) doesn't require that I travel, so that makes it possible for me to be there with Marvin whenever he needs me.

Don't think that I haven't thought "what if..." where Marvin's treatments are concerned.  What if I break my arm?  What if I get sick and have to go to the hospital?  What if I get a severe eye infection and can't see too well?  We have an emergency back-up plan in place (Marvin's first dialysis nurse from 14 years ago is now a regional supervisor over four counties of dialysis clinics, and she's his "back-up sticker").  If we had no other choice, Marvin could go back to in-center temporarily.  Thank goodness, we haven't had to cross that bridge yet, and, hopefully, we will never have to.

The way we handle the load works for us, but I realize that may not work for everyone else.  Call Marvin "dependent" on me if you like.  We don't see it that way.  We see it as sharing the load, and we're both very, very comfortable with it like we do it.

[swramsay]

Petey,
What an absolutely beautiful relationship you have with your spouse. Thank you for sharing that.
Mine is not at all like yours. As a matter of fact, "This is MY disease, my treatment, my responsibility.  Do it by yourself is my husband's motto."  My husband is very content knowing nothing about it. Survival mode tells me not to share. Tonight is a good example of his contribution. For some reason, I have had RED 11 alarms at the tail end of my treatments a couple of times and I cannot recover forcing me to do manual rinsebacks. My husband had just gone to bed a few minutes before so I was hoping he wasn't asleep yet. I called several times. Finally he came out of the bedroom and stood yelling at me..."what's the problem? I was just here 5 minutes ago (to say goodnight). Why is it doing this??? I spent more time and energy telling him I need to do a manual rinseback and I don't know 'why' it alarmed but I just need to deal with this situation. Well...he didn't do anything other than stand there yelling. He was still yelling when I finished the rinseback and I needed to ask him to stop yelling because i am still not finished dealing with the situation. It is very painful for me to know that he won't be a part of my life like you are for Marvin. I don't ask. I also have fought bladder cancer for years that caused many major surgeries and a year of aggressive chemo. Dealing with the emotional pain facing the possibility of death and leaving my precious young son is almost unbearable. That too, was never discussed. In his mind, he's sick of it 'all' although I know he doesn't have a clue what it 'all' is or was. He was never there for 90% of it. I saw couples together all the time when I was at chemo. That was a bitter sweet reality I knew I would never experience with my husband.  I don't ask him. I haven't asked for his support for years. He simply doesn't have it to give. Yes, it feels like he doesn't love me. But I just deal with it. I am a person who has learned to deal with things in life solo. However, my heart aches with longing to have a marriage where my spouse would at least want to help. Emotional support or help in times of urgency or crisis are nonexistent with my husband. As much as I crave that, it's not available. He's simply not wired that way. Your relationship and the support you have for one another is precious. I know you don't take that for granted.

I wasn't trying to give marriage/relationship advice previously. I was attempting to give my suggestion on a way to relieve her expressed stress and concern when she's not there - which will be pretty often.

I apologize for this personal spew.

[paris]

Dear Willowtreewren,  You and your husband seem to be working through this very well.  And you seem to be a marvelous team.        Many have given good advice.  You two will figure this out and make it work for you.  Every situation is different.  Some want control of doing the needles, others like help.  And it sounds like you are both highly educated and capable of success in all your adventures.  I don't think you husband sounds "dependant" ,  just half of a couple.   Keep us updated.   And I always enjoy your posts   


And swarmsay,  Men have different ways of handling sickness.  I think it is very different when the wife/mother is the patient.  We have always done everything and life isn't the same anymore.  It is hard to be the person we use to be.  My husband is a wonderful man and we have been together a lifetime.  But, he can't handle sickness.  He couldn't take the kids to the doctors, etc because he couldn't see them in pain.  He had a very hard time seeing his sister the week before she died.  He can't stand to see someone in pain or bleeding.  Do  think he could ever "stick me"--- nope, not going to happen.  He loves me and wants things to just be better.  So, I come here and vent!  Sending you love and hugs        We are here for you.

[petey]

I didn't mean to offend.  I realize that Marvin and I have a very special relationship (it was this way before ESRD and dialysis); I see a lot of my friends who don't have the type of martial relationship that Marvin and I do.  And, yes, I treasure it -- and Marvin -- very much.

And, Paris is right.  Different people handle sickness/doctors/dialysis different ways.  From what I read that willowtreewren wrote, I think her relationship may be similar to mine and Marvin's.  She and her husband seem like partners in other parts of their lives, too.  I just wanted her to know that it's okay to have / to be a very active, involved dialysis partner, too.

[monrein]

For me, this actually has nothing really to do with marital or any other type of relationship.  Relationships are each unique and differ enormously one from the other without them having to be better or worse.  Different styles suit different couples.

In this case, my understanding of the issue was that the dialysis partner needed to travel and thus be away and not there to do the sticking.  So there was discussion of the patient possibly having to return to center during these times.  Learning to do their own needles was suggested as a solution to this dilemma and nothing more.  There was also some talk about the center in question not supporting buttonholes and if this becomes the option of choice for the patient, self-sticking is also a good idea.  This is a matter of logistics and not of love.

In the world there are many types of intimate relationships.  What some find supportive and caring, others would find suffocating and insufferable.  On a personal note, there is much that my husband would do and has done for me and vice versa but I like doing my own needles (and bathing myself too although I'll accept assistance in this area sometimes when I'm feeling particularly friendly).  I have however no judgments whatsoever if other couples choose to perform any number of intimate tasks for each other, simply because they want to do so.

[petey]

For me, this actually has nothing really to do with marital or any other type of relationship. 

...but, I think the advice/comments given on this particular situation had everything to do with a relationship -- more specifically the relationship between a dialysis patient and his/her dialysis partner as it relates to dialysis treatments/care.  Several of the comments suggested that the best thing for willowtreewren to do was to MAKE her husband learn to self-cannulate so he would be less dependent on her.  I think that's not always the best thing for any given patient and for any given partner.  If a patient and partner want the partner to be very involved in the patient's care, I think that's okay.  In fact, I wouldn't have it any other way with my situation.  Dialysis is tough enough as it is; I cannot fathom how much more difficult it would be for Marvin if I weren't there to help him.

I'm not saying that I love Marvin more (and hence have a better marital relationship with him) because I'm more involved in his care than other dialysis partners.  I'm just saying that dialysis doesn't have to be a "patient only" experience.

I am sure that there are those who would find my extreme involvement in Marvin's care "suffocating and insufferable."  We, however, do not see it that way.

[monrein]

And Petey I'm not disagreeing with you in any way.  However, if Willowtreewren has to be gone on business she can't do her husband's needles, is that not the only issue here?  I'm certainly NOT suggesting that there's anything remotely wrong in how you and Marvin conduct things.  I also was not saying that your involvement with Marvin's care was anything at all.  I thought the question was specific to a completely different situation, not to yours and Marvin's, and therefore what works perfectly for you might not be possible in this other situation.  Please don't take offense at this discussion and I see no reason at all why anyone would take offense at what you wrote either.