How much of ESRD do you share with your spouse?

[MooseMom]

Riverwhispering, I agree with Cariad...yes, do move if at all possible.  You are right...don't fight this thing alone if you don't have to.  Just being around people who care about you, even if they don't profoundly understand this disease, is a plus. 

And you are right...share the important stuff and keep the little stuff to myself.  I think I sometimes blow things up so out of proportion that everything takes on monumental importance when perhaps it doesn't warrant so much of my attention.  And at least for me, that constant, underlying anxiety becomes so much a part of my daily living that I don't even know it is there until I realize that my neck hurts because my shoulders have been hunched all day, a physical manifestation of stress.  When the nurse calls and tells me my potassium came back high, is that important or not?  (I guess it is if she called me about it!)

Jean, if my husband EVER said that I had a "little" kidney problem, the local police would have a murder investigation on their hands.   And I do SO understand the feeling of not knowing what will happen next, or when, or how, or why, and this makes it very hard to prepare yourself.  Being in a constant state of "readiness" is very tiring. 

[Riverwhispering]

Just want to say I love you guys, my IHD family xoxoxox

[Cordelia]

I've been pretty open with my husband. He's my live donor so I feel that I must. Maybe I would feel differently if he wasn't being tested to be a live donor for me.

I must say though, I have to watch what I say to extended family to my inlaws. They prey on every "little" thing and before I know it, I'm the center of talk amongst the family.  I used to be an open book with everyone.  From much experience over the 1.5 years I've been on dialysis I can honestly say, I have learned to limit what I say about my disease to extended family now.   It only takes ONE person to blow things out of proportion and it can cause so many problems (hard feelings) so I only say what I really feel is necessary with this side of the family now.     

MM, there is no right and no wrong. You just find your own way to cope and there is nothing wrong with that.

[Desert Dancer]

Jean, if my husband EVER said that I had a "little" kidney problem, the local police would have a murder investigation on their hands. :rofl

I can top that! My ex-husband's family refused to let my daughter get tested because, "There's nothing wrong with her (me). She just says she has kidney disease to get attention."

I guess they probably believe it to this day.

[CebuShan]

Riverwhispering: I am so sorry!        Remember, you are not alone!   

[MooseMom]

My ex-husband's family refused to let my daughter get tested because, "There's nothing wrong with her (me). She just says she has kidney disease to get attention."

I guess they probably believe it to this day.

How absurd is that!  Glad they're your ex-family.

[needlephobic]

Well with my family they really don't care.  3 yrs ago after I was in the hospital when i was first told I had kidney disease had 3 different surgeries been out for about 4 days when my control freak brother got mad and threw me into a wall. My mom threaten to kick me out over that. Then both parents died my greedy bro and sister sold my parent's house and kicked me out to defend on my own. so I really don't talk to them except for my sister every now and then. But basically I am on my own no support except here and a activity center I go to 

[Poppylicious]

Blokey tells me lots.  I don't know if he tells me everything, but he is open about how he feels and what his results are, and usually has to ask me if I can remember when his appointments are!  I will be honest though, sometimes I don't like him telling me bad stuff because it makes me want to cry and I feel that I have to be the really strong one with the positive attitude so crying isn't an option.  As an anxious worrier I do like to stick my head in the sand and Blokey telling me things makes that quite hard too!  And I do ask loads of questions!  If I could go to every Neph. appointment with him, I would ... just on the offchance of seeing the very lovely and delectable doctor.  Yum. 

However, I DO have a tendancy to then offload everything (well, not everything but some stuff) to my Mummy and that helps because she is very much the voice of reason and always reassures me. It's important that I let Blokey get things out, but also important that I then have the opportunity to do the same. 

Today Blokey had his transplant clinic and I spent the whole day constantly checking my phone for a miserable text message.  I came home feeling quite happy because no miserable text message generally means everything went well.  My happiness was short lived because he'd sent me a very long, very detailed email instead ... that's okay though; I know it helps him to actually say/write what's on his mind and I'm just grateful that I'm here to go through this with him.

*huggles* MM. 

(and *huggles* for everyone else who needs them!)

[malaka]

Let me share my recent experience.  Under nephro treatment for about 3 years, kept slowly getting worse.  And, I had nephrotic syndrome which meant I was blowing up like a balloon, short of breath, weak, etc.  My wife wasn't really involved in care, since care was pills, doctor visits, some dietary restrictions. 

A month ago, I started in-center hemodialysis.  That hasn't really affected my wife, either, since all treatment (except dietary restrictions) are at the center.  And that's the advantage of in-center dialysis, I think.

I do plan home dialysis to start with training as soon as our new house is built. (Long story, but I can't see moving that mountain of equipment twice and where we're living now is an older house that really needs refurbishing).  Things may change then, of course, but right now there simply is no discernable change for my wife.  Dialysis is not "in her face" daily, so the reality of it is mine alone.

It may be that to keep this semblance of normal life, I'll stick with a center for dialysis.  Given the facts of dialysis at my age and with my diabetes, I'd rather not screw up the time we have together.

[kitkatz]

If it were not for my husband and his just standing there in my life and loving me, I would not have made it up to now!  He supports me.

People who know us see that we support each other.  I think a lot changed when Victor had his accident almost six years ago.  He saw the world of medical professionals and has to deal with them regularly now with his amputated leg.  We are supportive of each other and I think that matters most. 

For the first ten years of dialysis I drove my self to and from dialysis. Now he is retired he takes me to and from.  I am spoiled now, I guess.

 He really did not see much of the entire thing the first ten years of dialysis I did. I pretty much took it on myself to do it.. One day I had surgery and was recovering from infections and he was let in the dialysis area of the hospital.  It was a real eye opener for him!

He asks me questions after dialysis every night.  " How'd it go?"  Some nights I want to whack him with my pillow.  "It sucked as usual!"   I say sometimes.  But mostly I realize he is saying "I care" with his question and I do answer him nicely.

SO to answer your dilemma, tell hubby what you want to tell him.  But a partner will want to know what is going on.

[Riverwhispering]

I got a call from my son yesterday, he and his wife really want to buy a home instead of renting and they wanted to know how I would feel if they got one with a Mother-in-Law cottage with it.   They would love for me to be close to them so if I need them we would be close and I'd get to babysit my grandson and be part of his daily life.  How perfect is that?   

If they can't find one we together can afford then a small cabin not far from them would be fine with me.   Hoping all works out either way.

[boswife]

Oh River, this warmed my heart.  Something IS going to be good for you and it will be what is right for all.  We built a 'cottage' behind our house for family that needs it.  My mom lived there for a year, our son came home from military and lived there a couple of years, and now our daughter and son in law are living back there and all have been blessings and blessed for doing so .. I think this is a beautiful option for you.

And for this thread,,,, while reading it it is all so familiar and so many of us are so alike in this delima it seems.  Even though im on the 'other' side of it, and hubby is the one on D, i sometimes forget that and actually worry when i hear myself say things like..'my blood tests yesterday were...' or 'when I went to the dr yesterday' when i am talking about HIS blood tests and apts.  For us it works that i take on this responsibility as he really needs me too, but i have all of the worries and fears of being the one ON D, just as before, i had the worries of 'pre' D.  Its my nature (as yours MM) to analyze and pic apart everythig to the far ends of the earth and then some.  And dig to the depths.  Problem is, i have all that that i take on because its the way i am, that I feel so desperatly week when i look at him at times and worry that he's fading on me anyway and then wish i could just let steam off of him, but ..... oh geesh,,, im sounding like the snowball rolling down the hill.  ANyway, im guessing im just thinking that it needs to be shared if both are willing to share, and watch out for eachothers well being as best as you and they are 'able' ...  Sending love to all, and strength, courage, understanding, peace, comfort and          (wondering if this is one of my... let it all out posts..lol)

[CebuShan]

My husband shocked me today by asking to stay with me tomorrow while they stick me! We'll see how he does when he actually sees the size of the needles+

[MooseMom]

River, how wonderful for you, and how thoughtful of your son and his wife!

CebuShan, he'd better not faint!  Why do you think he asked if he could stay with you?  Very interesting!

[tbarrett2533]

If my BF asks I tell him.....

I must say I started dialysis in September 2010 and met him in December of 2010 so he is almost as much of a pro at this as I am and is the ONLY person who has been there and seen it, done it, with me which is nice 
I think that this has got to be hard on him as well... but I made sure when I met him that he knew what he was going to be getting himself into and he "signed" up anyway.  I also have told him that if it ever gets to the point where its to much for him than he needs to let me know so we can talk and we can go our separate ways (he assured me that this would not happen) and we are not married and do not have any children either so its a little different for me 
but I like the support I get from him I mean how many other People can I call up (just like I did today when I was having some drain probelms) and said, "What do you think I should do fill with a 1.5 or a 2.5 and fill with 1500ml or the whole 2000ml and just hope that I absorbed the entire 1.5 from last night that I could not get out?" and he actually knew what I was talking about....
He knows what a clamp is, a frangible, transfer set, the difference between yellow, red, and green solution, knows what a dwell, drain, exchange is................... so my point is........... talk to your spouse about what he wants to know............. if he asks tell him, if he seems interested, tell him, if hes concerned let him know that everyting is going to be OK, if he does not want to know then don't tell him, if you don't want him to know then don't tell him and most important if you feel like he does not want to know or does not seem interested then he is prolly not so maybe keep that to yourself this is just my 
good luck

[CebuShan]

Well, my husband did stay to watch then stick me today. He didn't faint but he did look a bit green especially after they had trouble getting my venus and had to move the needle around! Not sure he will EVER ask another question about dialysis! Lol!

[Gerald Lively]

River – I am stunned. I have no sage words that can soothe.

Moosie-Mom-Babe; My wife and I have been married for 36 years.  Before that we lived in lust (Lust = Indoor athletics).  This marriage endures because we long ago agreed that I will take care of her if she will take care of me.

When the blood toxins knocked me out last July, she hauled me to the hospital. She handled the paper work while I lay around and moaned. She spent nights with me in the hospital.  I would wake up now and then and pinch her boob. 

When it turned out that I also had cancer, it was just another health issue added to a long list of things I already have.  There is no way I could have survived alone.  She plays checkers with me at the dialysis center.  She puts movies on her tablet for me to watch during dialysis. She packs my gear for each and every session.  She drives me to and from dialysis (30+ miles/60 round trip).  Right now she is in her sewing room making a quilt I designed.  I hired a housekeeper to ease her load.  I handle the various issues with our domestic water supply (drought is here).  A wind storm blew a few shingles off the pumphouse and I got up there and made the repairs.  I maintain a 1,000 foot road to the house (iddy-biddy tractor).  I landscaped the place just as I was coming down with renal failure and we do it all because we are in love.

gerald

[cassandra]

Glad to hear he didn't faint CebuShan. and Riverwhispering I am really, really relieved to hear about your son's proposition.

I share most HD things with my hubby, and he shares most work-things with me (I think) I realize, and always have that I am really lucky with him, and would probably be dead ages ago without him. He still wants me to start home-hemo, but I think its better to keep the whole physical D thing, outside the house. But than I read some more about Nxstage. As I can't D in the Netherlands at the moment because they have a different policy (not using separate machines for Hep A,B,C and HIV patients as they do in my clinic) I can't visit my mum and dad (and friends)for longer than 3 days (I skip 1 session, and eat/drink the absolute minimum) But my body won't be able to do that much longer I don't think.

Is this the place to ask if someone in the North West of England knows of any development in the availability of Nxstage machines?   

Strength and good luck to all, Cas