What has dialysis taken from you?

[KatieV]

I'm in Vermont, USA, a couple hours north of Mass.  I started out with 4 hour treatments 5 days a week on the NxStage.  Then I researched Nocturnal and believed it was the best way to do dialysis (as well get my evenings back).  After months of my center hemming and hawing, they finally told me no for liablity reasons.  I called up a center in NY that week and arranged to switch to them.  It is a 2.5 hour drive one way once a month (or more if I have problems), but it is SO WORTH IT!

I am still using NxStage and aim for 6 days a week at 8 hrs a session.  So I get 48 hours a week with 1098 blood liters processed.  I do know many centers (like my old one) will not let you do Nocturnal, which is a shame.  I have found it to be the best method of dialysis.

[ianch]

That's a fantastic result and actually twice as good in terms of filtering as my plan.  I say well done!!!!

I have gone for the 1 on 1 off as i really like the break.  My job uses a lot of mental energy and I'm not as productive directly post dialysis.

I didn't know NextStage could do more than 4 hours, at least not the machines promoted in Australia.  There is no independent NZ sales rep.

[Icare]

KatieV
I'm originally from Plattsburgh N.Y., don't miss the winters . Hope they get you set up on your own schedule.

[hillary]

 

I'm a total beach bum.  We belong to a beach club near Coney Island, near where we live, and when we go on vacation, we go to a beach cottage on Cape Cod. I had to start dialysis on July 4th of this year.  I have a chest catheter because for me, a fistula or graft is not an option.  So that means no swimming or bathing.  That broke my heart more than any of the other crap that we all have to deal with.  We never went to the beach club this summer and we cancelled our vacation to the Cape.   I can learn to deal with it, but I feel extreme guilt because I've taken these things away from my wife as well and she doesn't deserve that.

[NDXUFan]

Listening to idiots and hypocrites for years.

[NDXUFan]

I'm in Vermont, USA, a couple hours north of Mass.  I started out with 4 hour treatments 5 days a week on the NxStage.  Then I researched Nocturnal and believed it was the best way to do dialysis (as well get my evenings back).  After months of my center hemming and hawing, they finally told me no for liablity reasons.  I called up a center in NY that week and arranged to switch to them.  It is a 2.5 hour drive one way once a month (or more if I have problems), but it is SO WORTH IT!

I am still using NxStage and aim for 6 days a week at 8 hrs a session.  So I get 48 hours a week with 1098 blood liters processed.  I do know many centers (like my old one) will not let you do Nocturnal, which is a shame.  I have found it to be the best method of dialysis.

They care more about their fat pocketbooks than your health, pretty simple.

[dialysis.sucks]

- House
- Sportfisher
- Corvette
- Top placement as one of the best in my field

So, yeah, when you see my SN it might make more sense.

[noahvale]

*

[obsidianom]

Dialysis has taken nothing for me.  To the contrary, it has given me 22+ years of Life I wouldn't otherwise have.  Now, if the question was phrased,"What has kidney failure taken from you?"....

YOU HIT IT ON THE HEAD EXACTLY!!!!  Good point and one for everyone to remember.
It is not dialysis that is the enemy , IT IS KIDNEY DISEASE.
While dialysis is no picnic and can be uncomfortable, it is not the culprit. The real enemy is the disease that requires dialysis.
In a way this site should be named " I hate kidney or renaL disease"   
Dialysis is the treatment not the cause of all our misery. Dialysis saves lives.
Our nephrologist was musing the other day how 40 years ago most patients would die after less than 1 to 3 years if they even could get dialysis. It was barbaric compared to today. Also he told me that diabetics would often NOT be eligible for dialysis as only kidney disease in primary form would be eligible. That is a sobering fact for all diabetics. At least today anyone with renal failure is eligible.
So blame the disease and HATE it, but THANK DIALYSIS that it exists and can keep you alive. I thank it every treatment that my wife is still here. She   was so sick  before dialysis and today as I write this she is on the treadmill walking and SINGING. I thank dialysis everyday for her life.

[Dman73]

I've lost the freedom of being healthy and the naive feeling of youth thinking that you will live forever and had to face a life/death situation 5 months after graduating college.

On the other side, if I was healthy on Sept 14, 1969 I won the #1 spot in the draft and would have gone to Southeast Asia and who knows how that would have worked out.

As the song goes " it ain't me it ain't me I'm no fortunate one ".

Over the 40 years D has given me broken hips from parathyroid problems, tinnitus & hearing loss from alport's syndrome, 24/7 carpal syndrome, muscle wasting and a indelible spirit of continuing on allowing me to work 22 years for a large corporation in IT, get married, get divorced, get a transplant, get a commercial pilot's license and currently trade the market while on D. 

I have conquered D and am somewhat comfortable with it. What is difficult is sitting in that cold 69 degree facility and working with a staff that has a lot of turnover and you are positioned between them and their paycheck. I also detest that blood pressure cuff that is on your arm/ankle that activates every 30 minutes. It is never able to get a reading the first time and may try up to 8 times to get a reading. I feel like a cow on a milking machine with this setup. You take a BP standing & sitting before you go on and after before taking you off, when returning blood, after you have been disconnected and one last time standing. I'm thinking about bring in my own BP cuff but I'm sure they they will be startled and won't allow it.

[Sugarlump]

Let's throw this thought into the mix...
Has kidney failure and dialysis affected your sex life?

I would say yes, not just from a lack of energy and desire point of view but also the ability to still feel sexy and dress sexy with a dialysis catheter.
Not to mention scars from previous surgeries... that affect one's body image and confidence.
I try damn hard not to let it rule my life but you cannot stop it having an effect on it....

  

[obsidianom]

Let's throw this thought into the mix...
Has kidney failure and dialysis affected your sex life?

I would say yes, not just from a lack of energy and desire point of view but also the ability to still feel sexy and dress sexy with a dialysis catheter.
Not to mention scars from previous surgeries... that affect one's body image and confidence.
I try damn hard not to let it rule my life but you cannot stop it having an effect on it....

  

I have given this one a lot of thought as it is a "delicate" subject. I was going to answer privatly but what the heck, we are all in this together arent we?
AS  a male and spouse of a dialysis patient who has had a catheter at times for many months and has a feeding tube also sticking in her, I would like to say sex can still be as good as ever. Yes if you dont feel good its tougher , and as a cancer survivor myself I know this well. But a lot of it is in the mind. You women out there remember , you can still be loved and seen a sexy with scars, and catheters and dialyisis. If it is a problem with body image and confidence, remeber you may see yourself one way , but the person you are with , especially if they love you,  will still see you the same as ever IF YOU LET THEM. You can still be atractive and loving (in the bedroom too) despite these physical issues.
You male spouses , remeber to TELL your partner she is still sexy and important to you, including in bed. The same for the women partners of male patients. It works both ways. If sex is important to you( and it sure is to a lot of us) , dont let this illness or dialysis stop you.
I will get off my soap box now. I hope I didnt offend anyone. I just want all of you to be happy living with this difficult disease. And for those who think I may not understand as I dont persanally need dialysis, I DO. My cancer damaged me forever physically and left mental scars.(I almost died and live in fear of a return) My wife and I made sure not to let it effect our sex life. When she became ill later with kidney disease we still didnt let either of our ilnesses effect us. So even with 2 damaged partners we refuse to give in .  ( I hope this isnt one of those "too much information" things------)
 

[noahvale]

^

[justme15]

Let's throw this thought into the mix...
Has kidney failure and dialysis affected your sex life?

I would say yes, not just from a lack of energy and desire point of view but also the ability to still feel sexy and dress sexy with a dialysis catheter.
Not to mention scars from previous surgeries... that affect one's body image and confidence.
I try damn hard not to let it rule my life but you cannot stop it having an effect on it....

  

I agree completely
in fact, I am on the way now to the mall to try to find some clothes that are attractive and that accommodate  my new "PD belly" and catheter.

[Sugarlump]

I raised the topic here because it is the one thing nurses, doctors , counselors don't talk about or don't think it is an issue...
and as you say where else or with whom else can you talk about it with?
On here, other people immediately understand where you are coming from and that is so liberating.

I try not to make a big issue of my kidney failure socially, those close to me know i am on dialysis and stuff but others probably know nothing,
I want to be seen as me rather than the illness.... as sugarlump rather than that girl with kidney failure!
Sometimes, I a m asked directly about my health and I will reply honestly then 

[UkrainianTracksuit]

I wouldn’t say that it has affected my sex life but it has affected body image.  So, I understand part of your posting here.  I understand how they’re related so I feel for you as a woman. 

I have a bit more pressure than the average bear since my boyfriend is a boxer.  (Athlete  not dog.)  So, physically, he’s healthy and looks great.  I feel embarrassed and ashamed at what I look and feel.  Do these feelings make me put up a wall sometimes physically?  Yes. 

Not to sound cliché but the biggest sexual organ is the mind.  If you consider yourself sexy, you’ll radiate that energy.  Not to sound like a self-help book but confidence really is the most attractive quality.  If your partner remains with you, they obviously still feel that attraction.  He loves you for a reason; cathether and all.  It is very difficult with scars and “extra dialysis renovations” but you need to focus on your good aspects.  Easier said than done, I know.

As for “dressing sexy”, it’s all about adjusting style.  Sure, when we think of “sexy clothes”, we consider low cut, tight and less material to do the job.  However, that doesn’t have to be the case.  If we all focus on what we “can’t wear” or what doesn’t look good, we’ll never feel attractive to our partner.  We’d never go shopping and that creates a vicious cycle.  And so, we can all tweak our style so that we make the clothing sexy rather than the clothes make us.

For example, I’ve found the cut of certain Alexander McQueen dresses rest or fall perfectly away from any “medical renovations” I’ve had.  They look amazing, feel comfortable and no one can deny the attraction created from the garment.  Or, I’ve found floating sheer tops with embroidery are captivating to the opposite sex while “camouflaging” anything I’m self-conscious about.  Both of these options cover anything I don’t want showing.  And, on the days when there is ABSOLUTELY no help to cover the medical train wreck I am, huge sunglasses, a kaftan and a huge hat give the illusion to my boyfriend that he’s stuck in the Arabian Knights music video.  And then things just get strange.  We all have our own style but there are options out there. 

Like kidney disease has done to all aspects of our lives, we have to make adjustments.  The adjustments we make in turn allow us to overcome negative feelings and feel better.  I truly hope you feel better about this soon.  (I apologize for making close to nil sense.)  (P.S: Sorry for rambling on too.)

[Sugarlump]

It's really good to share thoughts on this, male and female particularly about thoughts on body image. as kidney patients we collect scars, surgical scars, rashes and appendages.
I like to wear tight clothes, short dresses and stuff. Clothes that make me feel sexy. But I don't want my dialysis catheter on show...
I am also conscious of my line when in bed, and try not to squash it or lay on it much .... but it's difficult not to at times  I have a femoral groin line rather than a chest line whicg does get in the way sometimes
and also pretty easy to dislodge with vigorous activity!!!! 

[obsidianom]

My wife and I refuse to let our medical issues stop us form enjoying each other including in bed. My wife was a psychotherapist before retiring and saw lots of marital and sex problems.  We used to discuss this a lot. Believe me , even non- ill people have all kinds of sex issues and problems both in marriages and singles. It isnt just us dialysis and medically damaged people.
We used to discuss what helps keep sex in a relationship working. It has worked for us for 33 years. We decided it could work for anyone and she used to use it with her patients. Here are some examples that I can share and perhaps help.
1. Set up "dates ' in advance. This is one way to work around schedule (such as dialysis) issues and find a time that works best. It then gives you a chance to build up excitement and its a "sure thing". Pick a time where you are mentally or physically at your best. Not necessarily late at night when you are tired. (we found mornings on weekends work best)   This doesnt mean you cant do the "spontaneus "thing when you feel the urge. It just giives you a special time carved out where there are no distractions or other issues .
2. (this may be a bit controversial).( My wife feels as strongly about this as I do)Never say NO to your partner(assuming you have a good relationship or marriage). Being rejected or denied leaves scars and makes sex become a battleground. Knowing you can ALWAYS count on your partner tends to create a more relaxed natural feeling that leads to less stress and frustration on both partners. Obviously we have exceptions for serious medical problems. Even if one partner is not in the mood you can still say yes and be there for the other partner.   I wont go into all the details of how my wife and i have worked this out , you can figure your own ways , but it definatly has created a wonderful atmosphere for us to avoid a lot of the pitfalls many couples have in the bedroom.
3. Above all , TREAT YOUR PARTNER WELL. This goes for not just in bed but all the rest of the time . Good sex comes out of a good relationship .Treating your partner badly the rest of the time does not lead to your partner wanting to be intimate with you.  Its hard to be relaxed and uninhibited in bed if you are angry at your partner for treating you badly.
4. TALK about sex with your partner. Communication leads to better sex. Too many people never tell their partner what they like amd want in bed. They just assume the other person will know what to do. Everyone is SO different in what turns them on and what they like done and to do. Talking about it can make your sex life come alive and its a great aphrodesiac.
5. REMEBER, NO ONE IS DOING SWAN LAKE OUT THERE IN BED. This was a great line in a book , discussing sex. Dont worry about how you look or act during sex. When you get right down to it, its pretty funny to think of anyone having sex. Its not a contest or beauty pagent . No one (except maybe made up porn stars) is perfect or looks perfect. We all have imperfections and often lack grace in bed. SO WHAT> !    Dont think of what you cant do., think of what you want and can do , and above all ENJOY the intamacy and fun it can be.

[obsidianom]

I dont mean to overdo the sex discussion but there is a reason. There was a mention a couple times about doctors and medical people not discussing this with patients and I have found this to be true. I have a story.
I am helping a young(42) woman with severe cervical cancer deal with her treatments and the whole cancer issue itself. I did surgery on her 15 years ago and treat her mother now for many years. She has been a wreck dealing with this as it is stage 2b with a large non operable tumor effecting her cervix and upper vagina and uterus. It will be treated with chemo and radiation. She is having similar treatment to what I had so I have persoanal experience with the treatment along with medical knowledge. 
She is scrared of dying or at least being damaged forever by this. She is set to be married in a few months after years of waiting for the right guy.
One of her first questions to me was about sex and whether this will ruin her ability and whether her fiance might leave her. No one else has talked with her about this aspect . They all discuss the medical stuff, but no one has talked about her sex life. Thankfully I am comfortable talking about this with patients and we spent some time on this . She needed to hear this to be able to fight her cancer.
So to make a long story short, I thought about us here in dialysis /kidney land and realized, after it was brought up ,that we need to at least make it ok to talk about it here. We all have various physical damage and it can effect our sex lives . So i jumped on my soap box.
I hope this can help someone out there, even if you never post it. If you have questions that you cant post , you can send a personal message. I talk about everything with my wife , she was a GREAT therapist for 30 plus years , and you will get her input too.

[Deanne]

I had to think about this question for a while. The only thing I can think of is that it's taken an hour or so out of every day for machine set up/tear down/record keeping/supply shuffling, several feet of space in my spare bedroom for the supplies, and a couple more feet of space from my bedroom where the cycler sits.

It hasn't really taken over my life. Maybe that's still coming since I'm new to dialysis yet. I'm still able to work full time. My medical appointments are primarily during the workday and I use paid time-off for them, so I can't really complain too much about loss of time for them. I'm still able to take my dogs to the park after work whenver it's nice enough out. I still get together with friends to go walking on weekends. I'm able to physically do more right now than I could in the months before I started dialysis.

I have to keep a strict bedtime to make sure I attach to the cycler on time so I get up for work in the mornings, but I wasn't a night owl in the first place. I work from home most of the time now because they cycler doesn't finish early enough for me to get to work as early in the mornings, but I don't think of that has a hardship. It saves on gas money and my dogs seem to appreciate having me home more anyway.

I guess it's taken away my ability to pig out on pizza and Diet Coke. I probably shouldn't have been doing that anyway, but I'd LOVE a huge slice of pepporoni pizza (extra cheese) and a can of Diet Coke right now. So I guess it's taken away a bit of time, space, and junk food.

[CalamityEC]

While I appreciate that dialysis (which I've now had...twice so far, this time around) will, eventually, help me feel better, I realized that, even when I start feeling better, I won't be able to go back to swimming laps.  I love swimming.  It's my exercise of choice, especially since I get stress fractures in my feet a lot and have two artificial hips.

[MooseMom]

While I appreciate that dialysis (which I've now had...twice so far, this time around) will, eventually, help me feel better, I realized that, even when I start feeling better, I won't be able to go back to swimming laps.  I love swimming.  It's my exercise of choice, especially since I get stress fractures in my feet a lot and have two artificial hips.

Why do you have to give up swimming?  I've just looked at your intro (I'm sorry; I must have missed it), and you said that you were on hemo, and I'm not aware that HD patients can no longer go swimming.  Is yours a special case or something?  I love to swim and would hate to have to give it up, so I really feel for you, but I am confused.  Thanks for any explanation you can supply!

Edited to add:  Oh wait.  I've just seen a post where you mention a skin graft.  Is that the problem?

[CalamityEC]

I was supposed to get a graft.  But the OR never got booked (so freaking annoying, by the way).  So I ended up getting an unplanned chest catheter that I can't get wet...so the last couple days has been me experimenting the best way to accomplish washing my hair. lol

[MooseMom]

I was supposed to get a graft.  But the OR never got booked (so freaking annoying, by the way).  So I ended up getting an unplanned chest catheter that I can't get wet...so the last couple days has been me experimenting the best way to accomplish washing my hair. lol

Oh man, "annoying" is an understatement.  So, will you be able to return to swimming eventually?

[KatieV]

I was supposed to get a graft.  But the OR never got booked (so freaking annoying, by the way).  So I ended up getting an unplanned chest catheter that I can't get wet...so the last couple days has been me experimenting the best way to accomplish washing my hair. lol

The best way I've found to kneel by the tub, sticking my head into it.  We have a removable shower head with plenty of hose.  Then my husband washes my hair while I hug a folded towel against my chest. 

That will only work if you have a partner willing to wash your hair though.