how do you keep doing this?

[Katie07]

I've only been on dialysis for a week, and I'm already trying to decide, if it's worth it. I know, that there are people who just go, have their dialysis done, and walk out. How do you do that. I'm not even up to four hours yet, but the itching, difficulty breathing, and fatigue are awful. The worst part, is the incredible cold. I have several blankets, a sleeping bag, hat, gloves, two pairs of socks, and a guide dog laying on me, and still I freeze. Is this really life? I'm obviously, not one of those people on television, who are terribly sick, but keep going on with their lives. I wish I could be a different person, but it's a little late. To those of you, who have endured this for years, how have you done it? I just don't know, if I can, or want to.

[kickingandscreaming]

I would say to give it more than a week to decide if it's worth it or not.  I'm not one for living no matter what.  I have often asked myself if I can bear this.  My answer isn't always "yes."  If I feel decent (and that's a relative thing) I will go on because choosing to die is a big deal.  Sometimes it's the right choice, but mostly it isn't.  I do feel that in-center Hemo is the worst possible option for doing dialysis.  I would never choose it if I had a choice.  I do PD at home with my dog.  And I'm in control of the process.  I don't freeze and I'm not immobilized. I am comfortably tucked in my warm bed and painlessly dialyzing.  I don't know if PD is an option for you or home Hemo, but they're are worth exploring.

[kristina]

Hello Katie and welcome to IHD,
Please ask the nurses to put a higher temperature on your dialysis-machine, so that you won't feel so uncomfortable and freezing cold.
Please also give it a try to find your own way: being on dialysis is not too bad and it is important to learn as much as possible about your machine and your own best way how to deal with it all.
Of course, at first it is a big shock to your system, but as soon as you work things out for yourself, you'll find that it is not too bad.
Best wishes and good luck from Kristina.

[Michael Murphy]

One in the beginning dialysis is harder than it will be in 6 months.  Two including setup and take down I spend 18 hours a week in dialysis that leaves 150 hours a week to have a life. Three, don’t worry about dialysis, take it a week at a time, every Friday I celebrate the end of dialysis for the week.  Next week is next weeks problem.  Finally there is much research being done on cloning, growing a human kidney in animals and the most promising the Inplantable Artifical Kidney, I now think of dialysis as a bridge to a better future.

[Simon Dog]

I'm coming up on 6 years and still have a pretty good life.

I suggest you learn about all your options including PD and home hemo.   A key to maximizing your quality of life is picking the option that best matches your  medical needs, capabilities, lifestyle and personality.   Some docs are great about providing all of the info; others suffer from old school medical arrogance and will steer you into the center with no discussion of other options.

Tonite, I will do cross word puzzles, watch youtube videos, and finish up with a movie on Netflix or Hulu, all from my spare bedroom while I while away the time while on dialysis.

[lulu836]

The alternative to refusing dialysis is a slow and painful death.  If one chooses that route there is a point of no return meaning that there will be a time when the chosen path is going to work no matter what.  Dialysis is not that big a deal.  The less you dread it, the less you fight it, the less you whine and fuss about it the easier it becomes.  Jus accept it and stop being so resistant.

[kickingandscreaming]

Jus accept it and stop being so resistant.

That's a pretty arrogant statement.  Each person has his/her own process to go through to make peace with what's going on in life. That process takes time.  Katie07 has only been at it for a week.  With time, she will either accept or reject dialysis  but there is no rushing it.  It's not as simple as just saying yes.  She has to work it out in her own head.

[PrimeTimer]

Sorry you are going through this. I'm not on dialysis so honestly can't say if it gets easier. I don't see how it would but I guess some get use to it enough that it doesn't seem as rough as it was when they first started. It really surprised me when my husband said he recently started sleeping thru his sessions. He use to watch TV but could never nap and now he does. He says it makes the time go by a lot faster. Hopefully it will get easier for you, too. Meanwhile, you can always come here to vent or just to let us know how you are doing and any progress you might be making. Maybe you'll even get to the point where you can pass on some advice to another newbie. Hang in there! 

[Charlie B53]

Hi Katie,

That first week can be a real bitch.  The clinic is trying to take off as much water as possible in order to Save YOUR Life.

That difficulty breathing may be caused by water accumulated inside your lungs.  Taking up space needed by Air for you to breath.

Unfortunately this takes time.  As the clinic dehydrates your circulating blood then your body slowly tries to reabsorb those fluids that have leaked into the lungs.  It won't all go away immediately, it will take time and a number of treatments.

How well you control your fluid intake also is critical in this.  Over-loading by drinking too much daily, and eating too much 'wet' foods, and ALL food contains water, well, not crackers, but they have salt which will make you want a drink.

The Dialysis life is to learn what we can do to make it easier.  Learning to eat and drink much much healthier makes this so much easier.  And this is a life-long commitment.  If you want to live.  It really isn't that difficult once you get used to it.  We pretty much eat what we want, we just strictly limit how much of those things that we have to.

Keep posting.  Let us know how you are doing. 

We Care.

Charlie B53

[Paul]

The thing to remember is this: Eventually you will be on 12 hours dialysis a week. With being put on/taken off/weighing yourself, let's say 15 hours a week. there are 168 hours in a week, that leaves 153 NOT on dialysis. You are getting 153 hours life for an investment of 15 hours. Sure, those are a horrible 15 hours, but the returns are great. 153 hours for 15.

Before I went on dialysis a friend told me about her father. He went on dialysis after retiring. His attitude was that he used to work 35 hours a week. Now he is on dialysis 12 hours a week. So in his mind, he is getting 23 hours off a week. Shure, for most people dialysis is worse than working. But that is not true of all jobs. Think of all those people with really shitty horrible jobs, doing it for 35, 40, 50, or even more hours a week at them. All you got to do is 15 hours a week.

And remember that if you continue with dialysis and decide, some time down the line, that you can no longer take it, you can always change your mind and choose death then. But if you choose death now and find you don't like being dead you cannot change your mind then and go back to being alive. Death is forever, dialysis isn't.

(This next bit is not fair, in fact it is very unfair, but it is true.) How would you feel if someone you loved died? Now think how many people will feel that way if you choose to die. Multiply your pain at loosing one loved person by the number of people who love you. That is the amount of suffering you will be causing if you choose to die.

Now on the good side, note well what Charlie said: "Keep posting. Let us know how you are doing. We Care." We will always be here for you. Need advice? Need sympathy? Need to blow off a bit of steam? Then post here, we will be here for you. Never forget that.

[Thesunwillshinetomorrow]

Hi,
I'm a partner to a gentleman that dialyzes, I remember on an occassion where he wasn't feeling well and they were telling him he may have to go to the, "Main Unit (Hospital)" to dialyize.
He is under this perception that the care given at, "The Main Unit" puts his life at risk. Anyway...on that occasion he began this...."I'm not going there I won't go at all....I'd rather die. Draw the papers. I'll sign them."
As his partner....This caused me distress. I thought, "Wow...just like that...he could be gone..."
I shared with him that I found that behaviour VERY concerning and troubling.
I guess what I want to say is....YES every decision and choice YOU make impacts those around you that care and love you.
I agree wholeheartedly with what Paul and the others have shared.

[Simon Dog]

I have done D at home, at numerous clinics, and two hospitals.   The hospitals used the same machine, prescription and protocols as the clinics.   The only reason you are at higher risk in a hospital is whatever reason is causing you to be in the hospital.

Of course, I prefer the housepital.

[GA_DAWG]

The first few weeks can be hard. You are experiencing something really different right after the surprise of finding out your kidneys decided to quit working. It can make your head spin. When I first started, Fresenius had a program called Right Start. A nurse called every week to explain what was going on and to ask if I had any questions. She was really helpful at calming my mind. After a while you develop a rhythm, a routine you follow. I always just thought of it as going to work. It is what I have to do to live and be with my family and enjoy the rest of life. In time, you develop relationships with other patients, the nurses and techs. In other words, it becomes bearable. Not fun, but bearable. Give yourself time to adjust and don't expect the miracle of immediate acceptance.

[Rerun]

I've heard it called "the dirty fish tank syndrome"  When a fish swims around in clean water and it gets dirty very slowly he seems to do fine in dirty water.  Then you take him out and put him in clean water and he gets sick until he gets use to the clean water.  It will get better.  It dose suck.  I'm so sorry you are having to face this.  But, you are not alone... you have us.  Believe me there is no one worse than me who felt sorry for me.  Sometimes I still do.  It is okay.

[LorinnPKD]

One thing I do is try to make dialysis as comfortable as possible.  I bring in an enormous (like, absolutely enormous) bag of pillows and blankets with me for padding and cover to make the chair more cozy.  I bring an iPad and use the internet connection for Netflix so I don't flip aimlessly through TV channels.  I have a nice pair of earphones that block out a lot of the clinic noise.  And I always bring a small snack to enjoy -- you're not supposed to eat salty food on the machine because that can raise your bp, but I like having some crackers or apple slices to nibble on.  I wear comfy, stretchy clothes and fluffy furry bedroom slippers because my feet are always cold!  I'm sure I look like a lunatic but once I get settled in, it feels pretty good.

Seconding the recommendation to turn up your temperature.  I run at 37.  If you have low bp they may need to turn it down.  Sometimes the person on the machine before you may have it set low so they may need to turn it back up for you.

I also make a point to get to know the staff. I look forward to seeing them.

I think right now it's harder because it's new and because you're taking off some extra-extra fluid.  And the itching should improve once you get your phosophorus down.   When I started treatment, I was sleeping all day every day because I was so tired I could barely function.  Within a few months, I was able to have more of a regular life.  Although I still have some fatigue and need to take things slower, things are pretty nice now.

We're all here cheering you on.  You can do this!

[Simon Dog]

Learn about the machine - how to check settings, verify you are plugged into the correct bath, and what the range of save venous and arterial pressures is.  Also, learn how to calculate the amount to take off (generally gain + 400ml).    And finally, learn about untrafiltration profiles.   If you are cramping, a different profile may help.

[Paul]

you're not supposed to eat salty food on the machine because that can raise your bp,

? One problem with dialysis is your blood pressure drops. Anything that raises your BP is a good thing!!?!

[Simon Dog]

As to how do I keep doing this? .....

I've been on D for close to 6 years.     About 30 minutes ago, I punctured myself, hooked up to NxStage and started a run.  Ooops, venous pressure running too high, untape venous needle and move it around a bit, ok it's good now.

Now, I'm going to settle in for a few relaxing hours.   I'll start by packing up my monthly blood sample for the transplant lab, then move on to checking my emails and doing a crossword.   (Hint: from easy to hard USA Today -> Washington Post -> LA Times).

After that, some Youbing for an hour or so, then its on to see what Netflix, Hulu or Amazon has to offer.   Half of America spends 4-5 hours a day glued to their TV at night, so I figure I can do this for the last hour or hour.5 of dialysis.

Finally, time to pull the needles and congratulate myself for holding the beast at bay for another day and look forward to another day when I can forget about D until 8PM.

[Riki]

After nearly 14 years of dialysis (this time) and nearly 30 years living with chronic kidney failure, I can tell you, it gets better.  It gets earier.  The more you learn, the more things turn into normal.  The first few weeks suck, but once your body gets used to it and you start to feel better.  Once you start to feel better, your life starts falling back into place.

As for the cold, I still deal with that.  It takes me hours to warm up again after dialysis.  I always bring a blanket, and my unit has a blanket warmer, so I take a few of their warm ones too.  It doesn't help.  You learn to deal with it, and unfortunately, I have no advice there.

A few years ago, someone asked the question of what our philosophy to keeping up dialysis.  My thoughts were that I have a small circle of people who love me, and my death will be hard on them.  If I were to decide to stop dialysis, it would cause my death, which would casue them pain.  I don't want to be the cause of pain for them, so I will not make that decision.  I will let nature decide that for me.  In the end, you must cme up with your own reason for going on, or for not.  It's up to you.

[GA_DAWG]

Really, really, really jealous about the blanket warmer. We get them at vascular, but not the clinic. Man, they are nice.

[LorinnPKD]

you're not supposed to eat salty food on the machine because that can raise your bp,

? One problem with dialysis is your blood pressure drops. Anything that raises your BP is a good thing!!?!

My bp is all over the place, so I gotta stay off the salt to prevent, uh, unexpected results.  Your mileage may vary...

[Michael Murphy]

The one thing about dialysis is there is not always a common problem for every one.  If you are uncomfortable talk to the nurse or your doctor.  Medical issues need to be addressed by a doctor if your doctor doesn’t listen or minimizes your complaints go to another doctor. In my case while I talk to my doctor it’s been two nurses who have provided me with the support and guidance to deal with dialysis one is the charge nurse who seems to have been doing her job forever but really cares for her patients and has a great sense of humor and generally points me in the right direction for answers the second is my doctors nurse praticioner who treats her patients like family and gives us direction in no uncertain terms about what we need to do.  Finally they both listen.  The discomfort of a long time in a chair.  If you are cold bring a warm blanket, if you are bored bring a book,or a iPad or crossword any thing to pass the time.  I get hungry so I generally bring a 1pound box of strawberries, and a bottle of water.  Finally watch your fellow patients and see what they do to pass the time they may be doing something you would find interesting .

[Riki]

Really, really, really jealous about the blanket warmer.

I think the only reason we have one is because in our original unit, there was one that had been donated by a patient, so when we moved into the hospital, a new one was bought to replace the old one.  It may not have been on the list if that patient hadn't donated the one we had

[lulu836]

Whether or not my original answer is perceived as "arrogant" it still stands.  You have received some good suggestions in the answers provided so why not try them out and report your findings in a couple of weeks?

Oh and I "keep doing this" (grateful for the technology that keeps me alive) one day at the time!  'Nuf said........

[LoneHighway]

If you can afford it, a battery powered heated vest can help. Motorcycle riders and golfers (and me) wear them. They’re kind of pricey, I got mine on sale for $100, but it works. I still need a blanket though.

It’s a bad idea to try to warm up by increasing the dialysate temp. It shouldn’t exceed your body temp minus 0.5 C or you risk brain injury. They run me at 36C.