How? How do we do this? How?

[StarryNight16]

Still working on figuring this out.

My wife and I are 50. We have two school-aged children. My wife has ESRD and has been on peritoneal dialysis (at home, four times a day) for two months now, but it's not going well. After a brief period of stabilization, she's now gaining weight and retaining fluid and so... I don't know, hemo might be in our future?

And what happened to our future? I mean, how do you deal with this? I used to dream of having a nice retirement with my wife, of just sitting on the porch and reading and having coffee and talking about the children. Maybe a bit of travel. But there's no return to normality, is there?

The good news is that my kidney is a match and so if all goes well we will do the transplant this summer. But things don't always go well, and even if things do go well, even if we do have the transplant, that just leads to more problems of an entirely different sort, doesn't it?

I guess... what I'm asking is... how do we go on? I can't think about the future like I used to, because everything's different and it's never not going to be different. There's no "getting better" in kidney failure it seems, and even in the best case we're just swapping out one set of problems for another.

I try to just get through one day, one day, one day, one day. I try to be strong for my loving and brave wife. I try to keep it all together. I try to keep it together for the kids. But I don't know if I can keep doing it because there's just not much hope that things will get better, is there?

[iolaire]

Welcome to the group.  Focus on getting your wife stabilized and a treatment plan that works and you should be able to fulfill your dreams.  Ignore longevity stats for dialysis, those are biased by people who have lots of complications and often the complication of being very elderly. 

And what happened to our future? I mean, how do you deal with this? I used to dream of having a nice retirement with my wife, of just sitting on the porch and reading and having coffee and talking about the children. Maybe a bit of travel. But there's no return to normality, is there?

Your normality might change a bit but these goals are completely achievable.  We have a member that has retired in the Adirondacks, another who brought his NextStage HD system and generator on a rafting trip down the grand canyon, and I've received HD treatments at numerous global dialysis centers.  And I'm sure a majority of our members are able to enjoy their porch and family or friends.

[kickingandscreaming]

There is usually a way to tweak PD by varying the amount of fluid used or the duration of the dwell.  Hopefully, your wife can switch to using the cycler instead of manual treatments.  It is common to gain some weight from the sugar solution, but may people actually lose weight from feeling full so much of the time.  I wish you both luck.

[Paul]

I'm told that hemo removes less fluid than PD at it's maximum strength, so that won't help with your wife's water retention. Two things will help that. One is using a stronger PD solution (ask your nurse about that). The other is, I'm afraid, simply drinking less.

As to your worries about the future. One rule: DON'T THINK LIKE THAT. The future will be whatever you decide to make it. If you think bad thoughts, the future will be hell. So think positive. Read a few posts here by people who travel widely while on dialysis, do practically everything they did before. You and your wife can do the same.

And as to after transplant: Things may not be 100% normal, but they will be bloody close. No life is perfect, why do you assume yours has to be?

Finally think on this. Both dialysis and transplants are fairly new. If this had been a few decades back, you would not have had those options. Your wife would have been dead by now. Every day you have, every thing you do is a bonus. Stop dreaming of a perfect life, no one ever has that. Instead be grateful that you are not spending every Saturday putting flowers on your wife's grave. Dialysis gives you that. And eventually the transplant will give you even more. Think of the good things, not the bad - It will make your life (and your wife's life) a million percent better.

 

[Paul]

And as a PS. You say "I used to dream of having a nice retirement with my wife, of just sitting on the porch and reading and having coffee and talking about the children. Maybe a bit of travel. But there's no return to normality, is there?" Why not? You can do that on dialysis, lots of people do. The only change is: Not too much coffee. Everything else, sitting on the porch, talking about the children, travelling, is doable, you don't need to change this. And after the transplant, you can go back to big jugs of coffee. Life as you dreamed it. Stop trying to make it bad for your wife.

[MooseMom]

Dear Starry Night,

Your post brought me to tears because I've had those same thoughts and fears that you've expressed.  It is a horrible way to live, to live in fear of the future or whether or not you even have one.

As others have already pointed out, you and your lovely wife can still sit outside and enjoy the sunset while talking about the kids, but I can understand why, at such an early moment in dialysis, it is hard to envision ever having any joy again.

What you are feeling must be just like what others feel when they get a cancer diagnosis.  Nothing ever gets back to normal.  There is always that worry.  And then we grieve for that past life where there were not these kinds of ever-present fears.

While it is true that dialysis doesn't cure anyone, it CAN, if done properly, make one feel so much better.

I don't know anything about PD, but as you've seen, we have members who are practically experts on the subject, and I am confident that their suggestions will help guide your wife to a better outcome.

I've had a transplant for almost 6 years now, and I am, for all intents and purposes, 100%.  The biggest problem I have is really the bureaucracy of it all and trying to get my claims paid despite having good private insurance.  I really do hope that your wife's transplant goes well.  Honestly, a kidney transplant, while it sounds dramatic (and, well, it IS!), is fairly routine surgery these days.  The trick comes in maintaining it and preventing rejection.

You are both lucky that you are a good match.  In my very humble opinion, a successful transplant will improve BOTH of your lives.  I wish you both well!

[StarryNight16]

Thank you, everyone, for your kind and thoughtful replies. I guess I'm just overwhelmed, like so many of us are. I just need to vent, and I can't talk to anyone here, because then they'll worry about me.

to Paul: wait, I can't drink too much coffee if I'm going to be a kidney donor? What's the story with that, because I drink about 4 cups a day...

And yes, I know that I'm lucky to still have my wife with me, and I appreciate that, I really do! I guess that I just didn't ever think that this would happen to me. But hey, nobody gets a perfect life.

Thanks, everyone, for listening to me.

[LorinnPKD]

Hello there!

What you're feeling and fearing is absolutely normal.  Goodness, you're both still getting used to all this, and you really have to be gentle with yourselves and give yourselves some time and space to adjust and adapt to the different phases of a new and changing normal.

A successful transplant has the potential to make an enormous difference in your lives.  My dad had his second transplant at age 51, and although it wasn't a perfect match, it was a good kidney, and with proper compliance with meds and his dr's orders, he made it last a wonderful 16 years.  That saw him through semi-retirement, then full retirement and lots of time with family, and multiple trips across the US and Canada.  While there were no guarantees it would last forever, we all made the best of it and saw the transplant as an enormous gift for all of us.  I'd never trade that time with him for anything in the world.

Look, settling into a new normal isn't easy.  The diagnosis can feel so crushing, and at first you assume you're just going to be living one of those terribly tragic Lifetime movies for the rest of your life.  But speaking from two years on dialysis myself, I haven't seen a single script or director or a cameraman so far, so I'm not going to worry until I do.

Sending you and your family strength.

[Charlie B53]

I don't see life on Dialysis that much different than my life before Dialysis.

I have had to make some 'adjustments', like the treatments, and improving my diet, and being very careful with fluid intake.

Oh, and I am tired ALL the time.  I have learned to take lots of naps with our Dog and Cat.  They both love to climb in bed and take a nap with me.

I did PD for 3 1/2 years before screwing up and causing an infection, forcing my change to hemo over a year ago.

I stayed 'wet' 24/7, had an 'all-day' fill of the Ico solution which is a different type of sugar, one that isn't readily absorbed so it did not contribute to any weight gain.

I was soo 'full' all the time that I couldn't eat near as much as I used to, which was too much anyway.  I was already way over weight.

So I decided to improve what I ate, more fruit and veggies, less flour, whatever the form, hardly any bread.

My first two years I lost 100 pounds.  I am still trying to eat like that.

Fluids.  On PD I could drink as much as I wanted, PD worked so well it took off all the fluid.  I used almost all green bags and did OK.  But remember, I also had that ICO long dwell that took off more.  If she is gaining you need to figure out if it is carbs gaining fat or water weight.

Watch carefully for any swelling, face, hands, feet, difficulty breathing, all signs of water.  Talk with her PD Nurse about increasing the number of exchanges.  Exchanges and dwell times can be adjusted to fit the individual.

If it is water then she needs to find methods of reducing her fluid intake.  I use Lifesaver Mints, Bubble Gum, a single mouthful of liquid if I feel I absolutely have to have a drink.  It isn't always so easy, but it is working well for me.

Warm weather I am out in the yard, I got lots of yard, so I tend to sweat, not enough to get soggy, but enough I can have a half a glass of ice water a few times a day without driving my weight up.

It's a pretty tough learning curve just starting out.  It will take time and a lot of practice, but then it does get easier.  And you two will still be able to have that time on the porch.  I do.

Take Care,

Charlie B53

[Marilee]

Hi StarryNight - I'm new here, too, and just wanted to say, "Man, I hear you!" It's a spooky time getting going with this change, and it keeps on changing, too. My hubby started his PD with 3 exchanges daily. After about 8 months, they determined he needed 4 exchanges, so that's 10 hours each day. He had trouble with swelling, gained a bit of weight at first and then it settled out. But we literally do sit on the porch everyday in our rockers and watch the dogs bounce about, wave at neighbors and joggers and just 'be'. We also travel in our RV for fishing trips. Our life is certainly more scaled back than when we were young'uns, but it's still a fine life. Even so, there are the spooky times: Evenings in the emergency room because blood pressure went all out of whack; mornings waking up with cramps EVERYWHERE; boxes of supplies; cranky machines; changes to diet (again). And all the while, in the back of your mind, you think this is a house of cards that could come tumbling down at any moment. Of course, that's true with everyone, everywhere. But living with dialysis is a daily reminder. So, how do we do this? Well, as best we can.
This is the new normal.

[Paul]

Paul: wait, I can't drink too much coffee if I'm going to be a kidney donor? What's the story with that, because I drink about 4 cups a day...

Wooh, sorry, no... Misunderstanding here. As a donor you have no need to cut down on your coffee intake. I was referring to your wife. Coffee has a fairly high potassium content (and the instant version has a very high potassium content). So while your wife is still on dialysis she has to watch the quantity she drinks. I believe that on PD (as opposed to HD) this restriction is not as severe, but watch her blood results and if potassium gets a bit high, coffee is one of the things to cut down on. I'm on HD and my limit is one cup per day, but my liquid limits pretty much keep me to that anyway, and, as I said, your wife's limit will probably be higher than mine because PD does a better job at removing stuff than HD.

I just need to vent, and I can't talk to anyone here, because then they'll worry about me.

Feel free to vent here anytime. We will listen, we will offer support, and (if the need arises) we will try and talk you out of doing anything bad. But we will never judge. In cases like your post, where you were having fairly dark thoughts about your (and your wife's) situation, you will get posts like mine trying to talk you round. But no one will be judging you, and if you choose to ignore them, still no one will judge. Your life is your own. But you can come here for help, support, or just to vent, whenever you like.

[Simon Dog]

Potassium levels are highly individual, and what really matters is what YOUR labs say.

I am a Home Hemo/NxStage patient, and the renal dietician told me to start drinking OJ to get my potassium up.

[kickingandscreaming]

I"m on PD and have no limits on potassium as my bloodwork is always normal for K.  PD sometimes does too good a job at clearing out potassium.  I also have no limits on the amount of fluids I'm allowed.  And, knock on wood,  have not had a problem (in a long time) with fluid buildup.  Every day I do one manual bag (dwell for about 1 hoexur/15 minutes) followed by 5 cycles on the cycler (2400ml/fill and a 1 hour/15 minute dwell).  At the end of my cycler treatment I get a final fill and then hold it for about an hour.  On the cycler, I use one 6-liter green bag, one 6-liter yellow bag,  and a 3 liter yellow.  This does a pretty good job of clearing an ind fluid regulation.

Hang in there.  This too shall pass.

[SweetyPie]

I was 15 when I started PD. After a bad infection which was 6 years later I switched to hemodialysis 3 times a week. I got the best of both worlds lol. But what I can say on personal experience is I appreciate hemodialysis a lot. I was really tired of setting up the machine every night sometimes I just want to straight to bed without having to worry and not have to go to bed at a certain time so I wouldn't be late for school it was mentally draining. Also all the clean up afterwards. When I started hemodialysis the only con I experienced is that you gotta leave the house but really I have gotten used to it and now with the warm weather coming up I probably won't mind anymore. The techs do everything you just lay there with a snack your favorite book or your phone and 3 or 4 hours later you are done. The techs are very nice and it keeps happy when you get an outing and actually talk to others. Also you are free to travel a lot easier without having to worry about the dialysis supplies.
I am sorry to hear that you are going through a difficult time. As I got older I see at times it can be hard on the family when dealing with a sick family member and how ur trying to keep a brave face for "us". I want to let you know that helps us out a lot and gives lots of faith and courage that it's not so bad after all. You just gotta not focus too much about the future because that can change in a minute. You cherish the now. I pray your wife's transplant is successful. Try thinking about a different dialysis option for her and see if that would work for you. It's okay to get down sometimes you are human and that's life. You got this and I wish you luck x10.

[justagirl2325]

The good news is that my kidney is a match and so if all goes well we will do the transplant this summer. But things don't always go well, and even if things do go well, even if we do have the transplant, that just leads to more problems of an entirely different sort, doesn't it?

I've been there too, watching my husband endure 3.5 years on dialysis and I cried a lot.  It's not normal. 

But we were lucky.  I was a match and we did the transplant and it has gone really well.  And no, no new problems.  You have that hope.

Hang on to that.

[Michael Murphy]

I’ve just finished my fifth year on hemo,  the reality of dialysis it’s a never ending battle with out any breaks. I deal with this by working a week at a time and every Friday I celebrate the completion of this weeks treatments.  Plus there is a enormous amount o research of less onerous treatments.  Some of these new treatments are scheduled for human testing in 2 years.  At 50 your wife has a excellent chance of being rescued by one of these treatments.  Google Implantable Artificial Kidney.  There are many forms of dialysis all have their proponents but the one you choose must fit your health needs and your life style.  Good luck

[Simon Dog]

I am coming up on 6 years.  I retired 2 years ago, but I still have a job  (D) that takes about 20 hours a week.

I'm not sure why, but I've just accepted it as my new normal.  I'm on "inactive status" at the xplant shop since my wife is recovering from surgery.

[Marilee]

When we were getting started with this, my hubby said, in a kind of hushed gestalt, "This is the way it is, every day, for the rest of my life." He felt a bit trapped.
So I cast about for what could possibly help and came up with a refrigerator. It's a little inexpensive one that I used to set up a snack station within "tether-reach" for him in case the PD machine alarms him awake and he's stuck there in the middle of the night. It holds veggies, fruits and cream cheese, and on top there's pretzels and Cheez-Its, a plate and knife. I think the fact that I did that helped his feelings: He could see that I was totally signed up. And when he gets a snack in the dark of the night, he doesn't feel quite so trapped and isolated.

[StarryNight16]

Thanks again, everyone, for your helpful comments. I appreciate what you've said, and I've been thinking about your words for some time now.

I come back to what Marilee said: "And all the while, in the back of your mind, you think this is a house of cards that could come tumbling down at any moment." That's how I feel, especially when there's yet another problem with my wife's dialysis (and that seems to happen every other day), complicated by the fact that she's also diabetic and so she's got to worry about her blood sugar levels as well. Goodness, there's just so much to worry about, and that's on top of all the normal worries with my job, the two kids, the housework, the yard work, the two dogs, and so on.

And then I return to what Paul said: "Every day you have, every thing you do is a bonus. Stop dreaming of a perfect life, no one ever has that. Instead be grateful that you are not spending every Saturday putting flowers on your wife's grave." And that's so true, Paul. I still mourn and grieve for the life we used to have, with activities and excursions and hikes in the woods and trips to the park. These days, it's an accomplishment just if my wife can get in her four PD treatments + shower + meals by midnight.

I wish things were different. I wish things were the way they were before. And I wish that I could just get over myself and stop being such a baby and just do the things I must do to take care of my wife and family. But it's so hard, so hard, so hard... bills don't get paid, clothes don't get washed, the kids aren't quite feral but getting close to it, and I fall apart at the end of the day once the kids are in bed and the house is quiet.

I wish, I wish, I wish I could just get drunk and let it all float away, or something, or anything. I'm hanging in there, and I'm drinking lots of coffee, and I'm only having one beer a week (because I've got to keep that kidney healthy for my wife), and I'm trying to stay strong.

On the one hand, I truly believe that this thing I'm doing, this donation of a kidney to my wife, is and will be the single greatest accomplishment of my life, that this gift will define me as an adult, that this gift is the true definition of what it means to be a man (in the best sense of the word). But can I admit to you that I sometimes resent my wife, not for asking for this kidney (because she never asked and because I give it willingly and without hesitation) but for asking me to do everything else?

Thanks for letting me vent. You're the only ones I can talk to.

[MooseMom]

StarryNight, are your kids old enough to do some of the household chores?  How much of your wife's dialysis and its consequences do they understand?

Of course you are allowed to admit that you sometimes resent your wife, although I reckon it is more the situation than your wife you resent.  I'm betting that you both feel a lot of resentment that this has happened and has thrown your life off course.  We all feel that way.

We all wish wish wish we could run away from all of this, so we do understand.  Who would WANT this?

As for defining yourself by donating a kidney to your wife, well...  You have written quite eloquently about how very very hard all of this has been for you, and one way to make it all stop is for your wife to get a new kidney.  Being her donor will mean that you can resume your "normal" life much much much more quickly, so ultimately, you win just as much as she does.  Your kids do, too.

[Paul]

Hang in there. Yes, it is hard, and the feelings you have are natural. But remember, if all goes well (and there is no reason to think it won't) they will do the transplant this summer and by next year things will be back to normal. True, your wife will be on constant medication, and you will need several check ups, but you will be able to do the hiking, travelling, etc. that you want to do. And remember too, that we are thinking of you.

And feel free to come here to vent whenever things get tough.

[cbatsea]

I was in your shoes...your life totally changes...but you make do.  We've been doing home hemo for almost 2 years...it was a HUGE life change...HUGE.  I was depressed and sad...and angry.  But, as we got into a routine, it's become part of what we now do. 

It's not fun...but it can be done...and you can still focus on other things...in fact, you SHOULD focus on other things....don't let this become your entire life!

Best wishes to you!  I understand what you're going thru.

[Simon Dog]

A key to home hemo is how you set up your treatment area.    You should have a good communication system in place to summon your care partner, a comfortable place to lay or sit, and things to do to while away the time while you treat yourself.    I set up a reclining bed in my room; put the room lights on a remote control so I don't have to reach the table lamp or put the ceiling light on a pull cord; use an overbed hospital style table for the laptop (Walmart online); and make sure I always have a bottle of water and an inventory of granola bars before starting.  I keep an extra blanket folded at the foot of the bed in case I get cold.  My "supplies cabinet" is within reach during treatment in case I need syringes (to flush air or do a defecation disconnect).    Every bit of junk I have with me at dialysis has a purpose.  It's like staging an OR - if you have to send out for supplies mid-procedure, you did not do your prep.

I'm an aging tech nerd and I found that udemy.com has wonderful courses for free, and am enjoying those now (just finishing a Python course).

The goal is to set up a treatment area that you can use as a relaxing refuge during treatment, rather than view it as a purgatory.

[Michael Murphy]

Your welcome I’ve had full time job now, basically Dialysys in center is rugged, clearly it is debilitating on Dialysys days,  she is going to need help so some of her cleaning tand cooking tasks are going to slip.  She is in a battle for her life.  She can’t do all the housold chores her self.  On dialysis days switch to paper plates, they don’t have to be washed.  Arange for food on dialysis days to be left overs or take out.  Her life has drastically changed and needs support.  Good luck.

[Simon Dog]

I wish you the best.   The journey is bumpier for some than others but is not smooth for anyone.