Anyone ever get frustrated?

ive been on daily home hemo for about 4 months now and sometimes i just get so frustrated and annoyed with doing it EVERY SINGLE DAY!!! im only 14 and for the most part a normal teen up until i have to go home and “hook up”. its the worst part of my day and i find that as soon as im done with treatment im already dreading the next one :? anyone else ever feel like this?

Hi Lizzie,

when I was your age and on dialysis it was the same. Its crazy, its insane and I didn’t really feel like a 14 year old. Its even harder when you need to go to school and/or spend time with friends, BUT keep in mind that your still young and growing up and you have great support with you right now so be proud about that.

The older you get the less frustrating it will be for you so don’t give up and take it a step by step at a time. Try to look at dialysis something that will keep you going and going…

If possible, do things like playing video games with a Playstation portable or watching a movie, or maybe doing your school work while on dialysis, The key is to spend time doing other things while you dialyze so you don’t have to get so frustrated.

Hi Lizzie
I think you a very brave and it is amazing to hear about you doing this with your Dad. Of course it can be extremely frustrating and Gus has given you very good advice about using your time usefully on dialysis. Getting into a routine doing homework or something creative is a great idea. Doesn’t always work though, I love beading and foolishly thought I could make some stuff while dialysing. Hah, one handed, no way! Beads went everywhere, yikes!
Hang in there, kiddo, things will get better. 8)

I’m sure we all get frustrated at times. IT’s only 4 times a week for me, but I still think “ho-hum, another session”.
I also get frustrated thinking about all the travel I want(ed) to do, which looks most unlikely now, at least for the near future. :frowning:
BUT…when I see all the young people on here on Haemo (or P.D.), I feel sorta guilty, as I am 57 & had several good decades of “sun & surf” etc., before succumbing to IgaN. :oops:
NOt that I wouldn’t have liked several decades more… :lol:
Best of luck with it all Lizzie. Hope you get a transplant in the near future & lots of good years out of it!!!

Sometimes I wonder, you had a few great decades of fun and liberty…isn’t it harder for you older guys now that you lost it?

Isn’t it more frustrating? For example, for most of your life you’ve been healthy and you’ve been enjoying it much, but now that this new lifestyle hits in doen’t it put you is states of depression? On the contrary, we younger dialysis patients are growing up with the disease si I kinda wonder maybe we accomodate the illness more easily than the older patients? Just a thought… :?:

Btw, Bear…beeing here and talking about it really keeps us going. Lets you know that your not alone at all and we share the same pain as you do…

I don’t think so, Gus. First of all, even though I had kidney disease for 25-plus years, I had a varied career with a bit of adventure, raised a family, etc. I have things I can look back fondly on. I knew that someday I was at high risk for kidney failure eventually. But even though that finally happened when I was 49, I don’t feel that I’ve lost that much. I look around me and I don’t see acquaintances and relatives that have died of cancer, heart attacks or accidents or suicide along the way. I don’t see a friend who died of kidney cancer when he was only in his 30’s. I also see “normal” people who can travel, who have a lot more disposable income, who have their big screen TV’s, fancy sports cars or SUVs, their houses and their fat retirement investment accounts, etc., but I find they are generally no more happy than any of us. It’s all just more “stuff” they have to worry about keeping. To some extent, I think disposable income leads to disposable lives.

I’m getting optimal dialysis at no cost to me, unlike many people in third world countries who don’t get it at all if they can’t pay. I’m not about to embark on a trans-continental tour, but I at least can ride my bike more now than I could when I was pre-dialysis. I get my little pleasures close to home. You know, little pleasures are just as pleasurable as big pleasures, in the end.

Sure, sometimes I wish I could just let myself fall asleep on the couch while watching a movie on TV at night rather than having to get up and put myself on dialysis at 10 in the evening. Sure, I face risks that healthy people might not have, but who doesn’t have health risks at middle age anyway? Sure, I have frustrations with it like everyone else, and sure, some days I feel a little down and sorry for myself, like everyone else… but on the whole, it’s not that bad. A positive attitude is what we need doing this, at any age, young or old. It’s all the same. There might be a bit of healthy rationalization in this, but in a way, I kind of feel having kidney failure has made me grow as a person. When I’m feeling low or frustrated because of nightly dialysis, I just make myself a nice espresso, or have a nice glass or wine, have a robust Canadian beer, or eat an orange, or something… and I just savour being able to do it without worrying about keeping to a fluid limit or to a severely-restricted diet :slight_smile:

I thank God that I can even do dialysis. It’s an incredible gift. My kidney disease started in the first decade that dialysis became practical and widely available in North America. It could easily have come before.


Life is what you make of it and hey, we are all still here aren’t we! 8)

Agree with your sentiments exactly, Pierre. Knowing how to enjoy life is a real art and does not have to be pricey. And it is truly remarkable that we are still here via dialysis while others are gone. I wonder had I not had this roadblock of medical issues and loss of energy how I might of lived my life differently. But would I have lived it as well appreciating every good moment?

I recall I was at the height of my life having dealt with things of the past and eager to go on to my best days when out of the the blue… kidney failure. The ensuing years have been consumed with kidney issues, yet at the same time, my every day is productive as I won’t accept any less.

We choose what we will do in a day out of what we are given to choose from. We would all like to have unlimited choices, but life is really not that way. It may seem like some have more choices than we do, but everyone has some type of issue to contend with. So, let us choose and choose wisely, because one thing we all have in common is, the day comes when the chances run out and then we have to answer for our choices. Did we waste our lives or live them to the fullest we could? Did we think only of ourselves or try to make life better for others? Also, I think it is really true that when one is young it seems like there is endless time to do all the things one wants, but as the middle years approach, things reverse and one is painfully aware that time is short to finish the race.

Now Beachy what is this Samba band?

Hi Jane.

Nice to hear from you, and not only because you agree with me :slight_smile:

I think I’ve become a lot more philosphical since I’ve been on dialysis.

We are all in this together.

I’m curious about Beachy’s photo too :slight_smile:


G’day…I was looking to see if Beachy was actually in that band! :smiley:
Byron Bay is the ‘alternative lifestyle’ capitol of Oz. I used to love spending weekends there in the Kombi & surfing the Wreck, Broken Head &c and enjoying the cafes & restaurants, or just take-aways. :slight_smile:
Small Town; big personality - always festivals or something going on. It has a big jazz festival every Easter for e.g. Beachy lives down the road from it in another small Northern Rivers town. Northern Rivers (northern NSW to S.E.Queensland) has to be one of the most beautiful places to live on the planet, certainly in Oz.
…back on topic. NO, I don’t think it’s worse for us, as I think Beachy & Pierre pointed out. I can’t imagine growing up with it! :shock: But as a relative oldie (No! I won’t have that! :lol: ) I can handle it. I’d rather be without it, of course, but c’est la vie’. I am so much better on Haemo, that the only real frustration for me is the lack of freedom to travel. Trips I thought I might make when semi- or fully- retired now have the mental line drawn thru them. Well maybe only until the NxStage heads this way.
I reckon the nocturnal prog. we’re on, supplemented by an NxS to take-away for hols would be fine. I’ve mentioned before that our unit is thinking of getting a campervan set up for haemo hols! :smiley: …but an NxS to actually fly away somewhere with, would be a real bonus! 8)

Doh! that was me, or course. Senile old fool forgot to log in again :smiley:
I’m starting to get more sleep on nocturnal (still not enough tho!). I have the T.V. & cable box in there (so then you can fall asleep in front of it, Pierre), as well as a cheap dvd player. So I can settle in & watch rugby or whatever, especially tonite (Fri.) before going to sleep. And even if I do need an hour or 2’s sleep the following morning, I still pretty much have my days free. I only work 3, so I’ve got 4 off. Once I’m a bit better on the days off, not just the work days, then I’ll be getting back more to my old lifestyle. I’ll be able to do chores (what fun! :? ) and help my poor wife out a bit more…but most of all, get to the beach more often again & other stuff purely for pleasure! :smiley:
BY the time my mate gets back from the U.K. (his father died), I hope to be meeting him for a surf. First I have to lose more weight & get a ‘shield’ made for my fistula arm. What I’m saying again here is NO, I’m not too frustrated & getting into dx as an older person at least allows you to look back… there’s a Zen saying about living a good, decent life when you’re young; then you can look back & enjoy it again when you’re old. So that’s sorta what us older dx folk can do, while still having a reasonable life anyway! :lol:

Yep that is me drumming my little heart out. I love it, get hot and sweaty and forget myself dancing and drumming for a few hours. I get to have fun with people from all walks of life l would not have usually met whist working full time as a teacher. We do lots of festivals and events (the ones at night are especially good because we have crazy costumes with lights all over the place). I love seeing the expressions on peoples faces when we come by. In fact I reckon it is the most fun you can have with your clothes on! :lol:

Seriously though, as others have said and I hope my photo and Bears illustrates, life can still be good and sometimes even GREAT! The main 2 reasons I went for hemo over PD was because my passions are being in the water and drumming, so I knew the extra effort involved in doing home hemo, especially overnight, would be worth it. My improved health and being able to maintain a wacky lifestyle have proved this was the right choice.

Beautiful pic Bear! By the way, our next events are Bangalow Billy cart Derby and Lismore Lantern Parade. Come on down!

Cheers 8)

Ah, so it was you. I thought so, but it does look a little different from the shot of you cannulating! :smiley:
I wish I could say it was me on that wave - but I’m goofy-foot anyway! :lol:

Hahaha, wet dreams… :oops:

But hey, you can still grab a yacht or fish out there?

Funny you should say that, Gus…I have no interest in fish (other than eating a few each week :smiley: ), but I’ve been thinking of going down & hiring a Hobie-cat on the Tweed River or the Broadwater. Good fun, but my first love will always be wave-riding & I still intend to do it once again!

No sword fishing or shark hunting? …

Something I wonder is, what percentage of the time one feels well with daily dialysis. Health with in-center dialysis is so weird- truly the yo-yo effect for me. One minute I feel so lousy it seems like the end is nearing. Then when I recover from the txs, I feel completely well and wonder how I could feel so different. It is the strangest life of highs and lows that it amazes me how I have lived it. Any improvement would be incredible to me.

Before while in-center…it was a yoyo ride till the next day I was off barely began to feel better…just like you, sometimew it felt I was gonna die at certain points…

But now with daily-short it all has changed for me…I felt great before and after each treatment at home and I spend time doing more than before…

For all of you patients in-center reading this please take my advice and get out of that clinic and start home dialysis…you’d be glad you did!

ROFL, I would never have guessed that was you – so different from your other pic. A shool teacher? :shock: :lol: You look like you are having so much fun!! :lol: :lol: :lol:

Sure am Lorelle, mild mannered teacher/librarian by day, mad samba drummer by night! We follow the rhythm patterns of Brazilian Samba, but don’t do the G-strings (for obvious reasons)! :lol: