This Isn't Life

[Katie07]

I've only been on dialysis two weeks, but I've decided, that this is not a quality of life for me. I have so much respect for those of you, who hae been doing this a long time, and continue. Being hooked up to a machine 5 hours three times a week is bad enough, but then I got the "diet."  I have been anorexic on and off for 25 years. Finally, I was enjoying food, and not caring. Now they've taken that away too. I know, a lot of you will just see this as being a baby, and whining, and that's okay, because it probably is, but for me, it's too much. I've decided to stop on Monday, and see what happens. I know what will eventually happen, but even if I have a month, it's better than endless years of this. I'm sorry to be so negative. You've all been so helpful, and I hope you continue to do as well as you can.

[cassandra]

O Katie I wish I could hold you in my arms. I know I don't know much about anorexia. I thought it could be caused by depression and a feeling of losing or loss of controle?
If you just started enjoying food again than why not seriously look into home hemo? If anything it gives you controle over when you D and how long you D, and what temp the machine is on. But mainly it gives you the opportunity to eat and drink what and when you want. And I personally have a problem with whiny older people whingeing about D because thát's not fair etc. So I'm very happy not having to see or hear them in clinic.


I also think it might have to do with what you expect from life in the first place.


But than again I might be wrong. Please take it a day at a time.


I wish you lots of love, strength and wisdam Katie, Cas

[Cowdog]

I strongly suggest you give it six months before making such a permanent and extreme decision.
The diet isn't as bad/strict as they are telling you, I eat about what I want but in moderation. If you give it some time and work on how you perceive dialysis it's not so bad. There are times now when the clinic is my "Happy Place".

[iolaire]

Hi, I've not responded to your previous posts.  But when I read them in the past I felt a lot of the side effect you describe are things that dialysis should improve.  Specifically this line sounds like all the side effect that lead up to dialysis and improve with treatment  I'm not even up to four hours yet, but the itching, difficulty breathing, and fatigue are awful.  Well on dialysis the fatigue can still be there especially after treatments but overall your energy should improve as toxins are cleared from your body.

As @Cowdog says the diet is not always as dramatic as they describe.  Many of us start dialysis with residual kidney function that allows us to transition into the diet.  People who have been on dialysis long term generally have fully adopted the diet so that they are able to live as full a life as possible.

Your thoughts of ending dialysis treatments is not an uncommon one.

If you do choose to stop dialysis please investigate hospice care as the process of dying from kidney failure is a painful and uncomfortable process. 

Here are a few threads on stopping dialysis so you can envision what you might go through:
http://ihatedialysis.com/forum/index.php?topic=33736.0
https://ihatedialysis.com/forum/index.php?topic=34248.0
http://ihatedialysis.com/forum/index.php?topic=32450.0

[Riki]

I respect your decision, as it is your life, and you can do with it what you wish.  However, I think you may be giving up too quickly.  Two weeks is not long enough for the full effects of dialysis to take hold.  You need to be on for at least a month before you start to feel better.

As for life on dialysis, I can attest to it as living.  I've traveled, and will continue to travel while on dialysis.  I'm currently in college, in a 2 year Tourism and Travel Management program, with hopes of starting my own agency, specializing in disabled and dialysis travel.

I've been at this almost 14 years.  There are others on this site who've been at it longer tham me.  I've figured out how to balance life and dialysis.  That includes food.  There is little that I avoid when it comes to food.  I believe in moderation, and only truly avoid things that I know will be an issue, like chocolate (though, I do indulge a bit with that, especially dudring holidays).  It's figuring your own groove, and it takes more than two weeks to get it done

[Simon Dog]

I suggest to fully explore the options of home hemo and PD before giving up.    PD, if it works for you, can offer dialysis with much less of an adverse impact on your life.   Been there, done that.

I would actively hate D if I had to go in center.  Doing it at home moves into the category of "just one of those things I have to do".

[MooseMom]

You whine all you like.   

[kickingandscreaming]

If I recall, Katie is blind, so doing home hemo or PD would be a stretch.  I hope you give it a bit more time.  It does take time to start feeling decent from the dialysis.  You owe yourself that luxury. Whatever you choose, I support you.

[Riki]

If I recall, Katie is blind, so doing home hemo or PD would be a stretch.  I hope you give it a bit more time.  It does take time to start feeling decent from the dialysis.  You owe yourself that luxury. Whatever you choose, I support you.

I'm legally blind, and have been for most of my life.  I was able to do PD for 4 and a half years.  I had my mom's help, but I didn't really need it.  We just took turns setting up the machine.  If you can see colors and shapes, PD is doable

[kristina]

Hello Katie,
I feel for you and understand that starting with dialysis two weeks ago came to you as a terrible shock, not only to your body but also to your whole being.
I went through such a shock when I first started with dialysis which was over three years ago and it was very hard for me to begin with. But I persevered and after a while I began to understand how to keep it all going for myself with liquid limitations and my vegetarian diet and these days I am very glad that I persevered and at this moment I feel quite balanced about my need of dialysis and I feel much more balanced about my life on dialysis and my being on the kidney-transplant-waiting-list. Just imagine, before I started with dialysis I was not yet able to read music directly from the scores and now I have learned in my own time, how to read music. Why? Because dialysis helps me to have my blood cleaned and this helps my "grey cells" to come up with some ideas and dialysis also enables me to continue learning, because of my cleaned blood, which helps to keep my "grey cells" as active as they possibly can be. And this cleaning of my blood enables me to read long forgotten music-scores and read through some melodies by long forgotten composers. Reading these scores might nor be everyone's favourite pastime and of course, we are all different and perhaps you have different likings, but I only mention this here, because if you won't "sit out" this difficult dialysis-beginners-time, you won't give yourself a fair chance to develop your own favourite pastime, whatever it might be.
I keep you in my thoughts and keep my fingers crossed for you and I do hope, we can continue to exchange our thoughts for a long while here on IHD.
Best wishes to you from Kristina.

[Michael Murphy]

You are not whining but going through thr start of dialysis trying to get your mind around the horrible change in your life, almost every one goes through this.  To be honest Dialysys sucks rocks.  I spend 18 hours a week in dialysis activities leaving 150 hours for having a life.  Then I went through the my this never ends phase, I now worry about dialysis one week at a time and every Friday I celebrate that I am done with dialysis this week, next week is next weeks problem.  Finally there is hope on the horizon there is multiple research paths being followed which may make this a minor inconvenience instead of a major pain in the butt.

[kristina]

P.S.
I nearly forgot to say, that I only mention the reading of music-scores, because once I observed in the library of the Royal College of Music a music-student reading a music-score in Braille and I was completely fascinated. Of course we talked for a little while and she told me that she also played the piano and she also told me that reading music scores in Braille  is not easier or more difficult to learn than to learn reading print music.
I am very glad that I met her and much later I went to listen to the concert she gave and it was absolutely wonderful. I felt at her concert, that being blind, she had an extremely sensitive connection to music... perhaps even more sensitive and more intensive than people who can see ...
Best wishes from Kristina.

[Charlie B53]

Katie,  You are allowed to whine in here.  Venting frustrations is one of the reasons Epoman created this place.  So we can rant and rave all we want.  To vent our frustrations of LIIVING with Dialysis.   Notice how I said LIVING WITH, and not simply giving up?

Think about that for a minute.  Giving up is easy, you don't have to do anything.  But it is permanent, there is no turning back.

Living is learning.  Learning how to adjust, how to make this work FOR you.  Sure you will have to make some adjustments in your life, but in time you will become used to the schedule, get used to eating far more responsibly, healthier even.  And that's a change that doesn't hurt, physically.

Mentally, your will go through a whole series of emotional upsets, many stages until one day you finally come too acceptance.  That in order to continue LIVING you will need to accept to making some healthier changes.

2 weeks isn't long.  If they are fortunate to have an employer that grants vacations, people can take two oweeks off and before they know it it is time to go back to work.  Two weeks flys by way too quickly.

You need to make a commitment to yourself that you will give an Honest effort for a year.  Really try to make this work for you. After that year you can always quit, stop treatments and die.  Why rush now?

If you are in physical pain then talk to your Dr.  If he/she isn't responsive then ask to see a Pain Speciallist.  There ARE specialislt that can help make a positive difference.  You have too ask to see them and NEVER give up until you get an answer.  If you fail to get an answer then come back here and ask us, maybe someone here can suggest a better contact.

You are young yet and still have a lot to learn.  Please don't give up so easily.

Take Care,

Charlie B53

[GA_DAWG]

You might try talking to couselor. I understand how the sudden diagnosis of CKF and the quick transition to dialysis can be depressing. Depression can cause people to make snap judgments from which there is no change of direction possible. One thing to consider is the effect the inevitable decision to stop dialysis will have on those wh love you. Their grief and despair will certainly not be solved by the wrong decision. Whatever you decide, I wish you peace of mind.

[LorinnPKD]

Katie, you've been in my thoughts this past week and my heart goes out to you.

The diet restrictions sound so overwhelming at first, but as you start noticing trends in your labs, you can absolutely adjust your diet a bit and still make things work.  You can still enjoy food.

Years ago as I slid through the stages of kidney failure, I'd decided that dialysis wasn't for me.  But it turns out that I have a pretty nice life now and I'm glad I stuck around.

[Rerun]

It is very tough at first.  Remember you can quit at any time.  So If Monday comes and you don't want to go , don't.  But, if Tuesdays comes and you decide you want to go call and see if they have a chair.

You are in control. 

[Charlie B53]

I'm sad that Katie hasn't reposted.

I am afraid that she may have already made her decision.

Katie, PLEASE, repost.  Let us know how you are doing.

We do care.

[UkrainianTracksuit]

Katie,

I am concerned you haven't posted as well. It is true, you are in control, and can make your own decisions, but at least, give it a little more time.

When I was told I was heading towards kidney failure as a young person, I decided that conservative care was the best option for me. Like you, I knew the end outcome and thought dialysis was no life at all. I watched my grandfather on dialysis prior go 3x/week for 4 hours. Being his caregiver, it was so difficult to tell him he couldn't have some of his favorite foods and life just seemed not worth it, at least, for me.

When kidney failure came, I had to make a decision and I chose in center hemodialysis. The first few weeks I was absolutely numb to emotion and just cried anytime I was alone. Was this life worth living? How could I go on like this? All I did was go to dialysis and come home to sleep. Quality of life was not there. I wanted to die. Further, I felt so isolated as no one really understood what I was going through.

But you know what? After some time, I started to feel better and had more energy. I got into a routine and planned fun things on non-dialysis days. I worked as well, which I know, is not an option for everyone. Fun things could be anything I enjoyed from going to a park I like to just going to fun events. While a lot of my fellow HD patients were older men, we developed a camaraderie and I looked forward to talking to them in the waiting room.

As for the diet, yes, it can be restricting but once your dietary blood work comes back in good levels, you will see you can add your favorite things in moderation. There are so many good recipes meant for dialysis patients that make you forget about what you "can't" have. It is fair to say I never went hungry on dialysis!

While it is true that I do not share many of your issues (ie: being blind), my suggestion to you is to give it a little more time. You have been given good advice here and it is true that it is your decision. Two weeks is not enough to develop a routine or feel the benefits of dialysis. Please take good care. People are thinking about you!

[Paul]

Posted in wrong thread: moving post.

[Katie07]

Thank you, to everyone who offered me advice about stopping dialysis. I have thought about all of your suggestions, experiences, and comments, and so, I don't think I'll stop tomorrow. On Friday, I told my doctor that I was stopping, so I don't know how she'll react to my ambivilance, but I will give it more time. Part of my issue, is that so many people are inconveniencing themselves to help out with my guide dog, especially. I think, that when I go to the outpatient clinic, it will be easier on everyone, if I leave him with someone, while I'm at dialysis. That way, no one has to stay with me to take him out, and I know he'll be safe. I hope this works. I know, I won't do this forever, but I will give it more time. Again, thank you all.

[GA_DAWG]

I am happy you have changed your mind, even if just for now. As to those people you fear you are inconveniencing, consider how much more devasted they would be by the outcome of your stopping. I know we all sometimes feel we are inconveniencing those around us, and I can understand you may feel even more that way due to the other challenges you face. But I believe were you to ask those people, they would all agree they are much happier with you in their lives than without you.

[kristina]

Hello Katie,
I am so glad that you give it more time! It makes my day!
And if you have any questions about dialysis, diet, liquid-restrictions etc., please feel free to come here, we are here to help.
Once again, I am so happy that you give dialysis more time and hopefully your body settles into it very soon.
Good luck and best wishes from Kristina.

[kickingandscreaming]

And think how devastated your dog would be if you were no longer needing him/her, and if you died.  We all have networks of those that care-- even if you tend to be solitary.

[Simon Dog]

Dogs are more sensitive that one can imagine.  My wife was hurt in an auto accident (recovering at home) yesterday, and her dog that normally follows me to the man cave when she goes to sleep would not leave her side.   When I picked the dog up from my daughter's car at the ER, he was straining to look at the hospital and pulling towards the entrance.

[Charlie B53]

Wife won't sleep in the same room with me but on rare occasion.  Even with my CPAP.  My snoring and sleep apnea was that bad.

Our Dog takes naps with me.  If I say 'Nap."  He heads off to my bedroom.

Now he sleeps with her at night, since she developed this little problem in her head.  There is a long word for water on the brain.  It may be another month before the Dr's get it sorted out and a drain installed correcting the pressure and she returns to her normal cranky self, but the DOG KNOWS something is wrong with her and stays with her every night. 

He thinks it is his job, not only to protect but to console.