Has kidney failure changed you?

[Joe Paul]

All my life, things have tried to change me, diabetes, wives... life in general. I want to know, has this life of dialysis changed you?

[meadowlandsnj]

All my life, things have tried to change me, diabetes, wives... life in general. I want to know, has this life of dialysis changed you?

I have to say yes.  Before I got CKD I had such a busy life--I had two jobs, a lot of friends, a boyfriend, a very busy social life.  Now my life is completely different.  I remember I used to go to work at 9AM, work until 5PM then go to my other job from 5:30PM until 11PM then go out to play pool until about 1AM or 2AM with my boyfriend.  I worked on weekends also.  I think I lost some of my independent spirit--now I am tied to a machine so in a sense I am missing a part of myself.  But I really try to not focus on that and be grateful I have dialysis to keep me alive.  But then again I think to myself am I really living???   I am nowhere where I thought I'd be at my age,  I thought I'd be married with kids.  But I guess that's not what was meant for me.  I do okay when I don't dwell on all the negatives but I have my moments late at night when I can't sleep and I think of all the things I SHOULD be doing with my life and I'm not.  I'm not saying dialysis is the reason why or using it as a crutch.  I just feel now like I'm damaged goods.  I'll never be the same as I was when I was 25 but that's just how it is.  I always wanted to go to different places and do good in the world like the Peace Corps or Doctors Without Borders when I was young. There used to be a commercial on T^V back in the 70's about Appalachian people in the US and I wanted to help them and work with them.  I saw myself going back to school and learning to do things associated with these groups.  I really felt a calling to do this.  Then BAM I developed CKD.  So basically I feel unfulfilled in my life.  I'm really struggling to find a purpose in my life, why am I still here?  It's hard to explain.   Thanks for listening.   

[susie q]

Abso-freakin'-lutely!!!!
I used to have a great job that I loved... no more
I used to have an active social life with friends... no more
I used to be able to babysit my grandkids... no more
I used to be able to drink lots of beer... no more

Aww.. I'm getting depressed now... 

[goofynina]

The biggest change i see in my life is my energy level.  I used to run a daycare and watch, play and run after 8 - 10 kids 12 hours a day, now, i can barely handle 1, 

[Fox_nc]

I have time now to play on the internet and learn how to make new avatars - Never had that kind of time before 

[Rerun]

I can't remember what "normal" is, but I know this has changed my life for the worse.  The transplant helped, but it also had it's snakes.  I learned to trust God through all this.

[angela515]

Definately. I been dealing with illness since I was 12 yrs old, so i kind of got used to dealing with stuff and working my life around it... then dialysis came and that made it all the more harder, and basically took away everything. Transplant gave me my life back.. I had 2 beautiful children after transplant, had a great job, had my own place...lots of friends, a social life... life was good. Then my transplant failed, and dialysis was back... my life was gone again. I don't work anymore, I dont have my own place anymore, i'm a single mom now, and its very hard to have all the energy I need to take care of a 4 1/2 yr old and a 5 1/2 yr old. If it weren't for my kids, I probaby wouldnt of chose to go back on dialysis... dialysis is a bitch. 

[kitkatz]

I took the day to think about this question.  I took time to decide how I have changed inside. 

Dialysis has taught me that I am NOT superwoman, and I do NOT have to do it all, all the time.

[angieskidney]

I remember I was a very sick kid growing up but didn't know what was wrong with me. Then I had my transplant so I will have to use that transplant time as my "before kidney failure healthy time" to compare against.

I had a full time job slowly climbing up the ladder and finally got recognition and acceptance and finally a promotion (that I had to turn down when the kidney failed).

I was drinking with friends all the time always hanging out and had a good tolerance (I could drink any guy under the table where now .. can't even have 1000ml of any non-alcoholic fluid  ).

I had a lot more energy and was always busy busy busy building my life and saving money and got a car of my own. Now I have no car and live in a subsidized housing small apartment and am always tired all the time and just started back to work in Oct but only 4 hrs  / week.


Has it changed me inside? Well ... I guess I am less self-absorbed. I mean, I want to make a difference. But I don't know. After all .. I have been like this most of my life.

[Bajanne]

I cannot say that it has changed the essential me.  My schedule has changed a bit, but I am in the same job.  What I supposed has changed, is that I am more at peace with the thought of my mortality.  Not that I was ever afraid of death, but I didn't see it as something so close.  On dialysis yesterday, I dreamt that I was at my final moments and I had gathered loved ones around to encourage them in Christ and say my final goodbyes.

[angieskidney]

I cannot say that it has changed the essential me.  My schedule has changed a bit, but I am in the same job.  What I supposed has changed, is that I am more at peace with the thought of my mortality.  Not that I was ever afraid of death, but I didn't see it as something so close.  On dialysis yesterday, I dreamt that I was at my final moments and I had gathered loved ones around to encourage them in Christ and say my final goodbyes.

You are a good person! I like you!  

[RichardMEL]

I like this thread and some of the answers.

I think, like everyone, it has impacted horribly on day to day stuff.. in terms of just not being able to do some things like work full time, or travel easily (I used to go overseas 2, 3 times a year and have a bit of a travel bug) and of course things like the energy levels which affects everything - not just work and stuff, but more personal things like being able to interact well with family at times, to other things like well.. sexually etc... but we all understand that kind of thing.

Has it changed the essential me as in the person who I am? This is actually a hard one to answer I think. In some ways I think no, I'm still me.. but in other ways it does take a toll when you think about your mortality, and the (possibly) reduced and or limited future you have to cope with. Perhaps since diagnosis and specially starting dialysis, I'm not as long term thinking as I used to be. Like people say "oh you should save for when you're 65 and need stuff for retirement" and I honestly do not contemplate that far ahead (for me, that's 29 years away). Perhaps that sounds a bit morbid.. I don't  really mean it that way.. more that I am so much more thinking week to week, month to month these days. Sometimes people say "Well when you get a transplant..." yet I don't even try to think about stuff like that because I feel like it's expecting something that is NOT guaranteed... and I feel to even think of what I COULD do if/when I get a successful transplant.. somehow that's wrong, and also of course there's no guarantee I will get one anytime soon...

of course I have always been a conservative person by nature not usually known for flights of fancy (though I do sometimes just subscribe to "you only live once.. just DO IT" thing!)..

So I guess I am a bit mixed on this question. I'd like to think that I am still me, but I fear that some parts of me have been changed.

[kitkatz]

I partially answered this question before, but the more I think about it the more there is to say.

I think I am more thoughtful. I do not run pellmell into things, because now there could be a consequence I am not willing to pay.
I think about things more carefully. Should I do it? Can I do it?  Is there another way it can be done?
I have become more of a home person. I want to be home more (but that could be empty nest syndrome, too.)
I do not cook. I hate to cook, too much can't haves, and don'ts, so I let someone else do it and then I eat it.
I have a calm outlook towards death and the afterlife.  I used to feel I was running into it, now I know that it is coming, and I am ready. 
I have learned to be more patient with people.  I still get frustrated, but the little things I have to let go.
I saw the title on a book once that said: "Don't Sweat the Small Stuff and it's all small stuff!"  I try to remember that title when I am dealing with little stuff that makes me crazy.
I have changed in the way I look at doctors and nurses.  They are no longer, almighty and all knowing.  I consider that they are "practicing" medicine.  They are "Practicing" on ME therefore I am in charge of it.  I am more informed and know how to get what I need and want.  I will not let them experiment on me.  The best doctors are the ones that will treat me as the one who is in charge and they let me make the decisions after telling me all of the facts.  They also allow me to make decisions with which they may not agree.
I have to remember to let go and have some fun. 

[MattyBoy100]

I have to agree with RichardMEL and KitKatz and add some points of my own:

I have to think about whether or not I want to spend time on certain activites cos if anything involves much walking about or use of my legs then I would rather just not bother and sit at home.

I don't like alcohol anymore and I used to drink like a fish.  Booze tastes odd now.

I have had to take lower - paid positions at work cos I am not as physically capable as I used to be.

I am earning less money so don't have so much spare cash to spend on ME the way I used to.

I used to think that now I'm nearly 40 (I`m 34). I've made it without any major illness ... then WHAM, KIDNEY FAILURE!!!

I get more snappy with those closest to me.  I know when I'm doing it and really don't mean to be that way.

I tried to continue my life after being diagnosed as if everything was normal.  I couldn't do it, was physically too demanding.

I`ve gone from being strong and independent to weak and having to rely on the nurses and Docs for my care.

Pain used to be something quite rare.  Now, I live each day with a certain level of pain somewhere in my body.

I used to be a bit arrogant and full of myself.  Kidney failure and all that goes with it has been a humbling experience.

I used to have a very active social life.  Now I'm either working or at dialysis or travelling between the two.  I like to stay at home now on my days off.

I used to have no time for the "common person" at work.  Now, the "common people" mean so much to me cos they all come up and ask me how I am and show concern when I have been off work sick.

There's probably a lot more I could add but I think a lot of us has probably gone through the same thing in that we have become a shell of our former selves.  We're still basically the same people but without the energy we used to have.  In a nutshell, that's how I feel I have changed due to kidney failure.  I feel hollow and empty.

[Fighter]

I would have to say yes, I think it actually changed me for the better.

I feel like I've developed a new awareness for the fragile nature of our lives, of our bodies, even our entire civilization. I don't take my job, my education, my health (apart from my kidneys there's nothing wrong with me) for granted anymore and I have a greater appreciation for the fantastic people in my life. Kitkatz mentioned the small stuff, I used to be a pretty big small stuff sweater but nowadays I'm much more focused on the big picture, I know it sounds as hackneyed as it gets, but dialysis has put a lot of things in perspective.

I truly believe that what doesn't kill us makes us stronger. I believe dialysis is making me stronger.
In the immortal words of Christina Aguilera (umm, yeah...), I say "Thanks for making me a Fighter!!!" 

[RichardMEL]

I like the small stuff comment as well.

Life is too short and too important to waste energy and stuff on little things.. with the "big" things people in our situation have to face and deal with (cope with) on a daily basis, somehow those small things are just NOT worth sweating over. I totally agree with that one.

I think Kidney Failure is totally one of those things that you just don't think about until it happens to you. I abused a former girlfriend for not showing enough support to me when I felt I needed it a few years ago (back when I was looking down the barrel of starting dialysis). I was offended as she had a sister who has had 2 kidney transplants, so should have had some idea of what I was facing, and I felt like she gave me no kind of support, empathy or understanding for what I was facing...

and then I thought about it later and figured out that it's so so different for those around us - even those who try their hardest to understand (and here I include a lot of the people reading here who care about and for loved ones who are on or facing dialysis)... perhaps I was unfair to that gf.. I don't know.. it's in the past now (and ironically, though sadly, her father also now is on dialysis and I think she has learned some more about it).

Definately I have an added apprieciation for how fragile and important life is, and how short it can be. I definately am more more of a "do it now" kind of person since who knows what the future may hold... but no I didn't have 5 beers tonight because I felt like it! I had a 300ml bottle of water !

[angela515]

I do not cook. I hate to cook, too much can't haves, and don'ts, so I let someone else do it and then I eat it.

I have a calm outlook towards death and the afterlife.  I used to feel I was running into it, now I know that it is coming, and I am ready. 

I love to cook, (or used to anyways..) but I have slowly stopped doing it, because I can't have anything I love anymore..  My parent's know that I am supposed to watch my phosphorus intake, but they don't seem to understand the seriousness of it if I eat too much over time. Since I live with my parents right now.. I kind of have to eat what is cooked basically, or my dad thinks i'm "wasting food". I try to cut portions down to very small if I know its high in phosphorus... 

I think that's very brave when someone looks at death and is ready for it. To tell ya the truth, I am scared of death... I know it's going to happen, and who knows when... I've dodged it a few times since I was 12... so I must be here for a reason, and to me... I think the reason is my 2 children... there only 4 and 5, and I'm scared for them I guess. If I were to die today.... my kids lives would be turned upside down and sent to the garbage. As they would be sent to their father probably since he is their father and alive still... although he is a dead-beat dad, don't pay his child support... he lost his job a few weeks ago and says he is now living on the streets... I don't want my kids to have to be sent to him, or to a foster home... and I can't just put in a will I want my parents to have custody, because the law doesn't work like that unfortunately...and their father wouldn't want whats best for my kids (which would be to stay here with my parents) he would want to be selfish and have them even when he can't take care of them... financially or emotionally. So I worry about that mostly when I think about death... and that scares me more than anything... if my kids were older like 18 and such... I wouldn't worry so much probably... but I would definately still be scared to die.. as I just don't want to die anytime soon... I do however have it set in my mind if I have to go back on hemo when I am older (like anything above 50 probably)... I would rather just let life take it's course, because to me, hemo is death... I felt like death while on hemo... however I would do PD after 50 if I was allowed... until I couldn't do it anymore.. then I would have no choice but to except death, huh?

Sorry for the long response... 

[Nan]

This has been one of the best logs I have read, because it "reinforces" how I feel and what my life has become since kidney failure.  Some of your thoughts were not even clear to me until I read them from you. That is why this web site is so good for us! I battle with depression, since I am having so much trouble adjustin to  my new life, I don't feel like I am that "fun" person anymore, because I am always tired.  I do have some good days, where I find extra energy, but then I can never predict my bad days, where I prefer to spend in bed sleeping. I used to be the "family fun organizer", now everyone waits to see how I am feeling and IF we can all gather together for a family event.  I said when this all started, that I WAS NOT going to let dialysis take over my life!....sad to say....it has, it is just not the time spend at the clinic.....it is how I feel after the treatment also.
Yes........I do hate dialysis!

[MattyBoy100]

I know how you feel Nan, last Weds I arranged to meet with someone on the Saturday.  By the time Sat came, I was too tired and really couldn't be bothered to meet up.  I did go out and was glad that I kept my commitment but was also glad to be home again after a few hours.  I have learned not to make arrangements so many days in advance now cos I never know how I am going to be feeling and usually decide on the day or the day before if I want to do something.  Just take one day at a  time!

[paris]

Great thoughts from everyone!  So many of my own feelings were spoken in the above posts. I was the one who did it all - 4 kids, always the "band mom", pta, church, cooked for 100 people every Thursday night, everything always had to be made from scratch, taught school, made every important dress in my daughters lives -from baptism gowns to wedding gowns.  I never said no to anything or anyone. No problem, I can do it.  Well, I can't anymore and I now realize the sun still comes up in the morning and the earth doesn't stop revolving because I am not doing what I used to.  I now listen to my body, enjoy little things so much more. I do hate not just jumping up and going, but I am ok with the changes. Not afraid of death - don't think I like the process, but as I tell everyone " I know where I am going" so I have no fear.  I do not like change, but am trying to accept all the changes being thrown at me.  It has been very interesting reading how others feel. Thanks for sharing

[kitkatz]

I think when Death rides on your shoulder every day, you tend to change.  I know the differences I see in my self are sometimes so deep they are hard to express. 

[Lucinda]

Hi Joe Paul,

I am new and I am just working my way through this site and although I haven't started dialysis yet, I have lived with renal disease since I was 21 - now 45.  I am having my graft access done in a couple of days and starting dialysis early next year. Even knowing this time was coming changed my life.  Although I don't know what to expect of my life now, I still feel like I have fitted 80 years into the last 20.  I was also dyslexic and worked hard to overcome that.  I have written a number of books and until recently worked as a property editor at Australia's leading newspaper.  I am now general manager at a large strata company and I am determined to keep working by doing nocturnal dialysis.  My kidney problem is hereditary and I have watched a number of my family members go through dialysis and kidney transplants so I have an idea what to expect.  I also have Menieres disease and have that under control for the time being.  I just hope that I can tackle this disease with the same positive attitude and I hope to be able to continue working a pretty normal job.  I'll see what happens and come back to you and let you know if it has really changed my life. 

[kevno]

Never known any different from the age of six. I feel I have learned a lot from being a renal patient seen a lot missed a lot. I just had that 5 years of fun with my Transplant. When I was told to go out and enjoy my life for the transplant would not last. It did hang on for nearly seven years. Last two hell.

The major change as been going onto Haemo from CAPD! Had to quit my Job! Nearly lost my leg! Heart Attack! EPS! Plus going to Bloody Hospital three times a week!

[Sluff]

Of course CKD has changed me.

 I am in the beginning stages of FSGS and hoping to go in remission, it does look possible, so i feel guilty feeling the way I do about some things. The tiredness, nauseousness and depression is probably what gets me the most.

 What some of you have been through makes my situation almost insignificant, but I needed the wake up call I guess. I could really care less about my mortality,(no pain please) but Like most of you I am not near where I expected to be in life.

It has changed my ability to work the way I used to which in turn affects my income. There are times I'm just exhausted and can't do things with my son like I used to. My mother in law thinks I'm lazy. Which effects how you feel about yourself. Some of the things I used to do just are not fun anymore because your just too tired.

When I received my diagnosis I wasn't even surprised, I just said it figures cause it came at a time in my life where I was just crawling out of one hole, and thats just how my whole life has been. I get over a bad period of my life just in time for another. Everyones story on IHD has touched my heart in a positive way because a person starts to realize that they are not alone, and there are others out there that have it worse, and that is the best therapy in the world.( not that others have it worse but that others have perservered through more)

I thank all the IHD members who have laid their lives out for everyone to see, it is a gift to the reader sometimes.

[jonn r]

damm i dont even know were to start....but all i can say is i remember when i did'nt cry everyday....is this really living ....just want to  all day long......