What hurts the most..

[fluffy]

When i first started pd i didnt worry that much about kidney disease at all, if i played my cards right i could pretend i wasnt sick at all. But now after years of pd and pd failing on me, and numerous peritonitis infections it kinda hit me how sick i am, and that even with hemo im pretty much dying. thats a realization that really hurts. im 24 and theres still alot of stuff i wanna do.myfamily keeps telling me im gonna get better and im gonna be ok, but to me it looks more like they're mostly trying to reassure themselves. It hurts the thought of dying young and leaving so many good caring people behind hurts. im sorry if that was depressing but it was just something i had to say and im scared.

[brenda]

I hear ya Fluffy. I am 42, been at this a long time too and probably don't have a lot of years left. I just try to do the best  I can with the time I have. I have defiantly changed my priorities in the past few years. Keep your chin up. It is very hard for families sometime to accept the realities.

[Meinuk]

Fluffy - you have to look for little victories now.  The big picture can really be overwhelming.  Praise yourself for surviving.  Every dialysis session that you make it through with out an alarm, or infiltration, or crashing or cramping - those are your victories.  Dialysis sucks.  We all know that.  We all face our mortality every day and wish that we could turn back time.  You are alive now.   You are a part of my life, and the thousands of people who read these posts.  Your pain is our pain. 

I've had days when just stepping outside of my apartment was a victory.  And I've had days when life was so normal, I forgot that I was sick.  That is the roller coaster that we are on.  Your family is trying to support you  - they love you.  Let them love you.  We may never get "better" but we will have better days.

[Rerun]

Fluffy you are right.  But, there are perfectly normal people who die everyday and have no idea.  At least we know and we can prepare.  We need to keep going and live everyday as if it were our last.  God will see you through.  Trust in Him and you will overcome your fears.

[okarol]

fluffy,
I don't blame you for being discouraged.
Please try to remember that kidney disease is one of the areas of medicine where there is a ton of research with new developments all the time. Many other illness don't have nearly the amount of effort directed at them.
It is sad, because you are so young. But the fact that you are young may mean that you will be able to take advantage of new technology or solutions as they become available.
I hope you have more better days than bad days.
Hang in there 

[Joe Paul]

  Hang in there fluffy, will keep you in thought and prayers.

[keefer51]

Fluffy, I was supposed to die since i was eleven. I am 51 now and in two weeks i will be 52. Anytime in my life when i was told " sorry Pal..." i was ready for it. It never came. For some reason i am still alive. I know the fear when we are young with this nasty disease. I am sorry it has happened to you. I am sure it is not your time anytime soon my friend. I'm here for you pal.

[Sluff]

We are all dying Fluffy. I'm sorry you are struggling with this  but unfortunately it is a reality we all have to accept. The owner of this site always said "I'm going to live until I die." Make the best of your life while you have the chance.  Play your cards as best as you can and know despite your illness you are a great person and are loved much by friends and family. 

[tamara]

When i first started pd i didnt worry that much about kidney disease at all, if i played my cards right i could pretend i wasnt sick at all. But now after years of pd and pd failing on me, and numerous peritonitis infections it kinda hit me how sick i am, and that even with hemo im pretty much dying. thats a realization that really hurts. im 24 and theres still alot of stuff i wanna do.myfamily keeps telling me im gonna get better and im gonna be ok, but to me it looks more like they're mostly trying to reassure themselves. It hurts the thought of dying young and leaving so many good caring people behind hurts. im sorry if that was depressing but it was just something i had to say and im scared.

Hi Fluffy,

I found out I had kidney problems when I was 24, and hey I thought it was the end of the road too. Then I was living like I was dying. I'm now 33 and a transplant is in the near future

from my wonderful partner in crime, Allan. Now I'm living to live, not living to die, I hope you get me  And the transplant wasn't the change in attitude, I think I just had a hard long look

at things and thought hey we are only on this ride once let's enjoy it no matter what's trying to hold up back.............

Thinkin of Ya

Tamara xxx oooo

[George Jung]

Fluffy, I know what you are talking about pretending that you aren't sick, I think I am guilty of minimizing the truth from time to time also.  I have been on dialysis for going on a year now and I have managed to somehow keep things in the short term (still no fistula), like I am somehow going to find my way out of this mess with very little change.  At times I feel like my life is very sad and depressing, you know, kinda pathetic.  I get happy about things healthy people wouldn't ever think twice about.  On one hand I am keeping positive while on the other hand I feel like I am falling into the vortex of all things that suck.  However I must realize that there is always someone who has it more difficult than I do, weather it's a health condition or poverty or lack of education or even people who are full of greed and are never satisfied, and I realize in a demented kind of way how fortunate I am.  I have come to accept what is my life although I refuse to settle with how things are.   Being that we are young (I am in my early 30's) we have an advantage over some others in overcoming adversity.  We have a special force within us, a powerful motivating factor, we are not yet satisfied with what we have accomplished or the opportunities we have found and we have much to do still.  It may be cheesy to be clique but one can look at the glass as half empty or it can be half full, the choice is yours to make.  Try to focus on positives and if you can't find any I bet someone who knows and cares about you (everyone at IHD for starters) can, give a listen to what they say and take the good from it.

I hope your treatments get easier, if PD isn't working for you maybe it's time for a change.  Hard to do, I realize that but you must think long term not always just what is right in front of us.

[BobT1939]

The other day my wife said to me: "You know, we've got so many things to worry about let's not worry at all." Now, that sounds like a pollyanna approach to life, but it made sense to me. It doesn't mean you don't do everything you are supposed to do re your situation. You do what you can and move on. Maybe easier for me to say, since I'm an old guy and you're a young man, but know that we are thinking about you and wishing you the best./bobt

[Romona]

Hang in there. 
I don't know anything "right" to say. People would tell me it will get better. I try not to say things like that anymore. It is so hard to be positve sometimes. You are human and have every right to be scared.

[stauffenberg]

I don't know what your status is with respect to a transplant, but if you do get a new kidney, you will be able to feel and effectively be perfectly healthy, at least in terms of the way you feel and function.  You will also at least double your present life expectancy.

I understand exactly what you are saying, though.  Before I was sick, I was a perfectionist, and I literally could not enjoy a single moment of my life, even if very pleasant things were happening, unless I could also feel that the general structure of my life, my career, my prospects, my expectations, was completely as it should be.  On the other hand, if I had to endure unpleasant things in any particular moment, I was still content as long as I could reassure myself that the overall unfolding of my life plan was intact.

But with serious illness, you completely lose the ability to think of your life as having a positive trajectory, as being successful.  All that is left to you is enjoying what moments you can, which is an aspect of my life which had never been especially important to me before becoming sick.  It requires a lot of existential readjustment to switch from concentrating on the general picture to enjoying each moment.

As a child I had a guinea pig which managed to get out of its cage and fall over the edge of a table, breaking its lower spine so that its two back legs no longer functioned and it could only move by dragging them behind it and crawling with its front legs.  When I put it back in the cage and gave it some of its favorite food to eat, it still squealed with delight as it dragged itself to the food dish.  Only animals can live in the moment that well, without worrying about the general picture, but chronically ill people have to learn to experience life again the way animals can, at least to some extent.

[lola]

Hang in there Fluffy, my husband and 5 yr old daughter also have Alports. Are you listed for a transplant? I know things feel so low for you but it WILL get better and always know IHD is here for you and you can PM me if you want

[thegrammalady]

i've been told i make mountains into molehills. i figure that's the best way to handle a mountain, now if i could just figure out how to do in the mole.

my youngest daughter says i ignore the big pink gorilla in the living room.  i say as long as he cleans up his own messes, he has as much right to be there as anyone.

you can always find someone that is worse off than you are.  i realized this years ago, despite what my mother had always told me, when i talked with a woman who's son had seizures like mine. the shortest seizure her son had ever had lasted 20 minutes. that was because it took that long to get him to a hospital where they could stop it with drugs.

face it, i just have a weird view of life, but it works for me. with faith and the love of your family (even those in denial) and friends (especially those here) you can handle anything.

[paris]

Hi Flluffy, I wish I could take away some of your pain and stress.  Even people with other diseases can't understand the emotions that come with kidney failure.  I hate that you are dealing with this at such a young age.  I think we all have some denial--days I feel pretty good, I think that I could just go on like this.  But, as the dr. reminds me, I don't even remember what "good" feels like anymore. Mostly, I am getting up and trying to be glad for that day.  Not always easy when there are days I don't want to get up.   Sending good thoughts your way and reminding you that we are all here for you and we care.   

[st789]

I am still a very young person after experiencing a 4.5 roller coaster of CCPD.  From my perspective, with this chronic condition, the future is cloudy with uncertainty.  Have faith and supports of people around us.

[EMMA]

Hi there Fluffy...

I know how you are feeling and it is overwhelming.  I have come to the realization that the outcome is greatly dependant on how i treat and nurture myself.  If you eat bad, you will feel bad.  If you dont excercise, you will feel bad.  If you drink to much, you will feel bad.  You have alot of control in this situation.  Please dont give up.  Make appropriate decisions, and you will feel so much more in control and confident.  It works!!!

Em

[KICKSTART]

There is no easy way to come to terms with what we have , but on the other hand ..no-one knows when their time is up ..you have got to be somewhat positive about things, although it isnt easy , otherwise we might never go out for example in case we got hit by a bus! . 'Its' with us , we cant escape, but i cant say im not thankful for every day im here!

[fluffy]

thanks for all your replies everyone, they were all different but every single one of them helped. its good to know that some ppl understand. and im glad i was lucky enough to find this community.

i usally hold myself together better, but im doing hemo and pd and i woke up with peritonitis, the pain was unbelieveable so i started to freak out a get depressed.

thx everyone 

[poohkari]

Im sorry. I know how you feel. My boyfriend is 25 and on hemo, and I know he feels like this a lot. I know that our friends all think he's going to one day be magically better and live happily ever after ... and we know the reality isn't great, but we just try to deal and live each day as best as we can. Although we're new to this dialysis/kidney game (only since May) we don't sweat the small stuff as much. I think all we can really do - anyone - is to just live it up, we never know what will happen.

[Neo]

I am 29 I have been on dialysis 5 years and am on the transplant list.. I do not think I will die yound as long as I take care of myself,when i get my transplant hopefully i will get at least 15-20 years out of it..By then there should be a great number of advancements..Being the age we are I think we can live a long normal life-span, and im not sugar coating this I really think its possible.. We have treatments and there are people on here that have been on dialysis for 30 years, i mean think if you can last 25 years on dialysis and 25 years or 30 worth of transplants which u can have multiple transplants in your lifetime. I'm looking at living till my 70's 80's ...As long as I dont get hit by a bus or something..LoL....So keep your head up we dont ahve a death sentence....

[goofynina]

Sounds good to me Neo, I admire your positive outlook on all of this    and if you are determined enough to make it happen, then dammit, it better happen,  Good luck and Godspeed 

[mrhecht]

........... I have come to the realization that the outcome is greatly dependant on how i treat and nurture myself.  If you eat bad, you will feel bad.  If you dont excercise, you will feel bad.  If you drink to much, you will feel bad.  You have alot of control in this situation........
Em

I agree with you completely. We may have lost the control of part of our body, but we CAN control how we respond to that. Not to say that it isn't hard, or that there are not times of great discouragement, but while there is breath in my body, I refuse to be defined by the term "patient". And when dialysis becomes all consuming, I have my hour or day long pajama day and move on.

Don't despair........