Permanent Dialysis Join the Club here!

[kitkatz]

Well after nine years of dialysis it as finally become permanent for me.  So those of you who are in the same predicament join the club!  I am going to need some support while I adjust for the next few weeks, months, and years to this idea.  Anyone have any advice?

[Wattle]

No advise but lots of {{{{HUGS}}}}   

[paris]

I am sorry, Kitkatz.  You have been so strong and dealt with so much and now this.  I hope it helps knowing we all care so much for you and wish life would just cut you a break right now.   

[keefer51]

I also trying to accept it. I just look at it this way, I will be on it the rest of my life. So i have got to make adjustments in my life. I feel writing about it in a blog can help. I also found that talking about with family is useless. I also think about how far we have come since the 15 years of my transplant and think there may be a light at the end of this ungodly tunnel.

[Sluff]

Nothing I can say or do will help but Hugs to the lifers out there.

[Amanda From OZ]

Well there is always hope that a transplant might happen in the future, but even if it does not you know that you have us all behind you.

Hang in there kit. 

Amanda
xxoo

[KT0930]

As Keefer mentioned, look at all the advances they've made. Hopefully they'll come up with something that will make your life almost dialysis free. In the meantime, know that you have lots of people who care about you and this hard road you have to travel. 

[lola]

 

[angela515]

No words, just 

[paddbear0000]

 

[LightLizard]

i can diggit and i know your pain cuz i have it too. i have been considering stopping dialysis recently. i don't see much point to continuing an existence that promises only to get worse. it seems that everything that ever mattered to me is being, or has been taken away from me.

but then i think,' well....with my luck, a week after i die they'll probably make a big leap forward in stem cell research, or something, and kidney disease will be obsolete...'

its a day-to-day existence. some worse than others, but luckily, some better than others too...

wishing you all the better ones...

love

~LL~

[brenda]

You know I hear ya Kit. I'm a lifer. 14 years for me now but I just keep going and that is all you can do. I understand your disappointment. Heck it ain't so bad you just got not let dialysis rule your life you need to rule it. If you can do it at home like you mentioned you wanted to, you will find it much easier. Good luck my friend. 

[st789]

Sorry to hear this.  We are always here for you Kitz.

[kellyt]

I'm sorry.   

[goofynina]

Lifer here too girlfriend, i feel your pain but i try and ignore it, sometimes it works and sometimes, eh, you know the story     I hope you really look into doing home hemo and getting some of your life back.  Good luck to you girlfriend i luvz ya 

[kitkatz]

Damn it why do people feel the need to tell you to get a second opinion on what is going in with your body?

[okarol]

Damn it why do people feel the need to tell you to get a second opinion on what is going in with your body?

Well, I know you have been very pro-active about your care.
But in general, a second opinion is warranted:
Because not every doctor has all the answers. Because new treatments are discovered every day. Because some clinics make mistakes. Because it is YOUR body - and you want to be thorough. Because knowledge is power.

[rose1999]

Damn it why do people feel the need to tell you to get a second opinion on what is going in with your body?

It's sometimes worth it - without a second opinion my Dad would only have one leg now.  Thanks to the second opinion and skills of that surgeon he still has both legs.  He's on dialysis for life,but dialysis with 2 legs sure beats dailysis in a wheelchair.  That said, I am so sorry to hear that you are a 'lifer' too and I'm sending a big hug and praying hard for a solution to kidney failure for all of you.
Rose

[thegrammalady]

while i know dialysis is for life, if you're not having a transplant, which i'm not, it's something that i just don't think about, so it has never really bothered me. but then i'm just weird anyway. i do understand how you feel though kitkatz. it's probably good that i don't give it any thought or i'd be in a deep blue funk all the time. and a grumpy susie is definitely no fun. if i can help in anyway, just pm me. ya know we all luv ya.

[Bajanne]

I'm in.  There isn't even a list here where I live.  And I don't think I want a transplant anyway.  I might not seem proactive, but I am very thankful for the life I have, even on dialysis.

[Bill Peckham]

Well after nine years of dilaysis it as finally become permanent for me.  So those of you who are in the same predicament join the club!  I am going to need some support while I adjust for the next few weeks, months, and years to this idea.  Anyone have any advice?

I'm on for the duration (baring a change in me or medicine). One day at a time and live in the moment has been my strategy. Get outside too. When I am in the moment outside dialysis is far away.

[stauffenberg]

Kitkatz, if you don't mind my asking, what was the reason they gave you for refusing to consider you for transplantation?  Oftentimes transplant physicians set medically unreasonable standards for people to qualify for transplantation, simply in an effort to trim the transplant waiting list by keeping as many people off it as they can.  Since the extent of this cheating varies from one transplant center to another, you might benefit by seeking to be put on a transplant list elsewhere.  Again, it all depends on the reason you were given for your exclusion.

[kitkatz]

Here the link to where I posted why the transplant team said no to me. You have to go down a few posts to see it.

http://ihatedialysis.com/forum/index.php?topic=5094.80

[stauffenberg]

Sorry I missed your earlier message, Kitkatz.  However, while only you can judge what is best for you, if I were in your position, I would prefer to run the risk of the difficult surgery so I could take my chances later with the transplant evaluation team.  I say this because all life is a gamble, and few feelings can be harder to endure than the notion that we have given up a vital dream by our own choice not to endure some hardship to have a chance at it.  Freud said that most depression comes from the repression of hatred we could not openly express and which we then covertly re-directed against ourselves, and perhaps your feeling of depression now arises from some anger at yourself for denying yourself your dream by not taking a risk.  When I was deciding to act on my chance for a transplant, many people told me not to risk it, and my wife especially was astonished at how totally calm I was about going ahead with the transplant risk.  For me, however, it was no risk at all, since I would have preferred dying quickly and neatly in surgery than slowly and messily on dialysis, as I had been doing for more than eight years.  Life is all about going for it: you will have five billion years to lie in a casket before the world is destroyed when the Sun runs out of energy, so during the brief period when you can still do something, my motto is always to run the chance of making things better.