I REALLY hate dialysis!!

[Iffer]

Hi to everyone who is reading this!!  I'm from PA and just started dialysis on February 2nd of this year.  I am currently doing home hemo with Nxstage and PureFlow.  I have a CVC and although it's painless, it's scary knowing all of the horrible things that can go wrong with it.

I was diagnosed with Membranous Glumerulonephritis in 1986, but didn't need dialysis until now.  My kidney function was at 7% for almost a year before I started dialyzing.  I wish I could have held out longer!!  I hope to transplant soon, as my mother is a match, but I need a higher albumin and a lower protein output before they'll schedule me.  The waiting is nearly as bad as the dialysis itself. 

I joined the site to rant about how much I hate dialysis as well as hoping to find others that are having issues with their CVC's so I don't feel like I'm the only one! I look forward to meeting new dialysis buddies.

[billybags]

Iffer, Welcome to the site and yes we all hate dialysis but it keeps us alive. Please ask lots of questions, find out as much as you can about this disease.
 

[cariad]

  Iffer.

We're so glad you found us. Ranting about hating dialysis is a core value here on the forum. We encourage it, even as we will try to pool our knowledge to find solutions for you that will hopefully make your life easier.

If CVC is an abbreviation for a tunneled line, or Hickman catheter, then I had one for just over a month. It was scary but I had no problems. I came on here to ask quite a few questions, anytime something did not look right, and I would get answers very quickly. If your doctors are telling you all that can go wrong with regards to infection, they are correct, but at the same time we have members who have used this access for years and had no problems. They want to impress upon you the danger both because it is dangerous, and they want you to get a fistula. You will get better clearances with a fistula. However, if you think a transplant is imminent (within the next year) I would suggest trying to use the cath until transplant, so long as you understand the risks. Are you listed and has your mother been approved for surgery?

Again, welcome to IHD, and I look forward to getting to know you better.

[Iffer]

To Billybags: I realize it keeps me alive, but it certainly doesn't curb the hatred!!  I know pretty much all there is to know about my personal kidney disorder, but what I'll be asking most of my questions about will be my CVC and issues with the Nxstage machine.  Thanks for your reply!

To cariad: Hi!  I am very happy to have found a site where people understand just how much dialysis sucks.  Most people really think it's a walk in the park.  I hope to transplant within the next few months.  My mother has been approved and I am currently listed.  I was originally slated for a preemptive transplant without ever going on dialysis, but the surgeons won't allow me to go into surgery until my albumin is above 3 and my urine protein output is under 5 grams per day.  The albumin is coming along nicely, but I can't get the proteinuria to stop!  Thanks so much for the warm welcome!

[MooseMom]

So glad you joined us!  I'm most eager to hear all about the transplant in your future!

[chook]

  iffer. This is the place for answers and support and you will even find yourself offering the same. Good luck with lowering the proteinuria.

[willowtreewren]

Hi, Iffer!

 

Ah, February 2 was the last day we used our trusty NxStage machine as we got the call a little after midnight that night! Did NxStage for over 2 1/2 years and while I would never say we loved it, I can say that it allowed us to lead a fairly normal life.

Aleta

[lmunchkin]

Welcome Iffer!  Glad to have you even if under unfortunate circumstances. You will get good help & conversation here.

lmunchkin

[boswife]

hi and    Im hoping you get your transplant REALLY soon but in the meen time...    for nxStage...  WE've been home with it for 3 months now and are glad we made the switch..  All the best in your time on D, and hope for a rush on the T 

[galvo]

G'day, Iffer, and  . 

[billmoria]

Sorry, we don't all hate dialysis. I don't. I wish I did not have kidney loss but dialysis keeps me alive and able to love my Dave. People die all the time because they don't have access to dialysis.

[Bajanne]

Welcome to our community, Iffer!  Yes we do hate dialysis, but we love the time it gives us with our loved ones.  You have come to the right place for information, support and even some fun.   You will soon find out that this is a genuine family -  loving, caring and sharing.  Please keep reading and keep posting so we will know how you are doing.  Looking forward to hearing more with you.




Bajanne, Moderator

[sangredulce]

Hate is a strong word. Let's be real people! I don't know is I really hate dialysis but I sure don't love it! If it wasn't for it I'd probably be feeding the worms already. But thank God, I'm still here, hoping I might get a transplant sometime in the future, hopefully before I croak.
Lets just do our best to make the best of it. There's no point in dwelling on how much we hate it. It'll only make the experience much more depressing. At least that's what I try to do. Sure it's taken some adjusting to, but like I said, I'd be pushing up daisies if it weren't for it.

Good Day............................

[cariad]

Saying I hate dialysis is me being real. I don't care how strong a word it is, it's accurate for me and it appears to be accurate for the original poster.

Hate is a feeling, and no one can convince me that my feelings, or anyone else's, are wrong.

I hated chemo just as much. Why is that no one ever takes issue with a person hating chemo and radiation?

[amyloid man]

At least you are on home hemo.  I wish my insurance would let me do it.  I go in-center hemo and it really stinks for me.  The whole rest of the day I have a headache and/or sleep till the next morning.  I would love to be ab le to do 2hrs day instead of 4hrs every other day.  Also, Have you thought about PD?

[AguynamedKim]

  Iffer!  Keep that access clean and hope you get your protein situation in order soon for that transplant!

[billmoria]

I am not taking issue with any one who hates dialysis. It is just not the way I look at it. Dialysis keeps me alive and I appreciate that.

[cariad]

Bill, I think it's great that you see the positives in dialysis. So long as no one tries to tell other members how to feel or talk about dialysis, then I love to hear that people are doing well on the machine.

Me, I was a child, I went into renal failure in large part due to neglect and gross malpractice, I vomited every day, got splitting migraines, I did not understand why any of this was happening to me, and I was so agonizingly thirsty all the time that I couldn't concentrate. So I don't cotton to anyone suggesting that I reexamine my feelings toward dialysis. That will just never happen.

[edersham]

Cariad,

You go girl! I feel exactly the same way. To each his own, but if the name of this site was "The wonders of dialysis" I wouldn't be here.

Ed

[billmoria]

Cariad - I certainly understand your point of view. It is a horrible fact that all dialysis treatment is not equal. I have read other horror stories on here but your story is a very bad example of retched medical care.
I lost a grandfather before dialysis was possible and two brothers who just never went to a doctor until it was way too late. I was on on insulin in my 30's but I fought to delay kidney failure that I knew was a real possibility.
My dialysis care (in the UK because the man I love can't live in my home country so I live here instead of the US) has been excellent.
I wish I could wave a magic wand and make everyone on this board well.
However, I don't want all new people to think that dialysis care has to be as bad as what you have received.
I wish you well.
Bill