One year on dialysis - I still hate it....

[Butterfly7]

One year anniversary on Hemo Dialysis.  sometimes can't believe it's been a year -and other times I still hate it. (I love this site because I still hate it....except Friday night at 8:30PM)
4 Infiltrations....but learning not to move at ALL.
3 years on UNOS list, April 2017.   - come on new Kidney!!!  I'm waiting for you!!
 

[Rerun]

Come ON new kidney!   

[Butterfly7]

Thanks RERUN!   good to know there are a few listening out there!

[Michael Murphy]

As your fistula enters the bumps (anyourism) stage the infiltrations become less frequent. I just had my four year anniversary and my bumps have gotten big enough that it has been several years since I infiltrated.  Hate the bumps love the effect.

[JVT90]

Happy anniversary. Hubby's been on almost 2 years.......1 infiltration. Not moving is a good skill to learn. 

[Simon Dog]

You can reduce the infiltration risk, and in many cases the amount of bumps that develop by using button holes and blunt needles.  The catch is this generally involves self puncturation.

[LorinnPKD]

You're doing great, Butterfly!

[Charlie B53]

Just the thought of an infiltration makes my skin crawl.  This is yet another reason I really REALLY love my perma cath.  But I know I can't keep it forever.  Qwap!

[Simon Dog]

perma cath.  But I know I can't keep it forever.

Oxymoron alert!!!

I did in-center cath, followed by in-center fisula until I could get my home hemo training.

The tech gave me a very nice going away present at my final regular in-center treatment - a huge infiltration.   She even managed to push a full 10cc into the tissue.     Was black&blue all the way to the shoulder for a few weeks.  No infiltrations since then (3.5 years or so at home)

[smartcookie]

Congrats, Butterfly!  Each treatment you get is one step closer to transplant!  Here's hoping you get that call soon!

[kitkatz]

Congratulations on one year!   I bring a cake to my center very anniversary to celebrate my life on dialysis.

[LorinnPKD]

I love that idea, kitkatz!  I have an anniversary coming up and I might steal your idea & spread the love!

[Charlie B53]

I brought donuts once.  I was hungry and hadn't treated myself for a long time.


Simon, I hope you haven't jinxed yourself talking about not having an infiltration for so long. (Fingers crossed).

[Simon Dog]

I must have some sort of mental problem.  I don't mind dialysis - it's just something I do, and I find it hard to imagine any other life.   There are times where it really does get in the way with a deadline or something I want to get done.   Still arguing with my wife over the transplant (she does not want me to have one as she is convinced I will get rejection (acute and chronic), graft vs. host disease, blood clots, and at least 3 or 4 different cancers if I take the plunge).

[kickingandscreaming]

she is convinced I will get rejection (acute and chronic), graft vs. host disease, blood clots, and at least 3 or 4 different cancers

As a nurse, does she have some inside knowledge? Or is she just a glass half empty type?

[Simon Dog]

she is convinced I will get rejection (acute and chronic), graft vs. host disease, blood clots, and at least 3 or 4 different cancers

As a nurse, does she have some inside knowledge? Or is she just a glass half empty type?

She works on a unit where all the people who have xplant problems are treated.

[Charlie B53]

In my opinion, which is pretty much worthless most of the time, tissue make is still a very in-exact science, hense the demand for the anti-rejection meds which leave the body open to a whole host of other problems.
I am not a very good candidate for TX, which doesn't really bother me that much as fortunately for me, Dialysis is working very well.  The switch to Hemo was an experience, and truthfully those couple first months I seriously thought I couldn't live like this.  BUT.... figuring out how they had set my dry weight way too low, and adding a few kilos has made a substantial difference.  I am O.K. now.  I can do this without problems for a long time yet.  I do have to get my access and learn that I can get stuck, but that is coming.  I will survive.

I'm sure that none of us enjoy Dialysis.  But as a survival method it could be a lot worse than it is.

[Michael Murphy]

If you need a reason to go have a transplant Emory University created a app called iChoose that tells the mortality rate for a patient. I ran myself just now as a 65 year old white man with a heart condition by the app I have a 78% chance of being alive at the end of the year. With a  cadaver transplant that increases to
95.4%  chance and with a live donor 98.4% chance of being alive in a year.  That translates to me having a 1 in 5 chance of being dead on dialysis, a 1 in 20 chance of being dead with a cadaver kidney and with a live donor a little less then 1 in 50 chance of being dead.  Transplants are not perfect, the statistic show far more dead people on dialysis than after a transplant.  I am not transplant eligible since I have a melanoma removed at least once a year.  If that were not the case I would certainly list for a transplant.  The app is on iTunes for apple and I think somewhere there is a android version.  While depressing it's important to understand the risks involved with choices this important.

[Riki]

I'm coming up on 13 years on dialysis.  I don't think I'll ever get a kidney, but I'm hoping that something will happen eventually.  I'm actually keeping an eye on that implantable artificial kidney that UCSF is working on.  I'm hoping that it won't be too expensive to get.

I like the idea of the cake for the anniversary.  I'd do that too, except mine is the same week as my birthday, and I will most likely already have cake on the way. *G*

[Michael Murphy]

Riki my understanding is most if not all insurance companies pay for a transplant because in the long run it's cheaper then dialysis.  Even at Medicare rates my dialysis is about 50,000 dollars a year. If the new AIK (Artificial Implantable Kidney) cost 200,000 that would mean a 4 year pay back for the insurance company plus the additional savings on drugs.  If this thing proves out in testing I am sure you will not be stuck with the bill.

[Treasure]

It's been 12+ years since I started dialysis. I had 11 months in there with a failing transplant. I still hate dialysis, with a white hot hate! (I would use more exclamation points, but I'm an editor, hehehe). But I'm optimistic about the bioartificial kidney University of California San Francisco is working on. I trust that team because they did everything they could to save my transplant and include me in other research they have going on.

The hate keeps me hungry and in the game. I wouldn't last long if I just gave in and accepted being on dialysis. But that's just my personality. Other people deal with dialysis, differently. There's room for all viewpoints.

I wish you all the best, you hater, you.   

Treasure

[GA_DAWG]

While I still dislike dialysis, at the same time I am very thankful for its options. Without it, I would not have had the last five years and counting with my wife and kids. It is no fun whatsoever, but beats the alternative by miles and miles.

[Michael Murphy]

 I have a tee shirt that sums it up.
Dialisys Damned if you do
               dead if you don't

[Simon Dog]

I feel very fortunate to live in a country where dialysis access is not a choice between financial ruin and death, or death if one is broke.