Tired of being referred to as THhe End Stage!..

[redheadedangel]

.....It is really strange but when you have kidney disease there are stages... and when in dialysis and other treatments you are labeled... I am about tired of being referred to as "The End Stage"...Looks like they would come up with something less grim... You do know you're at the end right, is what I was last ask....I had a puzzled look on my face looked into her eyes and ask her if she was Jesus.... Well hell yea I knew the diagnosis but did I need to be reminded every time I entered the room?.. And yes I knew there was dialysis and possibly transplant but did I need to be constantly referred to as The End??? How do they know God won’t toss me a miracle.. He has been known to do so in the past.. Yea I know I have had more than my share and I am not really expecting him to do more for me than he would for any one else. So I have been blessed to have had what I was granted in the past. Life was beautiful and God was good to me. I do know there are over 800,000 people right now waiting on kidney transplants. And I would hope those younger are granted what they need first. I personally refuse to accept a live donation as I see it as taking half a life from a person. Silly some think. But I would feel horrible if I received a kidney from someone and then that person ended up having problems with the one they had left. Therefore narrowing my odds of receiving. Thruth is if the government is willing to pay then it has to be the end.lol...

Interestingly… When you arrive for dialysis it is determined just how much you should be weighing… Hummm have I entered the ultimate weight loss clinic? Yes that’s right! Young lady We believe you should weigh a certain amount, so today we are going to take away this amount in pounds…. Hummmm Yes all toxic waste is removed from your blood and you become lighter. Imagine that! I get to die at a good weight! I can wear an outfit that looks good.

It appears good vessels ARE required… Damn it why didn’t they tell me that… Ouch… No they didn’t find a single good one in the right arm and surgery Monday in search for a creating a fistula in the left arm.(connecting an artery and a vein together). Says only 50/50 chance… go figure...If this does not work they will have to graft an artery and vein together with an artificial tube.. lesser of the two options as the tubing wears thin from needle insertion and will have to be replaced later at some point from use..I think I would have better odds in Vegas.. So surgery Monday and I will be away a few days… .. God Grant my Surgeon, Dr. Yates, the ability to pull this off without a problem….Amen….. Anesthesia…Now that’s a good sleep!!!!
So, I am going to take a deep sleep while he makes it possible for me to continue with my treatments… I am not able to eat or keep any food down at this time. And I have a taste in my mouth like an ammonia capsule has exploded. Yuck!... Sugar free Star Brites were my best friend By Brachs… side effect: they may have a laxative effect….Hummm there is no MAY about it.. IT DOES!…oh yea just what I needed… Sassy they did not need to know that girl!... yea they did they might want to eat some of that candy and need to know what it will do… LOL.. So don't go crazy on Star Brites....
Aside from that every thing is hunky dory…never did know what that meant…assuming it means Splendid….. As I am. LOL
I knew those kidneys had a job to do, if we do ours… But sometimes they fail and fortunately we have been graced with mechanics that help us out when we are at The End!My doctor told me dialysis was not going to make me feel all that great..and that my nausea was not going to go away..sometimes I don't like my doctors or nurses.but I smile and tell them thank you. It is not their fault and they have to be honest and straight forward with me..I wouldn't want it any other way....What I do know is that I can handle it.. bring it on....If this is Gods desire...so be it... I am his child...So nighty night.... sweet dreams ya'll .. Angels have a job to do... . Sassy

[Sara]

Great to see you here, RHA.  My husband's nausea did go away for the most part after he started dialysis, so hopefully yours will too.  And I know what you mean about the "end-stage" part.  It is rather depressing every time I read it.

[redheadedangel]

Thanks Sara for responding to my posts. Neither arm was acceptable for a fistulla or graft. This was written 4 weeks ago in my journal. To date, I have a graft in my rt. leg. Many difficult sticks. but lay that to the untrained staff. I have been accepted at a Divita center but a space will not be available until the end of September. So Sassy gir hangs in there. My prayers for you and Joe. Sassy

[Zach]

I think they are starting to refer to us as "Stage 5" patients.

Reminds me of the old British TV show The Prisoner.  "If I'm number 5, who is number 1!"     

[scyankee]

Hello RHA,
   Hope you are doing ok today. I absolutely agree with your feelings about "End Stage" and about the living
donor issue.  My transplant hospital keeps calling to see if I have a "donor". Are things so slow that they need
to start calling their lists????Yikes! Anyway, I REFUSE to take a kidney from a living donor for
the same reason of them needing that other kidney and also for fear of rejection and they have gone thru
all that for nothing!!!!!!!!
    Sorry you have had such a rough time of it. It all stinks and hope things get better for you real soon.
    SCYankee

[angieskidney]

I feel the same way about live donors. My mom was supposed to be one but turned out she can't or else she would eventually end up on dialysis herself!!

[redheadedangel]

::)My biggest argument was with my son...I told him he had my 3 grand children to raise. Then when that was not enough, zi explained that I wanted a pancreas as well, and it cna not come from a living donor.. End of conversation. Mom won that one..Bless his heart.., ;)Sassy

[Python]

I know where you're coming from with the "End Stage".  When my son's kidneys failed nearly 5 years ago, although we knew he had a degenerative kidney disease, the speed that his kidneys failed at took even the medical profession by surprise.  His life hung in the balance for a couple of days and he was in Intensive Care.  Everything seemed to be happening in a dream-like state.  I heard the words "End Stage Renal Disease" and the first thing that came into my mind was my son was going to die at 15.  Seeing the look of horror it was quickly explained that it meant the kidneys were at End Stage and not my son but how many other people think that End Stage means the person with kidney problem is about to die.  I think they could come up with a better way of explaining it.

[angieskidney]

When I was at ESRD at 15 I didn't know that term. I don't know if I was just "out of it" as I was most of my childhood or if they didn't use it at the children's hospital in Toronto, but I didn't know that term til after I already had my transplant and learned the term from the net.

[kitkatz]

End stage kidney disease...why don't they just call it beginning dialysis stage?  That is what happens when you hit stage 5 or there abouts.  Shheez!  I heard End Stage and thought great...here come Mister Grim Reaper.
We begin at this stage:
dialysis
Multiple pills and meds
new hours to be somewhere
new routines
often new ways of life
new doctors
new nurses
new vocabulary

I say it should not be end stage, but a Begin stage for dialysis!

[Mom3]

The hospital where my son had his first dialysis had HOSPICE MATERIALS posted on the walls. I mean it was seriously END end stage stuff. I was very upset about it and complained so much that by his next hospitalization a few months later the offending posters were down. Don't know if I did it or not--but I certainly tried. They tried to tell me most dialysis patients were old and would be dying before long so they appreciated the Hospice posters. I said that if they wanted that information they'd ask for it and that their families might just feel the same way I did...

Mom 3

[Black]

The hospital where my son had his first dialysis had HOSPICE MATERIALS posted on the walls. I mean it was seriously END end stage stuff. I was very upset about it and complained so much that by his next hospitalization a few months later the offending posters were down. Don't know if I did it or not--but I certainly tried. They tried to tell me most dialysis patients were old and would be dying before long so they appreciated the Hospice posters. I said that if they wanted that information they'd ask for it and that their families might just feel the same way I did...

Mom 3

and you were probably right!

[kitkatz]

There goes Mom3 kicking ass and taking names!

[redheadedangel]

  Good for Mom3...Keep it up Girl!  Bet they woul feel differently if they were on the receiving end.. Sassy