what happens if i stop HD???

[iolaire]

getting back to the question i asked(if i stopped wat would happen) i've asked at my clinic  n i keep getting the nurses saying back  " why do ask that  question" ?
aren't i allowed to know wat this disease can do to me ?

beep, did you have chance to read the link I posted?
http://ihatedialysis.com/forum/index.php?topic=15216.0
Your question has actually been asked a few times or articles on dying posted.  I'd think reading over those old posts would give you some idea.  I believe from what I've read its not an easy death.  I'd think that looking into assisted suicide would result in a much easier decline.
http://ihatedialysis.com/forum/index.php?topic=28776.0
http://ihatedialysis.com/forum/index.php?topic=1113.0
http://ihatedialysis.com/forum/index.php?topic=31835.0
http://ihatedialysis.com/forum/index.php?topic=6985.0
http://ihatedialysis.com/forum/index.php?topic=27199.0
http://ihatedialysis.com/forum/index.php?topic=27093.0
http://ihatedialysis.com/forum/index.php?topic=32633.0
http://ihatedialysis.com/forum/index.php?topic=26709.0








sp mod Cas

[smartcookie]

https://www.diabetesdaily.com/forum/
This looks to be updated several times a day and has good information.  As to why nurses don't want to talk about happens when a person stops dialysis, it is often because it is so hard when a patient passes.  You get used to seeing that person in his/her chair and it is so hard when that chair is empty.  You become invested in the patients and know about their family and friends.  You know about their pets which team they pull for, what they like to do, etc.  Death isn't pleasant to think about for healthy people.  Ask your social worker.  He/she should have information on hospice and what it is like to die from renal disease.  I can't imagine having to have dialysis three times a week in-center.  I would be having the same thoughts you are.  I would definitely talk with your social worker about how hard a time you have been having.  There are resources available to help you through this, even if you decide to stop dialysis.  Going at dialysis alone is hard; that is why forums like these are available.  Don't do it alone.  Ask for support from your dialysis team, other patients, and here.   

[OldKritter]

Hello Riki

Would you explain your shower technique when you were on PD
I am always trying to do the best for my alternate belly button and you may have a better routine

Thank you 

[solid98]

https://www.diabetesdaily.com/forum/
This looks to be updated several times a day and has good information.  As to why nurses don't want to talk about happens when a person stops dialysis, it is often because it is so hard when a patient passes.  You get used to seeing that person in his/her chair and it is so hard when that chair is empty.  You become invested in the patients and know about their family and friends.  You know about their pets which team they pull for, what they like to do, etc.

[off topic]
The home care room at my clinic is a large open space with a long worktable down the middle with a raised portion in the middle separating the two long sides. On this raised area are several flower vases, two with flowers in them and three with lids on them. The funny thing is, they look just like urns! I jokingly asked a nurse if they were former patients. She looked at me funny then looked at where I was pointing and said, "Oh my God, they do look like urns, don't they?" She gave me a little laugh but I think it unnerved her a bit.
[back on topic]

OldKritter: I started PD within the last 6 months and was told only to use an antibacterial soap and to use my fingers in a circular motion around my exit site, never the wash cloth. I use Dial Odor Armour mainly because it was on the list the center gave me. I also use a http://www.secureway.org/ necklace to keep my catheter protected while I shower. When I first showered I kept slinging my catheter around and slamming it into the shower door.

[Simon Dog]

When I was on PD I wore the PD belt in the shower to keep the tube from flopping around, and  swapped if for a dry one when I was done.  This also kept the PD belts washed.

[beep]

thanks iolaire for that link i'll check it out ..please dont think im looking down that path.just b nice wat to xpect

[smartcookie]

And even if you were thinking of going down that path, beep, that would be okay.  It is your illness and 70 years ago it was a death sentence.  No one should have to do dialysis if he/she does not want to. 

Not getting enough dialysis can kill, too.  I lost three patients this week, two to inadequate dialysis.  One had even lost one arm and both legs.  I see a lot of amputations due to inadequate dialysis coupled with diabetes and peripheral vascular disease. 

Solid98, that is too funny!  And I love your avatar!  I have a half standard poodle half collie at home that I adore!

[beep]

thanks smartcookie  but not thinking of going down that path...yet....
i am on my own with nobody to keep company with and all these disease ive got..diabetes .heart. BP.  kidney failure..aching tired bones  n really dont have a life.eg.  fishing camping socializing.and any hobby a normal guy grows up with    it just makes it hard to go on  .

[Charlie B53]

It is indeed difficult living with Kidney failure.  The constant exhaustion.  Add to that the constant pain of permanent physical disabilities from far too many injuries of leading a very physical life. It is VERY difficult.

But we push on because that is what we do.  Simply keep on going.

Hang in there.

[Riki]

Hello Riki

Would you explain your shower technique when you were on PD
I am always trying to do the best for my alternate belly button and you may have a better routine

Thank you

I wouldn't do anything without making sure that it's okay with your dialysis centre.  This is what I did as a kid, 25 years ago, and when I asked about it, going back to dialysis as an adult, just the look I was given made me well aware that it wasn't done.  I was on PD a couple of years as an adult before they allowed me to start doing this type of dressing again.

The shower technique is fairly simple.  I did something similar near the end of my time on PD.  I always left the dressing on when I was in the shower, and took it off just before I got out.  I was told (again, 25 years ago) to let the water run over it for a minute, after I'd finished washing everything else.  Once out of the shower, I'd use a clean cloth to dry the site, clean the area where the tube and skin meet with a betadine swab, then cover with a mepore.  I changed the dressing whenever I felt it needed to be changed.  As an adult, the mepore was switched for a piece of gauze and 3M wide medical tape, with the gauze having a dab of gentimycen ointment on it.

[Michael Murphy]

All we have to do is hang on help is coming.  Implantable Artificial Kidney is going to start testing in the near future, and I read a strange story today about chimera organs.  Some university using private funds has managed to combine pig embryo with human cells which will grow into a transplantable organs.  A little creepy but still the tissue would match the recipient so no drugs.







sp mod Cas

[beep]

can someone clarify for me .You have a transplant 1 or both kidneys do you somewhere in the future go back to HD..PD for any  unforeseen issues obviously rejection would b main cause

[smartcookie]

You can only get one transplanted kidney at a time.  That is enough to restore normal function.  A small number of transplants do not even work, and then I have seen transplants last 25+ years.  The key is taking care of yourself and getting a good match.  Live donor kidneys do better because they don't have to "wake back up" like cadaver kidneys.  Transplants can fail for all sorts of reasons, probably the number one being rejection.  Sometimes the issues that killed your native kidneys can take out the transplanted one.  Nothing is ever for sure, but transplants are much safer now and the drugs to keep from rejecting are getting better with less side effects.  Patients who are on the transplant list, even without ever getting a kidney, have much better outcomes. 

[cassandra]

You can only get one transplanted kidney at a time.  That is enough to restore normal function.  A small number of transplants do not even work, and then I have seen transplants last 25+ years.  The key is taking care of yourself and getting a good match.  Live donor kidneys do better because they don't have to "wake back up" like cadaver kidneys.  Transplants can fail for all sorts of reasons, probably the number one being rejection.  Sometimes the issues that killed your native kidneys can take out the transplanted one.  Nothing is ever for sure, but transplants are much safer now and the drugs to keep from rejecting are getting better with less side effects.  Patients who are on the transplant list, even without ever getting a kidney, have much better outcomes. 

Dear smartcookie, however much I love you, and all that, it IS poss to get 2 kidneys, like when they are from a kid.

Taking good care of youself and getting a good match is NOT the magical key to keeping your transplanted organ a long time. It's probably as much as 60% the rest is luck. And people on the transplant list have better outcomes because they are 'good enough' to receive one in the first place.

Love, Cas

[MooseMom]

I agree with cass.  I was once offered two cadaveric kidneys that were from a child.

I had an interesting discussion with my tx coordinator not long ago about keys to keeping a transplanted organ.  In her experience, the most frequent cause of loss of an allograft is rejection, and the most frequent cause of rejection is poor patient compliance with taking their meds.  She expressed real surprise when relating how many patients they have who take their meds when they can be arsed to do so.  They might take them with food when they are not supposed to or take them on an empty stomach when they're not supposed to, or they may unthinkingly take them too close to the time they take their vitamins, or they might not take them at the proper times of day.  So when I was experiencing an inexplicable rise in my creatinine, the very first thing my coordinator asked me was if I was taking my meds.

I don't know how much to attribute to luck, but I do know that a tx patient will be more likely to have a successful outcome if s/he is meticulous with her/his meds regimen.  This is part of taking good care of yourself, and I think it will make you "luckier".

Cas is also correct in pointing out that those on the tx list are already "healthier".  You have to be just healthy enough while also being just sick enough to make the cut.

[smartcookie]

Thank you for correcting me!  And you are right, luck is definitely good to have.  I was trying to say that what you can do to keep a kidney as long as possible is to take care of yourself, including taking you meds as prescribed.  I worded it wrong.  You can do everything right and still lose a kidney.  It just happens.  Transplanted kidneys do not last forever.

I did not know that you could get two kidneys from a child!  That is wild!  I learn something new every day!

[smartcookie]

How many times can you transplant a kidney into someone?  Do they run out of room eventually?  I had some basic education about kidney disease and dialysis when I started my job, but I have been trying to learn more.  The nurses laugh at how many questions I have.  So please correct me if I say something wrong!  I am still learning about this myself.

[Riki]

How many times can you transplant a kidney into someone?  Do they run out of room eventually?  I had some basic education about kidney disease and dialysis when I started my job, but I have been trying to learn more.  The nurses laugh at how many questions I have.  So please correct me if I say something wrong!  I am still learning about this myself.

I was told that in order to have a third transplant, one of my other 2 failed transplanted kidneys will have to be removed.. that will be done at the time of the transplant, and that's because there isn't any room left

[smartcookie]

Very interesting!!  So a person can have four kidneys in him/her at one time!  The two native and two transplanted.

[beep]

  The nurses laugh at how many questions I have.   I am still learning about this myself.

I've been on HD  3 YRS now n i get the same response from my nurses when i ask questions bout dialysis  i'm the one on HD   surely i've got the right to know whats happening to my  body thru dialysis

[Simon Dog]

Loogadis:  http://www.weirdasianews.com/2009/05/27/indian-man-5-kidneys/

[Riki]

Very interesting!!  So a person can have four kidneys in him/her at one time!  The two native and two transplanted.

I have 4, 2 native and 2 transplanted.  Unfortunately, none of them have function

I have a shirt that I bought from the IHD CafePress site.. says "kidney sale, buy 1, get one free" and underneath, in smaller writing in brackets it says, "not working."  I always say that I could make a killing because I have 4 kidneys when most people only have 2. *G*

[smartcookie]

That is so cool, Riki! And I loved the article, Simon Dog!  Five kidneys!