I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
October 15, 2018, 05:43:04 PM

Login with username, password and session length
Search:     Advanced search
524174 Posts in 32839 Topics by 12164 Members
Latest Member: DaveM
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Dialysis Discussion
| |-+  Life NOT on the list
| | |-+  Life NOT on the list
0 Members and 1 Guest are viewing this topic. « previous next »
Pages: [1] Go Down Print
Author Topic: Life NOT on the list  (Read 1100 times)
kitkatz
Administrator/Owner
Member for Life
*****
Offline Offline

Gender: Female
Posts: 16857


« on: October 21, 2017, 03:57:51 PM »

Why do people feel they have to know why I am not eligible for a transplant? It is depressing enough to say I am not eligible for one, why should I have to tell the world why and then discuss it with them? Seems rude to tell them it is my business and not theirs.






EDITED: Moved to new area-kitkatz,Admin
« Last Edit: October 29, 2017, 07:03:42 PM by kitkatz » Logged



lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Simon Dog
Administrator/Owner
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2963


« Reply #1 on: October 21, 2017, 05:48:34 PM »

You are correct.    This is like asking a childless couple why they have not conceived.
Logged
Michael Murphy
Elite Member
*****
Offline Offline

Gender: Male
Posts: 1867


« Reply #2 on: October 21, 2017, 07:33:56 PM »

Yes, itís a personal issue.  Why should I have to deal with the questions every quarter because of some need to ask everyone . The reason I am not eligible will not change for several years.  For non professionals I simply ignore the question.
Logged
Jean
Member for Life
******
Offline Offline

Gender: Female
Posts: 6106


« Reply #3 on: October 21, 2017, 08:01:04 PM »


 Amazing the way some people think they should know every  aspect of your life. You could, I suppose tell them you are wanted for murdering your ex-husband.
Logged

One day at a time, thats all I can do.
iolaire
Elite Member
*****
Offline Offline

Gender: Male
Posts: 1419


« Reply #4 on: October 21, 2017, 08:08:46 PM »

If it's difficult to say you don't want to answer or difficult to share why it's not an option, then one response that might be easier to do is some sort of joke that's so ridiculous that it makes it clear you are not going to answer. But then the challenge is to figure out what will not lead to more questions.  (As you can see by my examples.)

Why didn't you get a transplant?
I have flat feet.
Or
They only give transplants to lefties.

People love to ask questions and sometimes it's easier to answer and other times it's harder. Using the no kids example my wife and I who are childless by choice are happy to answer where a couple who want kids and can not conceive it's a much more sensitive/stressing answer.
Logged

Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
PrimeTimer
Elite Member
*****
Offline Offline

Gender: Female
Posts: 2025


« Reply #5 on: October 21, 2017, 10:04:29 PM »

Bombard them with too much info. Go on incessantly about nothing in particular, not letting them get a word in. Talk their ears off! From personal experience I have found this annoys the heck out of nosy people. After one of my chitty-chatty sessions they actually avoid asking me questions because they know I'll stay in their face talking their ear off. At least it works pretty well with the receptionist at my dentist's office.  ;D 
Logged

Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
SooMK
Premium Member
Full Member
*
Offline Offline

Gender: Female
Posts: 448


« Reply #6 on: October 23, 2017, 10:29:14 AM »

People don't have the right to know this information and you sure don't have to tell them. The trick is how to tell them to mind their own business nicely. I think telling the truth, repeatedly if necessary, should work: "It's complicated and I don't want to talk about it" or your variation of that. You could be rude ("None of your business") but unless that's your default communication style I think that is stressful and you probably wouldn't be asking the question to begin with.
Logged

SooMK
Diagnosed FJHN/UKD 2009
Transplant April 2014
kristina
Premium Member
Elite Member
*
Offline Offline

Posts: 4805


« Reply #7 on: October 23, 2017, 11:58:55 AM »

Why do people feel they have to know why I am not eligible for a transplant? It is depressing enough to say I am not eligible for one, why should I have to tell the world why and then discuss it with them? Seems rude to tell them it is my business and not theirs.

Dear kitkatz,
I am very sorry that you are faced with this and I can understand that it is depressing enough already not to be eligible for a transplant. If some people persist and continue to be insensible enough to ask you about details, why not inform them politely that speaking about it would just be too hurtful right now and much too painful ? After all: any sensitive person can surely comprehend how devastating such bad news are !!!
I am thinking of you and I send you my best wishes from Kristina. :grouphug;
Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Tonyg
Newbie
*
Offline Offline

Posts: 10

« Reply #8 on: September 07, 2018, 01:06:02 AM »

My thoughts on 'the list'...... I've been on HD for 18 months, my fistula is good so far, apart from a small problem 5 months ago, which required a repair. I found out that I have polycystic kidneys 40 odd years ago, but was never told of the prognosis until 2 years ago, here in Cyprus. By then the disease had done it's business, and I was well on the road to HD. The Dialysis center I attend is in the Limassol general hospital, and I can't fault them, excellent care, and attentive nursing staff, I rarely have problems. Perhaps the only complaint I have, is since changing to the 5008 machines, they take longer between patients, and so the timing is a bit out. I always go for the 4:30 session, (because I still work) but quite often, if the previous person was late, or had a problem, I don't get on till 5 or after, which means I don't finish untill at least 9, so by the time I'm done with after care, I sometimes don't leave till half past, with a 45 minute journey home, I get home rather late. Now, as far as transplant goes, I have a fixed view. I don't want to go on the list. I have two main reasons for this, One, I'm s@%t scared of the surgery, and possible complications, and I know this is probably irrational, and it's done frequently and by experienced surgeons, but I can't help it. Two, I'm nearly 65 years old, I've had a reasonable life, and I'm quite at ease with hemodialysis and the idea of continuing with it for the next (possibly) 20 years and my real wish is that, if a suitable kidney becomes available, that it should go to a young person, who has a lot of life to live, who has more in front than behind, who can then fulfill ambitions. I know a lot of people will disagree with me, but that's my position, and at this point I'm sticking with it.
Logged
kristina
Premium Member
Elite Member
*
Offline Offline

Posts: 4805


« Reply #9 on: September 07, 2018, 06:26:43 AM »

My thoughts on 'the list'...... I've been on HD for 18 months, my fistula is good so far, apart from a small problem 5 months ago, which required a repair. I found out that I have polycystic kidneys 40 odd years ago, but was never told of the prognosis until 2 years ago, here in Cyprus. By then the disease had done it's business, and I was well on the road to HD. The Dialysis center I attend is in the Limassol general hospital, and I can't fault them, excellent care, and attentive nursing staff, I rarely have problems. Perhaps the only complaint I have, is since changing to the 5008 machines, they take longer between patients, and so the timing is a bit out. I always go for the 4:30 session, (because I still work) but quite often, if the previous person was late, or had a problem, I don't get on till 5 or after, which means I don't finish untill at least 9, so by the time I'm done with after care, I sometimes don't leave till half past, with a 45 minute journey home, I get home rather late. Now, as far as transplant goes, I have a fixed view. I don't want to go on the list. I have two main reasons for this, One, I'm s@%t scared of the surgery, and possible complications, and I know this is probably irrational, and it's done frequently and by experienced surgeons, but I can't help it. Two, I'm nearly 65 years old, I've had a reasonable life, and I'm quite at ease with hemodialysis and the idea of continuing with it for the next (possibly) 20 years and my real wish is that, if a suitable kidney becomes available, that it should go to a young person, who has a lot of life to live, who has more in front than behind, who can then fulfill ambitions. I know a lot of people will disagree with me, but that's my position, and at this point I'm sticking with it.

Hello Toni,
please think this over... because if you are 65 years old you won't get a transplant from a young person anyway. For example I was told that doctors always give transplants to a person within "their own age category", meaning, that if you are 65 years old, your transplant might possibly come from a person in or around their 40's or 50's. And it still depends on your own physical well-being, fitness etc. For example I was told that my body is much younger than my years and because of that doctors have thought about which age-group of donor I would "fit-in". I was told that doctors won't give a kidney from a 50ish person to a young person, that would not make any sense because a young person needs a transplant-kidney from a young person to give it a fair chance and last for as long as possible...
Being scared about the transplant and resulting medication is completely normal. I am scared about the operation as well but I look at it from the point of view, that a transplant is a more gentle treatment for my ESRF. A transplant is not a cure, it is just a treatment which gives the patient a chance to "last" longer and give a better quality of life.
Please think it all over again and please give yourself a fair chance and please ask your nephrologist and/or your GP.
Best wishes and good luck from Kristina. :grouphug;
P.S. I am not medical but what I have written here is ~ about how it all was explained to me ...
As a footnote: I refused for years that my husband could donate a kidney to me, I did not agree with it, but then, after being on dialysis for a while, we both re-thought and I finally agreed and during his kidney-donor-work-up he was diagnosed with bladder-cancer, was operated on and treated and has been cancer-free since. (Touch wood it continues !!!) The medics are still spooked about this, because  if my husband would not have wanted to donate a kidney to me, he would have been long gone because bladder-cancer never shows any symptoms until it is much too late for treatment and his was caught just in time because of his kidney-donor-work-up... Just imagine !!!
« Last Edit: September 07, 2018, 06:46:18 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Simon Dog
Administrator/Owner
Elite Member
*****
Offline Offline

Gender: Male
Posts: 2963


« Reply #10 on: September 15, 2018, 04:21:25 PM »

Quote
because if you are 65 years old you won't get a transplant from a young person anyway. For example I was told that doctors always give transplants to a person within "their own age category", meaning, that if you are 65 years old, your transplant might possibly come from a person in or around their 40's or 50's.
This is a vast simplification, because the doc did not take the time explain EPTS (estimated post transplant survival); KDPI (kidney donor profile index) and how they interact in an allocation.

The current system saves kidneys with KDPI <= 20 for persons with EPTS <=20 and <=30 KDPI kidneys are prioritized for pediatric patients.   Your EPTS will be >20 if you are age 53 or higher, or younger with a history of diabetes, transplant, or time on dialysis.

Now for a real example:

I am an example that proves your doctor is not necessarily totally accurate.  I am 60, been on the wait list for 6 years 3 months and was transplanted on the 8th and 9th of this month.    The kidney came from a 24 year old woman with a KDPI of 33.   My surgeon told me that these kind of offers just don't happen.
« Last Edit: September 15, 2018, 04:24:17 PM by Simon Dog » Logged
Whamo
Elite Member
*****
Offline Offline

Posts: 1007

« Reply #11 on: October 07, 2018, 01:20:20 PM »

I am almost 66.  I was on the transplant list, but just got kicked off because of skin cancer.   I surfed 35 years.  I was a beach boy.  I surfed California, Mexico, and Hawaii.  I don't regret it.  It was wonderful.  But I had four surgeries last month: skin cancer on my leg, head, and ear, plastic surgery, too.  My leg skin cancer came back, and they're checking to see if it spread.  I get a pet scan soon.  I'm fighting the cancer by going low carb (keto).  I have been on dialysis six years, and I do PD.  I do it 12 hours a day.  I'm lucky to have a good wife for emotional and financial support.  I get a 40K pension but that's peanuts these days.  It certainly doesn't go as far as it did a decade ago.  I don't want a transplant anymore.  I'm afraid the skin cancer would run rampant if I did.  I'm hoping for an artificial kidney.  There are about five of those in development, but they're always years away.  If I get a new artificial kidney before I die I'd be surprised.  It's funny.  I feel really good, better than I have in years.  I'm not depressed.  Every time I see a nurse they ask if I am these days. 
Logged
Michael Murphy
Elite Member
*****
Offline Offline

Gender: Male
Posts: 1867


« Reply #12 on: October 07, 2018, 06:50:14 PM »

Since seeing this post I now tell em I canít tell cause it would be a hepa violation, I tell them when they what is hepa I ask for their security clearance since it is on a need to know basis.   That seems to leave them stunned and they drop the subject.
Logged
Mr Ken
Newbie
*
Offline Offline

Posts: 5

« Reply #13 on: October 07, 2018, 07:25:42 PM »

LOL  I go to reply and all these animated emojis show up..........  :waving; Anyway, topic at hand....... I have no problem in talking about why I am not on a  list... The reasoning is BS and with pleasure of making the transplant center look bad I have no problem what so ever about telling my story........

Ken
Logged
Pages: [1] Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.15 | SMF © 2017, Simple Machines | Mobile View Valid XHTML 1.0! Valid CSS!