Life NOT on the list

[kitkatz]

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

[Simon Dog]

You are correct.    This is like asking a childless couple why they have not conceived.

[Michael Murphy]

Yes, it’s 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.

[Jean]

 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.

[iolaire]

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.

[PrimeTimer]

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.   

[SooMK]

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.

[kristina]

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.

[Tonyg]

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.

[kristina]

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.
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 !!!

[Simon Dog]

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.

[Whamo]

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. 

[Michael Murphy]

Since seeing this post I now tell em I can’t 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.

[Mr Ken]

LOL  I go to reply and all these animated emojis show up..........  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

[Alexysis]

I'm "on the list", but not active. You may ask why.....

First, I'm 57 and work in small-scale manufacturing, where employment is cyclical and often tenuous. I don't believe for a second that any employer will keep my job available for a single second after the 3 months required by law.

Second, after 1 year of having your transplant, you lose your Medicare. If my job disappears while recovering and I can't get new employment, how will I survive on disability (which will also disappear after a year..) AND pay for the expensive anti-rejection meds?

Third, my mom had 2 transplants, and I got so see the full horror of medication side-effects, as well as the crisis when her first transplant failed. She went from being an attractive middle-aged woman to having chipmunk-style jowls in less than 6 months.

Fourth, sometimes anti-rejection meds clash with other medications and therapies, which was at least a factor in my mother's eventual demise.

So, I've decided that a transplant would be a good idea when I turn 64, so that i won't have any lapse in medicare. Also, if I only get a few years on a transplant, at least they will be during my retirement, when I can enjoy them. Until then, I can't see enough of a benefit with a transplant to be willing to take the chance.

[Paul]

Alexysis - They do not like giving transplants after 65. If you wait until you are 64 you may find it is too late.

[Simon Dog]

Second, after 1 year of having your transplant, you lose your Medicare. If my job disappears while recovering and I can't get new employment, how will I survive on disability (which will also disappear after a year..) AND pay for the expensive anti-rejection meds?

Disability goeth poof! after a year.

I believe you get to keep Medicare for 3 years.

[Riki]

I'm told that I'm "on hold" on the list, but I don't believe them.  I don't think I'm on the list at all.  That's been my status since about 2014.  I think the reason I'm not on the list is bs.  After I'd been on the list for 9 years, it was decided that anyone who wants to be on the list must have a BMI of 35 or lower.  Because I was on the list before this decision was made, they said I needed a BMI of 40.  My BMI is 41, so I'm not on the list.  I think the number is arbitrary, and it should be considered on a case by case basis.  Not all of us are fat because we eat too much.

So, when someone asks me why I'm not on the list, I say "I'm too fat."  That usually shuts them up

[Alexysis]

I guess you are right, Medicare continues for 3 years after a transplant, but SSDI for only 1 year. Also, my mom had a transplant at age 71 or 72, so, yes, they give transplants after 65 here in the US. We have laws against age discrimination.

[kristina]

I'm "on the list", but not active. You may ask why.....



Third, my mom had 2 transplants, and I got so see the full horror of medication side-effects, as well as the crisis when her first transplant failed. She went from being an attractive middle-aged woman to having chipmunk-style jowls in less than 6 months.

Fourth, sometimes anti-rejection meds clash with other medications and therapies, which was at least a factor in my mother's eventual demise.

So, I've decided that a transplant would be a good idea when I turn 64, so that i won't have any lapse in medicare. Also, if I only get a few years on a transplant, at least they will be during my retirement, when I can enjoy them. Until then, I can't see enough of a benefit with a transplant to be willing to take the chance.

Hello Alexysis,
Two months ago I surely would not have agreed with these two points you have mentioned above, but two months and a kidney-transplant later I agree with your mother, it honestly can be an absolute horror, if you are unlucky enough to come across whatever "wrong one's" ...
Best wishes from Kristina.

[kitkatz]

So many arbitrary reasons not to get listed.  I think there needs to be an over haul of the hospital decision making processes.  Every hospital should be working form the same rubric for all patients.  It should be  a simple checklist, if you need more tests for the checklist, then you get them.  The simple checklist should give the patient an immediate yes or no, yes -to go into further testing; no, something needs to be worked on or does not qualify.  It has to be nation wide, so NO means NO everywhere with everyone.

[Simon Dog]

It has to be nation wide, so NO means NO everywhere with everyone.

Beware of unintended consequences with that one.  You are talking about replacing a free market with a cartel.

[Riki]

I can't agree with that Kitkatz.  I think that decisions on these types of procedures should be weighed on a case by case basis.  In my own case, yes, I have a big behind, however, it's not something I created by overeating.  I've been the same size proportionately since I was able to walk.  When I researched my disease, my body type was one of the indicators of it.  It's one of the few indicators that I have, along with kidney failure and vision issues.  If the team could take into account the fact that I do watch what I eat, I keep my blood levels as close to normal as possible, and I exercise on a regular basis, then maybe I'd still be on the list.  With what I'm doing, I might lose a little bit of weight, but I'm not going to get that BMI below 40, no matter what I do.  My body just isn't built that way.

[Paul]

The other point to note about BMI is that if you are a body builder the BMI will list you as being overweight because it goes by weight and cannot differentiate between muscle and fat.

[Riki]

The other point to note about BMI is that if you are a body builder the BMI will list you as being overweight because it goes by weight and cannot differentiate between muscle and fat.

Which is why I think it's stupid to go by BMI alone