I've long been a strong advocate of encouraging people to sign on as organ donors. Personally, I signed the form and put the pink dot on my very first California driver's license at the age of 16. I've been a blood donor for decades and am on the National Marrow Registry.
What struck me this morning was this: Those people whom we'd most like to sign on for the various tissue donor programs (that is, the relatively young and the relatively healthy) are also those people who are least likely to have adequate insurance coverage and therefore most likely to be denied the very lifesaving treatments that they enable.
Meanwhile, simply by virtue of economics and simple good fortune, others benefit even though they themselves may have long refused to participate as a donor and/or created their own need by lifestyle choices.
Already the wealthy have an advantage regarding organ transplantation because they can sign up on every regional list (not to mention internationally) with the expectation that their wealth permits them to be anywhere in the country within 6-8 hours.
It's hard for me to look at my uninsured nephews and encourage them to be tissue donors knowing that they would be denied a transplant for the inability to pay for it.
Plenty of young people do have insurance and can get it a) through their parents b) through college or c) through work. I've worked full-time since I was 17 years old, so being young does not mean people can't get insurance. I think it makes sense to for everyone to sign on as an organ donor, and don't believe that younger people have less access to insurance. Insurance is actually CHEAPER for the young and the healthy, so they could go on to the internet and purchase a policy if that was a priority for them. (I am working p/t now, so that's exactly what I did.)
How much is your policy, and where did you get it from, if you don't mind me asking? If my husband gets in to a PhD program while I'm still in nursing school we will need to find a way to get insurance especially since we have a young child. And, I would just like to point out that it can be difficult to get coverage. Before I married, I was on my parent's insurance while in college. However, it did not cover hardly anything in the town I was going to school at (and it was in the same state as my parents) The college policy at my current University is quite steep, I could never afford it and thank God my husband works fulltime and we get our insurance thru him. Even though it's close to $300/month!
now speaking of scary stories: a friend of my brother's roommate was in mexico and met this gorgeous gal in a bar. they went back to his place for some fun. the next thing he knew, he was waking up in a bathtub full of ice with a roughly sutured incision on his flank and a note telling him to call an ambulance asap. it turns out that one of his kidneys had been removed!!!
urban legends abound...
oh. my. goodness. that is truly frightening & i'm going to mexico in june:chair:
not all donation is a result of neglect. I hope that when I am through with my organs, some baby gets what I can offer. Even it organs go to a creep I still feel I gave them a chance to change.
Well, I guess I no longer have to worry about myself or my family.
It turns out that I have the inside track on a deal from a lawyer in Nigeria. I'm not at liberty to share the details but suffice it to say that my financial concerns should be short-lived.
First off, as a kidney transplant recipient I can not explain to you what it is like being on dialysis. I can not explain to you what it is like to be on dialysis for 8 hours a day EVERY day for a year. Nor can I explain what it is like to wake up in pain every two hours during the drain cycle of peritoneal dialysis. I also can not explain what it is like to be tired day in and day out and knowing you are slowly dying and that dialysis is just a temporary band-aid until my body can't endure the procedure anymore. I also can not explain the difference a kidney transplant made to my physical and mental health. Imagine being attached to a machine for eight hours with a catheter hanging out of your stomach. Imagine what it is then like to have your life back and the only restriction your life has now is making sure you have your second set of pills plus a couple of days supply with you at all times.
I did not abuse my kidney and I led a VERY VERY clean life. I am a 34 year old female that runs over 5 miles a day and is a competitive cyclist. There are a lot of reasons people need transplants, it is not always due to neglect of their bodies. My grandfather had kidney disease and it skipped a generation and went to me and because I was born with one kidney I endured End Stage Renal Failure.
There are programs out there to help patients...you just have to be willing to do the grease work to find them.
Also, I can't really say I wouldn't use money to my advantage after having been through what I have. That is just me being TOTALLY honest.
First off, as a kidney transplant recipient I can not explain to you what it is like being on dialysis. I can not explain to you what it is like to be on dialysis for 8 hours a day EVERY day for a year. Nor can I explain what it is like to wake up in pain every two hours during the drain cycle of peritoneal dialysis. I also can not explain what it is like to be tired day in and day out and knowing you are slowly dying and that dialysis is just a temporary band-aid until my body can't endure the procedure anymore. I also can not explain the difference a kidney transplant made to my physical and mental health. Imagine being attached to a machine for eight hours with a catheter hanging out of your stomach. Imagine what it is then like to have your life back and the only restriction your life has now is making sure you have your second set of pills plus a couple of days supply with you at all times.
I did not abuse my kidney and I led a VERY VERY clean life. I am a 34 year old female that runs over 5 miles a day and is a competitive cyclist. There are a lot of reasons people need transplants, it is not always due to neglect of their bodies. My grandfather had kidney disease and it skipped a generation and went to me and because I was born with one kidney I endured End Stage Renal Failure.
There are programs out there to help patients...you just have to be willing to do the grease work to find them.
Also, I can't really say I wouldn't use money to my advantage after having been through what I have. That is just me being TOTALLY honest.
It is awesome you got a transplant. My cousin wasn't so lucky and after 11 years on the donor list she died at 26. Maybe if more people were checking organ donor on their license her young body would not have given out on her the way it did. I miss her dearly but I am happy she is at peace and not suffering anymore. But I would give all the money in the world to go back in time, find her a donor, and still have her around. She was my best friend
There are programs out there that can cover transplants. I've seen patients with little to no insurance receive state aid that covered the transplant.
What I find discouraging is the number of people who lie, beg and plead to get put on the transplant list due to their own poor health behaviors, who haven't demonstrated compliance with a regimen or a willingness to change their behaviors and then when get a transplant waste the organ due to their non-compliance. If someone isn't willing to demonstrate they can change their behaviors for an extended period of time, show a willingness to be compliant with a treatment regimen, why should they be eligible for organ transplant? I have to be honest, I've seen some transplants recently that have wanted me to take that little heart off my driver's license. I know of a heart txp pt who blew his first heart out due to cocaine use, convinced everyone he was a changed man with little demonstration of changed behavior (in his case, clean drug tests), got a new heart then promptly stopped taking his anti-rejection meds because it "was a hassle" and then started using cocaine again. Needless to say, he died and a precious organ was wasted.
I'm not saying all transplant cases are that way...I've dealt with many that aren't, people that are willing to do anything for a new lease on life. But it just seems recently, I've had to deal with a run of people who aren't compliant. Can make for a challenging work time.
Specializes in Professional Development Specialist.
A Dirty Little Secret that I learned a few years ago...
A wealthy uncle of mine was told by his Transplant Doctor, "When you're ready for a heart, we will have one waiting on you."
Disgusting.....
Having a husband intimately involved in the transplant selection process, I can say this kind of a thing is either an urban legend, a simple attempt at comfort on the Drs part, or plain old black market. Did the doctor mean that if a donor was available and he was truly in need/a match then he would be at the top of the transplant list? Or did he really mean if the uncle needed a heart he would stop at nothing short of homicide?
It's a disservice to EVERY donor and recipient in need to perpetuate such myths. Such statements convince people that the donor system is corrupt and biased, so it's okay to defer donation. But the cold hard truth is many, many, MANY more people die waiting for that one shining last minute hope than those that in theory live on through urban legend stories.
I will tell you that once you receive one and you are so close to death...the donor becomes your angel.
As for the compliance...eh...I guess you have to be in the person's shoes and understand what is going through their minds. I remember them telling me I was in kidney failure and thinking the doctors were missing a few brain cells because I have never "looked sick" and I was still able to run and do everything I normally did. It is hard to look in the mirror and believe you are sick when the person looking at you doesn't look it.
As for noncompliance lol I was very noncompliant because I was dillusional and young and thought I was invisible. When I was on dialysis I was required to fill out flow sheets, which no one ever looked at btw. Now explain to me why would I care about writing the numbers down if my normal output did not change? However if the output was above or below my normal range I did note it. Sometimes I think there is focus on stuff like writing numbers down that no one is going to look at that is not really a big deal. As a kidney patient I know my body very well.
Also, many people have trust issues with the medical profession. I always look up something my primary says before I believe him because his nurse told me the rh factor matters in transplantation. FYI...it doesn't so in a matter of a minute this woman crushed all hope I had because my entire family was O positive while I am O negative. Also, being on the other side, when your only recreational visits are to the doctor office sometimes people rebel bc it flat out sucks...trust me I think that it is not all black and white...
There are programs out there that can cover transplants. I've seen patients with little to no insurance receive state aid that covered the transplant.
What I find discouraging is the number of people who lie, beg and plead to get put on the transplant list due to their own poor health behaviors, who haven't demonstrated compliance with a regimen or a willingness to change their behaviors and then when get a transplant waste the organ due to their non-compliance. If someone isn't willing to demonstrate they can change their behaviors for an extended period of time, show a willingness to be compliant with a treatment regimen, why should they be eligible for organ transplant? I have to be honest, I've seen some transplants recently that have wanted me to take that little heart off my driver's license. I know of a heart txp pt who blew his first heart out due to cocaine use, convinced everyone he was a changed man with little demonstration of changed behavior (in his case, clean drug tests), got a new heart then promptly stopped taking his anti-rejection meds because it "was a hassle" and then started using cocaine again. Needless to say, he died and a precious organ was wasted.
I'm not saying all transplant cases are that way...I've dealt with many that aren't, people that are willing to do anything for a new lease on life. But it just seems recently, I've had to deal with a run of people who aren't compliant. Can make for a challenging work time.
I totally agree! I know when I went in for mine I went through hoops for my new lease on life. It disgusts me that they are allowed to damage their own body and then take a gift and totally misuse it. I wish I could explain to everyone how much it means to someone like me. It is not an easy process, you fight for your life, and jump through hoops, and overcome obstacles, you never knew you had the strength to overcome, but in the end it is sooo worth it.
.thumb.gif.a0171653eaae518ecf728198d692fc48.gif){kind=avatar}
because I have never "looked sick" and I was still able to run and do everything I normally did. It is hard to look in the mirror and believe you are sick when the person looking at you doesn't look it.
Devie06
133 Posts
How much is your policy, and where did you get it from, if you don't mind me asking? If my husband gets in to a PhD program while I'm still in nursing school we will need to find a way to get insurance especially since we have a young child. And, I would just like to point out that it can be difficult to get coverage. Before I married, I was on my parent's insurance while in college. However, it did not cover hardly anything in the town I was going to school at (and it was in the same state as my parents) The college policy at my current University is quite steep, I could never afford it and thank God my husband works fulltime and we get our insurance thru him. Even though it's close to $300/month!