Why I Tried To Donate A Kidney (And So Should You)
I signed up as an organ donor many years ago. The concept of being buried in a box or cremated with intact organs and tissues that could either save or greatly improve someone else’s life seemed insane to me, over 40% of people who die are not organ donors. I promise you, you can’t take them with you (just like all the wealth you are building). We live in a time where it is possible to save other people’s lives through organ donation, which has only been true for a blink of an eye in the history of humanity. The first successful kidney transplant from a deceased donor was in 1950 and the first successful transplant from a living donor was in 1954. Recently I decided to donate a kidney and went through the process to become a living organ donor.
The Need For Living Kidney Donation:
According to The National Kidney Foundation, of the 121,000 Americans on waiting lists for organs a full 100,000 of them are awaiting kidney transplants. Of these 100,000 people in 2014 4,761 patients died while waiting for a kidney and 3,668 became too sick to receive a transplant. Over 3,000 patients are added to the waitlist every month. Roughly 17,000 transplants occur in the US every year, with around 5,500 coming from living donors.
When living donors donate a kidney it is a much better situation than using a deceased donors kidney; they have fewer complications and logistical problems, and tend to last several years longer. A kidney transplant typically lasts for 12 years from a deceased donor and 15 years from a living donor. In addition to this life extension, the quality of life for the recipient is greatly increased. Don’t let these relatively short averages discourage you, these are averages. Look at this story about a transplant from 1967. The donation from her Father has lasted over 50 years!
By analyzing these statistics we can see a massive problem.
- More people are being added to the list every year than transplants occur. With 36,000 new people added to the list and only 17,000 transplants occurring each year, even if the list had ZERO people waiting we would still be doing less than half the transplants that need to be done.
- There were only 11,500 deceased transplants in a country with over 300 million people. I did some digging and found that although roughly half of all Americans are signed up as organ donors, only 0.3% of people die in a manner and timeline that allows their organs to be used. This was a huge shock to me. I thought for sure because I marked the box when I died my organs would be used. I had no idea I had only a 1 in 334 shot of actually being able to help anyone. This should be a major flashing light for people. If you are ever saying your goodbyes to a loved one and the doctors ask you about organ donation, your loved one is in a position that only 0.3% of people are in with the extremely unique ability to save other people’s lives.
- In 2014 only 2,003 of the live donations were from non-related donors. With a U.S. population of roughly 235,000,000 people over 18 this is a rate of only 1 out of every 117,234 people that are donors to non-relatives. For total living donors of 5,500 this is 1 out of every 42,727 people.
Barriers For People To Donate A Kidney:
Fear of risks: There are health risks involved with living Kidney donation, however they are relatively minor. There is a roughly 1 in 3,000 chance of dying, which is extremely low. This is in line with similar invasive surgeries like an appendix removal. To put this in perspective, there is a 1 in 1, 100% chance that the people on the kidney waiting list that would be getting your Kidney will die without one.
Fear of needing it later: The kidney is an amazing organ. We truly only need one and after a transplant the one you keep actually increases in size to compensate for the one that is missing. As a percentage of the population the odds of you in the future needing a transplant are low, and living donors are put higher on the transplant list if they do end up needing one in the future. After you donate a kidney, the donor ends up with roughly 75% of total kidney function.
Lack of knowledge: I knew there were waiting lists for organs but had no idea that thousands of people died each year waiting. I figured there might be a few people, but thousands? I also thought most recipients were older, but this is not the case. Human life matters regardless of age, however a 30 year old will miss out on a much bigger chunk of life without a transplant than a 60 year old.
Monetary considerations: Typically the recipients insurance covers 100% of the medical costs associated with donating a kidney. This is the bulk of costs, but there are other costs associated. Missed work, child care, hotel stays, and travel expenses. Since I am off work in the summer I wouldn’t have any missed work, but typically a donor will miss anywhere from 2 – 8 weeks of work. Most people can not afford this. Add in child care, hotel stays, and travel expenses, and for the average person all in you could be looking at over $5,000 in total expenses (with lost wages included) to donate a kidney.
There are programs to cover these costs like the Living Donor Assistance Center that look at both the donor and the recipients financial situation. In a nutshell, If the donor is below 300% AGI and the recipient is below 300% AGI then the donor will likely be given assistance for travel and lodging costs. For me personally it felt like way too much hassle to go through for the benefit. It’s really difficult for us to document our income and it just feels like jumping through too many hoops, I’m glad that the program is there though to help people. This program does not cover the bigger costs associated with donating a kidney – lost wages and childcare.
This is an insane problem that we have not fixed. Not only should these expenses be covered by the recipients insurance, but living donors should be compensated for donating. It’s all well and good to say we SHOULD be altruistic good doers, but the statistics don’t work. When less then 1 in 100,000 people donate a kidney to a non-relative the system is broken. If we, as a society covered lost wages for donors and paid a fee of $5,000 or even $10,000, the waiting list would be eliminated. Human life is worth FAR more than $5,000 to $10,000. Some economists have even proposed payments of $45,000 from the government to live donors. The cost of such a program would be relatively low. If we increased living donations from 5,500 to 11,000 per year the cost of $5,000 per donor would be $55,000,000. For $45,000 payments the cost would be $495,000,000. For a country that spends $3.5 Trillion a year on healthcare this is a tiny fraction for preventing 11,000 deaths a year. The payments also wouldn’t have to be state funded, they could be funded through insurance. Alternatively, we could allow for payments to donors through charitable organizations or directly from those needing a Kidney. We only need the government to end the ban on the sale of organs. We have 235,000,000 extra kidneys walking around, and can not eliminate a wait list of 100,000? This is a broken system.
It is possible to eliminate wait lists for Kidneys through economics. In Iran there is virtually no waitlist for Kidneys. In 1988 they created a system where donors are compensated with an average payment of $4,500. People don’t die waiting for a Kidney in Iran. When I went for my evaluation the costs for all the tests that were ran totaled over $8,000, which was covered by the University of Michigan. If the tests to find a donor are this expensive, it would certainly be possible to spend the same amount compensating donors.
UPDATE 7/14/19: President Trump signed an executive order to increase the amount of Kidney donations that occur every year. A big part of this was getting rid of the regulation that prohibits reimbursement for lost wages and child care. Up until right now it was not legal for insurance companies, charities, or individuals to reimburse kidney donors for their lost wages or child care. This is a huge barrier for the vast majority of Americans. Reimbursements for these expenses is a big net gain for lives saved and financially for insurance companies and the federal government through Medicare and Medicaid programs because the cost of dialysis is very high and these reimbursements are quite low in comparison. Congress still needs to act to allow reasonable compensation for kidney donations in addition to expenses incurred. There may be able a lot you disagree with President Trump on, but this was certainly a positive action he took and a good use of executive power.
Why I Decided To Donate A Kidney:
A parent in our cub scout group has had serious health issues for the past few years, but I didn’t know the full extent of them. A couple months ago he posted on Facebook the seriousness of his situation and detailed where he was at and that without a transplant he would need to go back on dialysis and will most likely have a very decreased life expectancy. He is only a few years older than me and has 2 young kids. I tried to put myself in his shoes. I can’t imagine knowing that I am likely to die while my kids are still young. I really can’t imagine knowing that I need someone else to have a surgery that will have very little effects on them in order to live a normal life, but everyone has an excuse about why they can’t.
The Process To Donate A Kidney:
- Call the number and tell them you are interested in donating a kidney. If it is for a specific individual you need to give them the name. I attempted to donate through the University of Michigan organ donation program. Their number is 1-800-333-9013.
- Forms: I had to fill out a 1 page medical form, extremely straight forward information.
- Screening: For the medical screening I had to drive across the state to the University of Michigan. They did testing on me over 2 days. The first day was blood tests, tissue tests, medical background, an education class, consultations and a liver CT scan. On the 2nd day they did a nuclear medicine test that takes 4 hours to determine my kidney function level. If you are not a match for your specific recipient and are otherwise a healthy donor they can do a paired donation where someone else in the same situation swaps recipients with you. The total cost for me for this 2 day screening was $45 in gas, $25 in parking fees, and 15,000 IHG hotel points. The parking fees should have been lower, but on the first day I didn’t fully read the fee chart. The fee chart is something like $3 for under 2 hours, $5 for 2 to 8 hours and $20 for over 8 hours. I got there quite a bit early and was there for around 8 hours and 15 minutes.
- Scheduling: I went to the University of Michigan and they do organ donation screening on Tuesdays and Wednesdays then the doctors do a joint review on the following Monday to determine if the potential donor is a good candidate. Because I did my evaluation the week before Memorial day this was a 2 week lag. From my conversations with the doctors and with the social worker / donor advocate scheduling for surgery primarily revolves around the schedule of the donor. The recipient needs a kidney, the donor is doing this without a pressing personal need.
- Surgery: The surgery is fairly straight forward. They remove 1 kidney from the donor and put it in the recipient. The donor typically stays in the hospital for 1 night and is released the following day.
- Recovery and Follow Up: After a kidney donation the donor should do a lot of walking but no strenuous activity, including no driving for 2 weeks. At 2 weeks a followup appointment at U of M is required. At this point the driving restriction is typically released. For these 2 weeks you need 24/7 support from other people. As far as time off work it is a case by case basis. Some people who are recovering well who have a desk job might be able to return at 2 weeks, while someone with a physically demanding job may need 8 weeks off. There is a strict no lifting anything over 10 pounds for 8 weeks rule. Our plan was to have my parents come up to help and my wife would also take those 2 weeks off of work. Donors are also required to do follow ups at 6 months, 1 year, and 2 years. U of M sends a medical questionnaire and labs are done locally with results sent to U of M.
The Screening Results:
2 weeks after my screening I received a call from the transplant center that explained to me that I was not a good candidate for a kidney donation. My kidney function test showed my Kidneys function at 81%. The typical cutoff for donation is 80%, however with me being young (33) the doctors felt this caused too much of a risk for me. My kidney function would immediately be at 40% following a donation, which is a state of Kidney failure. From this testing I also found out that I was pre-diabetic according the U of M guidelines. My Hemoglobin A1c was 5.7, which the normal range is 4.2 – 5.6, with pre-diabetes being 5.7 to 6.4%. Unfortunately I will not be able to donate a kidney. I’m certainly disappointed in this. I really wanted to donate, but it isn’t possible.
There Is A Need For Kidney Donation Now:
I love looking down the road to see what is coming up in technology. There have been unreal advancements in technology that will allow for lab grown organs to be created and for humans to be able to use animal organs. It’s highly probable that if I live a full life organ donation will not be a thing anymore by the time I pass. There will have only been under a 100 year window in which humans removed organs from the deceased or living and transplanted into another. These futuristic methods are very promising. Although the future is going in that direction, people are dying in the now. Most of us only need one Kidney. I urge you to consider donating a kidney to either help someone you know, or to help a complete stranger. As a bonus when donating to a stranger you start whats called a donation chain that can facilitate several kidney transplants.
Have you ever considered donating a kidney? What barriers are stopping you?
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