No updates on a chain yet. Thanks for this gem Rob Lee and Polly Carlton!

GREAT NEWS! I got a call from Northwestern today confirming that Phase 1 of testing is complete, and I am eligible to donate as soon as I am matched to a recipient. This should happen inside the next 6 months!

If you are donating a kidney, it is ideal to be type O, if you need a kidney, it is ideal to be AB.  I am A+ (not ideal), so my recipient will need to be A+ or AB+.  On rare occasions A’s can also donate to O’s.  Here is a table that explains who can donate to who.

.

I find that this table is helpful to look at next, so you can determine the approximate percentage of the population that you can donate to, or receive from.

To be a match, several medical fronts need to align between the recipient and me to make sure we are compatible. Things like age, weight, and a laundry list of biological markers are considered when making a good match. The closer the match, the more likely it is that the recipient won’t reject my kidney once it is transplanted. This happens about 15% of the time in the first year after transplant, and is caused by the recipient’s immune system attacking the foreign organ. So the goal is to minimize the opportunity for the immune system from doing this by creating a good match from the start, and then giving the recipient anti-rejection drugs after the transplant (for life).

First, the recipient needs to have their antibodies measured so that their  Panel Reactive Antibodies (PRA) can be calculated.  PRA is measured from 0-100; the lower your score, the easier it is to get a suitable donor.  The cPRA estimates the percentage of donors with whom a particular recipient would be incompatible. In other words, it would give you an idea of the percentage of offered kidneys your body would likely reject at the time of transplantation. People who have previously had a transplant and/or a blood transfusion are more likely to have a higher number.  Interestingly, women who have had children often have a higher score as well.  The common thread is having had somebody else’s parts (blood, organ, fetus), in your body.  Over time, patients develop antibodies against those proteins, and once they’re in the system, they don’t go away—meaning they’ll be more likely to attack foreign proteins from a new transplant.

According to the National Kidney Foundation, “Patients with high cPRA levels get priority for transplantation because it is harder to find compatible donor organs in those situations. The good news is that most patients awaiting kidney transplantation have low levels of anti-HLA antibodies, but it is estimated that 9,000 patients on the waitlist have cPRA > 95%.”

Next, the doctors will do a cross match with my blood and the potential recipient’s blood.  This means they mix a vile of my blood with a vile of the recipient’s blood, and watch to see if the blood likes each other.  The test will be positive or negative.  You want it to be negative.  A positive result  means that the recipient’s blood is fighting my blood, and we are not a compatible team 😦

Lastly, there is something called leukocyte antigens that they look at. These are markers that appear on the surface of immune cells, commonly used to determine compatibility between organ donors and recipients. Ideally, the donor and recipient would have the exact same set of 6 antigens, since any unfamiliar antigen will invoke an immune reaction (like an allergic reaction). Identical twins are the only cases that have the exact same set, so since I am not donating to a twin, second best is to find a match with a lot of overlap.  Statistically, the life of the transplanted kidney will be longer the more overlap we have between our leukocyte antigens.

In a nutshell, this testing is pretty complex, and lots of smart people will use a computer system and complex algorithm to make sure they come up with a good match.  Just because the match looks good on paper doesn’t mean that the recipient does not have antibodies to my antigens. If our blood mixes well, we can be matched for donation.

The donation can happen at anytime now. We are shooting for late August or September, but if they can initiate a long chain before then, I will do it sooner. The time frame is partly selfish- I don’t want to cut into boating season or get a post-opt hernia from bouncing around on the river 🙂

So until then, I’ll continue to research fun stuff and keep the posts coming! Thanks for reading!

-LJDL

So what kind of time commitment is required to donate a kidney? One of the goals of this blog is to time the donor process from start to finish so someone thinking about donating has a point of reference about how this decision is going to effect their short term life. Of course, this will vary from person to person, especially if you are donating to someone in a different state and are required to travel.  I am breaking this up into 4 phases, and covering the details of each phase in blog posts.

• Phase 1: Time spent determining if you are a viable candidate to donate a kidney
• Phase 2: Time spent getting the transplant and staying in the hospital
• Phase 3: Time spent recouping before returning to work
• Phase 4: Time spent getting back to “normal”

So here is my experience with Phase 1:

The donor assessment phase, put simply, is the phase where the transplant team makes sure that you are physically and mentally capable to donate an organ.  It consists of a battery of blood and urine tests, as well as some meetings with a donor advocate who is there to make sure you understand everything about the donor process, especially the risks.  They make sure that nobody is pressuring you into donating, and make sure you understand that there is no medical advantage to becoming a living donor (they repeat that part a lot).  You also talk with a psychologist whose job is to present all possible negative outcomes, and make sure you are a good candidate to donate.  Here is a the detailed version if you are interested.

According to the Living Kidney Donor Network, the donor assessment phase time frame varies, and you should check with your hospital to get a rough idea of how long this phase will take. Things like where you live and what tests you require might effect the timeline, but typically it takes 2-6 weeks. Wherever possible, the assessment is tailored to your needs and commitments. For me, this phase is taking about 9 weeks, which has been largely decided by appointment availability at Northwestern and not affected by any of my own schedule issues- I am making appointments as fast as they offer.

Here is a breakdown of what they test for in Phase 1 to ensure there are no medical or psychological reasons that will keep you from being a living donor:

• Complete blood count (CBC) with platelets
• Chemistry Panel
• Liver function tests (LFTs)
• Prothrombin Time / International Normalized Ratio (PT/INR)
• Lipid panel
• Hepatitis
• Syphilis
• Cytomegalovirus (CMV)
• Epstein-Barr virus (EBV)
• HIV
• A chest X-Ray
• An electrocardiogram (ECG)
• Urine culture (several)
• 24-hour urine collection for protein and creatinine clearance
• Medical history
• Psychosocial history
• Diagnostic tests
• Evaluation of the kidney’s size and shape
• Evaluation of the kidney’s blood vessels and ureters

So today marks 9 weeks into the journey, and in the next 2 days, I should know that I am for sure a good candidate at which point I can technically donate immediately. About one in 750 people is born with only one kidney. The medical term for this condition, which is more common in men than women, is renal agenesis. Usually it’s the left kidney that is missing.  Other people have 2, but only have 1 working one, and don’t even know it.  Either of these scenarios would disqualify me.  Everything has looked good test-wise to date, so unless I have funny kidneys or only one to begin with, it should be a go!

Phase 1 was easy.  I am only leaving Phase 1 with 2 questions that the hospital does not help answer:

• Life Insurance:  Donating a kidney can effect your life insurance and/or the ability to get it.  I am unclear on how my specific insurance will be affected, and need to figure that out.
• Health Insurance: The Affordable Care Act has made it illegal for health insurance companies to refuse to cover you or charge you more because you have a pre-existing condition. Still, I want to make sure that someone more qualified than me goes through the fine print on my insurance to make sure there isn’t anything to worry about.

My preference is to donate at the end of the summer/early fall, and they take that into consideration, which is cool.  It would be unusual if an opportunity to donate doesn’t arise within the year.  I also find out that they DO let you put parameters on who your kidney goes to, but that most people don’t do that.  For example, you could say you will only donate to a child.  I feel pretty strongly about 1 parameter, and that is to start a chain.  So with that parameter, I know 1 kidney ends up helping a minimum of 2 people.

So that’s all for today!  Thanks for reading, and don’t forget, you are invited to join me!  Here is an inspiring video about a really long transplant chain to end the blog today!

-Laurie

 

Paired Donation can work in a few different ways.  According to the Living Kidney Donor Network, the concept of kidney paired exchanges have revolutionized living donor transplants by “eliminating incompatibility as a barrier to donation and providing a way for recipients and their incompatible donor to be paired with another incompatible recipient and donor.”

This video from UNOS illustrates a 6-way swap paired exchange, it is donation coming full circle.  3 people need a transplant, and each has a willing donor that is incompatible to donate to them.  They essentially have an organ swap resulting in 6 surgeries and 3 transplants.

 

When you have a non-directed donor starting the process (like in my case), it can keep paying forward vs. coming full circle.   One nice thing about this chain, is that there is a person on the transplant wait-list who gets a transplant out of the deal- this person is winning the “organ lottery,” and likely isn’t expecting this scenario to play out.

 

The Alliance for Paired Kidney Donation and the Living Kidney Donor Network have great information about the different types of paired donations.  WaitList Zero is a great organization promoting living donation as well.  All worth checking out if you are interested in living donation!

The odds of donating an organ and living a totally normal life afterward are excellent. Statistically, you are more likely to choke, accidentally poison yourself, or die of a heart attack. Once the kidney is removed, the remaining kidney doubles in size in under a year, and can function at the capacity of 2 healthy kidneys. According to Johns Hopkins, recent studies have shown that donors tend to do as well or better than the general population in regard to long term medical complications.

In the event that your remaining kidney does fail, there is a priority system in place so that donors receive extra points for deceased donor kidney transplant when they are on the waiting list. This means that you get first dibs for life on the waiting list in the event your remaining kidney fails.

Northwestern Memorial’s program among the top nationally in patient outcomes and the number of transplants performed, transplanting around 300 organs a year. They have performed 2,300 living donor kidney transplants (86 total in 2015), and more than 220 living donor liver transplants. Newly released data from the United Network of Organ Sharing (UNOS) indicates that Northwestern Memorial Hospital’s living donor kidney transplant program is the largest in the country based on volume of transplant. A donor has NEVER died as a result of complications from donation at Northwestern.  The donor surgery has a .03% mortality rate (i.e., 3 in 10,000). As a point comparison, according to the U.S. Census Bureau, the 2007 infant mortality rate in the United States is .64% (e.g., 64 in 10,000) indicating that it is about 20 times riskier to be born in the United States than to donate a kidney.

At Northwestern, the overall donor complication rate is 5.7%.  The most common complications are non-life threatening, do not prolong hospital stay beyond a day, and include things like needing a blood transfusion or not being able to urinate temporarily after surgery.  1 percent of donors have needed medication, like antibiotics, for wound infections or post-operative pneumonia.  0.2% of donors have had ongoing problems, like nerve damage or hernias.  Less than 0.1% of donors have had renal failure after donation.

Hi, thanks for visiting my blog!  This blog is about my journey to become a “non-directed living kidney donor.”  That means that my goal is to donate a kidney to someone who needs one who I don’t know, and may never know.

I am doing this for 3 reasons:

Reason #1:  My family (I have a great family) benefited from organ donation, and I feel extremely compelled to give back to that system because I am grateful in a way that’s difficult to express in words.

My dad is a liver transplant recipient.  He received a liver transplant March 1, 2011 at Northwestern Medicine in Chicago, and is living a fully normal life.  He blogged his entire journey.  Check out Dan’s Liver Blog to read his story about his transplant and Transplant Village.  It’s an informative, easy, fun read.

Before he needed a transplant, I had always been a registered organ donor, but hadn’t really been exposed to anyone or any situations that would make me think about organ donation on anything more than a superficial level.  It was marked on my driver’s license, and it’s something I was comfortable with happening when I died.  I think this is pretty normal for people.  Sometimes you don’t take time to form opinions about things until it matters to you on a personal level.  Now, it really matters to me on a very personal level.

During and after the transplant it was hard to articulate how it felt to be the lucky recipients of a healthy liver.  Sadly, an average of 21 people die each day because the organs they need are not donated in time (from living or deceased donors).  As much as my family felt happy for the “win” when my dad received a life-saving transplant, we knew it was in exchange for someone else’s “loss,” which is humbling.

My desire to give back to this system is so strong,  it genuinely feels like something I am supposed to do.   I feel very fortunate to have had the life I have had so far- I really like my life!  Not everyone can say that, so why not pay it forward?  I really can’t wait to do this!

Reason #2:  There is a SURPLUS of organs, yet when you go online all you find are statistics about the alleged “organ shortage.”   A cultural shift in the way we talk about living donation is on the horizon, and more living donors will bring change to a tipping point faster.

Everywhere you go online you can read about how we have an organ shortage that prevents everyone who needs a life saving transplant from getting one. THERE IS NOT A SHORTAGE OF ORGANS, THERE IS ACTUALLY A SUPLUS OF ORGANS! There is a shortage of organ donors, both living and deceased.  Efforts to compel people to become organ donors fall short in asking them to become donors when they die only.  Being a donor when we die is great, it’s super important, but why wait until we die?  Why not do it now?

If you were on a plane that was about to crash and had 2 parachutes, and the guy next to you didn’t have one, wouldn’t you give him your spare?  Or would you take it with you because someone else might need it later?  What if you and the guy next to you were both bit by a poisonous snake, and you had 2 anti-venoms?  Wouldn’t you give one to the other guy, or would you hold onto it? I get that these examples don’t require the loss of bodily integrity, and being a donor does.  But I hope you can see the picture I am trying to paint.  I also understand that there are times in life more conducive to doing this.  For me, right now is a good time.  I completely understand that not everybody is in the position to do this at any given time, and am in no way judging people who don’t share my point of view.

Point being, there isn’t a shortage of organs, there is a shortage of people who understand or “care to share their spare.”  This is not because people are selfish, its because they are complacent, or uninformed, and have been shaped by a culture that doesn’t actively promote living organ donation.  You just need 1 kidney to live a full and normal life.  And if you donate part of your liver, you get the whole thing back (it grows back to its normal size).  Why not share this natural resource and put it to immediate use?  In any other situation if we possessed something that we didn’t need that would give life to someone who would otherwise die, we wouldn’t’ think twice about giving it to them.  So why do we treat our kidneys and livers differently?  While I realize this blog isn’t going to shift the way our culture thinks, I would really like to be part of the movement that will shift our attitude about living donation.  That’s my second reason.

Reason #3:  Demonstrate that living organ donation is a non-event.

I am stealing the term “non-event” from my dad who considers his own transplant to be a non-event.  My mom, sister, and I would disagree, as it was traumatic at times, but I like the term and feel that if a liver recipient can say that, then a kidney donor can definitely call this a non-event.

Since 2011, I have come to know a lot of transplant recipients and a lot of living donors.  Almost all share the same story about how easy it was to donate, and that it was a positive experience.  The last kidney donor I met checked into the hospital on a Wednesday morning, checked out Thursday night, and was back to work the following Monday.  Less than a month later she was in Mexico on vacation.   It’s really NOT THAT BAD, and the recipient’s insurance covers your costs.  I think more people would come forward to be a donor, if they understood that it really isn’t that big of a deal. I am carefully recording every minute I am spending on the process of becoming a donor.  I expect that when I am done with this process, the time commitment will be far less than you think.  I am willing to bet that you will be able to come up with things you have done for other people, your kids, your loved ones, or even a charity that was a greater time and/or financial commitment than this will be for me. In doing this, I hope more people consider becoming a non-directed donor when they consider how they will spend their time next year giving back or doing good. My hope is that one day, this option comes up on a menu of common ways people choose to be nice to their fellow humans.

You are Invited!

I am hoping that I can put some stipulations on the donation, but don’t know yet if that is possible.  It is my hope that I can introduce my kidney into a large pool of kidneys that will allow for a chain to start.  A kidney donor chain creates opportunities for endless recipient-donor pairings. It starts with a random donor (me) willing to donate a kidney. That kidney is transplanted into a recipient who had a donor willing to give a kidney, but was not a match.  That donor, who was not a match, then donates a kidney to someone who IS a match.  In theory this could go on forever.  In 2014, UAB Hospital in Birmingham Alabama completed the 49th, 50th and 51st transplants in the longest living-donor kidney transplant chain.  In total, the chain included 68 people (34 donors and 34 recipients) at 26 hospitals nationwide.  It would be my ultimate goal to be part of something like that, something making that much impact.

So, this is what I am up to in my free time this year.  Does anyone want to do this with me?  Think about this- if we get multiple people to participate at once, we could ultimately flood the pool of existing kidneys which would be a massive springboard to create a really long chain (hey, it could be the longest in history).  A friend in the journey would double the fun!

-Laurie