The Gift of Life Multiplied. (That A-Team Chain Effect)

Cloud 9 is a great place to be, so I figured I would hang out there for a while. This kidney donation process was enlightening, inspiring, humbling, and so much more. I went through the process of being approved, and was finally granted permission. I knew I was going to become a living donor for someone, somewhere. I was entering the program I had heard about for almost a year now; the Paired Exchange within the National Kidney Registry (NKR).

This is where the “A-Team” originated. Back in June of 2016, the social worker I was assigned to with the Transplant Center at UCHealth asked me if I had heard of Paired Exchange? I shook my head curiously ‘no’ and was getting my first introduction to an incredible list/registry/idea that is giving tremendous new hope to people awaiting organ transplants.

Years ago, someone in need of a kidney needed to find a match from friends, loved ones, or an anonymous donor that they found through word of mouth/recruiting. It would be someone to match with them directly. So these willing donors would be tested for a friend or loved one. They were either a match, or not. Maybe blood type wasn’t compatible, or something else wasn’t compatible. That would send them to be listed on the National Registry. Then it would be an altruistic/anonymous match from a living donor, or deceased donor. The registry wait time varies per state, and by blood type. Finding out your life depends on whether you get a kidney transplant has to be stressful enough. To then find out you have a friend who is willing to donate, gets tested, and you can’t use their kidney because your blood types aren’t compatible… I can’t imagine how crushing it would be for both the would-be donor, and even more so, the recipient.

This Paired Exchange program brings more options to people waiting for organ transplants. Think of it the National Kidney Registry as a pool, and attached to the pool is a kiddie pool. The kiddie pool is for people to enter if they have a willing living donor, and are just mismatched for whatever reason. For instance; if your Uncle Nick needs a kidney and his wife Tammy wants to donate, but isn’t a match; they can enter this side kiddie pool. It is a side group of other potential living donors who are mismatched for their friend/loved ones too. The computers are running constantly trying to swap donors to create “matches.”

Let’s use this scenario: Uncle Nick needs a kidney and his wife, Tammy will donate her kidney. Tammy’s blood type isn’t compatible with Nick’s so she can’t directly donate to him. Tammy is still willing to donate to anyone as long as it means that Nick gets a kidney. A match is found in the kiddie pool with Patty, and Samantha. Patty needs a kidney and her friend Samantha is willing to donate, but not a match. Tammy is a match for Patty, and Samantha is a match for Uncle Nick. Tammy and Samantha are altruistic donors because they don’t know the people their kidneys are going to, and in return their loved ones will also receive their transplant.

This is amazing on many levels. It provides an option for these people who have willing donors, yet their blood-types, or other factors aren’t compatible with one another. Maybe they can’t directly donate but they enter this “kiddie pool” in hopes that another donor/recipient mismatch would swap with them and the dream of receiving a new kidney would be granted.

I like to think of it as a game of Memory. Each duo that enters the paired exchange is one donor with one recipient. There is always the 2 in a mismatched situation. Now, instead of only being listed on the National Kidney Registry, and hoping that a kidney comes your way through a random altruist/anonymous donor, or deceased donor you have this other option. Being that you have a willing donor the Paired Exchange will have all these other paired donor/recipients to be flipping over,in hopes that one of them is a match.

Here comes the “chain effect.” If someone is looking to become a living donor, and they don’t have anyone they know that needs a kidney, they have some options. First, the transplant center determines that they are healthy enough to donate. Once cleared, there is the option to go on NKR, and pair with the best one-on-one match there. That is an excellent option. (And the only one I had thought existed when I started testing to be a donor.) Option 2 is to be the start of these chains of transplants that people talk about. This one Good Samaritan Donor (GSD) enters into the Paired Exchange program. The computer goes to work looking for the best match possible between the Good Samaritan Donor (GSD) and all the recipients in that kiddie pool (Paired Exchange).

Let’s relate it to the scenario used before… The Paired Exchange finds the GSD is most compatible with Uncle Nick. Now, this opens up Tammy to be matched with her best match in the (kiddie) pool of pairs. Tammy ends up matching with Patty which opens Patty’s mismatched donor, Samantha, to be paired with a recipient in the pool and so on. In just that situation, 1 person is starting a chain of 3 kidney transplants. The longest chain known to date involved 68 participants (34 donors/34 recipients). That is incredible. The Good Samaritan Donor (that first altruistic donor) always starts these chains. SO, this is why the “gift of life” can be multiplied and I refer to it as the A-Team because we are all in fact, altruistic donors in these chains.

The chain I was fortunate enough to start was 6 people long. It was fascinating to me that kidneys were going to be flown from transplant center to transplant center around the country. Six people were going to get an opportunity to wake up feeling better than they had in a long time. Us living donors would have a short recovery period ahead of us. I haven’t heard from another living donor yet saying if they had they chance again that they wouldn’t do it. There is this surreal feeling of joy that is associated with donating. I have donated my blood, my hair, my time, and money. All of these endeavors have provided much joy, and fulfillment in my life. This kidney donation though is off the charts. I can’t say it was a totally selfless thing to do because the amount of whole-hearted, pure happiness I have experienced from this event in my life is immeasurable. I can’t compare it to anything because I have never felt as ‘at peace’ with a decision from the beginning to the end, knowing that it was 110% the right thing to do. There was absolutely no fear with my decision, no fear with the operation, and absolutely NO REGRETS. I am in the same boat with all the other many living donors before me… Without a doubt… Hands Down… I would do it again! It literally was the opportunity of a lifetime! Every time I look at that scar on my belly; I smile because I know there are 11 other people smiling with me (6 recipients/5 other donors).

Advertisements

The “A” Team. 1 kidney turns into a chain effect of kidney transplants.

The A-Team… “A” stands for Anonymous (or Altruistic as we are technically referred to in the transplant community) and there is definitely a “Team” in this whole process, so therefore; I am part of the A-Team! For me, it was February 2016 when I started researching being a living donor.  Why? The question has echoed my ears for the past year whenever people heard I was interested in doing it.  My why sparked inside me over 16 years ago.  A little girl in, what I like to refer to as, my “extended family” was diagnosed with a form of leukemia. Shocked was my first reaction when I heard the news. What can we do? passed through so many of our minds that wanted to help. When I was asked to be tested as a possible bone marrow donor I finally had a sense of worth, and possible hope in helping. I got a quick blood draw, and sent it away to the labs. At that moment, I wanted to be the match. I really, really, wanted more than anything, to be a match for her. It didn’t matter if the odds were against all of us trying, I know we all wanted dearly to be her bone marrow donor. I wasn’t a match, and figured I would ask to be put on the national donor list and maybe I could, at least, be available for anyone else in need. Ever since, in the back of my mind, I still wanted to be called as a potential match for someone. It hadn’t happened which is what brought me to last February 2016.

It started out as google searches leading to misinformation, or unanswered calls/messages before I found American Transplant Foundation. They were the pot of gold, and directed me to the hospitals in Denver that had Transplant Departments. I was gaining traction now as I had the right people to contact. Within 1 day I heard back from the Transplant Coordinator at University of Colorado Hospital (UCH) so I vowed to start my testing there. Porter Hospital called just one day after UCH and I became aware that after a few dead-end leads, living donors might just be in high demand. I was indifferent on which way I could be a living donor. After discussions about liver or kidney, I was led on the path of kidney donation. The recovery was a bit easier, success rate better, and I was slowly learning how many people are in demand of a kidney transplant. I had been totally unaware of the amount of people living in need in this country, and the world. (For stats, visit https://www.unos.org/donation/living-donation/) I was interested when I started looking into the process and it soon took a passionate turn to being hooked! There was no question; I wanted to be a kidney donor.

Upon confirming my intent, testing started. From April to June was a series of tests, appointments with doctors/surgeons/professionals. As I passed each one, I’d move onward in the process. June 9th was my big day where I met with the transplant team, and they performed a CT Scan of my abdomen to “size” everything up. I felt great, and most certain that the next call I was going to get from Angela, my transplant coordinator, would be telling me that I was approved. Instead, it was a call to tell me that I had a mass that was on my adrenal gland. They were not overly concerned, and I still needed to get it checked out further with my doctors/insurance. (Medical procedures, if anything abnormal is found, becomes my responsibility. This is VERY clear and mentioned from the initial stages.)

I first thought I was being removed as a potential donor. I was pleasantly surprised that this was not my “end-all” but the mass had to be cleared by my doctors with more tests to rule out any issues. Once my results showed normal, and after a 6 month “hold” I would have another CT Scan. If there was no growth then I could pick up again in the donor process. I gained ever more respect for the UCH Transplant Team as it became clear that they will not sign up a potential donor unless they are as confident as science/medicine can be that I was fit to be a donor. They are not playing a game of risk here, they have everyone’s best interest in mind. After my testing all proved negative, I was back in the donor process. (This was my choice to continue with testing out of pocket. There was not an ounce of pressure. It was my choice as I had a budget for the amount of money I would spend out of pocket, and everything fell within that budget. There was always the option to just drop out of the process, and accept that I couldn’t be a donor too. I wouldn’t have it though. If I was fine; I was going to do everything I could to reach my goal.)

My “file” would be complete in the beginning of this year. Then, with all the reports/tests/scans/and opinions, a panel of professionals met to choose my fate on being a donor. That decision day was March 10, 2017. I got the long-anticipated phone call that I had been approved by the panel, and had 2nd and 3rd approvals from surgeons. I would be activated  in the paired kidney exchange program!!!

I am not sure I have felt this amount of joy in my life, EVER. I was surprised at how much my desire grew throughout the year. I wanted this, and now, I was going to get to do this. I am going to be an anonymous/altruistic kidney donor. To say I am excited is an understatement. I can only imagine surgery day being better than when I answered that call. I share all this because over the year, my research, questions, and awareness grew. I discovered many different ways to be a living donor for someone; bone marrow, kidney, liver (segment used).  Rarely, segments of  lung, intestine or pancreas can be used from a living donor. These are all interesting, and I never want to leave out the easiest, simplest way to be a living donor… by donating blood!! Donating blood is so important, and is always in demand. I have learned so much about this amazing process, and how incredible transplants are.

In February, I came across someone who has a friend that has been waiting for a kidney for years now. I am sharing his story to help raise awareness, and try to help him find a donor. His facebook page is Help Marc Kennedy Find a Kidney Donor. Check it out/share it!    (https://www.facebook.com/groups/809792425726380/).

If you are at all interested in finding out more, please don’t hesitate to check out the links below on being a living donor. The American Transplant Foundation is great. They paired me with a donor mentor. I could ask this person anything related to their experience through their donor process. United Network for Organ Sharing (unos.org) is an amazing resource of information too. I would be more than happy to share any information that I have accumulated over the past year as well. I never thought I would anticipate surgery, and here I sit, on cloud 9, so incredibly excited for my day in the operating room.

https://www.unos.org/donation/living-donation/

http://www.americantransplantfoundation.org/

Humanity Lies Within Each of Us!

Humanity doesn’t live or die in the hands of our next leader. Humanity lives within each and every one of us. What I’m saying is; no ‘one’ person is capable of making this country great again. We, one by one, make this country great. Sure, we elect leaders, and have since we stormed this land over hundreds of years ago. I have no doubt that in each election that has taken place, many people have been left disappointed. It’s impossible to please everyone 100% of the time. That’s irrational to even think such a thing is possible. This year will prove to be no different. No matter who wins whatever elections are taking place, there will be some people upset by the outcome.

We find ourselves in this puppet show run by politicians, media, social media, etc to believe Dooms Day is Nov. 9th. Every direction we turn it’s a dreaded Armageddon! So many of us are frustrated by the negativity that surrounds us in both politics, and the media, and still somehow find ourselves playing into it from time to time. Media is all around, and yes; we have the option to “turn it off” a fair amount of the time. What about the rest of the time though? When it pops up on a public tv, or it interrupts something with a special broadcast? This is when I choose to “shut myself off!” I have played into the disaster/ devastation game that’s being thrown at us from both sides. I’ve personally worried, and I’m deciding here and now that I won’t allow myself to do it anymore. The days of feeling like a fish trying to save itself from going down the drain are over. “Holy crap, what happens down that drain?” “Where does it lead us?” “Oh Noooo!”

I’m reminded my mind is always more powerful than whatever is trying to influence me. No matter my political views, my beliefs, etc; I CHOOSE whether, or not, to believe if “WE ARE IN REAL TROUBLE!” To which, I choose NO!

I don’t see that we are doomed if the person I vote for doesn’t win. I believe WE make up this Nation. Not 1 single POTUS! Not a handful of leaders. The only way we are doomed is if WE ALL toss in our hats, and give up.

I don’t see that. I see a large amount of people who are passionate about creating a better society/nation/world for everyone! I’m moved by the amount of people trying to create conversations so that we can better understand where we are all coming from.

Social media is a great connector, as well as a great disconnector. As with all good things, in somewhere lies some bad. That’s not saying social media is bad. It’s a great tool to get a message out, connect with others, create groups, inspire others, and the list goes on. It offers great opportunities. Heck, I’m going to post/share this on social media myself. However, I do feel there lies a serious disconnect with it too. People get in heated conversations over social media, and often say things they’d never dream of saying to a person standing across from them. Also, it’s easy to understand how so many things might come across wrong or misconstrued since only about 7% of communication is conveyed through words. Even comments with the best intentions might be misinterpreted because it’s missing the other 93% of communication; body language, tone, etc.

What if we used social media to get messages out, info. out, to connect with people, and saved the hard conversations for when we’re in a better setting/surrounding? One where we aren’t hiding behind our screens/devices, and can see the impact our words can have on others.

I do agree with the belief that we have become a society of easily offended people. At the same time, I realize that it’s not my place to judge what someone is offended by. I can have an adult conversation though, and apologize, or speak my truth without being all-out nasty.

See, I believe the vast majority of people are good. We don’t intend to hurt others, and still it can happen. I believe most people do care about others beyond their family/friends/loved ones, and do actually care about mankind/humankind! Sure there are bad people (they’ve always existed since humans walked the earth) and I think a lot of us prefer to focus on the good ones nonetheless! We encounter people all day long that we might not know who are likely good, maybe even GREAT people. We don’t know though unless we do our part to show them we’re also good. Smile at them and the odds are better than not that you’re going to get a smile back. Talk to them, you might find out you both share something in common. Suddenly, a connection has been created that might have just been passed by. We can all immediately judge someone on their looks and actions, and convince ourselves we know if that person is genuine, honest, has integrity, etc. before even meeting them. I’d be a fool to sit here and say I’ve never done that before. I will also say I have foolishly been wrong too!! When judging others it doesn’t make me feel better. And equally, when being judged by others, it has not felt good. So again, I’m CHOOSING to change that about myself, and enjoy the alternative of actually learning about, and from people. I know we are all busy creatures with so much to do, and still I’m surprised how much extra time is available if I want to find time to connect.

We have so many amazing people in this world making a difference. It doesn’t have to be Nobel-Prize-worthy. It doesn’t have to be finding the answers to pollution, racism, world hunger, animal extinctions, etc. etc. These people are still going out and doing their best. They are trying! Isn’t that enough sometimes? Shouldn’t it be enough? Maybe we don’t see eye-to-eye, and still they are doing something they believe is helpful. We all have choices every moment of every day! We all have made choices we are proud of, and maybe not-so proud of! We are humans, beautifully flawed humans. We also are each given these powerful, incredible minds that allow us to learn so we make less of those not-so proud choices. It’s within each of us to BE! BE kind, BE caring, BE genuine, BE mindful, BE funny, BE honest, BE happy, BE thoughtful… BE YOU! And if you is a jerk, you can always CHOOSE to change; find you, create you, and BE YOU.

Let us remember; 1 single leader doesn’t make a nation great. A country’s people are what define a great nation. In a currently divided nation; one thing is certain… WE ARE ALL IN THIS TOGETHER; today, tomorrow, and beyond! Let us BE GREAT TOGETHER!