Forever in Blue Jeans

One of the people who I am most grateful for in my life is Rob Lee.  He is my partner in life, partner in crime, partner in business, partner in pet-parenting, and partner in pretty much every other corner of my life.  Otherwise known as “the General,” he is liked by all, and one of his most charming characteristics  is that you can take him anywhere.  He prefers not wearing a suit, but he’s the kind of guy that you can take to a black tie event, on a hunting trip, or as a chaperone on a girls’ night.

Today is a milestone for us as we celebrate our 8th Anniversary married!  While I feel like there are many parts of our marriage that come wonderfully easy, marriage is hard work, and I consider our marriage one of my/our biggest accomplishments.  We work hard at it and I am proud of us!  This is us 11 years ago the night we decided to get married.  That was a great night 🙂

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When you go through the psych analysis to donate a kidney, one of the topics that is covered in depth is the details about your support system.  They ask what your spouse thinks, and what you would do if your spouse decided further into the donation process that they actually DON’T want you to donate a kidney.

Rob is 100% behind me in my kidney donation, and I am really grateful for that from the deepest part of my heart.  I really don’t know if I would want to do this if I didn’t have his support.  I imagine I would feel resentment, hurt and frustration if I didn’t have his support.  It wouldn’t be an adventure or a journey, it would be an event that gave me happiness while making him unhappy.  That really wouldn’t work for me.

So thanks you Rob, for being a rock, and for supporting me unconditionally through this.  I am a lucky woman to have you, and if I don’t tell you that enough, I hope you know, and I hope you know how important your support is to me in THIS.  People can’t do this without somebody like you by their side, and I never had to question that you would be there.  I hope that I can be like you, for you, the next time you do something that requires my love, encouragement, and support.

Happy Anniversary!  Looking forward to a lifetime more!

TSA Precheck (Kidney Style)

In a previous blog, I described how Northwestern does all of their transplants “in house,” rather than participating in chains with other hospitals.  I wasn’t 100% correct about that.  Northwestern PREFERS to do all of their transplants in house, and to do all of the surgeries at the same time, but they do make exceptions, and it looks like they will make one with me.

Since the last chain dissolved, there has only been 1 other match that keeps popping up in Northwestern’s system who could receive my kidney based on blood type.  That person has a willing donor to continue a chain, however that willing donor is AB+.  Somebody who is AB+ can only donate to somebody else who is AB+, and only 3% of the population is AB+.  There is nobody at Northwestern who would be a match for that AB+ person.  So at this point, if Northwestern keeps it in house, I would donate to 1 person, and there would not be a chain, it would be a single donation and would not maximize the gift.

To remedy the problem, Northwestern is adding me to the KPD Pilot Program.  Getting into the program required 2 more blood tests, and minimal paperwork.  This program is part of the Organ Procurement and Transplantation Network (OPTN). The OPTN is managed by the United Network for Organ Sharing (UNOS). OPTN registers and tracks everyone who registers in the Pilot Program. Transplant center staff enter eligible donor and recipient medical information into UNOS’ computerized system. UNOS works with transplant centers throughout the United States to search for cases where the donor in each pair is compatible with the recipient in another pair (or multiple pairs). By exchanging donors, a compatible match for both recipients can be found.

This option allows for a larger pool of donors and recipients, and will hopefully maximize the opportunity to start a multi-person chain.  My surgery will still be at Northwestern, however my kidney can potentially be flown out of state now for a match somewhere else in the country.  The game changed a little, and the whole chain will not stay in house as I described before.  Because this pool is larger now, it is far more likely that they will find a chain right away.  The list is updated 2x/week, so by next week, there could be a new chain in place.

They wrap the kidney in bubble wrap…..

 

#LauriesFirstWorldProbelms

It’s been several weeks without a prospect of another kidney chain.  I am pretty surprised how bummed I felt that this last chain didn’t work out, I didn’t expect feelings of disappointment, but it was definitely a mood killer.  I could see this web of people forming, and could visualize 9 other people getting their hopes up out there like I was.  I really looked forward and daydreamed about this big chain in place that would result in so much good for so many people.  But it didn’t work out, and now I picture those people feeling let down.  I know it wasn’t meant to be, and I know that there IS a chain that will happen that is meant to be.  These things happen.

My first world problem that I am referring to is being in a position where I am sad because this process isn’t moving as fast as I had hoped.  It gave me perspective, as my journey has been so incredibly short compared to the people out there waiting for a kidney.  I have nothing to complain about or be sad about here (so I am not, I am over it).  There are over 100,000 people on the kidney transplant waiting list (waiting for deceased donor kidneys).  The wait list for a deceased donor could be 5 years, and in some states, it is closer to 10 years.  The average is 3.6 years, and can vary depending on health, compatibility, and availability of organs.  There are not enough donors to satisfy the demand of people waiting for kidneys, so while people wait 3+ years, we can expect 13 people will die each day waiting because demand > supply. I really have difficulty wondering what that must feel like to just WAIT AND WAIT AND WAIT, and hope you get your lucky day before you become a statistic.  Not to mention that people who need kidney transplants are likely in poor health, going to dialysis several times a week, and have a poor quality of life.

I value that my journey has allowed me to reflect on this shitty aspect of transplant and the waiting game, and that my first chain break up made me feel this way.  It’s just a glimpse of what other people feel as they wait for a kidney.  It allows me to understand the other side of the journey better than I could before.  I don’t want to wait anymore, and I don’t want other people to have to wait for a lifesaving organ.  It’s a fixable supply and demand problem!

So cheers to the people out there waiting.  I am so sorry you carry that burden, and can only start to imagine what that is like, and how demoralizing it must be for you.  Stay strong, and may peace and hope be in your heart.

LJDL

Back to Matching

Per my transplant coordinator  6/30/16: “We just received the results of the virtual cross matches and unfortunately one of them came back strongly positive. But this happens so we are working diligently to find a new swap. We also just did a 4-way swap today so we will be refreshing the system early next week. We will keep you updated as soon as we find something new.”

So the 5 person chain discussed earlier in the blog is off the table due to an incompatible match, but they are searching for a new chain now.  Just drinking my water till they come up with something new!  Still shooting for a donation in August.

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Head Trash

One of the main objectives of donating my kidney is to compel others to consider being a living donor. While I have shared what I am doing with my family and many close friends, I am feeling shy and awkward about sharing what I am doing outside of that circle.  I give a shit about what people think to the point where I allow it to effect me emotionally sometimes.  Nothing good comes from that head trash, and it is a complete waste of my energy.  I just can’t help but indulge in overthinking.  This blog is me thinking out loud about my worries. I need to get out of my own way for this donation to have the impact I am looking for it to have on the big picture of contributing to solve this perceived “organ shortage.”

Challenge #1:  I am worried that my motive for donating will be doubted or challenged.  I have a new friend who recently donated her kidney to somebody she met on Facebook.  Her experience after donating has been that some people speculate that she was doing it for attention or money.  Her real reason for donating was that it has always been on her bucket list to help a stranger in a very major way, and she couldn’t think of a reason NOT to donate her kidney.  I hate that people don’t giver her the benefit of the doubt and just take her word for why she did it, and I assume the same will happen to me on some level with somebody who doesn’t understand why I am doing this.  My first challenge is accepting that this might happen, and when it does, I need to move on knowing that it doesn’t matter if such people don’t understand the motives in my heart.  Thy are not part of my journey, and I cannot give them any of my energy.

Challenge #2:  I am uncomfortable with praise, and being called selfless.  I do think that donating a kidney to a stranger is a selfless act, but that does not make me this great, selfless person. As my sister used to say when we were fighting teenagers “I didn’t call her a bitch, I said she was being a bitch.”  She’s right, it’s not the same.  One is a noun, one is a verb.  I can be bitchy and selfless, but that doesn’t make me a selfless bitch!  So, let it be said here, I am not selfless, and do not put myself on a special list of selfless people just because I am doing this.  Being selfless is actually something I should try harder at in most of my relationships, it would likely make me a nicer person to be around. Until then, no, you may not have a bite of my dessert, you should have ordered your own dessert.

Challenge #3:  The way I feel about donating a kidney reminds me of the way that many people talk about having kids.  People get having kids, but they might not get this.  I think about what it will be like to get to donate my kidney all of the time.  The thought of doing it fills my heart with love and joy.  I think we all inherently are programmed to want to give life.  For most of us, that is the desire to have kids and share a family.  While I will never say never, I don’t think that that is something I will do.  There is a part of me that looks at this experience as what I will do instead of having kids.  People who have kids can share and relate to each others’ experiences, and celebrate different aspects of that experience together.   Choosing a nontraditional path to share life will be different than that.   That being said, it will be so wonderful if I can connect with at least 1 person in my kidney chain.  That will be a special bond and celebration of life that we will share like family (I hope).  I accept the challenge that this will not be a relatable experience that I can share with just anyone.  It doesn’t need to be.  I do want to celebrate it though!

I already have the people I need in place that truly matter to support my decision, any more that support it are a bonus.  I am really thankful for that.  So if that person is YOU, thanks, I appreciate your support.  Rob, mom, dad, Annie- you are my rocks and your support means the world to me.  As for the rest of the BS in my head, I think this journey will be a great opportunity to stop giving a shit about what isn’t important, and isn’t true.

-LJDL

Ripple

One thing that I have been learning a lot about this month is how to leverage my donation experience to benefit the maximum number of people.  At first glance, it seemed to me that the best way to do this would to be to kick off the longest paired kidney chain possible. It turns out that there are a lot more factors involved, and there’s a lot of ways to maximize a donation other than chasing the longest possible chain.

The first thing I noticed was that the long chains resulting in 20+ donations occur when transplant centers work together to create a large pool of donor/recipient pairs looking for a swap.  So in other words, multiple transplant centers all over the country pool their transplant waiting lists to create a large pool/extra long list that would maximize the possibility of 20+ matches existing in a single pool.  Transplants and kidney swapping can occur across state borders, and have the capacity to connect more than 40+ people in 1 chain.  Pretty remarkable.  If you are waiting for a kidney transplant, and have a friend or family member who is willing to donate to a stranger in exchange for you getting somebody else’s kidney (since they are not a suitable match for you), then this model works to your advantage.  It provides more options, and potential for a higher quality match.  These chains are logistically complex, and are actually several chains that occur over weeks or months at a time.  A bridge donor connects the end of 1 chain segment to the start of a 2nd chain segment.  It looks like this.  Note that these are 2 or more chain segments that at the end of the day are called 1 single chain.  These segments make up the record breaking kidney chains that we see on the news from time to time.

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Some hospitals, such as Northwestern, don’t participate in chains like this.  They keep their chains in house, and do them all at once.  Such is the case with my 5-way chain that is in the works.  Besides keeping all transplants in the same hospital, the other major difference is that the last person to get a kidney comes off the donor waiting list, and does not start a second chain segment.  So with this method, my chain segment starts and ends all in 1 day, and has the end result of somebody coming of the kidney waiting list.  Screen Shot 2016-06-22 at 4.26.01 PM

The theory behind the first chain that involves multiple segments at first glance seems the obvious way to go if your goal is to maximize your gift, however after a lot of research and talking to a lot of people, I can see that there are pros and cons to both methods.  Here is a bedtime read if you want a deeper understanding of the topic.

My nephrologist, Dr. Friedewald spent over a half hour explaining to me why he likes the second system that Northwestern employs over the first system which is best known through the National Kidney Registry.  One great thing about this particular nephrologist is his background in organ allocation.  In 2013 he completed a two-year term as chair of the United Network for Organ Sharing (UNOS) Kidney Committee during which time he led the effort to substantially revise the national kidney allocation policy for the first time in several decades. He has also chaired the UNOS Committee for Kidney Paired Donation, charged with creating a unified, national kidney paired donation system.  He knows his stuff and I feel very comfortable with the concept of keeping the chain “in-house,” even though the large nationwide pool seemed like a better idea.  It was actually AFTER this long conversation that he shared with me that they had a 5-person chain lined up already anyway.  I appreciated his approach in educating me before sharing that news.

After that conversation, I started thinking about what my chain will be like; who will be in my chain, and will I get to meet them?  Only then did it occur to me that I am not starting this chain.  I wouldn’t be donating my kidney had I not been impacted by my dad getting a liver transplant 5 years ago.  I doubt that transplant would be my passion today without that experience in my life.  I think it’s more appropriate to name the deceased donor who gave my dad a liver the first person in my chain.  I am just continuing the next segment of his chain. And the great part?  Just like in that first diagram that looked romantic because it was potentially never-ending with multiple segments, my chain has the capacity to be never-ending too.  My donation is part of a much bigger picture driving change in the we think about our spares.  My kidney family on some level, in some way, will impact others and have the end effect of making living donation more mainstream than it is today.  The people we inspire continue the next “segment” of my chain.  A ripple effect has more power than a single chain.

Any takers out there yet?

10 Surgeries and 5 Transplants in the Works!

On Friday, I spoke with my nephrologist.  They have a kidney recipient picked out, and the donation will kick of a 5-person chain: 10 surgeries and 5 transplants.  I was hoping for a long chain, so getting this news is extremely exciting and happily emotional!  Below is an example from Wired of what that looks like (Just picture it without the 2 blue squares so there is 5 pairs, not 6).

6WayKidneyExchange_rev2

Now that we know how many people are involved and that there is a proposed chain in place, this is starting to feel much more real. It’s exciting to think that 9 other people out there this week will be getting a call with the good news.  I hope that they are all as excited as me!

Just because the match looks good on paper doesn’t mean that the recipients won’t have antibodies to the donors’ antigens.  Over the next few weeks, the doctors will do a virtual cross match with each potential pairs’ blood through the HLA lab. Occasionally they will need a member of the swap to provide updated blood samples for this.  If that all looks good, then they get down to actual cross matching.  This means they mix a vile of each donor’s blood with a vile of each 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 the donor blood.  From what I understand, it is possible that 1 or more of the kidney pairs may not be ideal- and if that happens they start looking to swap in a different eligible pair that will allow the chain to stay intact.  This essentially can result in a shorter OR different paired kidney exchange at the end of the day.  If you are interested in the science behind cross matching, panel reactive antibodies, or anything else that better explains how matches are paired, The Living Kidney Donor Network explains this testing in detail.

If the blood for all 5 pairs react well, we can move forward to getting a date on the calendar for the 5 transplants.   All 5 transplants will be done at once (or over 1-2 days), and they will all be done at Northwestern Medicine.  There is a reason they do it like this which I will cover in another blog because it is really interesting and had me asking a lot of questions over the past few weeks.

What’s really cool too, is that this chain will take 5 people off of the deceased donor waiting list.  The people waiting for a deceased donor wait on average 3-5 years for a transplant, and are often on dialysis that entire time (awful, horrible, poor quality of life).  Everybody else on that list gets a big bump up on the waiting list when the 5 people in my chain get transplanted!  That’s pretty powerful when you consider the ripple effect of how many people besides my new kidney family of 10 will be effected by this.

If you look at the diagram above, you will also see that the chain ends by the final kidney in the chain going to somebody on the donor waiting list.  In the past month I have spoken with a few women my age who are on that list.  They are both on that list because there is such a limited number of people who would be eligible donors based on the antigens in their blood.  One woman has had 18 friends and family members come forward to donate, and the other has has 22 come forward- not a single one has been a match.  Non-directed donor chains can get women like this a shot at a miracle.  Fingers crossed that the person at the end of the chain is someone like that who has a harder than average time getting a good match.  They would be the grand prize winner in that scenario!

So, in summary, I’m excited as all hell that they found a long chain that will allow me to help multiple people, and truly maximize my 1-time gift.  So far I can say I highly recommend this journey if you are considering doing it. I feel GREAT, and its been a powerful experience learning how this works; the more I learn, the less I know, and the more I want to know.  The fact that we all house this spare bean in our bodies that has the capacity to save multiple lives is a beautiful gift! Besides our liver, what other natural resource are we born with that has the capacity to do such good?  So keep thinking about it, and call me if you want to learn more!

-LJDL

SEX, DRUGS, AND MULES

One thing I don’t want to have happen is inadvertently do something to ruin my good bean, once I only have one.  This blog addresses how not to do that.  I really couldn’t find a lot online about this topic, but the common theme is moderation.  Basically, things that are bad for your kidneys pre-donation, are also bad post-donation.

I also know that my kidney function now is as good as it gets (based on pee and blood tests).  Within five weeks of donation, the remaining kidney swells in size and increases its filtering power (the “glomerular filtration rate”) to almost match the power of two kidneys. In short, I’ll have a single super-kidney instead of two simply adequate kidneys.  Once I have one kidney, the nephrologist indicated my kidney function should still be in the top 10-20% of the population even with 50% loss of my nephrons.  It will go from great to pretty great/good.

SEX

It’s a myth that you can’t have a baby after you have donated a kidney.  The nephrologists suggest you wait 1-year post donation before getting pregnant. You can have sex right away after your donation as long as you “take it easy” and don’t cause a hernia.  We plan in partaking in sex, but not procreation.  If we do decide to have kids, my age will be a bigger concern than my kidney status.  You can call me “old egg unibean.”

Some drugs, but not all are, synthesized in the kidney.  Most are synthesized in the liver.  It will be important not to become a drug addict after the donation, and to be mindful of frequent use of anything that could weaken my kidney.  This is true for anyone, the only difference is that most other people have a back up, and I won’t.

IBUPROFEN

Non-Steroidal Anti-Inflammatory Drugs (NSAIDs)  such as Ibuprofen can be hard on the kidneys, especially if it is taken regularly, in high doses, or while drinking alcohol. Decreased kidney function due to ibuprofen is more likely in patients who have existing kidney problems (having 1 kidney isn’t considered a problem). Long-term use of ibuprofen can cause adverse effects such as decreased clearance of creatinine by the kidney. Creatinine is a chemical waste compound that is produced during normal skeletal muscle contractions, and is normally filtered through the kidneys and excreted in the urine. As many as 1 to 3 percent of new cases of chronic kidney failure each year may be caused by pain medication overuse. The solution is to switch to Tylenol.  Again, this really applies to everyone, not just people with 1 kidney.

COCAINE

Several forms of renal disease have been associated with this regular cocaine use.   Cocaine abuse has been associated with acute renal failure and acid-base and/or electrolyte disorders. It would be bad to create a cocaine habit post-donation.

CIGARETTES

You must stop smoking cigarettes to be a donor, even if you are a light smoker. Smokers have an increased risk of cardiovascular and pulmonary complications with any surgery.  Smoking cigarettes also causes high blood pressure which puts stress on your kidneys.

MARIJUANA

A friendly relationship with Mary Jane does not disqualify you from being a kidney donor.  If you wake n bake, it would likely be a problem in your psych evaluation.

It is OK to eat or smoke pot after a kidney donation and it should not have any negative impacts on your kidney.  It potentially is a safer form of natural pain relief for things like headaches, so you don’t ingest the damaging Ibuprofen.

MOSCOW MULES

There are a million reasons to STOP drinking alcohol, but a kidney donation is not one of them. The liver takes the beating from your boozing, not the kidney.  Boozing is not good for your body whether you have 1 kidney or 2.

The experts say that three drinks in a day (or more than seven per week) for women, and more than four drinks in a day (or more than 14 per week) for men, is considered “heavy” drinking. Heavy drinking is not good for most people.  The kidney(s) of heavy drinkers have to work harder. Heavy drinking on a regular basis has been found to double the risk for kidney disease.  Kidney disease for someone with 1 kidney could possibly be a bigger concern than kidney disease for a person with 2 kidneys, but not necessarily.

This website highlights the risks of having one kidney vs 2, however, the goal will be to stay in good physical shape, and to practice moderation.  Good advice for all of us.

Matchmaker, Matchmaker, Make Me a Match

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.

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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.

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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