Tuesday, December 29, 2015

Happy Transplantiversary!

Today is the First Anniversary of the Transplant. I am healthy. GW is healthy. We are in a good place.
GW had a few bumps early on, but sprang back very quickly. He had visitors from all over. He bought a recliner to heal in. He got new glasses. He went off his blood pressure meds. He went home two weeks earlier than we expected. He stopped taking a fistful of drugs everyday, and now takes just a few, but he takes them like clockwork. He went back to work. He started riding his bike again. He started riding a LOT.
I had a steady recovery. I read lots of books (everything Rick Riordon had written, The Boys in the Boat, Terry Pratchett books...), had visits from lots of friends who brought us food. I got a new job. I started running again.
Life went back to normal. Or the new normal.

How is my life different than one year ago today?
I have some scars on my stomach. Super small ones that are mostly faded, unless I am cold.
My creatinine levels are slightly higher than before, but well within the realm of healthy. My remaining kidney (Sir Henle) has obviously grown to make up for the absence of Sidney (GWs kidney). By my calculations, Sir Henle is about half again as big has he was when we started this adventure. And by the sounds of GWs latest blood work, Sidney has also grown to accommodate GWs (larger person) needs.
I have an easier time eating a healthy diet, since I have pretty clear instructions of what that should look like. Low salt, low sugar (because diabetes is a big problem), with a bias towards high fiber, high protein, whole foods.
I inherited GWs recliner. I sit in it every day.
I am not in quite as good of shape. The pressure of getting my body to perform an amazing feat of health and healing powered me through a lot of dreary runs. More recently, I have a new job, with a longer commute, and haven't quite had the ambition to work out like before. But the Transplant Games are coming this summer, which might be the goal I need to be working towards.
I dont worry about Kelsey or GW in the same way. I dont worry that GW will get a bad blood test with even worse news. I dont worry he will end up in the ER for some infection, loss of vision, crazy nosebleed, or any new tragedy that seemed to hound him in 2014. I dont worry that my sister will be racing between dialysis appointments and work, trying to make a diet that fits an every changing profile of salts, proteins, and carbs. I dont worry that she worries to much to sleep properly. I worry about their happiness- I hope they both are in careers they enjoy. I hope they are able to find work-life balance. I hope they continue to feel connected to and supported by friends and family. And these new worries dont keep me up at night. But arent those perfectly normal worries?
I am incredibly popular on FB. Anytime GW, Debbie, or Bill posts something about me, or the transplant, or GWs health, Facebook blows up with the well wishes, thoughts and prayers of a much larger community.
I have new friends. GWs family has been amazingly gracious and kind to me and my family. GWs friends have supported and encouraged me. This is super cool.

But otherwise, my life is incredibly normal. I almost forgot to schedule my 1 year follow-up. If I drank alcohol, I could go back to doing that. I am not supposed to do a lot of high impact sports, but I was willing to say goodbye to my jousting career. A super normal, but slightly better life, because the people I care about are healthy and happy.

Sunday, November 16, 2014

I'm going to donate a kidney

Today, GW outed me as his donor on FB. He said,
  "by the way, this cool girl who posted the pic of me and her at the Space Needle, is my donor. Everybody show some love to Sandlin, I owe her my life..." 
 which kinda blew up this picture on my FB feed. I figured I owed my friends a little more explanation.

We did have a great time at the Space Needle.

After living away from my family for some years, I deeply value my ability to care for my loved ones. I know what it feels like when you need help that is does not feel available, and what it feels like to support someone like family, whether they are family or not. It is a pleasure to be able to take action when someone I care about needs it.

In early January, my mom called me to tell me that my sister had been with her boyfriend GW in the hospital for days. His kidneys had failed, due to his lupus, and now he was in a whirlwind of dialysis and stabilizing procedures. My grandmother, the model of a selfless human, had offered her kidney, and that planted a seed for me. I remember sitting in my office, hundreds of miles from my sister, wishing I could DO something- make them dinner, take a shift at the hospital so she could sleep, walk their dogs... any kind of action.

As the next few months progressed, I entered a slippery slope of logic that landed me with a clean bill of a health, approval from the medical review board, and a pending date for a transplant surgery.

I decided I would definitely do something to help, because this would prolong GW's life, and improve the quality of his life. I decided I would do some research on organ donation, so I could help them recruit a donor. This would take almost no effort, and it would help save someone's life.

Once I did some research, I decided I should take an active role in recruiting a donor. This would take a little effort, but would save someone's life.

And then I started to think about who I might ask, and whether they would be able to make informed consent- that is, who would be able to undertake this process and fully understand what they were taking on in terms of personal risk and opportunity. After my research, and frankly, experience as a researcher looking for a drug to help people who are rejecting their kidney transplant, I knew what informed consent would look like. I decided the only way to ask that of someone else, was to really consider it for myself. Would I be willing to donate a kidney to someone I loved? Of course! There is a very limited risk, and it would save someone's life! 

But I need my kidney. Or,.. actually, what am I saving it for? The numbers of people who need kidneys are huge (80,000 people are on a waitlist that ranges from 5-10 years), but this still means I am probably not likely to know someone who needs a kidney until we are all much older. I asked around, were any of my friends and family likely to need a kidney? No? Then what am I saving it for? And like many important decisions I've ever made, I had a moment of realization that, oh, that should be me.

Would I be willing to be laid up for 2-6 weeks, if it could save someone's life? I have a lifelong obligation to stay pretty healthy after surgery, but that's just good advice for everyone. And the other side of the equation is what a difference it would make to GW. The cost to me is significant, but it would save GW's life!

Dialysis has proved to be a constant struggle, punctuated by crises that is simply no way to live life. If he could get a transplant, he'd get his time and energy back. His diet could normalize and he could go back to doing things that he enjoyed, like biking, hiking with his dog, and camping with my sister. It would literally add years to his life, and give him a quality of life that isn't possible on dialysis. That's how I made the decision to be a kidney donor.

I'm still scared. I'm still dreading surgery, and the recovery. I'm still anxious that this might change my life in unexpected ways. But those still seem like small risks compared to the good that I can do.

I have an amazing opportunity to save a life. Not everyone can do this. You have to be in really good health to be an organ donor. You have to be able to make the time for screening, surgery and recovery. I'm lucky, I've got the health, the time, and the support system to be able to do this. And seeing the support GW has from his friends and family makes me feel like I am giving a gift not just to him, but to all of his support system. It is humbling to be counted in the community that has rallied around him.

Thursday, August 28, 2014

Ice Bucket Challenge

My little sister and her boyfriend challenged Matt and I to the ice bucket challenge on Sunday night. Their ice bucket challenge occurred on top of a mountain, in an Alaskan costume that included wearing antlers and ski goggles. Clearly, I can't out do them in terms of showmanship. Or punctuality. But I did want to participate in the challenge, in my own way.

The ice bucket challenge has been ringing around the internet all summer, and dominating my Facebook feed for weeks. I've started to see some "backlash," or perhaps the better phrase is criticism. Wearing ice water doesn't cure diseases. No one learns anything about ALS when you post squealing videos to social media, so it's hardly an awareness campaign. There are other "better" places for your money. I read and considered all this before I was challenged.

I have also lost two colleagues to ALS in my brief career, so my plan was always to donate money and share some learning.

One of the reasons that this campaign has been so powerful is that so very few people had heard of ALS, or Amyotrophic lateral sclerosis, before this summer. This is in part because it is an orphan disease- meaning fewer than 200,000 Americans are affected each year.  Many people die within a 3-5 years of diagnosis, after losing the battle to control their bodies so that they can no longer breathe. I've heard this described as a glass coffin, because unlike other neurodegenerative disorders, these patients are not cognitively impacted; their body simply fails them. Currently there is no treatment, and the only drug that is used in "treatment" may extend life 2-3 months without improving symptoms. The current state of treatment for ALS is appalling.

My quick review of recent publications on the disease suggests that everything from disease progression, risk factors for developing the disease, diagnostics and treatment are all currently being studied, and are not even close to fully understood. There is a mouse model of ALS, which has been used to illuminate the role of superoxide dismutase in the neuronal death of ALS. Clearly, a person could make a fruitful career studying ALS with an eye towards helping those affected, who are desperate for a quick intervention.

Unfortunately, a quick intervention is a long way off. The $100 that I give is unlikely to result in a cure or treatment for anyone currently diagnosed with ALS. ALS is that fast, methodical research takes that much time, and the pipeline for this inquiry has all but stalled as NIH budgets for this type of research have been cut continuously for years. I am joining in the chorus of nerdy voices to say that if you care about ALS (or Alzheimer's, or cancer, or mental illnesses that can result in violent psychotic breaks, or diabetes, or Ebola, or TB, or any other disease that may impact people or places you love), and want to see better diagnosis and treatment, support increased funding for the NIH.   

The National Institutes of Health provide the majority of funding for basic research and much clinical research on all of these diseases. Tragically, funding for the NIH has been shrinking along with many federal budgets, particularly in the last 4 years. Due to the sequester, the NIH granted 8% fewer grants last year than the year before. The current NIH budget is around $30 Billion dollars, so an 8 percent drop represents the equivalent of a failure to fund many entire universities full of researchers. I have seen many bright and talented researchers leave their research because it cannot be funded. This is sad for them and their career. This is a crisis for the patients their research could have helped.

And let me just address the final point, that there might be "better" ways to spend your time and money. I've spent a lot of time in the last year thinking about how to best manage charitable giving and volunteerism. It's easy to look at this as a problem of finite resources: I have $100 for charitable giving, do I give it ALL to ALS? But I have found that living generously helps overcome those finite resources, it sets off a cascade of positive action. You support an ALS researcher, whose breakthrough provides a glimmer of hope for both ALS patients, and patients with chronic pain or other neurodegenerative issues. The chronic pain patient is able to work longer, earning them a chance to donate money to their local foodbank. That positively impacts other members of the community with an opportunity to get their life together, etc, etc. It's a virtuous cycle. Our time on this earth is short, and we ought to spend it trying to make it a little easier for eachother, in any little way that we can. Ice buckets included.

A similar concern about a "better use" is sometimes raised for supporting research- why spend money on research into something that might NOT be the cure, when patients are suffering now, and that money might be better spent on the care of the currently suffering. The beauty of basic research (which is also funded by the NIH), is that we always learn something. You may learn this gene is not involved in ALS, you may discover a drug that doesn't treat ALS. But this research is an investment in the future. In the future, we want scientists to have a huge body of work to look back on when they are developing and improving therapies for these conditions, which seems like a good use of our limited resources today.

Here is a challenge- it's not quite as fun as pouring ice on your head in the summer, but it won't take much longer.

1) Look up your legislators here:

2) Send them a note like this (you can probably email them via the webform on their contact page):
Dear My Legislators,

As a constituent of yours, I am concerned about the decline in funding for the NIH. Decreased funding for scientific research prevents us from being able to diagnose, treat and cure life threatening diseases. Please support an increase in funding for the NIH, which will contribute to a cure for ALS (or Alzheimer's, or cancer, or mental illnesses that can result in violent psychotic breaks, or diabetes, or Ebola, or TB, or any other disease that may impact people or places you love).

Thank you for your consideration,
Your name here

It's that easy to make your voice heard, and don't forget that your voice matters.

In honor of Denice Hougan and Ellen Fanning, PhD.


Wednesday, July 23, 2014

Happy Birthday! $30,000 for Charity!

My 31st birthday just happened, and it marked another, more momentous occasion: The completion of the $30,000 mark! I'm so happy!

Since my last post, I donated some money to a scholarship fund, to a veterans benefit event, took dinner to the shelter again, and spent out all my contract earnings on Donor's Choose projects. And I got a bunch of support from my family for my 5K next weekend in support of the Misha Rivkin Center. I got to spend part of the weekend picking Donor's Choose projects, which is always fun, which meant I spent part of my birthday getting messages from teachers. I'm not ashamed to admit that I found a bunch of mostly complete projects to fund, so I could get the joyful notes from teachers.
"YAHOO! I am thrilled beyond words that this project has been funded!" 
"I received news this morning that our Magnificent Mindstorms project has been fully funded! I am so grateful. The kids will be so excited to come back to school and begin working on their robotics project with these new materials."
"I am speechless and I can assure you that NEVER HAPPENS!"
This is one of the big things that I have learned in the last year.  Charitable giving is not completely selfless, and it's ok to be a little selfish for the greater good (ie, wanting to get the awesome feeling of helping someone out). In fact, that's pretty much required to get any kind of momentum, either from giving money or time.

I have also learned to think differently about what it means to live generously. I have been practicing thinking about myself as part of a larger community, not just my own family and friends, but the city I live in, the regions we love, and the people who live there. I want to see my family lead joyful lives. I want to live in a city where everyone has a chance to thrive- and that means giving opportunities and support to organizations and missions that perhaps don't directly impact me. This is why I have supported the Puget Sound Blood Center and the Friends of Youth. I have not (yet) needed blood, but I want to live in a region where we don't have to worry about that need. I was never a homeless youth (because I was lucky to have an amazing family), but I don't want homeless youth in my community to miss out on the opportunity for a wonderful life. I really feel that I benefit from the services of nonprofits in my area, and that it is one of the things that makes this region great. Getting to work with HiveBio is really what helped me shape that idea. HiveBio's mission is to bring science to everyone and anyone in our region- and the more I worked with them, the more I realized how happy I am living in a community where everyone and anyone can access science.

It's been really empowering to see how I could make a change in my own community too. I should say, I was WAY too shy to talk about this effort with any of the organizations I worked with, or to solicit support very broadly for this. Instead, the $30,000 up on the thermometer is mostly the work of my family and close friends, chipping away at what sounded like a crazy goal. In that time, my mother and grandmother taught me to cook for 30 people, I built a science education program out of what used to be some boxes in a closet in a warehouse,  my friends got me running lots of 5Ks, my dad donated so much blood the blood center is practically on his speed dial, Donor's Choose reports I have helped 966 kids, my parents started supporting an orphanage in Africa, and most of my family has either given or received charitable donations for birthdays and Christmas. Once we got into the swing of it, the dollars just ticked away. There were hurdles, of course: I lost my job, I lost confidence in how I could reach this goal, at various times I lost focus on the effort. Making a habit of volunteering and the encouragement of my family seemed to provide enough momentum to pull me through. I am really grateful to the friends and family (all of you) that pitched in along the way- despite the fact that the elevator pitch is terrible, and that I often just felt like I was asking for money. And I hope they are happy too- I mean, look at all the cool things we accomplished!

When I first started this project, my dad teased that he would help out this year, but $31,000 is too much for the next year. I have been thinking about how I would follow-up this project. I have found organizations I want to continue to support because they bring me so much joy. I have also learned that volunteering is a really great way for me to feel connected to my community, regardless of whether I meet many people while doing it, so I hope to continue that effort. Mostly, I want to continue to live generously and remain connected to my community, even as my community changes (when I lose my job again in December) and the things I can give change. I want to know that some of the goodness in the world is because of, and for, me.

Monday, June 9, 2014

SummeRun 2014!

Let's talk about a big finish. My grand finale will be a 5K in support of the Marsha Rivkin Center for Ovarian Cancer. They do research and treatment for women with ovarian cancer. They do fantastic work, and have created a community of support around these patients. I ran last year on my birthday, and it was a really fun, and inspiring event.

To make this a big finish, I want to raise a lot of money. You can support me or my team- or join the team!- here. My goal is to finish out my fundraising goal with this event. Currently, that means I need to raise another $1800. Hopefully that number will shrink with some other events along the way, but I gotta raise some funds!

I'm also accepting ideas for fun, but run-worthy costumes. The briefcase 5K was a hoot, and I can only think of more reasons to run in costume.

Thursday, June 5, 2014

Over 28K!

My dad likes it when I update the thermometer. With some hours I've put in, a big donation he sent to an orphanage they support in Africa, and the Briefcase Relay I talked some friends in to running tomorrow (in support of the foodbank)... the thermometer has just surpassed $28,000. That's a really crazy huge number. 39% of that is real dollars- which is still a crazy huge number.

Hopefully there will be photos from the briefcase relay- there will be costumes. Wish us luck!

Thursday, May 22, 2014

Give Big and Leverage Dollars

Thermometer is up over 90%. This has a lot to do with the Seattle Foundation's Give BIG event. It's a good time to give, because it allows you to stretch your money a little farther by accessing the stretch pool. More than $13 M were donated this may to local nonprofits. It's pretty awesome.

I'm starting efforts to fundraise for the SummeRun 5K again this year, and hoping to get in some trail work with friends to get the last bit done.

I'd be lying if I said this wasn't starting to feel like a bit of a slog. Now we are talking deadlines, which are much less sexy. But I'm relieved to know that I'm actually on track to make this deadline (even if plan B is to donate the remaining money in July. It's now a number I can almost afford.)

I think that overall the impact of the project has been good. It's forced me to think about how I want to spend my time and money, and the various ways that those choices affect me and the people around me. And it's helped me to find ways to include charitable work and giving into my normal routine. I now ALWAYS say yes when a cashier asks me if I want to donate a dollar to the foodbank, MS society, cancer research, or what have you. I seek out girl scouts, boy scouts, and campfire kids to help their fundraising. I know how to connect homeless kids to services, thanks to Friends of Youth. I can also cook for a crowd. I make a budget for charitable giving. (Which is cool, because I have enough money I can comfortably share some of it- making me feel double awesome.) I've been able to talk with my friends and family about charitable work and giving, which previously seemed uncomfortable (it's only uncomfortable because no one has any idea what they are supposed to do).

I still struggle with the question of what is best in terms of my time and money. Food bank or Red Cross? Are 5Ks a legit form of "charitable giving"? What about other organizations that do cool and important work, like scholarship funds, animal shelters, or community services? I'm trying not to over think it now. I want to live in an interesting, safe, and vibrant community. That means I support the work of a lot of different kinds of people, mostly because I want to know that those kinds of people are around. One cool thing about giving is that it isn't all or nothing. I can give some dollars to the cat shelter, some dollars to the homeless shelter, some dollars to the community center, and all of this is good. I'm not stressing myself out about whether it is all equivalently good. If I feel compelled to help, I'll help.