Tuesday, October 23, 2012

Calamity makes cousins of us all

Sato is scared of Halloween
October is flying by, and I just got back from a quick visit to Texas (where it was still 80 degrees. Seriously, our jack-o-lanterns have already rotted from the heat.) Shaina is on a new antibiotic that seems to be making her pretty sick. She's not feeling well, some of her liver numbers are rising, and today she received a higher MELD score, but she's somewhat stable for the time being.

As she's spent the last several years going back and forth to the transplant clinic and various stays on the transplant floor at Baylor hospital, Shaina has gotten to know quite a few fellow transplant recipients. These recipients share a special bond, they've experienced something that the rest of us will never understand. They have lived to the brink of death, often more than once, and had a piece of their own body removed and replaced with someone else's. Only these patients know what the transplant process is truly like, how it changes you in both obvious and unspeakable ways. It's an exclusive club that no one joins by choice, only necessity.  

It's the young transplant friends of Shaina's who really get to us. We're glad that she has people her own age who can actually relate to what she's been through, even if they come from totally different worlds and have nothing else in common. They can talk about the pain. Bad labs. Medical procedures. Family drama. They know better than anyone how precious our time is. Transplant recipients love life. They are wise well beyond their years... especially the ones who got sick young. 

Shaina has watched too many of these friends die. She sits by the hospital bed on their final days. She attends their funerals. She keeps in touch with their families after they are gone. I don't know how she does it. This is her fate, staring back at her from their deathbed. This is a reminder of how quickly her life can take a turn for the worse. 

I asked her why she puts herself through this when I was in Dallas. Shaina had just learned that a transplant friend of hers who is our age just suffered a major complication, her hepatic artery clotted off and she would need a new liver. This has happened to Shaina before. Her friend - who had been fine after her original transplant, who had recently met the man of her dreams and just a few weeks ago gotten married (I couldn't help but feel hopeful for Shaina after hearing that story) - was suddenly hospitalized, her liver failing, she was dying. Overnight she was at the top of the waiting list. Just like that. Shaina reached out to her friend when she found out she had been hospitalized. They texted back and forth for a couple of days. When her friend got too sick to respond, Shaina started checking the blog that her friend's family was updating. 

So when I asked Shaina why she follows these people's cases so closely - it must depress or frighten her somewhere deep inside, right, thinking of all the bad things that could happen to her? Shaina said I was wrong. It doesn't bother her, because she knows what they are going through, and it helps her to have people in her life who know what she is going through, so she hopes she is helping them by being there for them when they are going through the worst of it all.

When I got home from Texas, I started asking Shaina for updates on her friend. And I started checking her friend's family's blog, too. (She's in surgery receiving her new liver right now, by the way.) And you know what? Shaina is right. I feel a connection with this family I've never met. I've never spoken to these people, I don't know what they look like or anything about them. But I know what they are going through as they sit in the surgical waiting room right now. Like the patients themselves, our families share an unfortunate yet distinctly unique bond. We know what it is like to sit by, helpless, watching a loved one get more and more sick. We understand the anxiety and the frustration. We have witnessed a person we love come back from death's door. We have witnessed the miracle of life in a way that others will never understand. 

Shaina's situation has changed everyone in our family. For the better in a lot of ways, for the worse in some. It has affected us physically and mentally. It has made us see the world differently, taken us to different places, given us different priorities and different relationships. After having gone through something that changes so much of you so deeply, sometimes its hard to relate the experience to people in the "real" world. Perhaps that's part of the reason why we start blogs.

But it is somehow comforting to know that there are other families out there who are going through the same thing as ours. No matter how alone you feel in this world, chances are someone out there has lived your struggle. And one way or another, they got through it. In one of my favorite quotes, Saul Williams once wrote "calamity makes cousins of us all." In my opinion, you can't ever have too much family around to help you through the toughest times. 

So today, we stand with Shaina's friend and her family. Our hearts and minds are with you all, our extended family, today - sending strength, love, patience and determination. 

Wednesday, October 3, 2012

You can help support Shaina's fight to survive

Friends, it has been too long. Partly because I have been back in New York, trying to get my life really started here (two years after moving), but mostly because Shaina is still waiting. We want this blog to be an inspirational space, one that encourages followers to make the most of every second of their lives. That is why it is hard to find the right words to use on this blog now, as Shaina and our family endure the often long and always grueling wait list associated with organ transplantation.

Shaina is at home, continuing to administer daily intravenous antibiotics through a PICC line to ward off infections and seeing her doctors at the hospital for monitoring once or twice a week. As we expected, she is definitely getting sicker, but the treatment plan her wonderful doctors decided upon has, up unto this point, kept her somewhat stable; at least her liver is not crashing out of control too quickly. We're buying time.

Nurse Sato keeps an eye on her sick mommy
Shaina finds it difficult to get out of bed most days, the exhaustion and pain of liver failure taking their toll on her daily routine. She is frustrated, feeling trapped in her ailing body. But she knows that she must keep herself mentally strong and ready for that single phone call that will change her life, and ours, forever - the call from the hospital saying that they have finally found her the perfect liver.

Since our brother David moved back to Dallas a few weeks ago, he's been spending some of his free time at the house. He and Shaina have a great relationship, and his presence always brightens her spirits. I am planning on returning for a visit next week, too.

While spending a lot of time in the bed or on the couch, Shaina and our family have been closely following the upcoming presidential election. I know most people are tired of the constant barrage of political ads and discussion, and you think that this election won't really have much of an impact on your everyday life. But as friends and family of Shaina, this election is personal for each of you. Our family owes a lot to President Obama and the decisions he has made that directly affect Shaina's fight.

As you know, Shaina has been sick on and off since she was 12 years old. She has been in and out of hospitals, on countless (sometimes experimental) medications, and undergone tens of thousands of tests and procedures, not to mention three previous liver transplants. Because she's been sick and unable to work her entire adult life, she is considered a disabled dependent (a position my fiercely determined and independent sister despises), which has allowed her to remain on Mom and Dad's health insurance. Thankfully, our dad is quite successful and has had great insurance plans through his employers that have covered the majority (but definitely not all) of Shaina's medical expenses. She also receives a small amount of Medicaid coverage that helps with some of the expenses her primary insurance doesn't cover. Even with all that coverage, my parents still end up paying tens of thousands a year out of pocket for Shaina's medical care. It would be impossible for a sick person who doesn't have someone like my parents, a caretaker with a good paying job and time to care for them, to pay for their longterm care... but that's a whole other story.

Despite the excellent insurance coverage Dad has had, Shaina has already "maxed out" her lifetime limits on two different insurance plans. You see, before President Obama passed health care reform, insurance companies could set a cap for the amount of coverage an individual is allowed to receive, usually somewhere around $1 million. Once you reach your limit, the insurance company could simply boot you, meaning you would be left with no private health insurance. And other insurance companies could then refuse to cover you because you have preexisting conditions.

Coincidentally, Dad happened to be changing companies (and therefore insurance plans) both times Shaina reached her lifetime limit. One of these times was just before a transplant, after she had literally been dying in the hospital for weeks. Obviously, our family was distraught and far too absorbed 24/7 in her condition to worry about insurance coverage. The hospital was notified that Shaina would not have enough insurance to cover her impending transplant but, being the compassionate people they are, they did not want to add to the stress our family was already enduring. When my parents remembered they needed to let the hospital know that their insurance plan was changing, they found out that Shaina's coordinators at the hospital had quietly secured private foundation money to cover Shaina's transplant. What if Dad hadn't changed jobs then and the hospital did not have private money allocated for such situations? My parents would be bankrupt, or worse, Shaina would not have received that lifesaving surgery. We shutter to think that anyone with the will to survive could die just because they did not have insurance.

Thankfully, "Obamacare" prevents insurance companies from placing annual or lifetime limits on an individual's coverage. The law also prohibits insurance companies from refusing patients because they have preexisting conditions. If "Obamacare" stands, Shaina will never go without coverage. Mitt Romney and Paul Ryan have offered contradicting statements on how severely they will gut "Obamacare" as soon as they are elected; often they promise that they will get rid of the law entirely. The lives of people like Shaina depend on this law. We cannot afford to have people in power who threaten to take us back to a time when insurance companies were more concerned with their bottom line than providing patients with the care they need to survive.

We realize that this will likely be the last transplant Shaina ever receives. Fourth liver transplants are rare, but fifth transplants are basically unheard of; the surgery would be too technically difficult and there are ethical considerations around giving one person so many organs when organs are in such short supply. Her disease will not be cured by this transplant, but Shaina isn't giving up. Each transplant buys time; time for her to to experience just a little more of this glorious thing we call life, and time for doctors to hopefully come up with a cure for her disease. That cure is not as much of a longshot as you may think.

Stem cell research holds the greatest promise for Shaina. Around the world, doctors and scientists are researching ways that stem cells could cure many chronic diseases, and they are researching ways that stem cells might assist with failing organs and organ transplantation, too. Every single day, advances are made in this promising field. Yet, while other industrialized countries around the world have put years of federal funding into stem cell research programs, researchers in the United States are behind in the stem cell research funding race.

When stem cell research was just getting going back in 2001, then President George W. Bush banned the use of federal funding for embryonic stem cell research based on his personal (and very narrow-minded) religious beliefs concerning when a group of unused cells should be considered a person. America - a country that has long been at the forefront of scientific research and medical advancement, a place with some of the greatest scientific minds in the world - was left behind in the stem cell research race. I was so angry that one man, our President, could so severely stunt the efforts researchers were making to help my sister and millions of sick people around the world. I realized that the people we elect to public office affect Shaina's chances of survival - they could either promote this promising new area of research, giving researchers every tool possible to find uses for stem cells, or they could greatly hamper the world's progress in this arena. It was then that I decided to go to work to elect those politicians who strive to make our world a better, more compassionate place.

Shaina was feeling okay in 2007-08, and she went to volunteer for President Obama's campaign. She was a delegate in the Texas caucuses, and she helped with phone banking when she was feeling well enough. And when Obama was elected President, he did the right thing. Soon after taking office, he submitted an executive order that reversed restrictions on embryonic stem cell research, a move that has already led to dramatic advances in the understanding and treatment of diseases like Shaina's.

So for those of you who say that you are just going to sit out the upcoming presidential election because you are sick of all the partisan rhetoric, or because you think that the President isn't able to make any real changes that affect you personally; I'm asking you to reconsider.

The person we elect to run the greatest nation in the world holds much power in his or her hands. We have a responsibility to get involved in the political process, to understand the facts about the positions that each candidate takes on important issues like these. I have chosen to dedicate my life to help elect people like Barack Obama who are working to protect people like my sister Shaina. Because her life is my life. She is my only sister. She is my spiritual twin and she is my best friend. And I will work as many hours as physically possible for little to no money to ensure that every political effort is made to protect Shaina's right to quality healthcare, and to advance the chances of finding a cure for her awful disease. After all that she has been through, and as hard as she has fought, this is the least I can do.

We're not asking you to give up your career or much of your personal time to take on her cause, but Shaina and I are asking you to think about how your political decisions personally affect your life and the lives of those people you care about, like Shaina. There is not much you or I can do to help my sister get through this battle; for the most part her outcome relies on the power of medicine, the hands and minds of great doctors, her inner strength, and a little bit of luck. But the least you can do is get out there and vote for the guy who is giving people like Shaina a better chance to survive.

Election day is November 6th, only 3 days before Shaina's 29th birthday. And early voting has already begun in many states (find your state here). Please take a few minutes this year to go vote. Casting a ballot for candidates who support important issues like health care reform and medical research means more to Shaina and our family than you will ever know. It's the greatest thing you can do to help Shaina's cause. And from the bottom of our hearts, we truly thank you for your support.