Shaina's words

Sunday, Shaina's memorial will be held in Charlotte. We are Carolina girls, after all. It's where we were born, where we grew up, where we made many good memories. When Shaina left Charlotte to get her first of three transplants in Dallas, she left her innocence behind. Going through her things, we found this poem Shaina wrote a few years ago about missing Carolina... tomorrow, we leave to take her home.

cliche.
by Shaina Johnson

in my mind im goin to carolina
sweet carolina with easy smiles and relentless laughter
first loves
shadow streaked streets and
pavement burning  virgin feet
your succulent barbeque and spicy slaw atop fluffy white buns dripping
onto breasts mixing with tiny beads of sweat
and
satisfaction
washed down by sugar spiked tea over bunny ice.
sweet carolina with tarheel blue skies
preaching god and basketball,
innocence
and
cul-de-sac dreams
i ran through your sprinklers and let sharp wet itchy blades of grass cling to my calves
i plucked warm plums from the branches of your trees and let them burst between
sticky lips and teeth,
did the same with teenage kisses on summer roads
to the
soundtrack of content crickets hidden in nests of your fragrant
pine needles.
sweet carolina where at sweet sixteen i drove your cityscape
windows down
music up,
songs escaping from ecstatic lungs.
where i splashed in muddy creeks and made shelter of your fallen branches
where i created imaginary idealistic worlds of electrical-box stoves leaf-strewn floors and
ceilings that sunlight shines through
sweet carolina where i spent evenings past
bedtime with my
big sister, crouched beneath white canopy beds
our ears pressed to cold metal floor vents to hear
classified adult conversation.
where language only a sister could understand was
passed through whispers between silky sheets
and onto innocent hearts where they converted into muffled giggles.
sweet carolina where every toad could become a prince if only i kissed it,
if only i
believed.
where shadows could be boogey men
and city lights and fireflies twinkled like temples of possibility.
where strawberries grew around tree stumps
and stained our fingers red come summertime.
carolina where autumn smells of sunday football games, street food, and beer breath
carolina where big gulps of winter air burn your chest to
remind you that
you
are
alive.
where wide open spaces east of bum fuck become perfect places for
parties around bonfires where
flames lick the faces of young men
whose lips taste like marijuana smoke
and whose hands feel like home.
sweet carolina where summers rainstorms mute panoramic landscapes
and hang heavy in the sticky air
long after the last drop has
fallen.
where thunder rolls across neon treetops and incites
manic afternoons that give birth to glorious poems.
i left you   without a chance to say goodbye
goodbye to your
streets to your kisses
your bbq/sweet tea induced comas
relentless laughter
tarheel blue skies
gentle summer rains
cricket symphonies
scalding pavement
and innocence.

sweet carolina where a lifetime was lived
was learned
sweet carolina where my hearts remains
remain.

Shaina's Memorial Service

Our family's pain since losing Shaina yesterday has been overwhelming, but the outpouring of love and support from those who knew my beautiful sister throughout her life is incredibly comforting to all of us. Thank you for your kind words and gestures.

A memorial service will be held on Sunday, November 25^th at 1 o’clock in the afternoon at Harry and Bryant Co., 500 Providence Road in Charlotte, North Carolina with Rabbi Judith Schindler officiating. The family will receive friends following the service.

In lieu of flowers, donations may be made in memory of Shaina Johnson to Baylor Healthcare System Foundation, benefitting the James and Angela Thompson Diagnostic Liver Laboratory, 3600 Gaston Avenue, Suite 100, Dallas, Texas 75246.

Finding Peace for Shaina

My beautiful baby sister, my best friend, my other half, Shaina. She was the strongest person I will ever know. Her strength, intellect, and fierce determination touched each and every person she met. After three liver transplants, countless complications, and 29 beautiful years, Shaina passed away today at three o'clock this afternoon. She went peacefully, with no needles or tubes poking and prodding her, in the arms of her family. Shaina fought till the bitter end, but today, her body finally had enough.

We are thankful for the love and support of our family and all of our friends... everyone who has supported Shaina and our family over the course of her battle. And especially to our second family, all of her fellow transplant recipients and the incredible nurses, doctors, and staff at Baylor University Medical Center in Dallas. Shaina would not have had the last 10 years without your support, care, and friendships. Thank you for giving us that precious extra time with such an inspirational and incredible girl.

Shaina was a fighter above all else. Defeating countless odds time and time again, she fought tirelessly for the thing she loved most of all - being alive. Shaina loved life more than anyone I know. She faced darkness and death so many times that she knew all too well how precious each moment of her life was. She laughed and loved deeply, wrote passionately, spent extravagantly, argued way too dramatically, and inspired everyone she met. She lived every healthy moment to its fullest. The fire that burned in her was both evident and contagious.

A piece of me has been ripped out today, but I am at peace knowing that Shaina will not face any more pain and suffering. I hope I can live the rest of my life honoring my beautiful sister by living a life full of passion, never taking one second for granted. And I hope this is what you will take from your time with her as well. It's what Shaina wanted to share with the world.

We are making plans to bring Shaina home to Charlotte, North Carolina to be laid to rest. These are her wishes, and I hope that each of you will join us in person or in spirit. I will post arrangements once they are finalized. From Shaina and our family, we truly love you all. This Thanksgiving, let us be thankful for our friends and family, and the beauty that Shaina brought to each of our lives.

Looking worse

Shaina has deteriorated since this afternoon. She is currently on life support in the ICU and the doctors are concerned with her lack of brain function. They are giving her dialysis to try and get all toxins out of her system and will conduct further neurological tests in 24 hours. For now, mom, dad and I are at the hospital and will be by Shaina's side as much as possible throughout the night. David is stuck in Omaha until the first flight tomorrow morning, but he will be with us tomorrow.

The doctors are very concerned, and have warned us that things are not looking favorable for a recovery. But they know and we know that Shaina is stronger than any of us and we are holding onto hope that she will somehow pull through this overnight. We appreciate everyone's love and support as we wait to see what the next hours bring.

Encephalopathy is back

Well, when I called the family this morning from the airport, awaiting my flight to Dallas, there was some bad news. Shaina has been having a lot of pain since last week, and we have been holding our breath hoping that she wouldn't have to go into the hospital. But, when mom went in to her room early this morning, Shaina was unresponsive. They had to call the paramedics to get her down the stairs, and the ambulance went ahead and took her to the hospital. She is suffering from encephalopathy again and high sugars. When she arrived at the hospital, her team of doctors decided it would be best to admit her to the ICU until they can figure out exactly what is going on. 

We will keep everyone posted.

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. 

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.

Cherishing Family

The cast comes off!

Sorry it's been so long since we updated the blog. Time has a tendency to fly when you're busy from sunup to sundown. Shaina is home from the hospital. Not feeling great, or even good, but she's home. She was hooked up to IV antibiotics and other medications 24 hours a day, going back and forth to the hospital at least twice a week to get infusions of IVIG and labwork for the past couple of weeks since she was discharged. But as of yesterday, her infectious diseases doctor has decided to stop the extra antibiotics and infusions to see what happens. We're crossing our fingers and waiting to see what her labs show next week. The cast was removed from her foot, leaving her with one very skinny and pale "noodle" leg. She still has to wear a hard boot for a few weeks, but she can take it off to shower and at night. And she can shower in her own shower, sleep in her own bed, all with her baby Sato never leaving her side (even following her to and sitting guard outside of the bathroom door).

This past Sunday morning, Shaina dragged herself out of bed to help Mom and me prepare a Father's Day breakfast for The Most Interesting Man In The World, our Diddy, the one, the only, El Jefe, a.k.a. Jeff Johnson. And while most everyone spends Father's Day reflecting on how lucky they are to have a father in their life, Shaina and I feel extra lucky to have come from the loins of such a magnificent man.

Our father has spent his entire adult life sacrificing for the good of our family. It is obvious to anyone who knows our family that our father loves each of us more than any man could or ever will love us. (This creates some very high expectations in the relationship department for Shaina and me, but that's a whole other story.) As long as Shaina, David, and I can remember, our dad has worked harder than anyone we know to provide a great life for our family (and great insurance plans for Shaina). And when he gets home from his business trips, no matter how far or long he's traveled, he's always ready to sit down with the family and make us laugh. Mostly with stories at his own expense. And these stories are mostly true. He is a great story teller. So even though this post is a few days late, Shaina and I had to give a shout-out to our favorite guy, to thank him for always being that rock that our family needs to lean on. He's the best.

Since Shaina is home from the hospital, Grandma is doing better and Debbie returned to Dallas to help, I returned to New York this week. It's a bittersweet return - I'm glad to be home to see my cat and my boyfriend and my apartment and this awesome city that I now call home, but I'm sad to leave my family, who is going through such a difficult time. But the reality is that no one knows how long Shaina will be waiting for her transplant. And wedding season is in full swing, so I've returned to the East Coast to attend some of these joyous occasions. Still, I can't help calling Dallas a couple of times a day, just to check in.

No matter how awesome the city is, or how fat and cute my cat is, or how much fun our friends' weddings are... my family is, and will always be, at the forefront of my mind. It's hard to be so far away during times like these. David is transferring back to Dallas from Denver at the end of July to be closer to the family. Dad has been trying to travel only 3 or 4 days a week instead of 5 or 6. And I'll keep making trips back to visit when I don't have things going on in New York. We're in this thing together, no matter how much physical distance is between us.

One of the most annoying things that my mother hammered into us while we were growing up was: "with very few exceptions, friends will come and go, but your family will always be there." Friends always seemed more important during your teenage years. But go figure, Mom was right. Shaina is my sister, practically my twin, my blood. She should be visiting me in New York. We should be getting into trouble together, shopping together, having babies together, going on vacations together, experiencing life together. I would do anything to take her pain and suffering from her. But I can't. So instead, I will be there for her in every way that I can as we continue this waiting game...

Nobody said it was easy

Well, we're back in the hospital again.

Shaina finished another round of antibiotics early last week, and the doctor wanted to see if she could do without them for a time. A couple of days later, a low-grade fever brought her back to his office. While she was there, they went ahead and drew labs for the second time in a week. She returned home with another round of antibiotics in tow. Unfortunately, the lab results came back that afternoon showing Shaina's liver numbers had risen drastically in a matter of days. Her doctors decided to admit her to the hospital to try and figure out what was going on.

Thankfully Aunt Debbie was still in town to take care of Grandma while Mom went with Shaina to the hospital. Debbie was scheduled to leave Dallas this past Sunday, so I returned to Texas to help. Grandma has nurses coming to the house to work on getting her strength back after a rough bout of pneumonia. So Mom and I are taking turns with Grandma at home and Shaina at the hospital. Grandma is feeling much better this week, and getting stronger every day.

Shaina's liver numbers have continued to rise since she was admitted last week. She is showing signs of jaundice and ascites. She is on antibiotics to treat any infection that would cause the low-grade fever. But with those antibiotics come additional fluids, and Shaina was starting to get very uncomfortable from swelling. This morning, her doctors performed a transjugular biopsy to get a better idea of what's happening in her liver. The biopsy showed an acute flare-up of her autoimmune disease, which could certainly explain the higher liver numbers. The autoimmune disease is likely flaring up because Shaina's immunosuppression was lowered to help her body fight the enterovirus she was dealing with this year. The Catch 22 of treating her autoimmune disease and the enterovirus continues...

In traditional Shaina fashion, the plan that has been devised to treat all of these issues is anything but simple. Tonight Shaina is receiving the first of a few strong doses of steroids to get her autoimmune disease under control, a new round of IVIG to prevent the enterovirus from flaring up while her immune system is suppressed by the steroids, and two diuretics to help relieve some of the swelling. Her sugars are high again so tonight she received insulin.

Unfortunately, Shaina began showing some signs of encephalopathy after her biopsy. It's not as severe as it was during the worst of the last bout, but she is definitely experiencing some confusion and unsteadiness. She is taking lactalose to lower her ammonia levels, but we hope that getting her autoimmune disease in check will help her liver and the encephalopathy will diminish. We're hoping. In the meantime, I can assure you that there's no way she's going to break the other foot on my watch.

long hospital nights

So tonight I'm sitting here in the hospital while Shaina gets some much needed rest, contemplating the road ahead. Will it be long or short? Will they even find her another organ before this one gives out? Hopefully the current plan of action will buy this liver some more time. But how much more time do we really have? And will she spend all the rest of the time leading up to her transplant here in the hospital, confined to a lifeless hospital room night after day after night, with little to no personal privacy, attached to IV tubes and blood pressure machines, breathing only recycled sterilized air under harsh florescent lights? How much more pain must my little sister suffer? How much more prodding will her body take? And how much more can our parents, our family, endure? So many questions that no one can answer. Yet another sleepless night.

This brings me to an ongoing conversation that Shaina and I have about her situation that she would share with you personally if she were well enough to write. Right now, for our family, life stands still. We are all trapped in this moment, held captive by Shaina's dying liver, stagnant both here in this hospital and in our lives. As Shaina puts it, right now she is simply living, she is not really alive.

To live is to survive. Shaina is breathing, she is fighting, she is giving everything she has to make it to this transplant and make the transplant work. And the rest of the family is hanging on right there with her, halting our personal lives to give all of our strength and time supporting Shaina, to help her through the hardest fight of her life. Despite the ridiculous odds against her, Shaina is choosing to fight this fight. She could have given up many, many times. But she keeps fighting because she knows what it feels like to be alive and she wants with every fiber of her being to feel alive again.

Feeling alive is to wake up in the morning and not hurt. To be able to walk your dog outside and enjoy with her the warmth of the sun on your skin (or fur). To be able to cook a delicious meal with your family and friends and sit down together to savor it. To ride down the highway with the top down and the radio turned waaay up. To feel your feet in the sand and smell the salt of the ocean. And as Shaina once said, to have your Dad come in your room and put on a great jazz record, turn it up loud and watch him live every note. It is these experiences that make you feel alive. To feel love, passion, companionship, heartache and sometimes, just to have a belly laugh. To feel alive is to be moved. It is all those feelings and moments that make life worth living. When you're stripped of all of these things, and you're left struggling just to survive each day, you realize what is really important in life and how fortunate most of us are to experience the beauty all around us.

Life is so short. If you have your health, then you have the ability to live your life in a way that brings you great satisfaction and joy. Find out what it is that moves you and give to that everything you have. Enjoy getting caught in the rain. Cherish time with friends and loving family. Explore new cultures, hobbies and challenge yourself because you can. Because you have limited time on this earth to be the most that you can be, to do whatever it is that makes you feel truly alive.

Shaina doesn't want anyone's pity. She wants you to know her story and find inspiration. She wants you to be happy. And loved. And gloriously alive every single day. Her struggle has taught us that you can't take one moment of life for granted.

That's what we talk about from time to time, as we pass the hours in this hospital room or another nearly identical to it. Times are hard now, maybe harder than they've ever been, but Shaina has the will to get back to a healthy, happy place again. And her strength enables all of us to keep fighting along with her. We will get through this together; what doesn't kill us only makes us stronger. And so much more grateful.

The Waiting Game

Sato rides on Shaina's wheelchair

After a couple of weeks in Dallas, Shaina was stable from an encephalopathy perspective, so I returned to New York to take care of a few things here (my fat, needy cat, for one). Of course as soon as I left town, Grandma’s COPD started flaring up and she’s been feeling quite ill.  Thankfully, Aunt Debbie was kind enough to fly out to Dallas to help with Grandma and Shaina and whatever else needed doing around the house. She has been a huge help and source of support for my mom; we're so very grateful that she took time out of her life to help the family through this difficult period. David is also in town this weekend visiting for Mother’s Day. I know that everyone, especially Shaina, enjoys having him around. (Maybe everyone except Sato. She loves him but he scares her. He has big hands.)

The infection that Shaina was fighting appeared to be gone last week, so her doctor stopped both of the strong antibiotics we were administering at home. After spending one blissful week untethered from the IV poll, another infection appeared. She has been receiving additional antibiotics at home since Wednesday.

The swelling of her broken foot has gone down, making her cast loose. Earlier this week her old cast was cut off and replaced with a tighter new one. Between casts, the orthopedic doctor took another x-ray of Shaina’s foot. The bad news is that it is still broken. The good news is that the bones are aligned, so the foot will likely continue to heal on its own. Hopefully she will have the cast removed for good in a few weeks.

Now we’re just playing the waiting game. Shaina is still going to visit her doctors at least once a week but at this point we’re in somewhat of a holding pattern, waiting for the right liver to come her way. Our goal as a family is to spend as much time together as possible while we wait. I plan to return to Dallas soon, once I get back from a wedding in Ohio.

While the entire transplant journey is incredibly difficult, you could make the argument that this indefinite waiting is the hardest part. We could have several relatively boring weeks before they find the right organ, or, like with her first transplant, I could get a call from my mom tonight telling me to jump a plane and be at the hospital in less than 12 hours. We just don’t know. Personally, I have a life in New York that I don’t want to miss out on. But when I’m here, 3/4ths of me is still in Dallas. I spend 4 or 5 hours a day on the phone with Shaina and Mom. It’s difficult to concentrate on anything else. It’s impossible to make plans for next week, let alone next month.

So we wait. Each day that we wait is another day that Shaina is here enjoying the beauty of life. My family’s top priority right now is just to be there for each other, enjoying each others company, love and support. Already on borrowed time, we don’t take one second with Shaina for granted.

Donate Life

My sister is only one of the 114,070 Americans currently waiting for an organ. Like so many of the people on waiting lists, Shaina had no control over the diseases that have caused her to need a transplant. She was only 19 when she received her first liver. As of last month, there were 1,801 children waiting for an organ. Like my sister when she was first listed, many of those waiting have their entire lives ahead of them.

I know first hand that life after the transplant is what these patients' families dream about as they sit at home or in the hospital waiting and watching their loved one get sicker and sicker. The only hope you have as you watch your sister, mother, uncle, or child suffer is that you will soon get that call from the transplant team saying that they have found the perfect organ.

But that call doesn't come in time for every person in need. There are simply not enough donors to go around; every day 18 people die waiting for an organ. Shaina has watched friends die from diseases like hers. And while we feel incredibly lucky that she has been approved for a 4th transplant, we know that there's still a chance it won't happen if they can't find the right liver for her.

My beautiful sister, Shaina.

We often talk about the other organs Shaina has received. Though we don't know who they are, the gratitude and love that we feel for the donors and their families is overwhelming. What a selfless act these strangers made that allowed my sister to keep fighting. There is no way we could ever repay them or thank them enough. Without their sacrifice after death, my sister would not be living. Shaina lives each day with the knowledge that a piece of that donor lives on inside of her.

I know that becoming an organ donor is not something that most people think of as they go about their daily lives. But it is something that my family and I think about every day. And I hope that whenever I die, I can help as many people as possible through organ donation. To give back for the gift that those donors before gave to me: to talk to my sister on the phone after a hard day, to feel jealous when she gets a new pair of hot heels, to see her smile at my dad's stupid jokes. All of this, every second of the past 10 years with my sister would not be possible without the selfless generosity of organ donors.

April is Donate Life Month. If you have not taken the time to sign up as an organ donor on an official registry, I hope you will take a few minutes to do so today. This page offers information about becoming a donor in each of the 50 states. Each of us has the capacity to give people like Shaina the chance to live a full life. It's one of the greatest things you can do for someone else.

The battle is upon us

One day last week, while Shaina was in the hospital, we had a talk about her status on the transplant list. The mood was somber.

Unfortunately, because of all the recent complications and the fact that her liver is no longer processing her medications like it should, her liver is far more damaged than her labs reflect. Because her labs are not high, her MELD score is not high, meaning she is very low on the transplant waiting list. If we wait for her labs to raise her to a higher position on the list, she will be too sick to undergo the actual transplant surgery. Believing that Shaina is the strongest now that she will be, her doctors want to get her transplanted as soon as possible, while she has the best fighting chance to survive the surgery and the inevitable complications that will follow.

The plan is to clear Shaina’s body of the infections she is currently fighting, and then immediately begin the search for a new liver. This means the transplant will take place much sooner than anyone anticipated. As her family, it will be difficult to put her in an extremely dangerous situation when she doesn’t seem as sick as she has been before previous transplants, but we are confident in her doctors’ decision that now is the time to move forward.

Shaina feels very fortunate that she has been given the chance to receive a fourth liver transplant. Most doctors would not attempt such a technically and clinically complicated surgery. But with the best doctors in the country behind her, and with her strong will to survive, Shaina is ready to fight this last fight.

Shaina is out of the hospital now, taking her antibiotics and fighting the infection from home. We should know in the next week or so if the infection is gone. I will continue updating this blog to keep everyone informed of her status. Shaina is helping me write many of the posts, and she encourages you to comment here and ask any questions that you may have. It’s going to be a tough fight, the toughest one yet, and Shaina needs everyone’s love and support to make it through the days ahead.

Diabetes?

For two days leading up to her admittance to the hospital, while Shaina was still quite foggy from a mental standpoint, she started craving sugar. Anyone who knows Shaina knows that she has quite a Dr. Pepper addiction. But it was way beyond that. She no longer wanted any food or drinks other than really sweet stuff – fruit, soda, sweet sports drinks. And she couldn’t get enough; she was gulping the liquids down faster than we could bring them to her. We gave her what she wanted, because we didn’t want her to get dehydrated. I asked her liver doctor if the cravings could be associated with encephalopathy, but he was not aware of any such correlation.

The night after she was admitted, her labs came back showing a blood glucose level of 1,031. Normal levels range from 70 – 145. When her nurse came into the room, she was visibly concerned - they had never seen glucose levels that high before on the transplant floor. They tested her blood sugar with a handheld monitor, hoping that the lab result was incorrect. But the meter, which only registers levels up to 500, read 500+.  The nurse immediately called the doctor on-call, who ordered an insulin drip and electrolytes, and her sugar was checked every 30 minutes throughout the night. The kidney doctor arrived the next morning, surprised that we weren’t in the ICU. He said he had never seen a patient with glucose levels that high who wasn’t in a coma.

The kidney doctors ran a test to see if Shaina’s sugars had been high over the last 3 months. It turned out they had. First they thought that she might have another autoimmune disease affecting her pancreas, but the next day they found that her body was producing some insulin on it’s own. So they have diagnosed her with Type 2 Diabetes and put her on long-acting and short-acting insulin shots. She has to check her blood sugar four times a day and change her diet. Her sugars seem to be stabilizing. We are hoping that the sugars were affected by the high Prograf levels, the infections, and the other imbalances in her body and that they will go back to normal once everything settles down.  

At least she has her mind

Shaina has always been the smartest of the three of us. Don’t get me wrong, David and I are bright, but Shaina has always had a very sharp mind. Anything she reads or sees on TV, she remembers. She is an encyclopedia of cooking and cultural factoids. She has always been an amazing writer. With anything she writes – cards, stories, but especially her poetry - it is obvious that she has the gift of the pen. Despite everything that her body has put her through physically, she always said, “at least I have my mind.”

There was only one time through all of this that Shaina really lost her mind. It was after her last transplant, and her Prograf level got way too high in the hospital. The Prograf toxicity brought on extreme psychosis. She spent 3 days in the ICU; she couldn’t talk, she couldn’t eat, she was tied to a bed and she was blank in the eyes. Shaina wasn’t there. She was like a helpless infant. The doctors warned us that there may be permanent damage, but thankfully, she snapped out of it on the night of her birthday. And just like that, Shaina was back, dirty mouth and all.

I thought about those couple of days when my mom called me earlier this month. I had just returned to New York after a visit to Dallas for Dad’s birthday. We had taken a car trip to see some fossilized dinosaur tracks in a riverbed, except we didn’t see any tracks, we just saw a river… long story… just imagine Chevy Chase in the National Lampoon Vacation movies, and you’ll get the gist. Anyway, everyone piled into Dad’s rented SUV excited for a family outing that didn’t involve doctors. Shaina seemed to have a really great time; we even brought Sato along. The next day before I was scheduled to fly home, Shaina was not able to swallow any food. She was having severe pain in her esophagus. Dad took me to the airport, Mom took Shaina to the hospital. They sedated and scoped her.

After the procedure, I called mom to see how everything went. She said Shaina was having a tough time waking up from all the drugs. The next day, Shaina still hadn’t “woken up” completely. She was in a fog. She couldn’t really talk, she only responded when you got right in her face and raised your voice, but even then she was confused and having a hard time opening her eyes. As the week went on, she got worse. She was incredibly thirsty and in and out of a coma-like state. Mom and Dad didn’t know what to do. She required 24-hour care. Mom was bringing her food three times a day, usually cream of rice, forcing her to take her pills, and helping her to the bathroom. When the doctors saw her, they said she was suffering from hepatic encephalopathy. One of your liver's jobs is to remove toxins, like ammonia, from your blood. Too much ammonia causes damage to the brain and nervous system. Shaina's doctors immediately put her on Lactulose and Rifaximin to help reduce the ammonia in her body.

Shaina seemed to get better for a couple of days, but the next week, it happened all over again. Dad called me around dinnertime on Friday and asked me if I would be willing to come back to Dallas to help with Shaina. My dad rarely calls me directly (I call their house at least once a day and talk to everyone), and he has never asked me to come home; he always offers to bring me down if I feel like a visit. This time, Dad asked me if I could fly down the next day to help, and I knew it was serious. I jumped a plane the next day and arrived to find Shaina totally out of it and Mom at her wits end. Shaina was back in a coma-like state. She had lost the one thing that was most important to her - her mind. To this day, she doesn't remember a whole week of her life.

The night I arrived, I told Mom to get some sleep and I would keep an eye on Shaina. Shaina was somewhat awake, but confused, and she was suffering from these violent involuntary jerks that made it difficult to sit up, let alone walk. (We later learned this was a severe case of asterixis, or “liver flap,” commonly associated with encephalopathy.)  I came upstairs to check on Shaina during dinner and saw her sitting on the floor near the door to her room. She had fallen down while trying to turn off her light. I was really worried, but she begged me not to tell Mom. So I didn’t. But I made her promise that she would call me when she wanted to get out of bed and I stayed in her room until she seemed to fall asleep.

Shaina's broken and bruised foot

Later that night, I was asleep across the hall from Shaina with both doors open so that she could call for me if she needed me throughout the night. I heard a large crash and Shaina cry. I ran into her room to find that she had suffered a jerk and fallen trying to walk to the bathroom. I checked her head and her body but didn’t see any blood. She was crying as I helped her back into bed, saying that she thought she had broken her foot. She said she had heard a snap when her toes curled under her foot and she stepped down on them. I looked at her foot, but didn’t see any bones protruding, so I thought she must have hit it hard on the door frame or somewhere during her fall and perhaps sprained her ankle. But when I went back to check on her an hour later, her foot was swelling up and there was an obvious hematoma spreading across the top from her ankles to her toes; her whole foot was turning red and blue and was terribly swollen. It was 2:45am. I asked her if she needed to go to the hospital right then, or if she could wait until the morning when we had an appointment with her doctor. She wasn’t able to respond clearly, but she seemed somewhat stable and I knew my mom could use a full night’s sleep. I decided to put ice on it and make her elevate her leg until my mom was up at 4am. I camped out on the floor in Shaina’s room until I heard Mom downstairs in the kitchen. By time she saw Shaina’s foot, it was even more bruised and swollen.  We got her dressed, wrapped her ankle in an Ace bandage, and made our way downtown.

As soon as Shaina’s liver doctor saw her, he said she needed to be admitted to the hospital. Though she was much more lucid that morning, he was concerned about her color, her recent confusion, and the fact that she fell in the middle of the night. Shaina was admitted for observation of hepatic encephalopathy. And a possible broken foot. When we were admitted, Shaina tried to sign and date her paperwork, like she always does. I sat beside her and watched my sister, one of the most eloquent writers I know, struggle to remember how to sign her own name. When I told her the date, she couldn’t remember how to write the number 2. It was hard to watch, heartbreaking actually. And it was even harder for her. She was totally frustrated, but lord knows she wouldn’t let me help. I took it as a good sign that she at least still had her strong will. It’s that determination that has gotten her this far, after all.

Shaina gets a cast

The first x-ray of her foot did not show any fractures. They wrapped her foot in a soft splint and told her not to put any weight on it, but it was killing her. A day or two later, however, they did a CT scan, and found a Lisfranc fracture in the bones on top of her foot. This was a break that was usually fixed with surgery, according to the orthopedic surgeon, but he did not want to perform surgery on Shaina because she was a high risk for infection and because he didn’t want to expose her to unnecessary sedation that could worsen her encephalopathy. Instead, they fitted Shaina for a cast that would have to stay on for 6 – 8 weeks. She is not allowed to walk or put any pressure on her foot.

While in the hospital, they also discovered that her Prograf level was way too high, which could be contributing to her encephalopathy. And she has several infections, which they are now treating with antibiotics. All of this in addition to getting her blood sugar under control (more on that in the next post) and lowering her pain medicines seem to have improved her mental state. She has had brief bouts of fogginess, but for the time being, she appears to have her mind back.

Getting up to speed

My sister Shaina is 28 years old. She was diagnosed with several chronic diseases at age 12, the primary diseases being Autoimmune Hepatitis and Primary Sclerosing Cholangitis, both of which affect her liver.

Our entire childhood was spent in Charlotte, North Carolina, most of which was happy and healthy. We spent family vacations in beautiful places like Maui, Laguna Niguel, Japan, and our grandparent's condo in Myrtle Beach. Shaina always said that she was going to be a Hollywood actress when she grew up. She attended an arts magnet school in middle school where she studied drama and dance. She said she would have a lot of babies, because she loved kids, and they loved her.

But as high school dragged on, Shaina got sicker. Eventually a tutor had to come to the house to help her graduate high school. She missed the graduation ceremony, but Mom had a party anyway and made her wear her cap and gown for pictures with the family in the living room. By this time, I was a college sophomore living in Raleigh, NC. I was able to come home many weekends and whenever Shaina was admitted to the hospital. The stress on our family was overwhelming, but we had no idea what the next several years would entail. We thought she would get a transplant and be the happy, healthy Shaina of her childhood.

By her senior year, enough damage had been caused to Shaina's liver that she needed a transplant. My parents searched for the best liver transplant program in the country. Soon after Shaina's graduation, they sold the dream home that they had built two years before and moved with my sister, brother, and two dogs to Dallas, Texas to be closer to Baylor University Medical Center. Shaina received her first two liver transplants at age 19. The first liver never took, and Shaina spent a horrific six weeks in the hospital, undergoing dozens of surgeries that came along with the complications of an unsuccessful transplant. After a bumpy start, the second liver worked like a dream. It lasted for three wonderful years until there was a thrombosis that cut off the main blood supply to her liver. This resulted in infection that landed Shaina in the hospital for the next 5 months, while she waited for a new liver. It was a trying time, to say the least.

Shaina in the hospital

Shaina's third transplant took place on November 6, 2005. She has had several major complications along the way, and half of her liver was lost due to thrombosis of the right portal vein when her blood thinners were mistakenly held for a procedure. But in traditional Shaina spirit, she kept trucking along, fighting through infections and complications, attempting to live a somewhat normal life.

Several months ago, Shaina was diagnosed with a severe enterovirus that, because of the immunosuppression she was on to keep her autoimmune disease under control, spread to every part of her body: skin, blood, brain, organs, etc. With no precedence for treating an enterovirus this severe, her infectious diseases doctor decided to try massive and extended doses of IVIG therapy, along with a healthy dose of crossed fingers. During part of this time, when the virus was at its worst, Shaina was hospitalized. The doctor who heads the liver transplant program came to see Shaina when I was there with my brother, David (a rare moment when we had convinced my mom to leave the hospital). He told Shaina that this virus would kill her. The only hope for getting rid of the virus was to lower Shaina's immunosuppression while trying the IVIG therapy. This was a problem because if they lowered Shaina's immunosuppression, her autoimmune disease would kill her liver. But this was her only shot. They would lower Shaina's immunosuppression, give her IVIG, and when the virus was gone, re-list her for a fourth transplant to get her a new liver.  Fourth transplants are rare, anywhere in the world. And we did not know if the IVIG would actually work on the virus. But this was the only way to save Shaina. So it was done. And the IVIG seemed to work. After almost a year, her cultures came back negative, meaning the virus was gone. The head of the program took Shaina's case to the transplant ethics board and she was approved for a fourth transplant. But then, the enterovirus came back. Thankfully, the infectious diseases doctor caught it early and, after another round of IVIG, the cultures came back negative again and it hasn't returned. Which brings us to the last couple of weeks...