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Friday, November 9, 2018

Wednesday, April 11, 2018

Wanted: My Perfect Match


Wanted: My Perfect Match

At 26, I wait and pine for someone I’ve never met; my perfect match. With any luck, someone on the shorter side, with a petite frame similar to mine. I am not picky about gender, but I hope he or she is kindhearted and that some of their goodness will permeate into me. I can be overly stoic and independent—some might even say a little cold and elitist. I don’t try to be, but years of hurdles have made me so. I have standards that can be hard to meet. Sadly, I’ve been through this agonizing wait once before, and after finding what I hoped was my perfect match once, I believed that I would never have to go through this search and torturing wait again. I would never have chosen to put myself through such suffering a second time.

When I was 19, for six months I lay in bed wrapped in my heavy Pottery Barn cornflower blue comforter with red flowers stitched into it, hoping that profound love—through a selfless act by someone I’ve never met—would save my life in time. Mostly I slept through life, with my two dogs, Max and Pazzo, always nestled close to me. They were the truest form of love I had ever known. They stayed by my side, all twenty pounds of them combined—in my bed, or outside the shower as I sat on the wet white plastic floor—while warm water and salty tears simultaneously dripped off me. And under my feet if I momentarily could muster sitting at my desk to scan a few emails in my attempt to stay connected to the outside world.

On a good day, I would watch Law & Order marathons in my dim bedroom between napping. These perfect wrapped in a bow start to finish stories were a wonderful distraction. On a good day, I fought back tears that allowed me to remember I was human and actually alive. On a bad day, I did nothing while I waited. I barely even opened my eyes to the world. I didn’t care to see my surroundings. I didn’t care to see what I was missing or possibly losing.  

It all sounds like a normal story: a young girl moping around, spending her life waiting for her perfect match to complete her. But my story is actually not very typical. I was not waiting for the great love of my life. Instead, I was waiting for my perfect match in an organ donor because my lungs were failing me. I needed a match in size, blood type, tissue type; not a match in physical chemistry, or personality. I wasn’t looking to fulfill some little girls’ checklist of love. I wasn’t looking for someone with dark intense eyes, a high intellectual capacity, or a certain amount of money. I was looking for a healthy person with perfect lungs that would soon breathe inside my chest and keep me alive.

As I waited on the lung transplant list at Columbia Presbyterian, my mom was my best friend. Anything I was capable of doing she did with me. Anything I was not capable of doing she did for me. We were the ultimate pair. She wished more than I did that my perfect match was coming. She prayed and yearned harder than I did. Her life depended on it just as much as mine. She was not living the normal mothers dream either—wishing for a perfect man to come sweep her only daughter off her feet. She was praying that our phone would ring telling us a donor match had finally been found after years of lingering between death and life.

And for a while, it seemed like our prayers had been answered when my perfect lung donor match came into my life on November 12th 2003. He was a young athletic male. That was the extent of what I knew about him. But his lungs gave me a normal lung capacity for the first time ever. I had a lung function of 100%. I’d been struggling to breathe my entire life, on a continual quest for air. I became a normal person almost overnight thanks to my seemingly perfect match. I could breathe.  

My first donor was my soul mate in life. We had the perfect relationship for five years. We got along famously. We rarely ever fought—only once, a month after my transplant, I had a minor episode of rejection that was quickly taken care of. Because of him, I was able to go back to college. I could walk to my classes without stopping to sit and catch my breath. Previous to finding him, I would stop and sit on any bench I walked by and pretend to look at my phone when I was really waiting for my lungs to catch their breath and my heart to slow down. I didn’t have to take the elevator up to my first floor door room anymore and worry that people crammed in there with me just thought I was being lazy. I could go out with friends. I wasn’t trying to conceal an IV ball with antibiotics pumping through me while trying to decide between a, b, c, or d on an exam. I didn’t have an oxygen tube fixed to my face and a tank dragging behind me. I graduated college. And best of all I could laugh without laboring to breath. I could cry without a coughing fit. I was normal—which is all I ever wanted to be.

And then, five years into our harmonious union, something fatal happened. My chest felt tight. My lungs felt restricted. I was short of breath. I knew something wasn’t right. Initially when I was going through the transplant listing process at 16 I thought the only way this would be worth it was if I got at least 10 years more out of having a transplant. I needed ten good years. But my body had other plans. It reflexively craved the DNA of my old horrible lungs. It very quickly started rejecting my donor lungs. And swiftly they started to fail. It was a horrible and terrifying breakup. I lost lung function with each month that went by free falling to death again. The oxygen machines returned. The feeding tube I fought for most of my life eventually came when my 5’2” frame got down to 55 lbs. My once perfect lung match that ironically allowed me to think about everything else in life but them, no longer worked well enough to allow me to support my own weight. I had to start using a wheelchair, or worse be carried. My lungs occupied my every thought once again.

My doctors told me that if I wanted to live I would have to go back on the transplant list and undergo a second double lung transplant. Did a second match exist for me? Could I wait again? I wasn’t sure it was possible to love another the same way I loved my first lungs. Would any other love be as good as my first?

Here I was, nine years after my first lung transplant, in the same devastating scenario. This time my wait for a second donor match seemed crueler and longer than my first. And it was. I had been through this before and I knew what to expect, but knowing what was coming made it worse. I had experienced living for the first time and that had been taken away. I knew what it was like to suffocate every day and that was coming again.

My donor gave me a life I had never experienced or even dreamed of—seeing life through him was incredible. The last three years we had together, while I had chronic rejection, was a slow and painfully heartbreaking time. It was hard to admit our time was over. I was in denial for as long as possible. I kept thinking we could make this work somehow that by some miracle we could mend things. But it was time for me to move on. If I wanted to live I had to be dramatic and drastic—I had to cut him out of my life. Literally. 

I waited fourteen months for my second transplant; couch bound this time, my criteria the same as the first. I was not very picky; in fact, I was probably more accepting this time. I was even willing to take a former smoker into my life, this idea would have made me cringe the first time around, I would not have even considered it. I wavered a lot during this time period. I feared I would never find a match. I was in one sense scared enough to almost be hopeless, paralyzed with panic, but in another sense hopeful to return to breathing.

On February 15th, 2012 I got a call saying a donor match was found, after 4 false alarms and little life left I had my second transplant. It was hard to let go of my first pair of lungs. It was like any breakup – letting go was painful. The same surgeon who performed my first transplant also performed my second. It took him over ten hours to get all remnants of my first lungs out. I guess it was hard for both of us to let go. Any complicated breakup leaves scar tissue behind. My second pair of lungs came from a very young girl, and I have high hopes we will be together for a long time.

Now at age 31 I can grasp the enormity of both my miracle matches, and the reality of what I have been though, better than I ever have. I understand what they have both given me. I love my donors; both of them. It is a special unparalleled kind of love I feel—a rare eternal unwavering love that I can’t really compare to anything else. I love my donor families—on the worst day of their lives, they let go of someone they loved very much in order to give life to someone else. I know what it is to have a soulmate inside me. My donors have both melded into my body, connected quite plainly to my heart, and into my life forever. Love has saved my life time and time again.

I cherish the gift that has been given to me twice. I can only pray this pairing lasts as long as possible. I will continue to live with the thought that miracles happen and that love saves lives—because it does.
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Thursday, March 15, 2018

Chicken and Gnocchi

This is kind of a twist on chicken pot pie and chicken and dumplings. I posted it on Instagram and it seemed like a lot of you wanted the recipe. Plus it's SUPER easy. It takes about 25 minutes.

First, cook one medium chicken breast in the oven - then shred it with two forks. Or use leftover rotisserie chicken.

Ingredients
2 tablespoons of butter
some garlic minced, I used half a clove
3 small carrots, peeled and cut up
3 celery stalks, cut up
Peas
2 tablespoons of flour
2 cups of chicken broth
1/2 cup of milk
*I also used a few splashes of heavy cream!
Salt/Pepper to taste
Shredded Chicken.
Fresh made gnocchi (that I bought at Whole Foods)

Here is the thing about this recipe, you can sub whatever veggies you really want. I didn't use onion, but you can. I didn't use potatoes, since I used gnocchi) but you could. I didn't use corn but you can - really make it whatever you like.

First in a small sauce pan saute all your veggies in the butter. Saute them until they are as tender as YOU like them. I like veggies a little more al dente so I did about SEVEN minutes on medium high heat, while stirring.

Second add your flour and stir to coat quickly - do not let the flour burn. Start to boil some water if you are going to add gnocchi

Third add the chicken broth, milk, cream if you have it, and salt and pepper. Turn the heat down and let it simmer, it will thicken pretty quickly. Fourth add the chicken.

Now you can add your gnocchi. And you are done! Add more salt and pepper as needed.

Delicious.




Wednesday, June 7, 2017

Mutations and Mom


--> Today I have an appointment at the cystic fibrosis clinic in the hospital where I had my lung transplant. I haven’t been to a CF clinic in at least ten years. And previous to transplant I only had one CF doctor my entire life, from my diagnosis to his death. Dr. Thomas Doland at Yale. He died shortly after my transplant. And I never saw a need to find anyone else. I belonged to my transplant team at that point. The interesting thing about having a lung transplant is that, for me at least, you sort of leave the CF camp and move to the transplant camp. Of course, I still have CF, and of course it still affects so many things, but my lungs no longer have CF, so it kind of eliminates the need to be followed continuously by a CF doctor I guess. Instead of seeing a CF doctor, I see my transplant doctor and a million other specialists—sinus ENT, ear ENT, cardiologist, several endocrinologist, kidney specialist, gastroenterologist, infectious disease and many more I can’t even think about. The roster is long—each doctor taking care of their specific organ.

But now my ear has really brought CF to the forefront again. There are several reasons I can’t get rid of this infection, but there is only one reason I got the infection to begin with, and that is cystic fibrosis. The pesky dumb aggressive little bacteria that is in my ear is pretty much a bacteria you can only grow if you have CF, a healthy person could lather in it; it wouldn’t do any harm. It’s the same bacteria that ate away at my CF lungs time and time again. And it’s the same bacteria that like to wreak havoc in my sinuses, and then found its way into my ear. But the point being CF has again found a way to rule my world, even though transplant is supposed to somewhat alleviate that from being the case, and trust me it did, I’ve been on IV medications, a rotation of three different antibiotics and one antifungal since December 19th. I’m over it. And like all my ENTs like to say: we can’t transplant your _____ fill in the blank with ENT things. We have all done everything we can but we need a forever solution.

Since my transplant there have been a lot of advancement in medications that target the actual problem with CF—we can’t transport fluids and sodium properly in and out of our cells. This is something your body needs to do to be a normal functioning healthy person. There are two medications available now that try and correct the actual defect in the protein that causes the problem. My lungs don’t have CF so in essence I wouldn’t really benefit from a cure for CF, I now need a cure for transplant rejection—this is now my terminal disease. I hope this makes sense. So back to the ear problem that has led me here! These two medications Kalydeco and Orkambi COULD help my ear! So a few weeks ago my genius sinus surgeon told me he has seen big improvements in the sinuses of CF patients on these medications. I told him I didn’t even know what my mutations were.

So here I am a mixed jumble of emotions. I know I have a genetic disease. But it’s a different thing to actually find out specifically what mutations I have in my gene. I am entering back into a world that I haven’t been to in so long, even though I suppose it’s been there in the background the entire time. There are a lot of mutations and a big chance I don't have the right one, of course I’m scared of disappointment here. But this is the way medicine is headed and it’s thrilling to be honest, even if it doesn’t exactly mean a cure for my own lungs and me. The drug pipeline is exciting (https://www.cff.org/trials/pipeline)

There is more to it though and I’ve been trying to understand why I am SO emotional about this experience. And it’s because I got these CF mutations from my parents—neither of them alive anymore, neither of them with me. My mom should be with me for this. She should be sitting with me in the exam room like she always was before she died. I’ve never even seen a CF doctor without her and this is bringing it all back, everything we went through together my entire life. And it’s a visceral punch to my stomach. At the end of the day this loss is always circling me. The progression of life, these sorts of milestones, will always make the big losses slowly burn again, the ache roaring back. But I have to keep going and I have to keep facing these things and luckily I don't do it alone.  

Sunday, May 14, 2017

Dear Mom

Dear Mom,

Mother’s Day is the hardest day of the year for me. It’s the biggest reminder of how desperately I wish you were here. I miss you every day but I guess today is different because I get to glimpse purposefully inside so many other daughters being with their moms and I don’t get to do that anymore.

I remember so vividly the gift I gave you on your last Mother’s Day—it was a picture of me as a kid, maybe 3, in a bathing suit and laughing by our pool. I was so happy in the photo, that was why I picked it—just a kid being happy, not a kid being sick. And on the photo in black sharpie I wrote I love you. You kept it on your nightstand.

I wish I had gotten to know you as an adult. I wish we had been able to grow together as I became me. I’m a different person than when you died. Your death made me a different person—kind, generous, more selfless and less selfish. It also made me more timid and more fearful. It changed completely who I was. I wish I were this person when you were alive. I was in my early 20’s, self-absorbed, and maybe even bitter because of my illness. I’m sure I didn’t listen to anything you said or treat you the best. I’m sure I said things I didn’t mean. I'm sorry. But no matter what I couldn’t function normally without you—you were my first call of the day and my last call of the night and several calls in between. And I still can’t functional normally without you. So much so that I mostly stopped talking on the phone after you died. I can’t stand that the other person on the end of the line is never going to be you again. I still scroll through the last text messages you sent me—the last communication we ever had over technology.  

I can’t believe the things I’m experiencing without you. It hurts my heart that I went to South Africa without you. Or that I spent the day on the Shark Tank set without you, because Robert would have loved you. As everyone did. He would have made a deal with you for something! You were dynamic, intoxicating, strong, powerful, smart and beautiful. You never took no for an answer and you were easy to admire. You lit up any room you were in. You were everything I hoped I would turn out to be.

Saying that I miss you just doesn’t seem right because it is so much more than that. I feel so incomplete without you. My heartbreaks for the things I never saw you accomplish, I’m always thinking how food has taken off so much now and you would be running circles around todays best restaurateurs.

Since I was little our thing always was saying to one another "I love you to the moon and back". And mom today I love you to heaven and back. 


 

Thursday, April 20, 2017

loss and adapting

Prince William inspired me to write on this blog again. Please read this quote for context:

The prince, 34, who was 15 when his mother Princess Diana died in Paris, said: “The shock is the biggest thing, and I still feel it 20 years later about my mother.
“People think shock can’t last that long, but it does. It’s such an unbelievably big moment in your life and it never leaves you, you just learn to deal with it.”

I’ve written a few posts in the past few weeks but they are bone stabbing kind of deep. I don’t think they are ready for the Internet yet. But I think this is medium deep, haha! So it seems more appropriate. I watched this interview today with Prince William talking about the death of his mother—I bet we all remember this day. It made me realize more people experience the same losses as our own than we probably care to understand. It’s easy to think we are the only one that may have gone through a particular thing. But loss is universal, and the loss of a parent at a young age does actually happen to lots of other people. And it also does happen to other chronically ill people. I’m not the only person with CF to lose their mom to cancer. The thing is it’s all tragic of course, but it’s a punch in the gut on top of 100 other punches. What else can you do besides take it?

But the loss of a parent, especially a mother, is unlike anything else. It’s not like losing anyone else in your life. I came into this world attached to only one person, by an umbilical cord, by months together, by experiences in the past and promises of the future, and I felt it all violently ripped away from me when she wasn’t here anymore. (I am not diminishing people raised by someone other than their birth mom.)   

I think people assume I lost my mom so many years ago it must be behind me. And it's not. I don't talk about it with too many people but I'm still gutted by it every day. There are so many things that happen every day that compound her loss, from tiny to monumental, from crisis to joy. I've just learned to live my life with this gaping hole. And it's okay. You learn to adapt. That's what life is mostly about—adapting to anything that comes at you. The only real way to survive in almost any capacity is to adapt. And adapting doesn’t mean that things can go back to the way they used to be. It just means learning to move forward in a new way, in a new vehicle, or on a new path. And if you are lucky enough you have people that will follow along side of you.

Monday, February 8, 2016

breathing space

need some breathing space
off to napa I go...
but aren't these pictures from the friday snow fall amazing?