Wednesday, November 12, 2014

Thank you first lungs

Today in 2003 I got the call for my first lung transplant. I never could have imagined what it was like to breathe like a normal person. Those lungs were seriously perfection. I can't even explain it to most of you because most of you who read this breathe like that every day on your own. Well that was how those lungs made me feel. Normal. They allowed my mom to see me live life and not struggle to breathe for the first time in 18 years. I thank my first donor family so much for that. It was a true miracle. For years I got to be pretty much a normal person. Don't take normality for granted. I am so sorry to I had to say good bye to those lungs, but they allowed me to live so much life. I am thankful every day. And I think if them and my first donor family often. And all of those people that supported me and helped me to get there. And mostly I think of my mom today and our journey together.

Monday, October 13, 2014


Fall is my absolute favorite. Not only has it always been the easiest air for me to breath, but I love the changing leaves, everything apple, especially cider and it is the official start of the holiday season to me. I have always loved to decorate pumpkins. The past few years I have gone non traditional with gold leaf and metallic spray paint. This year I wanted to make pumpkins that I could use every year. I purchased craft pumpkins and had the idea to paint them and embellish them. I scoped out the Martha Stewart craft paints and the paper embellishment aisle at Michaels and decided what would pair well together. I came up with three combinations: black/white, gray/glass, white/red:

Thursday, September 18, 2014

A health update

Last time I updated you all I had some lung rejection going on, which very thankfully has been cleared up! Best news ever! This of course made me nervous - so far with these second lungs I have been rejection free and this prompted a lot of memories and fears, naturally! What prompted the lung biopsy was chest/back pain and a low grade fever. This started a month ago. We have been searching for a diagnosis which has included a lot of time in NY, a lot of time at my local hospital with many many scans and test, and even an emergency gallbladder surgery (when on a nuclear scan searching for a reason for my pain it showed my gallbladder was not working.) No one really was sure that removing the gallbladder would stop the pain and fevers I am feeling. Sadly it did not. It's been a drag feeling unwell for this long. It messed with your mental state to have a fever every day and all over chest pain with no answers. It also is even harder because it's chest related, which is in the area of my precious lungs.

I've been home a lot this month not doing a great deal. I will feel fine, then the fever hits me and all my joints hurt. My chest almost constantly (breast bone, and under my breasts, radiating all over my chest) feels like it is there is something bearing down on my lungs, the pain moves, the compression moves around but is always there, it's very strange. It's a feeling that signals a lot of worry to me. It is worse when I lay down, so it keeps me up too. I'm mentioning all these symptoms in case anyone reading this goes: AHA! I know what this is! I've had several echos, ekgs, ct scans, abdominal scans, ultrasounds, blood work....all clean, so Monday I will get a PET scan to check for a hidden infection or PTLD. I google a million times what might be going on and I have to believe there is an infection in my lungs, heart, or chest bones that is causing this and hopefully one of those things comes up on the PET scan and we have an answer! And then can find the right treatment.

Soon I hope to be posting about food, restaurants and some awesome vacation (this thought is keeping me sane.)

Thanks for listening!

Oh I should mention I am a finalist in a challenge to meet Martha Stewart (I have deeply admired her forever!) I worked really hard for a month submitting countless recipes. It gave me a mission while I wasn't really feeling great, which was good for me. If you have the time please go vote (voting is every day until October first.) Please register and after you do it takes one second to vote every day!

This is what my entry looks like

Wednesday, August 13, 2014

Oh hey, remember that time I met Mario Batali

People keep telling me I should blog about this story. Although I do write this blog and am on all social media, I am very private. I know! This started really as a way to keep people connected when I was really sick and it was too hard for me to talk on the phone and I was even too tired to text so many people.

Most people know I don’t play the lung card, ever. I actually never even tell people I’ve had two transplants or have cystic fibrosis. It’s not that I am ashamed of it, but I hate being the center of attention! It’s my biggest fear! Oh yes, wait I am working on a memoir. Well, everyone contradicts themselves sometimes! The only time I ever played the lung card is when I met Michael Jackson through Make A Wish. And that took me years! I tried every other way possible (for 8 years) to meet the most famous person on the planet. And I, nor anyone that had any degree of separation from Michael Jackson could make it happen. Everyone tried. Michael was my bright light when I couldn’t breathe. I can’t explain it to someone that has not been through it, but sometimes family and friends who love you more than life cannot lift your sprits as much as someone you don’t even know. Michael helped keep me alive. Finally as my last resort when I was 18 I reached out to Make A Wish and asked to spend the day with Michael at his Neverland Ranch. They even pushed me to pick something else but I did not give up. I don’t share that experience a lot, but everyone that knows me knows how special and life saving it was for me. Once in a while just the presence of someone can help heal your insides. I needed that day. I needed his brightness. And I am so lucky to have experienced him.  

I don’t seek out to meet famous people. Michael was special. Michael is special. It’s true I have an unexplainable thing for Martha Stewart – not the prim and proper, but the funny unexpected Martha. I also have a really easily explainable thing for Mario Batali and his food. I spend a lot of time in Manhattan – this is where I’ve had both of my lung transplants and my team is there, so I’ve eaten at all of his restaurants. All of you know how much I love food and how happy it makes me. All of you know I was raised by a restaurateur who passed away 7 years ago. And food is one of those things that didn’t die with her. I eat the best food I can in order to still have food experiences that transcend losing her. I can go on and on about Mario’s pasta, I can tell you any dish I’ve ever had at any of his restaurants. I liked him before he was The Chew famous. I knew who he was way back in the day from being raised in food culture.

Mario is big on twitter. And back when my lungs were turning two, I wanted to do something really special to celebrate. Since my second transplant I’ve done as much as I can to experience everything I can. Life is infinitesimal. I’m generally not afraid to ask for anything. The worst anyone can ever tell you is no, or ignore you, that is worse actually. So I set out on what I called the Mario Mission to meet him at one of his restaurants to celebrate my lungs turning two. Someone asked me how I was going to celebrate and I replied: Mario Batali is going to cook for me. And they laughed. Oh, those small dreamers! I reached out on twitter because that is his big platform and I told myself I would tweet him (also known as annoy him) for 30 days before I would give it a rest. Well, on the 4th or 5th day he tweeted me back and told me to come on in! He would meet me! I have a pretty relaxed personality, very rarely do I get worked up either way, but the excitement in my house that day was high! We arranged a day and which restaurant I would come to and what time and he “would be there!”

My drive to Manhattan was anxiety ridden to say the least. My friend, Aly, who as you guys following on a regular basis know, lives in Manhattan. She met me at my hotel and we had a pre drink – you know nothing eases your nerves like a mini bar vodka. And maybe we had a few more pre drinks at a bar near Babbo.

I didn’t really know if he would show up. Not because I think he doesn’t follow through, but because I am familiar with how busy he MUST be. He must have a hundred things to do in any given day and I am just some person he doesn’t know that wants to celebrate my life by eating at Babbo and maybe having a face-to-face conversation. Wanting to meet Mario is not about aspiring to be Mario, wanting to cook, open a restaurant, or any of the reasons many might want to meet him. I wanted to meet Mario because Mario knows food. Mario, from what I can see observing on the outside, experiences life to the max and appreciates food to the max. I was taught something similar from my mom, who lived life to the fullest (cliché sorry) even with a sick child like me. We always loved life even when it was not easy. My mom allowed me to experience so many amazing things: many that included the greatest food and wine. I think Mario lives along the same vein. I think that is pretty cool. And I wanted to meet someone who shares the same life philosophy and also happens to be a rockstar in the kitchen.

When we walked in and I said my name to the hostess I knew immediately the staff knew who I was and that Mario was coming. I could feel it in the way they talked to me. They sat us at a special table in the back, where other people might not notice Mario or bother him. They were extra attentive. Now I was nervous! So we did what anyone would do and ordered a bottle of wine ASAP. The staff was so nice to us. We ordered our food and special goodies started coming out. I think at this point I was likely sweating from anxiety. Aly can talk to a wall, but I had this sneaking suspicion when he came to our table Aly was going to be silent for the first time ever. And yes this did happen!

I am going to make a long story short and say after our appetizers arrived Mario came over to our table and introduced himself. He chatted momentarily with us before leaving to let us eat our food and then seemed to get pulled away to one of the many other things he had to do that night. I can’t tell you the power of someone saying they are going to show up and then they do. There are a lot of people in real life that don’t do that. And here a very famous busy guy, that didn’t know me and said he would stop by to say hello via twitter did. Saying you are going to do something and doing it is very powerful. People can say what they want about Mario Batali but he did a very upstanding thing for me that puts and keeps him in a special category of ultra cool people.

In the end, sometimes a little outside inspiration can be life changing. Sadly it’s not always the biggest people in your life that can push you forward during a bad time or a hard day. But it is so important to find what that is for you (even those without a crazy disease) and to ask for help however you can. Most of the time people are willing to be helpful and even make your dreams come true! You would be surprised! 

And thanks again Mario!

Tuesday, August 12, 2014

oh, rejection always hurts!

I wanted to update you guys on my chest/back pain and consequent lung biopsy last week. I have some airway rejection going on inside my lungs. And I thank my body for sending off an alert sign to me so that we had a reason to go in and do a biopsy. I am starting treatment today of high dose prednisone (a medication I take everyday and will forever, but at a much much much higher dose than usual.) This should take care of the inflammation/rejection. Yes, of course this freaks me out. I haven't had an episode of rejection with these lungs yet and was hoping for a long long course of none of this, considering chronic rejection destroyed my last lungs. This is not chronic, but yes every case of any rejection makes chronic more plausible. However, this is a very very low grade and should be just a page in a very long book. 

So here is to my first day on 60 mg of prednisone, which will make me a crazy person for the rest of the month!

Monday, August 11, 2014

beauty and essex

as you all know last Thursday I had a lung biopsy. I had to go into Manhattan the night before because my surgery time was early. It's always really nice to make a fun night, with a good meal and a fun hotel, before hospital procedures. My friend Aly had mentioned to me on several occasions that she had to take my to this restaurant in the lower east side called beauty and essex because they have mini food, and I have a big affinity for any tiny food item. But it's hard to get a reservation and sadly it had eluded me. But Wednesday night when I was looking at opentable, they had many openings!

here is everything I ate, and I recommend any of you in NYC to go for a fun night out! It's a secret restaurant in back of a little store, so don't be alarmed when you walk in and think "where is the restaurant?" just walk through the door and you'll enter in a very cool huge space filled with people and lovely food!

Love a good snack tray in a hotel room!
taco wonton

crispy onions, roast beef on pretzel bread

tomato soup with a cheese dumping - amazing

tempura fried lobster

tomato confit with quail eggs

cucumber soup
devil layer cake with milk ice cream

the most amazing nutella donuts

Tuesday, August 5, 2014

a hiccup

As you guys know I was supposed to be having much needed and long awaited sinus surgery tomorrow. Well I had to postpone it. Big bummer. I've been having some chest and back pain that got really severe on Sunday. ER trip included. My chest x-ray, EKG, and CT scan ruled out any heart problems, or blood clots. But since it's in the lung area I have to go Thursday for a lung biopsy. I had one scheduled for next week anyway as a yearly thing, but it's wise to do it sooner and make sure there is not any rejection or infection going on. And this totally puts the sinuses to the side now. I've been health issue free for about a year now, so this kind of knocks you back to reality that anything can go wrong at anytime--which is the scary harsh reality of chronic illness. I should at least have rejection results on Friday, and I will be sure to keep you guys in the loop! Thanks in advance for your positive thoughts!

Tuesday, July 29, 2014

july clinic visit

I had a check up with my transplant team in Manhattan yesterday. I go about every three months now. Most people would find this exciting, but it’s also kind of nerve wracking. I like to be checked out a little more often. But it is nice too! Be careful what you wish for, I know!

What can I report to you? I’ve gained some weight. I know when they all say: YOU LOOK SO HEALTHY! That is code for: you gained a few pounds Natasha! It’s okay…everyone I crossed passed with also told me shoes were fantastic so it all evens out! ; )

My lungs are looking good. My sinuses have been giving me problems all year and I finally go in for sinus surgery next week, which is not something I am thrilled over. I know I’ll be in pain. I’ll be at MGH, a hospital where I am not followed at, and no one really “knows” me. But after the past month of unreal headaches I am looking forward to it a little bit! Hopefully it resolves the insane head pain and I won’t be counting a fifth sinus infection since they seem to be coming fast and furious now.

My lung function is stable. My kidneys are stable. All jump up and down good news! I don’t want any new organs anytime soon; I’m pretty content with the ones I have.  

I go in next Wednesday so I’ll be reporting back soon, hopefully nice and drugged up! I can't be held responsible for any communication later next week!

Friday, July 11, 2014

how and why

I’ve focused a lot of my latest blog posts in the past year on what I’ve been doing in life – mainly eating and traveling. It is easy to forget that I’m only able to do those things because I’ve had two double lung transplants. The mind has a way of hiding traumatic events deep inside—everyone has as least one. But several times a day I think of the fact that I am breathing through someone else’s lungs—a gift of life that two separate families gave to me during their hardest moment. There are a lot of emotions that make me think about this: sadness, happiness, pain, humility, fear, gratitude and so on. It’s always good to have a center to bring you back to the world and mine just happens to be that my lungs are not my own. It is a scary wonderful miracle of a thing that helps me to move forward when I am stuck. Or helps me to be thankful when I am not. I think there may be this perfection that when you beat something (read: ANYTHING) that from the point of survival on you are always joyful and happy and thankful. That is not so. I have hard days and easy days. I have bright and dark—same as anyone. The point is there is always something to bring you back to why you are here and why you are continuing to fight. I heard this really great quote a few weeks ago: if you have a “why” you can get through any “how”. And I believe that is the truth. Your how may not be waiting for a lung transplant, but we all have something. And hopefully we all have a why….

Wednesday, May 21, 2014

ricotta gnocchi

I have made a lot of potato gnocchi, but a few weeks ago I had some really amazing ricotta gnocchi in manhattan and wanted to try and replicate it at home.  Honestly it is so much easier than potato gnocchi and I think even tastes better.  Even for those of you that do not like ricotta, you would not even know it is made from it!

Serves around 4
One 16-ounce container whole-milk ricotta
1 large egg
1/2 cup finely grated Parmesan  cheese
1/2 teaspoon salt 
1 cup flour

Combine all of these things together until well incorporated. Refrigerate for 15 minutes. You want the consistency to me not wet, yet not dry when you take it out and roll it into your typical gnocchi "log." It should be somewhat wet, but if it is sticking to your hands at all add a little more flour. 

Once you roll the dough into a log and cut your sections freeze them on a plate for about 15 minutes before you boil them.  When you boil them and they bob to the surface they are almost done, let then cook for another minute or so. 

Proceed to cook them in whatever sauce you desire in a saute pan. 


Wednesday, May 14, 2014

the future of junk food pop up

There is a pop up series going on called: The Future of Junk Food with chefs Samuel Monsour and Mark O'Leary. I didn't happen to catch the first one, but was able to make it to the second (at East by Northeast). The concept is to take the idea of junk food and elevate it with eclectic, local, better for you ingredients. 

Flamin' Hot Cheetos - Pig Ears, Uni, Lardo

Cheese Sticks - Robiola, English Peas, Morels

Uncrustables - Pancetta, Sicilian Pistachio, Rhubarb

Rangoons - Soft Shell Crab, Apricot, Mascarpone

Chalupa - Beef Cheeks, Radish, Ramps

Fried Chicken Dinner - Favas, Black Truffle, Marjoram

Chipwich - Fois Gras, Black Garlic, Cocoa Nib

Monday, May 12, 2014

mother's day

since my mom passed away I usually like to do something a little non traditional for mother's day - basically anything that doesn't remind me of it! This year my very long time friend Jess (who also lost her mom to breast cancer years before I did) decided to spend the day in Manhattan. 

Bolognese at dell'anima
Big Gay Ice Cream

These two pups meeting for the first time!
I love greenwhich village
Had to stop to bring home a cookie!

Tuesday, May 6, 2014

ny weekend - part 2 eating

obviously one of my favorite parts of spending any time in Manhattan is eating! I mentioned a while back that while in Napa for Pigs & Pinot, the chef/owner from Crispo made one of the best pasta dishes I've ever had. And Aly remembered me mentioning that and got us reservations when I went to visit her.

The food was great, very classic, and the atmosphere was stellar.  We sat in an area in the very back that almost seemed like you were outside - maybe they open it up for summer I am not sure. It was very very cool and delicious. 


Ricotta gnocchi with duck sausage, ramps and roasted tomatoes

Classic - spaghetti and meatballs.

Wednesday, April 30, 2014

ny weekend visit part 1 - the lungs part

I had a few things happening in Manhattan Saturday to Monday - spending time with Aly, a paint bridal event for Laurie, and my second annual lung transplant testing for my new lungs! This weekend included lots of eating too, that I will blog about later. I wanted to first write about lungs, since I actually don't share THAT much about that aspect of my life...

First I can't believe it's been two years since my second double lung transplant. Time flies! Monday I had to do the following tests: bone dentisy scan, chest CT scan, full PFT (pulmonary function test), the normal xray and blood work, a 6 minute walk, an EKG and an echo. It was a full day! 

My CT scan looked really good. This always makes me nervous because in my 5th year of my first lungs all of a sudden I had spots all of my lungs in a CT scan, and then sort of started my downward spiral. But this one looked really good!  I wish I had a picture to show you guys. I forgot to capture this.

My 6 minute walk seemed good. It's much easier to do this without the aid of oxygen. I hadn't done this test yet with these lungs so there really is no base line - this is my base line. I can't tell you if I did better or worse than last year. But it did kill my leg muscles. Eleven years of all the medication I take and my muscles are pretty sad. 

My EKG looked good! The heart is still pumping! We are trying to figure out why I'm having serious palpitations at night even with the aid of two heart medications. We'll figure it out eventually!

My PFTs are pretty normal.  My lungs are at around 80% function - which is not where my first lungs were, but it's still great and I've learned to be okay with this after much internal conflict and anxiety. My lungs feel pretty good most of the time and this is what matters.  

The only test that came back that was really concerning to my team was my bone density scan. Just a quick explanation that I've had "bad" bones forever, this is a complication of CF and transplant and transplant medications, but since the last time I had a scan - likely 4 years ago, my hip bones in particular have drastically taken a turn for the worst. I am being set up to see the bone team there. I always have really bad lower back pain, but to be honest I just assumed it was a side effect of my life (i.e CF, meds, transplant) and never complain or say anything about it. It can get really severe too. I probably should have mentioned this years ago but alas we will figure this out too. 

So all in all the lungs look good. There is always something happening. This is transplant life. Besides the bones we are still trying to figure out if my stomach wrap has come undone and I'll go back for another test in a few months, but seriously I am breathing. Transplant is trading one disease for another. They don't give you lungs and set you free and everything is like a normal person. I still have CF, I still have a lot of problems, but the most important thing is they are all manageable. And so far I've come up against nothing I could not handle. But I hope this is a message for those of you that are healthy - literally something is always going on in the body of someone who has had a transplant and rarely will you hear one of us complain about it (like many other illnesses). Please think about that when you evaluate your own life and how lucky you probably are and how thankful you should be for your healthy specifically. I'm so very thankful for all of you that have followed and supported me along the way! I wouldn't be able to do it without you guys!

82% lung function - looking good!

They are filming at Columbia! Duck for cover!

A sweet message from Dylan's Candy Bar - my favorite