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.

pumpkins

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:

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!

https://mondelez.promo.eprize.com/triscuit/

This is what my entry looks like

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 4^th or 5^th 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!

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!

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

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!