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!

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….

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. 

 

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

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!

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. 

Proscuitto

Ricotta gnocchi with duck sausage, ramps and roasted tomatoes

Classic - spaghetti and meatballs.

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