Transplant Video

Thank you to the The Transplant Forum for putting this video together!

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!

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

       

A check up week...

Yesterday I had my usual once a month check up and all things are staying stable.  I have a sinus infection, boo, which I am on antibiotics for but other than that no real news.  Just more waiting.  And more waiting...I suppose no news is good news.

I did stop and get my nails done on the way there, which is a nice little treat that I try to do every time I go for a check up (as well as a nice dinner out on the way back, is usually the ritual.)

A check up week...

This week I had a check up in nyc.  I had a check up with my surgeon from my abscess drainage and all things are a-okay there! And my usual pulmonary function tests, x ray, blood work, chat with my transplant doc...My lung function is holding stable at 22%, which is good news, but also bad news since it keeps me hanging at the same place on the list (aka, I'm not getting sicker fast enough to move up) but it's also good I'm not sicker.  My weight is at 83 lbs which is super! But the visit was a discouraging to me, because well the two people that are my size and my blood type are still ahead of me, and they have been there for months and months and months, so that likely means lungs aren't coming this summer, and that really crushed me.  They will more likely come in the fall or even winter (unless something miraculous happens and those two girls get lungs or more donors come -- my doctor says there has been a donor drought, sadly.)  I'm just so tired of being tired and sleeping half the day away and missing out on things, and I have a time line in my head -- lungs in summer means vacation in fall (I need one more than you know) singing up for that metal smith class in the fall, buying fall clothes in normal adult sizes, etc etc.  So my time line keeps getting moved further and further out.  Wednesday I had a little pity party for myself, but got a very nice email from my friend Judy (who went with my Tuesday) that lungs will come when they are meant to come.  And I got really good advice from my friend Jess who said: let yourself be sad, you can! And it's true I'm allowed to be discouraged and sad, so I cried a lot on Wednesday and then by Thursday I was over it.  I didn't confide in many people that I was sad, Laura was in Vegas and I didn't want to bother her, and Lindsey is coming off a great birthday week and I didn't want to be a downer, well at least not until we went to the movies next week and then I could cry to her in person, hahaha.  But I know lungs will come when they are supposed to, and I know that plans will happen when they are meant to, vacations aren't going anywhere, metal smith classes will come again in January, clothes will always be there waiting for me to buy them, and my friends I know will wait for me to be the healthy Natasha again, I know they aren't going anywhere and hopefully they aren't tired of me yet being 112 years old when I hang out with them...

I needed some retail therapy after Tuesday and I found the perfect thing, this weekend it will be two years that Michael Jackson has passed and a huge auction of his stuff is happening -- I am eying a pair of sunglasses of his that I can wear!  

Transplant Tuesday

So I had my every 3 week check in yesterday and I really have nothing new to report back to you guys.  All my numbers are pretty much the same - weight stable - lung function still at 22%, still the same number on the list....So basically I am just waiting for a call!

Soon hopefully...

Shout Out To My Peeps

I have been mia this week, so sorry! I had a doctors visit Tuesday and that kind of wiped my out for days, and okay maybe sent me back a few notches in happiness.  So remember that infection I had awhile back? My infected abscess? Well I need to have surgery on it on the 10th (just a day procedure it shouldn't be a huge deal, but pain and recovery none the less) and while this happens, and I am waiting for it to happen I am inactive on the transplant list.  You see, they can't give me new lungs with an infection - it would likely spread and kill me very quickly.   So this needs to be taken care of before I can go back on the list.  The thing is, I really need new lungs, I'll rarely say it, but I do! And I had high hopes for getting them in April or May (and attending my friend Betsy's wedding in CA).  It could still happen near the end of May, but if I am attached to this oxygen hose and pretty much not doing a lot when summer breaks, I fear for what that might be like.  I'm normally cheerful and roll with the punches and what comes my way I can take, but this has been a very slow process of being sick, getting sick enough, being really sick, getting on the list, etc....So it hasn't been the best week ever, BUT I seriously have some really amazing people in my life that helped cheer me up, even without knowing it, and I must give them some credit.  One of my BFF's Aly came to visit me from nyc on Monday and then came to the doctors with me all day Tuesday, that was a nice treat! Thursday night I got to have an awesome burger with my other BFF and her hubby, they always make me laugh, and I got a very sweet text from my other bestie Lindsey which made my day! And then to my surprise Friday I got a brownie delivery from my amazing friend Kerri! Big shout out! This totally made my week to get an unexpected gift like this and know someone was thinking of me, seriously like I think it made my eyes water.  I might not come out and say a lot that I'm down or it's been a hard week, but seriously all the texts (shout out Crystal & Amber), comments, emails and FB messages (shout out Betsy & Michelle & Terry) really make a huge difference in keeping my spirits up when it gets harder....And my family that always checks in (my grandma, Alisha and Karen!)

Lots of people need to be mentioned here like Laurie, Jess, Becca, Jan, Judy and tons of others that I am not sure want their name in the blogosphere....but sorry if you did want to be mentioned and aren't...

So....new lungs at the end of May please come my way!

Transplant Thursday

I had a check up Tuesday, I go every three weeks basically so my weight and numbers can be monitored and of course to make sure everything else is my body is working normally for new lungs to come.  The last two weeks I have felt a real decline.  I had a week where I felt good, like I could do a lot of things and it wasn't killing me, and then I hit a wall and it seems like even doing little every day things started to make me really really tired and I was so short of breath.  So it was no surprise that my lung function is down to 24%.  Especially at this point, every 1% you lose is like dying a little more inside - that sentence is dramatic, but I can feel a huge change in little things even from going to 26% to 24%.  My weight was 84 lbs which is terrific, because last time I was 79 lbs.  This is huge huge huge! We're dealing with a few other things right now, I've been getting crazy night sweats and we are just making sure they aren't coming from some underlying infection, because that wouldn't be good for new lungs.  But on Monday they had lungs for me, but for a specific reason that I don't want to announce on here, the hospital ending up having to turn them down.  So, lungs could be coming seriously any day now and I am more and more ready every day that goes by....

Transplant Bag

When you are listed for a transplant you need to be ready to go at any moment, almost like having a baby, so you need to have a bag packed and ready to go because you can't waste any time packing a bag! I have packed my bag and it's interesting how different my first transplant bag is from my bag this time around.  The first time I'm not even truly sure I had a bag! It might have just been my mom that had a bag! By the time I was listed and instructed I was dying, so it didn't really matter (this time has been drastically different) so this time I have packed a bag, and it includes: sweatpants, zip up sweatshirts, a toothbrush, toothpaste, face wipes, dry shampoo, a plug for my phone/ipad, flipcam, shorts, and underwear.  These are all things that I did not have the first time around (well, I had a toothbrush they gave me) but they are things I could have used after a week when I was able to sort of get up on my own, and the gowns that were 4XL were falling off me, and I had no underwear (the whole transplant staff has seem things they shouldn't have ever seen on me!) and my hair was practically it's own entity, and I could have used some lip gloss.  But you know, I may never even use any of these things the entire time, it really just depends how fast I bounce back and when I start to be weaned off of drugs.  I mean when you have a morphine drip going you'll be completely naked in front of a room full of people and think everything is right in the world....because you are drugged up and breathing!

List News

I'm number four on the list kids!

The Germinator

So, it's happened I have a germ cloud in my house and I need to guard myself against it.  In my medical opinion I don't have enough lung function to get a cold, so I am being really diligent in not letting myself get sick with my house partner spreading her germs all around.  She has been sick for over a week now, and I am still cold free! These are the tools I have used and you should use them too.  I mean, they aren't overkill at all! (I'm also in the market for a germ wand, please leave reviews of the one you have - because I know you have one.)

violight - UV germ killer for your toothbrush

lysol foam for your hands

hand wipes for your hands and everything else

gel sanitizer

clorex wipes for (remotes, computers, phones, counter tops, etc)

spray for EVERYTHING

this is plugged in near me to kill the germs in the air!

Ruh Rho

This is what happens when someone around me is sick

Yeah so my eyes are always closed in photos hahaha.  But you get the point!

A little secret news...

I wasn't sure if I was going to write about this, because it's not that big of a deal, but I've only told one person so far! But I almost got a call for lungs already.  Crazy I know.  The average wait time is 6 months - 9 months, but last week the two people ahead of me that are my same size and blood type, well one was "not available" and one turned down the lungs, so that left little me! But it was an offer for a single lung only, and well I didn't even know I could get just a single lung (the first time I could only get double, cystic fibrosis only gets double lung transplants) but I guess in the case of chronic rejection you can get a single, but anyway, my doctor knew I wouldn't accept a single so they didn't call me.  But I still find it amazing after like 2 weeks on the transplant last my name even came up! I'd have to be really really sick to take an offer for just one lung (and I mean at that point I would be high on the list I would think - the sicker you are the higher you are - so....) but yeah! Exciting and scary! In other news I think my abscess is actually getting smaller today, and the pain is minimal so I think the antibiotics are finally working! Hooray!

I hope you are all having fun in the snow :)

And it continues...

Apparently people read this blog because they have been asking me how my bum is doing.  Hehehe.  Well, me and my bum were at the doctors on Friday and we are now on three antibiotics for what seems to be an infected abscess inside my right butt cheek.  People often get those in their mouths, you know? And then have to get them drained because they are so painful! Well I have one the size of a plum deep in my butt cheek! Like seriously....this could probably be happening to someone else instead, haha.  We are going to try the antibiotics for a week and go from there - if it doesn't get better they are going to have to perform surgery and drain it.  This will not be pleasant to have an open soar that has to heal on my bum, so cross your fingers for the antibiotics!

PS you can't see it! It's way way under the skin! 

Lucky Number 8

I'm number 8 on the transplant list.... But there are two people ahead of me my size and my blood type so that means I will not get a call until they get lungs - unless of course I have a decline and am moved ahead of them.

BIG BIG NEWS!

So, I have some really big news to share with you all! I am officially on the transplant list as of yesterday! My quality of life is getting to the point that I think it was the perfect time.  So, this means at any point now I could get the call for new lungs! It most likely won't be for a while (average wait 6 months but I hope they come sometime in April or early May) but you never know, I know people that got the call a week after going on the list! It really just all depends on when they find lungs that match for you.  And with my size, if they found tiny lungs they could call me tomorrow!

The next step in the journey continues...

Bad Mood

I'm in like a really unusually bad mood for me today.  I was supposed to be heading to new york for a doc visit but it's going to blizzard so that has been put on hold.  This is great news because I hate driving in snow, and I was tired and grumpy to begin with.  But I'm grumpy and this is unusual.  But really it's truly super super annoying to wear oxygen all the time.  Listen, I am 27, I want to be out doing normal things.  It's really annoying to drag my tubing around, to get it caught on things, to get dressed with it, and listen the other day I stepped on the hose and it ripped off my face and I literally was just so annoyed and frustrated  I started to cry.  It hurt my ears and it really pissed me off and I wanted to punch a wall that I'm really here AGAIN needing new lungs.  And it's just all emotional and annoying and tiring.  And I just needed to vent.  You know what this means, this means I am going to shop online today because this makes me feel happy.  And my bff Lindsey might stop by and maybe watch the black swan with me tonight or at least just make me giggle.  I need giggling. 

Me and my buddy

Today I took my little mini oxygen out with me for the first time in public. It brings about a feeling of relief and anxiety. The relief comes from the fact that passerbys see that I am really sick as opposed to the anorexic thoughts that I know float through peoples heads when they see me, or the snide looks I get when I park in a handicapped spot - well trust me those stop when a 27 year old steps out of a car with oxygen on. All of that equals a lot of relief in what other people think. Why should I care? Who knows but I guess I do. There is some anxiety that comes along with it because EVERYONE looks! It's like you know that old saying: take a picture it lasts longer!

Well this is the start of me and my new buddy...

Would you want to know?

I'm so sorry about my lack of posting! I've been feeling a little under the weather with a crazy sinus infection....UGH! And my lungs are declining I can feel it, so things are taking more effort, I am more tired, sleeping more etc.  I have a visit next Tuesday and I would not be surprised if I was back on the list within the next two months.  Last time I was there my doctor asked me a question that I wanted to ask you all - we were talking about certain scenarious and things that could happen and what would I want in these cases and one of the questions that came up was: if you were dying would you want to know? In other words if I was in multi organ failure and dying and pretty much sedated and not really with it should she wake me up to tell me I am dying.  Would you want to know? At first I was like Oh God No! Because when my mom was dying the last thing I would have EVER done was wake her up to tell her she was dying.  Never would I ever have done that.  But the more I thought about it, the more I wasn't really sure.  What do you think you would want?

Lung Update

I am going to try and post every day this week, I know I have been MIA.  I had a check up last week and I wanted to update you all! My weight is stable - hooray for that! My lung function is down to 28% my oxygen is level is getting a little low, but not enough to need oxygen full time yet...So as usual things are steadily declining.  I am having crazy night sweats lately so we are trying to figure out what that is coming from.  They tested me for a few different viruses which all came back negative so now we need to try and figure out what else it might be.  Night sweats always scare me because they make me think of lymphoma but it seems pretty obvious it has to be coming from some sort of infection.  I'll keep you updated! Thanks for checking in :)