Transplant Video

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

Glamour Magazine

An essay I wrote was featured in the digital edition of Glamour Magazine! Please take a minute to read it and let me know what you think! Thanks!

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!

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

       

Update on Natasha

I don't think that Natasha will mind me posting about her progress in the hospital here... after all she did give me her blog login information forever ago!  She got a call for lungs on Wednesday morning for attempt #5 at new lungs.  Up to this point all the other calls resulted in lungs that couldn't be used, but this time they were good.  She went into surgery for 6-7 hours and when she came out they slowly eased her off breathing assistance until Friday when she was breathing 100% on her own.  She's doing Really well and is not in much pain thanks to lots of drugs.  She can sit up in bed and talk to people, but she's not able to be up and about just yet.  This weekend she may be moving from the ICU into a regular recovery room, but that's yet to be determined.

As you can see - she looks Great!  That's her making her bedtime face...or like Nighty Night face or something.  It's cute!  More to come...

Happy Friday

How cute is this little guy? My lungs have had a rough week this week...sometimes it is just like that.  But we are hanging in there!

A recap in pictures

getting strapped in for the ride!

that's me in there!

my hospital gave me a gift!

love notes that I came home to from JB

gw bridge outside my hospital room

A new week...

Last week did not start out well, so here is hoping this week is better.  Here is my story: On Monday of last week I ended up in the ER.  I had had severe (And I Mean Severe) abdominal pain all weekend.  Monday morning I got a hold of my doctor and she said What Are You Thinking!? Go To The ER! I had been avoiding the ER all weekend...But I went.  I couldn't take the pain anymore anyway.  They did a CT scan right away, and gave me a nice hit of narcotics, phew, and I was diagnosed with an intestinal obstruction/blockage.  I mean it's nothing exciting, but it was nothing to sneeze at either! So you know what comes next...I was transported via ambulance down to the bosses: aka my transplant hospital.  And I was there for a week getting lots and lots of IVs to get the blockage moving and lots and lot of pain medication to keep me sane, and we were able to avoid surgery! Hurray!

A long week

Just got home after a week in the big house! More later...

Okay okay a lung post

I've been putting off doing a lung update from my check up last week because I had to process a lot of things -- mainly that my wait for lungs might be much longer than I thought, like fall/winter.  The problem is I am staying stable at 22% lung function, so sicker people are moving ahead of me on the list --which makes sense, I know -- but that leaves me hanging here at not a great position (in limbo basically) just waiting for who knows how long.  I get out still, but I probably spend half my time sleeping, and a lot of time on the couch watching TV, or reading and that lead can clearly be depressing. So if I have to keep waiting I need to do something to stimulate my mind.  I am finally going to buy Rosetta Stone and learn Italian, which I have wanted to do forever, and I clearly have the time so why don't I get on that!? I need to just find things I can do in my home to help me from getting disappointed and down.  We also talked about listing myself other places, mainly Duke, but I am not there yet.  I just really hope lungs are coming in 2011...

More Whine?

Today I just had one of those days where everything is annoying me, more specifically because being hooked up to oxygen 24 hours a day is really fricken annoying.  It makes like running out to get a tomato much more than running out to get a tomato.  Everything is a process and some days it just gets very overwhelming, trying to get things done carrying my little oxygen around, being tired, and being out of breath.  We take for granted being able to do little things, like I imagine doing anything in a wheelchair is a horrifying process that all of able walkers take for granted.  Don't take for granted breathing! When you are running around today doing simple tasks imagine what it would be like if you added 20 minutes of annoying to get that task done.  Thank God for those lungs you have!  

Check up next week.  Hopefully I've moved a spot up on the list....shoveling the food this week, weigh in Tuesday : )

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!  

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!

I'm here!

Sorry I haven't posted all week guys - didn't mean to scare you! I've just been really really really tired, that happens when your lungs are working so hard, so I've been sleeping a lot lately.  I remember those days from the first time around.  But I am still here!

Have any of you seen any funny/romcom movies lately that I can rent that you recommend?

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!

Lungs Party

I had a lungs party to celebrate my 7th birthday with my lungs because I don't think they will make it to 8 so I wanted to do something special.  The theme was mini, because I love mini things and here are some pictures to recap:

Lots of food and lots of fun had by all!

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 :)