Transplant Video

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

Dear Mom

Dear Mom,

Mother’s Day is the hardest day of the year for me. It’s the biggest reminder of how desperately I wish you were here. I miss you every day but I guess today is different because I get to glimpse purposefully inside so many other daughters being with their moms and I don’t get to do that anymore.

I remember so vividly the gift I gave you on your last Mother’s Day—it was a picture of me as a kid, maybe 3, in a bathing suit and laughing by our pool. I was so happy in the photo, that was why I picked it—just a kid being happy, not a kid being sick. And on the photo in black sharpie I wrote I love you. You kept it on your nightstand.

I wish I had gotten to know you as an adult. I wish we had been able to grow together as I became me. I’m a different person than when you died. Your death made me a different person—kind, generous, more selfless and less selfish. It also made me more timid and more fearful. It changed completely who I was. I wish I were this person when you were alive. I was in my early 20’s, self-absorbed, and maybe even bitter because of my illness. I’m sure I didn’t listen to anything you said or treat you the best. I’m sure I said things I didn’t mean. I'm sorry. But no matter what I couldn’t function normally without you—you were my first call of the day and my last call of the night and several calls in between. And I still can’t functional normally without you. So much so that I mostly stopped talking on the phone after you died. I can’t stand that the other person on the end of the line is never going to be you again. I still scroll through the last text messages you sent me—the last communication we ever had over technology.  

I can’t believe the things I’m experiencing without you. It hurts my heart that I went to South Africa without you. Or that I spent the day on the Shark Tank set without you, because Robert would have loved you. As everyone did. He would have made a deal with you for something! You were dynamic, intoxicating, strong, powerful, smart and beautiful. You never took no for an answer and you were easy to admire. You lit up any room you were in. You were everything I hoped I would turn out to be.

Saying that I miss you just doesn’t seem right because it is so much more than that. I feel so incomplete without you. My heartbreaks for the things I never saw you accomplish, I’m always thinking how food has taken off so much now and you would be running circles around todays best restaurateurs.

Since I was little our thing always was saying to one another "I love you to the moon and back". And mom today I love you to heaven and back. 

 

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, 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!