To all my STARS & ANGELS!!

Okay - well, I have not gotten any less emotional with my new heart, so as I write only the title of this posting, I am already in tears! HOLY MOLY WOLY HOLY S--T!!! (the clean internet version of my thoughts!)

This is my first posting with my new heart! I don't know what to say to all of you STARS and ANGELS near and far who have been praying for me and my family, sending your magical energy, blessings and vibes, making food, etc.. Pete has been reading me all of your wonderful messages (through the blog, email, and even snail mail and voice mail) of love and support; I am thoroughly overwhelmed; and I cannot express to you all the thanks and wonder I/we feel. I have been saying for the last few days [the surgery was only 4 days ago tonight!] to one of the surgeons and team members, Dr. Hawkins, who so successfully mastered my transplant surgery -- that I do not have the words to possibly express my incredible appreciation. The team of folks here at the Univ. of Utah Hospital has been truly amazing -- kind, diligent, responsive to my every need, and so supportive and positive though they do not even know me well! The same goes for all of you and all of your kindness and love. (The nice thing about a blog is I don't have to respond to each and every message individually, but suffice it to say I wish I could because each one is so meaningful and wonderfully giving!!)

Let me back up a bit: One of my friends and colleagues Jim K. wrote that he was dumbstruck by the speed with which this all occurred! Other friends Kristan and Steve wrote that they were still getting used to the idea of me needing a transplant! I say ditto to both those messages!! Only a mere two months ago, on April 23, 2008, I visited my adult congenital heart disease (ACHD) cardiologist Dr. Yetman with new symptoms of fatigue and ankle swelling; then only one month ago on May 23, 2008, I was at the Univ. of Utah Hospital, post cardiac catheterization (on the same cardiac floor where I now rest) being told that my heart was in failure, and I needed to be immediately evaluated for transplant. So the first thing I say is that my stars and angels, no the stars, angels, and universe, have aligned for me and my family, and I know you all played a part in that alignment. There are simply no words to thank you enough, but thank you all the same.

There are so many amazing things in my story:
(1) For 38 3/4 years I have lived a great, active life with what was a funky heart. However, I thank that heart for ALL it did for me - I am who I am today in part because of it. When I was down because I could not keep up as a kid (playing soccer or something), my parents always said, "you are not abnormal, Emily, you are just different, Emily, everybody's body is different, and you are different and special." So, I thank them and I thank my old heart for giving me all the life it did.

(2) As briefly stated above, my family: what support they have given me and Pete. From our parents to our siblings and their families, to our close friends and colleagues -- we thank you, we love you, and we will call on you, but please remember, it will be a long road to recovery for me - a lifetime really. Thanks already to Mom and Dad, Sally and Allen, and Chas for coming from the East Coast; thanks to Kate and Caroline for coming so quickly from Seattle - Kate even got here to sit with Pete and Chas in the surgical waiting room Monday night! Thanks to my brother and his family who are coming home from their Dig in Turkey a week early so that they can help and visit as well. Thanks to all the offers of help - we'll be calling on you sometime, I promise, just be patient!

Which brings me to (3): Now, as the CT (cardiothoracic) surgeons/PAs/nurses sign off on me and transfer my care to the transplant cardiologists/transplant nurses/ and pharmacists, we begin the next stage of the transplant -- the "team" here says a transplant is not just a surgery, but it is a transition to a new way of life." If there is ANYTHING I can do to show thanks to the family of my donor (about which I know absolutely nothing), the very least I can do is to show thanks by appreciating the heart I have been given and keeping it and me healthy for many years to come.

(3a) An aside: I say the "family of my donor," because presumably, whoever tragically lost their life and gave me their heart had discussed organ donation with family members or at least made his/her wishes known. It may have been a teenager/a child whose parents made the decision. Each and every one of you now know someone who has benefited greatly from organ donation, and I challenge each and everyone of you to consider it and chose to be a donor. Someone said to me recently, "well I am not an organ donor because I fear that the ER doctors or EMTs won't try to save me at the scene of an accident if they see I am an organ donor." This, my angels and stars, is a myth; it would violate a doctor's hypocratic oath and the rest of the medical world's equivalent. Just last Saturday night, a friend shared with me that her 13-year old brother died when she was 17 and her family chose to donate his organs. She said that the knowledge of his gifts to others has always helped her deal with her tremendous loss. I encourage you all to become organ donors (google it -- every state has its own rules for signing up), even if you think you are old, because you might have healthy corneas or a healthy kidney, liver, pancreas, intestine, lung, or heart or even heart valves, or maybe even all of the above.

(4) My visit today from Mason was the highlight of my day - he came in the room and gave me just the biggest smile he could. It so warmed my new heart. Of course, all he wanted to do while here for a short visit was play with the hospital bed and move it up and down and fold it! I have not seen Liam since Monday, but I know he and Mason are in great hands with the combined help of Allie, Chas, Kate, Mom, and Dad, not to mention Pete and big brother Mason!

(5) I now have to single out two others and their families to thank: First, I thank you Allie Winkelman – you are a treasure, a member of our family, a dear, kind, fun, energetic, and responsible young woman who makes me so proud, so comforted knowing she is with my boys much of their waking hours. Allie was home when I got the “call” Monday, she texted her mom within minutes, and Patti was at the house before I was even ready to have Chas escort me to the hospital to meet up with Pete and begin this crazy ride. Thank you Winkelman Family! Second, I thank you Melissa Wiczek – you are another sister, a most dear friend, who has taken on so much as “VP of everything else” (love the title!) to help our family in need. Many of you know how much I worried about moving out of our former neighborhood and up the street 1 mile, but I am so thankful, for so many reasons, that we made the move. About a gazillion of those reasons are that our move brought me your friendship Melissa, and your whole family’s friendship. Thank you Wiczek Family!

(5) Recovering from a transplant/ Life post-transplant: Now to the more matter-of fact almost present. I am recovering very well in the hospital (thanks to the aforementioned excellent care) and hope to be discharged sometime mid to late next week. I will be going home with 17 medications (plus 2 current ones unrelated to heart) that I will have to take on a daily/multi-daily basis, some for the rest of my life!! The top 3 meds are immunosuppression therapy - essentially those drugs that suppress my immune system so it does not "reject" or attack my new heart tissue ("foreign tissue that did not come with the original Emily package"). The rest of the meds are intended, for the most part, to counter some negative effects of the immunosuppression therapy! It is crazy, but it is what it is and it is the way it works. I now have a healthy heart but a funky immune system – in a sense, we traded one set of issues for another, but it is a trade I will take any day. So, as a result of being on immune suppression drugs, I will be highly sensitive to colds, infection, bugs of all sorts. I have to be careful with pesticides from produce, plant spores, and public places, etc. for the long haul but most especially for the next 3-6 months. We will be discouraging visitors for the short term, and especially if there is any bug on/near you and will be asking everyone to wash their hands as soon as they enter our house!!! Please know that I want to hug you all, each and every one of my angels and stars, but for now we'll have to suffice with air hugs! I write this now so that you know we are not trying to offend anyone, we just need to be extremely vigilant. I can go to the park if it is not too crowded, but I will have to avoid the pool, the farmer's market, Whole Foods, Wednesday night concerts at Deer Valley, and the movie theaters for the summer (except for a midday matinee on occasion!). Back to the bugs: as time passes (months/years), the doses of immunosuppression therapy will decrease to some extent, though I will always be on some of those drugs. So, life will eventually be "normal." As I referenced above, I can't say I have ever really known "normal," so I am not sure it is something for which to strive, but I will strive for living a healthy and happy life! In the meantime, I expect to be a bit of a hermit this summer - good thing we have such an awesome spot to hole up in!

After this intensely long posting, a few final notes:

To my Spidey, my Pete, my love, I cannot know what this has been like for you, but I know you have been a rock, I know your heart was beating in duplicate that long night Monday, and I know you were with me in that OR all night long, into the wee hours of Tuesday morning. I love you, I love you, I love you, I thank you, I thank you, I thank you. Thanks for always believing in me, us, and our family

I cannot drive for 6 weeks, so we'll be calling on those of you interested (and healthy) to drive me to and/or from my 2x/week clinic appts.

Keep the prayers/energy coming for a continued healthy healing road!

With all of our hearts and bodies, with all our spirit and energy, Pete, Mason, Liam, and I (and pup Maggie too) thank you all. This miracle could not have been accomplished with out you, my stars and angels.