Monday, June 30, 2008

TWO WEEKS LATER!!!



Good evening my family and friends near and far (angels and stars):
Well, as you can see by the title of this posting, it is almost two whole weeks since I received my new heart. TRULY STUPENDOUS!!! And, I still cannot believe that I sit here at my computer, feeling super, having had a delicious and salty pizza for dinner (more about that later) out on our deck with hummingbirds buzzing us and drinking from the feeder, birds chirping, the sun reflecting on the trees out behind us, and Mason and Liam being as silly and cute as ever! Liam is now asleep and Pete is reading Mason a story. I have been thinking of this posting for a couple of days now, wanting to share a special story or two.
First, as I mentioned in my first posting (back how ever many weeks ago that was), an unintended but very positive consequence of my "heart failure" diagnosis was that we hired someone, Priscilla, to clean our home on a weekly basis. She is wonderful, sweet, kind, and hard-working. Last Friday, when I saw her for the first time since the transplant surgery, she told me the following: "Emily, your mother told me all about your surgery and your new heart. I went home and told all my family last weekend. They were so touched by your story that just about all of them have now signed up to be organ donors." I about fell over. How fantastic is that!?

Second, my friend Sydney who lives in South Carolina, sent me an email with a picture that I am going to try to post here if I can. The picture is of Sydney and Nick's daughter, Celia, and the caption was "From our heart to yours. We love you." As Sydney said, a picture can speak a thousand words, and it touches me deeply.























So, back to boring details (please note that sometime I think of this blog as my personal diary so i will remember the detaisl of certain days). I was discharged from the hospital last Tuesday, June 24th, around 2:30 pm. It was a difficult day in some ways, and the best day in others. The day began early with my first post-transplant biopsy and catheterization (cath). The purpose of the cath is to measure the pressures in the FOUR chambers of my new heart and in the pulmonary artery, to make sure things are functioning well. They will do this a few times over the next several months. The purpose of the biopsy (first of many to come, one a week for the next month, then every other week for a few months, etc. gradually decreasing in frequency) is to actually take about 4 samples of heart tissue (about the size of 1/2 of a bread crumb) and then pathologists test it for "rejection" -- both cellular and vascular rejection. My fabulous cousin Nina says about biopsies: "They give you a new heart and then little by little they take it away!!" In any event, I am awake for these procedures, on an operating table, and without sedation or meds except lidocaine (like novocaine) at the neck where the docs insert a needle and catheter for the procedures. It would not have been so bad except that they could not get into the veins on the right side of my neck and then had to do it on the left. It worked in the end, they got the pressures and biopsy samples, and, I learned the next day, the results of my biopsy were good. However, because the doctors had "encountered resistance" in the veins in my neck, they ordered an ultrasound later that morning and discovered that I have a blood clot in my right jugular vein and one in my right subclavian vein. So, I left the hospital with another new prescription for blood thinner, which I now inject into myself twice daily. The hope is that the blood thinner will assist the clots in resolving/being absorbed back into the body. The other difficult part of last Tuesday was that I was discharged as a transplant-induced diabetic. This means that I have to check my blood sugar (glucose) levels 4 x/day, and give myself insulin injections if my blood sugar count is too high. There is a sliding scale and it is actually quite easy, just another thing to deal with. Since coming home from the hospital and eating more normally (meaning better, healthier food, less carbs), my blood sugar levels are a bit more stable and I have not had to take much insulin. Apparently, it is very common in transplant patients of all kinds for the predisone which we take for immunosuppression therapy to cause higher blood sugar, at least while we are on high doses of the steroid. Hopefully it is temporary. So, I will continue to eat well and hope that it will go away in 6 mos. or a year, or whenever it is that my dose of prednisone decreases.
So, despite this long discharge day, last Tuesday was also the best day! Pete and I arrived home to much joy and happiness -- my beautiful, loving, adorable, funny, crazy boys, my incredibly caring and strong parents, our nanny extraordinaire/newest member of our family Allie, and our sweet sweet pup Maggie. Plus, there were ballons, fake flowers (and a few real ones), an awesome poster signed by friends of all ages, and a yummy, simple grilled salmon, wild rice, and asparagus dinner! On top of all that, I got to read Mason a book, take a shower, sleep in my own bed, and have a regular old bowl of cereal for breakfast in the morning!!! Such simple pleasures, truly appreciated.

On the home front, Pete and I are enjoying this week with just us and the help of Allie. Pete has been so helpful to me in so many ways - it just amazes me every day how tender his own heart is. My dear brother, Christopher, came to visit last Wed, the same day my parents went home to tend to their own lives. Christopher stayed through Sunday, and it was so good to visit with him. As I think I wrote before, he and his wife and two boys came home a week early from their dig in Turkey to facilitate this visit - what a treat. He had fun with Mason and Liam, helped cook, clean, do laundry, and yard work, and it was wonderful to have him all to ourselves! I must say that my sister-in-law Christina has herself quite a catch!! I am sure my poor brother is exhausted, but I know he loved being here too. Here we are on Sunday sitting on the stone patio (or dancing circle, as Mason calls it) at the bottom of our yard.


Finally, today I started my cardiac rehab exercise regimen, so watch out! Em's on the mend!
So, now I just need to tell you all again how incredibly much all your notes, emails, postings on the blog, voice mails, meals, offers to help, and prayers/energy/blessings, etc. mean to us. We are truly in awe of the incredibly generous support and love that has come our way during this experience, and we are forever grateful to you all. We are also touched by the messages & postings from friends/cousins with whom we are not as frequently in touch like Daphne B. and her family, Pete's Allegheny friends, Jen and Ted D., Jere and Mill and their families, etc. I am sure I have left someone out, but just please know how amazing it is to read a message of love and prayers from someone with whom we have not spoken or someone we have not seen for years!
THANK YOU ALL and PLEASE KEEP the prayers and good energy coming for my body to heal in all ways & for my body to continue to accept and embrace my new heart. Please also in your own way continue to help me thank the donor and his/her family. I can only imagine what a difficult past two weeks it has been for that family.

I send you all lots of love and peace on this Monday evening,
Emily

Monday, June 23, 2008

One week later . . .

Greetings to you all (Stars and Angels, in case you have forgotten the critical role you play in all of this)!

I write, hopefully briefly, to let you know that I am doing great and hope to be discharged from the hospital tomorrow afternoon (Tuesday 6.24). Pete and I have spent the last couple of days learning lots about the many medications (about 17-19) I will be on (most for the rest of my life). The big three drugs aim to suppress the immune system so it does not attack or reject my heart. The goal of the remainder of the meds is to try to counter the negative effects of the 3 principal immunosuppressive drugs!

Anyway, as the big hand rounded past 8 pm tonight, I was thinking that the transplant surgery had not yet even begun a week ago tonight (I went into the OR around 10:15 pm last Monday night) and decided I needed to write!! How insane is all of this??? How lucky am I???

On last Monday night, June 16, 2008, a day I will never forget, an anniversary I will always celebrate, these are the last things I remember: Before the nurses/resident wheeled me up to the OR, feeling so scared, like I never have before, as I kissed, hugged, & squeezed my dear Pete, held/squeezed Chas's hand, and mentally sent my love and energy to my precious boys and all my family and friends; settling onto the OR table and still feeling REALLY scared; saying hello to all in the OR, especially the Anesthesiologist, Dr. Desjardin, whom I had not yet met but had just learned was the head of the Dept/the best in the business; taking a deep breath, and thanking in advance all the hard work of the doctors and nurses/everyone in the OR (mind you, I was pretty blind when I left Pete and Chas - they held on to my glasses, the contacts having long been taken out); and, finally, being told to breath into my arms, my torso, my legs (I think that was the order!) . . . . I awoke on Tuesday and wow, I had survived the surgery and had a new ticker!!!

I know I have said it before and I'll repeat it a lot, but I am so thankful. Thankful most of all for this new chance for a healthy, long life, which really means thanks to my donor and donor family. Thankful for my "transplant team" here at the U and the doctors/PAs/nursing staff/aides who have taken such good care of me -- everyone is incredible, dedicated, sincere, and hardworking. The transplant team is so invested in my continued wellness -- it is really quite amazing, the good work they do. And, thankful for all of you supporting me and my family during this crazy time.

So with that, I ask again that you all please remember those out there whose fate I shared just over 1 week ago, waiting for an organ, a match (and please become an organ donor. Now I am blessed with the gift of a new heart, and I cannot wait to get home!

Love and peace to you my Stars and Angels, and goodnight,
Emily

Saturday, June 21, 2008

Em & Pete w/ Dr. Hawkins



Friday, June 20, 2008

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.

Pictures

Pictures from this morning with Pete's lousy camera phone.


Thursday, June 19, 2008

Moving Out of SICU

Em called a bit ago to tell us that she is moving out of the surgery ICU to a regular (single) recovery room tonight! This is great news and yet another sign that she is a rock star in every way. She is pretty much free of tubes and IVs at this point. She is taking her meds orally and getting out of bed on a regular basis. I visited her earlier this evening and we walked the "loop trail" around the SICU:) She is keeping total and complete boredom at bay by listening to The Omnivore's Dilemma, which Chas loaded onto an IPod for her, and reading trashy magazines. Some things never change! 'Night, Kate

Wednesday, June 18, 2008

Visitation and Helping out

There have been many inquiries about visiting Emily and helping us out in anyway possible.

First, visitation is strictly regulated. Emily is on many medications to prevent rejection of her new heart, these include immune suppression therapy. Consequently, she will be very susceptible to infection for several months and visitors will be very limited. I am the newly elected Vice President of Gate Keeping so everything must be approved by me in triplicate. Pictures and streaming video (if I can figure how to do it) may have to due for a while.

Secondly, many of you want to do something. All coordination of meals, drivers, yard work, poop removal, childcare, etc. will be filtered through the newly created position of Vice President of Everything Else. I have promoted from within the organization so Melissa Wiczek will no longer be only handling meals but you guessed it, everything else. Her email address is, wiczek5940@comcast.net.

Emily is feeling great today. She sat up in her chair for a long while and even walked around the unit. The transplant team is obviously pleased with her progress.

Also, Kate took and posted a picture of Emily after surgery with her lousy camera phone for effect, she really isn’t that pale.

Love, Pete

Before/During/After Pictures


Pete & Em before surgery

Chas and Kate hanging out during surgery


Sitting up and smiling less than 10 hours after surgery!

Wonder Woman

Hi everyone - Well...Emily may lack the strapless suit, gold lasso, and protective cuffs but she is truly a Wonder Woman! She is resting comfortably today, taking it easy and getting lots of shuteye. Yesterday she continued to wow all of us - by 4:00 pm she was out of bed, sitting in a chair, and chatting with me, Mom, and Dad. Please keep the wonderful posts, messages, and prayers coming! We'll be sharing your well wishes with Em while she recovers, and Pete is checking the blog regularly. By the way, THAT DUDE is simply amazing! The kids are happy and the sun is shining so all is well. I'll post some new pictures now. Bye, Kate

Tuesday, June 17, 2008

Recovery

Emily has been in recovery for three hours now after a 7 hour surgery. She is doing great and I have just been admiring her fingers in disbelief (they are a beautiful PINK.) Her oxygen saturation is 98!!

This is just amazing.

I did not sleep last night and will go home around noon for some rest.

Thank you for all your love and support. I felt it all the way out here in Utah.

Love, Pete

New Heart!!

Emily has been in recovery for three hours now after a 7 hour surgery. She is doing great and I have just been admiring her fingers in disbelief(they are a beautiful PINK.) Her oxygen saturation is 98!!

This is just amazing. Thanks you, thank you for all your support. I felt it all the way out here in Utah.

I did not sleep last night and will go home around noon for some rest.

Love, Pete

Things are going well!

It's 2:15 am in SLC and Chas, Pete, and Kate just heard from the OR that everything is going smoothly with Em's transplant. The old heart is out, and the new heart is in. She is still hooked up to the pump for blood flow and they say it will be another hour or two before they've got everything sewed up. Nothing out of the ordinary except for Em's "unique" anatomy, which they've got covered in spades. The heart is still cold so they will begin warming it up soon. Here we sit with empty Starbucks cups and People magazine (with Elizabeth Smart on the cover no less!) in an empty hospital. All is quiet on the western front. Stay tuned for more good news in a few hours.

Monday, June 16, 2008

Officially Getting a New Heart!!!!!

Emily just went into surgery. What an afternoon and evening. This is all very fast and amazingly fortuitous; great team on call tonight, Chas is here with me, Kate will be here in a few hours, and most importantly Emily is VERY positive. As everyone knows from her post this is status quo. She is excited to start a new phase in her life.

The surgery should take between 4 and 8 hours so we will be here all night. The heart was harvested sometime this evening and they sent a jet and surgeon to go get it. We were not told any details, just that it was a great match.

Mason and Liam are at home with Allie and sleeping soundly.

We know all of you are praying and pulling for Emily.

Love, Pete

Friday, June 6, 2008

Officially listed!

Hello again family & friends:
First, we thank you for the many encouraging words of love and support. Second, we wanted to let you know that I am officially on the heart transplant list as of this afternoon. We probably will repeat lots of info. here since we can't remember what we already wrote, but being on the list means that I am now wearing a pager 24/7 (well it will be by the bed at night), I must remain within 1 hour of the hospital at all times, and I may "get the call" that I have matched with a donor any day or in a year or year and a half! So, put your seat belts on and enjoy the wild ride!
Love and peace, Emily, Pete, Mason, and Liam