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