4 weeks ago . . .

LIAM'S & MAMA'S MATCHING SHADES!













CHECK OUT THAT SCAR!!!

YIKES - CAN anyone believe it was ONLY 4 weeks ago tonight that I began a 7 hour surgery and received a new heart!!! TRULY, this is miraculous!!!!!!!!!!! As I parroted from my colleague and friend Jim K. in my first entry post-transplant surgery, I write now, weeks later, that I am STILL dumbstruck at how well this has all gone and how quickly the time is passing. I guess the time is passing quickly because I am so busy with follow-up stuff, at the U hospital 3 or 4 days a week. Nonetheless, tomorrow is my 4th weekly biopsy, after which the schedule of biopsies, thankfully, will be reduced to one every other week for a few months -- once a week is a bit too frequent for my tender neck!

So, on this small anniversary of note, I want to thank:

First, my donor and donor family again. I have no new or better words to express my appreciation at this time than I did a few weeks ago, so I shall just say "what an utterly incredible gift."

Second, I thank my family and friends near and far, especially: my parents, siblings, and their families for all their concern, love, support, and multiple visits; Pete's brother Chas for serendipitously being here for the big event, and the rest of Pete's family for all their concern, love, and support; Pete's parents for their incredible card of love, hope, and prayer which was a Shutterfly card they made of the pictures of candles they lit for me in beautiful churches they visited while on their Mediterranean cruise (they left the country the night of the transplant and followed my progress by the blog and email from the ship!); all the friends who have brought us delicious meals, which is so incredibly helpful I cannot possibly tell you; the friend that drove me home last Friday and got stuck in construction/paving traffic going back to SLC; all of you that have posted on the blog, sent personal emails, sent snail mail cards and packages, and called on the telephone; and, finally, for the Wiczek family, especially hard-working mother of three Melissa - you all know how much she has done for us and we are so very very thankful to have the Wiczeks in our lives.

Third, I am so very thankful for the incredible care I have received and am receiving from the U.T.A.H Cardiac Transplant team-- doctors, fellows, cardiac transplant coordinators, PAs, nurses, aides, etc., and the Cardiac Cath labs at Primary Children's and the U.


Fourth, an update on our fundraising: Thanks to the many family and friends who have donated to our cause and are wearing "my burnt orange bracelet." This includes a big thanks to all the folks/clients/colleagues at the BLM in Utah - Wow! It means so much to us to have you all participate in this way, and hopefully you'll let us know somehow if you are an organ donor too! We have raised nearly $1,000.00, and if you are waiting for your check to cash, we will be endorsing your checks and giving your cash over to an entity a residential entity that houses transplant recipients while they are recovering and doing the 3-6 mos. of intense post-transplant follow-up care. We'll send a link for the residence when we can. We changed recipients for the fundraising because of the tax issues involved in fundraising, the complexity of starting up our own 501.3(c), the difficulty of trying to earmark a donation to a very specific cause within the University of Utah system, and because the doctors on the Transplant Team speak so highly of this residential center that provides a home for all those who come from afar (Idaho, Wyoming, Nevada, other places in Utah, etc.) and need a clean, inexpensive place to stay for what can be months or even years while waiting for a transplant or in post-transplant care.

Time for bed. Lots and lots and lots of love to you all,
Emily, Pete, Mason, Liam and Maggie
p.s. look closely at the lobster picture, i.e., the "rubber bands" around the claws!!

Procedure a success!

Good evening all my stars and angels:

I just wanted to let you all know that my pericardiocentesis procedure went very well today. After waiting for a couple of hours (what seems to be standard in the Cath lab where they are busy busy), the whole procedure lasted less than an hour. It took a little patience getting the needle and tube in to the pericardial sac because of the scar tissue that has developed since the surgery, but they did it! Then, believe it or not, they removed about 3/4 of a liter of fluid! They told me the next time I am at the grocery store to look at a liter soda bottle and imagine 3/4 of that fluid surrounding my heart! I won't be in the grocery store for a while yet, but I am imagining it nonetheless. It is all pretty amazing, especially since I thankfully was asymptomatic.

In any event, as the doctors said, my heart will be even happier now that it does not have to pump against the pressure of all that fluid surrounding it. I was home by 1:30 pm, and then had a great nap! Here's to some smooth sailing for a while!

Sending you all lots of love and thanks for your prayers, energy, and good wishes,
Em

All is well . . . but one more procedure

Hi.
I am happily home again (since Monday afternoon) and doing well, enjoying yummy meals and corn from the farmer's market today (no, I did not go, but my mom did). My lung has apparently healed, remains fully functioning, and I feel good. I had my third biopsy yesterday, and the results are great again - no rejection!! Yippeee!!!

The only hitch at the moment is that I have a bit of fluid in the pericardial sac (lining/membrane that surrounds the heart), as shown by my weekly echocardiograms. The plan is to remove the fluid in an outpatient procedure on Friday morning. The procedure is called a pericardiocentesis, involves the use of needle and syringe to remove the fluid, and hopefully should not take more than a couple of hours. Assuming it goes well, I should be home by Friday afternoon. It is common to have fluid build up in any open heart surgery, and the docs want to "treat" this now rather than wait for any acute symptoms such as shortness of breath or dizziness. So, I am glad that the transplant team is on top of things and being proactive.

My mom leaves Friday morning, which will be hard since she and my dad have a busy next few months and presumably won't be back for a while. But, it has been so nice having her here. It has been so wonderful having much of my family and some of Pete's too! My sister and sis-in-law arrive Saturday for a visit that was planned many months ago, prior to all the heart health business! I am looking forward to actually being home this time when they are here since I have been in the hospital during their last two visits!

I so appreciate you all sending me/us all your continued energy, good thoughts and prayers. Someday life will calm down a bit and this blog will be BORING (maybe it already is!)!!
Lots of love to you all,
Emily, Pete, Mason and Liam

p.s.

Just a quick post script to share two things:
Upon realizing that I was going to be admitted to the hospital, I realized I really needed my glasses (key for seeing once my contacts come out), my earplugs (key for sleeping in the hospital), and my "heart pillows."

[The heart pillows: When visiting me in the hospital three weeks ago today, my cousin Nina gave me a small firm pillow shaped like a heart that she had received upon discharge from the hospital after her heart transplant almost 8 years ago - I sleep with that pillow every night, holding it against my chest when I move so that my sternum/incision area does not hurt. Upon my discharge post transplant, I also received a similar but slightly larger pillow in the shape of a heart with a pen/marker on which the doctors, nurses, and aides who have taken care of me have written their names/messages of congratulations. These pillows are very useful when I laugh, cough, etc. - I hold them tightly again my chest and they "splint" the sternum, essentially supporting it.]

Pete called Allie at home and she kindly gathered up my things, all the while diligently caring for Mason and Liam; then Pete called Beth and Brian who, without hesitation, at 6 pm on a Sat. evening, happily agreed to bring my stuff down to me at the hospital. When Beth arrived at the house to pick up the bag of stuff, Mason kissed and hugged my heart pillows before she could take them! Finally, when Beth arrived at the hospital, she held my hand, listened to my weepy sad self, and buoyed me right up!

So, this p.s. is really to thank Allie, Beth, and my sweet boy Mason for all their love, support, and help!
Love and peace,
Em

Minor bump in the road

Greetings to you all, my stars and angels, my family and friends, on this holiday weekend:

Well, the good news is that my new ticker is doing great. But, unfortunately, I am writing from the University Hospital again, where I had to be admitted yesterday afternoon, hopefully for a short stay.

So, I awoke yesterday morning feeling . . . well, just not quite right, a bit lethargic. In the afternoon, when I decided to go take a nap, I laid down and my heart rate felt fast, so I checked it, and it was. I then called the transplant team nurse and she called the cardiologist on call. The nurse called me back and advised me to go to the ER to get checked out. When we got to the ER and I told the guy at the desk I was a recent heart transplant patient, they whisked me back so quickly that Pete did not know where I had gone to when he came in from parking the car (great service, but I don't advise having a transplant just for this benefit)! In any event, a chest x-ray soon revealed that I had a "pneumothorax," otherwise known as a partially collapsed lung (right side), with an air pocket between the right lung and chest cavity wall apparently putting pressure on the lung and collapsing it. So, the ER folks called the transplant team folks, who called the cardiothoracic (CT) surgeon on call, who came in and inserted a chest tube on my right side between two ribs. It was quick and relatively painless, and out came a bunch of air. A second and third xray showed that the lung was recovering/filling itself again nicely when the air was removed. However, because the chest tube needs to stay in for 24 to 48 hrs., I had to be admitted. UGH. I was pretty bummed -- emotionally it is hard to be back here -- but at least it is not really my heart that is the issue. It is hard when I know I have been doing what the doctors ordered, taking my meds, doing all the follow-up, and really trying to take good care of myself. But, I know I don't have control over it all! The heart rate is back to where it has been and other than some pain in my back due to the chest tube, I am fine.

Dr. Hawkins (one of my amazing CT transplant surgeons) and Dr. Stehlik (one of the fantastic transplant team cardiologists) visited this morning and, based on our discussions, think that the likely cause of this pneomothorax was a small puncture to the right lung during that first heinous biopsy I had almost two weeks ago. (Post-biopsy, the day I was discharged and the next couple of days, I experienced a bit of wheezing & a little cough, and my voice sounded off, like I had a bubble or had inhaled some helium - it was a bit nasal.) So, there was a slow leak which only just yesterday presented enough pressure to stress the heart a bit so that the heart rate increased. They hope to remove the chest tube tomorrow and get me discharged, so keep your prayers coming! The doctors and Pete joked this morning that since everything went so well for the transplant itself, we just had to tack on a few more days in the hospital. In any event, I am praying for more smooth sailing from here on out. It is not soo bad to be here, but I much rather be home and have no more setbacks or hiccups! My mom comes out again tonight for about 5 days. Ooh, lunch just arrived - yum yum more hospital food! Hopefully you are all enjoying this holiday weekend, wherever you are.
Lots of love and peace,
Emily