6 month anniversary!

Dear all our Stars and Angels:

Wow. I just cannot believe it has been 6 months tonight since my transplant surgery! In some ways it seems like yesterday, and in other ways it seems like forever ago. So much good fortune has come to me/us, and we are ever mindful of and thankful for all of your love, help, support, prayers, good energy, and blessings. In case we have not come out and said to each and every one of you, near and far, what we think all the time, THANK YOU!

We have received about a foot of new snow in Park City since yesterday afternoon (after a foot over the weekend). Today, the skies cleared around 4 pm, at which point it was just beautiful outside. So, to celebrate the new snow, Shea (our nanny), Mason, Liam, and I geared up in our winter clothes, and I cleared the driveway with the snowblower for the first time with my new heart! Shea said I had a huge grin on my face each time I came back down the driveway!! It was fun and I felt great.

My most recent biopsy was a week ago, which was another miserable experience but the results were excellent (no rejection) so that is all that really matters. All else is well with us. Mason and Pete have been skiing twice together, and Mason has been twice (again tomorrow) with the free program through his preschool. Mason, Pete and I will ski together on Sat. (my first time post-op!). We'll wait to take Liam until the Spring or a warm winter day. It is too frigid and too busy on the slopes this time of year.

Thanks for all your continued love and support. Thanks also for your prayers for my friends Bill and Paul, who are still waiting for new hearts. Perhaps they will get the ultimate extra special Christmas gift this year! I am thinking, as always, of my donor family and wish them peace and love -- it must be especially difficult for them this time of year.

I wish you all a great week of Hannukah and great pre-Christmas week!
Lots of love and thanks,
Emily

Thanksgiving in Seattle

Happy Thanksgiving. We have a lot to be thankful for, especially Pete. I would not have a family were it not for the unconditional giving of life from THREE different families. So I say thanks to Denise (birthmom), Emily (birthmom), and a young man (Emily's donor) whom we will never meet for letting me enjoy the simple things in life like watching Mason learn to ride a bike. It sounds like nothing much, but riding bikes to a coffee shop with your 5-year old for the first time is so joyful.

Peace, Pete

Greetings from Seattle and a very Happy Thanksgiving to all of you, our stars and angels! As Pete mentioned above, I learned yesterday that my donor was a young man (apparently "younger than me but not by much"), who was traveling when he had an accident. That is all I know, but I just wanted to share this information. I have finally finished my letter of thanks to the donor's family, and I am especially mindful this day, this time of year, of the loss suffered by my donor and his family. So, with this in mind, and despite the difficult economic times, let us all be thankful for how fortunate and blessed we are. We appreciate so much all the love and support from you, our family and friends, our community, and we send much thanks, love, and peace your way.
Emily

p.s. Here is a clip of Mason riding his bike in the Aunties driveway in Seattle (notice the ramp Mason insisted that Dad build so he could jump it!).

More wonderful news from Nov. 4!

Little did I know when I wrote that Nov. 4, 2008 was a magnificent day, that something else incredibly wonderful happened that night and early Wed. morning, Nov. 5. Our friend Jean, about whom I wrote a few weeks ago, received her new heart late Tuesday night into Wed. morning!!! Thank you all SO MUCH for the prayers and energy that you sent out to her - it means so much to me and I know you all contributed to her successful transplant.
To back up a bit, before my biopsy yesterday am, my doc in the Cath Lab let slip something about another woman recently receiving a transplant, and I checked with visitor info. to see if a Jean Doran was a patient, since she is the only woman I know who was waiting. Visitor info. confirmed my guess, so I dropped by the Surgical ICU yesterday afternoon after my biopsy, echo, and clinic visit. I was able to give Dan, Jean's husband a hug, meet her daughter Heather, and quickly say hello to Jean - she looked very well, though it was weird to see someone all "hooked up" like I had been, since I never really saw myself that way despite the photos! I was also lucky enough to see two of my SICU nurses, Stewart and Luisa, and they were so very kind back 4.5 mos. ago and yesterday! I cannot really explain my joy in words, but suffice it to say I am overjoyed for Jean and her family; it is so thrilling from this end of things to see this miracle happen to someone else.

Two other bits of news:

My biopsy results from yesterday were excellent again - no rejection thankfully!

And finally, about my friend Doug: Doug is about 66 and he received his new heart on May 25, 2008, just a few weeks before I received mine. Doug and his wife Betty relocated to SLC from Buehl, Idaho, a small rural area near the metropolis of Twin Falls, Idaho. He had waited over 18 months and was basically at the "cut-off age" when he finally received his heart, and he has stayed here in SLC for the critical 6 month post-recovery stage. So, he has not been home in just about two years --- and here comes the good news --- he is going home this weekend!!! I saw him in cardiac rehab this morning to wish him well and goodbye until he comes back for his check ups.

So, that is all for now. Thank you for listening and reading, thank you for your prayers, blessings, and strong energy for me and others. Happy weekend!
Love and peace, Emily

MAGNIFICENCE

Greetings to my stars and angels:
While we may not all have voted for Obama, I personally want to share my feelings of appreciation and gratitude on this magnificant, momentous occasion. As my sister and I discussed last night, I am ever more thankful that I was lucky enough to get a new heart so I could witness, experience, and participate in this 2008 election. Wow, wow, and WOW!!!

I feel hope and renewed faith in the American public. The incredibly high voter turn out alone is something worth celebrating. Peter and I, and even Mason, are so thrilled, moved, and elated - and what a perfect speech Obama gave last night as President-elect --- humble, inspiring, unbelievable. For that matter, McCain's was great too - gracious, kind, eloquent. And, the icing on the cake is that the UT electorate voted something like 42% for Obama - AMAZING, considering Utah was the Reddest of the Red in 2004 with somewhere around 65-70+% for Bush!!!

So, on this joyous day, I wish you all well, I wish you all hope and joy, and I know that we can come together, with sacrifice and hard work, to make this country and world better for us all.

(FYI, all IS well with my health. No news, status quo, and I have my next biopsy/echo/dr's visit this Thursday, 11.6.08.)

Thanks to you all for your love and support,
Em

out of touch but all is well!

Good morning my dear friends, family (stars and angels):

Yes, I do apologize for not communicating in weeks (almost a month) - life has been busy, which is great - this means that life is getting to normal! Of course, I have to ask, what is normal anyway? Where to begin? In this case, no news really is good news! Tonight is the FOUR-MONTH ANNIVERSARY of my surgery! Cannot really believe it, but it is so.

When I last wrote, I expressed my frustration with my docs and the pericardial window surgery to permanently drain the effusion (fluid around the heart) that seemed not to work. Without boring you to tears with all the details, suffice it to say that all is status quo on the effusion. I have gotten little answers from the doctors, but because I am experiencing no symptoms, i.e., no compression on the heart from the fluid around it, no change "hemodynamically," the doctors advise now to just wait and allow things to resolve on their own (hopefully). Unfortunately, my questions to the surgeon were met with a bit of defensiveness and hostility, but in the end, he has contacted a few colleagues elsewhere to run my situation by them, and they all agree not to do anything more at this time. In fact, the surgeon even admitted that his mentor asked him: "why did you try to fix something that was not broken?" I was surprised that the surgeon admitted this to me as he is just a bit arrogant and does not have the best bedside manner (for example, he always complains about how many questions I ask, though now it is more in jest, as he realizes I do not take kindly to someone criticizing me for being my own best advocate!)

In any event, overall I am feeling well, and all my biopsy results have been excellent - thankfully still no rejection. One more gorey detail - On Oct. 2, the biopsy did not go well as I had not had enough salt and fluid in my diet the previous day, so the docs could not get into my vein, accidentially nicked my carotid artery, then had to put pressure on it for 10 min. to stop the bleeding! My neck was bruised and sore, but I survived and rescheduled the biopsy for the following Tuesday Oct. 7. It went great (a total of 30 min. from start to finish) after I had tanked up on salt and water.

My heart rate has calmed a bit on its own, but is still a bit high some mornings. My exercise/cardiac rehab is going very well, and I am coming to an end of what they call "phase I" cardiac rehab, which involves insurance-covered monitored exercise at the Univ. Hospital gym for the first 4 mos. post-op. So, now I have to figure out how I can continue with my good work out routine, which by the way, is way more regular and intense than I have other done before! I am doing about 55 min. of cardio - treadmill, elliptical, bike; and another 30 + minutes of arm free weights; leg, back, and chest weights (machines); and ab-crunches on the balance ball, then some stretching!!! It is actually pretty fun and always feels good when I am done! I am going to increase the cardio element on my yoga at home, but may also have to start going to a real gym, at least during the winter months!


Going back to September again, I have to tell you about the fantastic weekend I had Sept. 11-14 with my wonderful, dear friends from Maine and Mass., Catherine and Deirdre. They came all the way out here for the weekend, just to visit us! We had lovely weather, went out to a girls-only lunch (my first restaurant experience in quite a while), drove up through the mountains, went on a small hike, ate great dinners at home, talked and talked, and just had a really fun, relaxing, and wonderful visit. Here are a few pics from our weekend, including one with a mama moose and her twin babies visiting our yard! I send my most loving and enthusiastic thanks to Cath and Didi for sacrificing their time and coming all the way to Utah to visit. It was truly superb.
Up Guardsmans Pass with Didi and Cath - glorious day all around!

Baby moose twins are nursing from their mama here! Awkward looking but it was amazing to see and hear!

Other news: Liam turned 2 on 9.23. We had a mellow evening with the Wiczeks over for cake and ice cream. He had his 2-year appt. doc's appt. that week also, and is in great health overall - 97% in height, up to 30% in weight!


On September 28, Pete and I celebrated our 12th wedding Anniversary! We went out to dinner the night before to our favorite restaurant in Salt Lake - Frescos, a northern Italian small, quaint spot with delicious food and wine. We had a corner all to ourselves and it was really great. Great to be just the two of us, great to be in a quiet, romantic environment, and great to be out eating a delicious meal! The next day, our fiends Emily and Dave kindly took the boys for a play date (they have Ralph and Teddy, each about a year younger than our boys) and Pete and I (and Maggie of course) went for a great 2+ hour hike. It was a glorious day - the colors were changing (Mt. Maples were in their red glory and the golden aspens just beginning), the sky was clear and bright, and it was so nice to be out in the woods for a "real" hike - my first of the summer and fall (since it was technically fall). So thanks to Em and Dave for all their support and the delicious apple pie and desert wine they gave us too!

Last week, Liam had his first barfing experience - he was super scared by it, but he survived! It turned into a small head cold, but he is well now. Then, Thursday of that week, Mason barfed twice, but it was over quickly. Unfortunately for me, I got it that Sat. night, after having a MOST delicious meal of Indian food with our friends Vonnie, Tom, Jack and Charlie! Not surprisingly, due to my compromised immune system, I've had a bit of lingering tummy cramping and loose stool, but hopefully it is out of our house now!

I want to tell you all in detail about some other folks I have recently met, all of who are awaiting heart transplants -- they are Jean, Jim, and Paul. I told you about Jean and her husband Dan a while back - they are ranchers/farmers from Eastern Montana and relocated to SLC about 2 mos. ago when she was listed. For some reason, Pete and I just connected with them and I feel a kinship with Jean. I cannot imagine how difficult it must be for them to be away from their cattle ranch, lives, and livelihood here in the big city. They have two grown children and their son is running their ranch at this time.

Paul is 35 and a professional pianist. He has been listed about 2 mos. Both men have congenital defects, similar to mine, but not quite as complex. However, both have had multiple open heart surgeries since birth (5 or 6) and are sicker than I ever was. Today I learned that they have both had recent "downturns," are weakening, and their families are worried they will not get new hearts in time. As my mom said, "your heart was not supposed to work but somehow it did," and it did really well. I truly do not know why I/we have been so fortunate, but it really hits home each time I see these two gentlemen. Paul is on 8 litres of O2 at all times, cannot lift his 2-year old daughter, cannot walk across the room. Jim, who is about 38, has been waiting 2.5 YEARS and is losing a bit of hope and spirit.

I have asked for a lot from you all, your thoughts, prayers, and energy, and I know you do not know these three people, but please, if you have any left to spare, please send your thoughts, energy, prayers to Jean, Paul, and Jim.

Mason turns 5 next Tuesday, and for his birthday celebration, we are taking 5 boys this Saturday on the new "frontrunner" double-decker commuter train from SLC to Ogden, where we will get off and go to the train museum, have sandwiches and cake, and come home! It should be fun and Pete's parents will be here to help us. The highlight of Mason's fall was the receipt from dear friends Franny and Gabby Yturri of a kids' shaving set - as you can see, he is ready to be 18!

My other big news is that my doctors cleared me to drive to Seattle to Aunties Kate's and Caroline's house for Thanksgiving! So, assuming all is well at that time, we are going to Seattle for about a week in November. It will be such fun to be with them (and their new puppy), and it will be great to get away, get a change of scenery.

We think we will be hosting all of Pete's family for Christmas, Chas, Sara, Walker and Reed, Dave and Carol, and Sally and Allen (Mana and Grandad) - it will be fun and great to see them all!

Last, but not least, we FINALLY made a donation from all your kind and generous donations for the heart2heart4emily wristbands to an organization called The House of Hope and Healing, Inc. It is a residential facility, a home away from home, really, where many folks awaiting and recovering from transplants (and receiving treatment for other life-threatening illnesses such as cancer) can affordably live if they need to relocate to Salt Lake City for medical care, as all folks from away waiting for at least heart transplants must do so that they are within 1 hour of the hospital once listed. The facility is run by Jerry and Annette Johnson, and they have quite a story/stories of their own. You can check out the website on your own, http://houseofhopeandhealinginc.com/index.html, but suffice it to say that Jerry has had 2 heart transplants, one in Michigan 10 years ago when he was about to begin medical residency, (he had a congential defect), and the other here in SLC 5 years ago this October after he had suffered a major rejection; his wife Annette was diagnosed with a brain tumor around the same time 10 years ago, had surgery and radiation back then, and she has had a recurrence and is currently undergoing chemotherapy treatment; and the youngest of their 3 daughters had a heart transplant (same congenital defect as her dad) in March 2005, at the ripe old age of 14. Thankfully, she is now 17 and doing pretty well. They themselves stayed in this facility (previous owners) when they relocated from Boise, Idaho, for Jerry's cardiac care and second transplant. When it looked like the facility might go under in early 2007, they purchased it. They provide a much-needed service for those who have to leave their homes in the hopes that they will receive life-saving medical care at the fantastic hospitals in Salt Lake City, Utah.

Consequently, and because the facility needs some work and families staying there are always in need, and we believe the House of Hope and Healing is a very-deserving recipient of our funds. We raised $1,055 in total thanks to all of you!! I have heard through the grapevine that the Johnsons' dream is to be the recipient of one of the home-makeover shows, like "Extreme Makeover Home Edition," so if any of you have a connection to such a TV show, let me know!!! The Johnson family and all the residents are so deserving of help. In fact, I cannot think of a better recipient of such largesse, even if it is from a reality TV show. Indeed, Jean and Dan - the cattle ranchers from Eastern Montana - are living there and they speak very highly of the Johnsons generosity and kindness, of the home itself and the other residents, and of how fortunate they are to have found someplace warm, clean, and affordable in which to live. If you click on the link above, and go to the donations tab, the Johnsons have posted a kind thank you to all of you (scroll to the bottom of the page) for your donation!

On the world, the US of A, economics, politics and the election, crises, etc. . . . this is certainly a most interesting time, isn't it. Interesting is not really an appropriate word, but won't it be fascinating in 20 years to look back and see how we fared? I am trying not to get my hopes and expectations up, despite the recent polls, and I just do not believe the polls are reliable. In my view, it is still way too close of a race, and I can only hope for the best and do what I can to get Obama (and Biden) elected.

That's all for now. Again my apologies for not writing sooner to let you all know I am/we are doing so very well. It snowed here this weekend, measurably - we still have some in the north-facing yard! Winter is a-coming.

Lots of love and thanks for all of your concern, care, and continued love and support,
Em, Pete, Mason, Liam and Maggie

Home again!

Greetings on this lovely Thursday afternoon in September:

I have been remiss in not sending out an update sooner, but I am thankfully home again from the hospital, as of Tuesday evening around 7:45 pm. I am feeling pretty well and almost 100%, and am especially happy because it is just gorgeous late summer/fall weather with lots of chill in the air!

In any event, I barely escaped the claws of the hospital on Tuesday afternoon!! That morning I was told I could go home that afternoon, would probably "get out" around 4 pm, but needed an echo (echocardiogram is the ultrasound of the heart) first. I waited all day for the echo, the test by which one can see if there is fluid in the pericardium surrounding the heart and measure heart function. The echo tech finally came at about 4:10 pm, and the echo showed fluid still around the heart (after many years of watching these things, I can read it fairly well - at least I can tell what is tissue, what is fluid, and the major anatomy of the heart).

"MORE FLUID?" you say to yourselves, as I asked myself -- wasn't the surgery Emily just had meant to drain that fluid and prevent if from reaccumulating? YES is the answer (and during the surgery they drained about 1 liter of fluid) . . . but I guess it is not that simple!

After they (the fellow/resident) looked at the echo around 5:30 pm, they came to my room and said "the effusion appears to be at the same volume as BEFORE the sugery Friday, so we want you to stay an extra night." Of course, me being me, I flipped, got a wee bit angry, and told the fellow and resident what the surgeon and cardiologist had said earlier in the day - there was no medical reason for me to stay. I asked them to call the surgeon and the cardiologist, which they did, and then came back and agreed there was no medical necessity for "holding me" another night, nothing they could/would do that night, especially since I was feeling fine and asymptomatic.

SO, we got home a little before 8 pm, thankfully! Ate dinner, put the boys to bed, went to bed ourselves. Need to insert a HUGE thanks to Katherine and Roger for having Mason over to play with Owen (and feeding Mason a yummy dinner) while Liam and Dada picked me up at the hospital!

Needless to say, I was extremely frustrated at the news I had received as I was discharged. I am still frustrated but a bit less so, having enjoyed the freedom and luxury of being home, wrapping my arms around my boys and my hubby, eating normal good food, and sleeping in my own bed. Yesterday I spoke with my awesome nurse transplant coordinator Shirley (we call her Shirl the Pearl), and she also helped ease my worries, agreeing that I had some great questions that needed answers and that I should ask the docs on Tuesday 9.9, when I have my next follow-up appts. with them and biopsy.

Though I still don't have all the info., here is my basic understanding of where things stand presently: the surgery does not appear to have worked, at least not as they would have expected; fluid may be draining out the "window," but at a slower rate than fluid is accumulating. I don't know why the window is not working, if it really is not working at all, if the fluid effusion is actually at the same level as it was pre-surgery last Friday, why the fluid is accumulating, what the next steps are in diagnosis, treatment, etc. I will be asking these questions next Tues. at my appts. with the Transplant team and surgeon, as well as whether there are other professionals/experts they can consult with since this effusion problem seems to rare/uncommon. In other words, I now need to pursue some sort of second opinion, whether that is through a phone consult, email, or just getting my doctors to agree to talk with others in the field -- not sure what course that will take at this time.

I have been so pleased with all my care to this point, and I know there are lots of things/questions the medical profession cannot answer, but I at least need some more information on this effusion issue, since the doctors were concerned enough last week to do surgery so that I would avoid "falling off a cliff and harming my new heart." We all know that I what I want most is to take care of myself, of this gift of my new heart, so that I will be around for a long time to come. That is why I consented to the pericardial window surgery in the first place.

This may sound weird, but this bump in the road has probably the toughest so far, in part because this was definitely my worst hospitalization in terms of pain and nausea from surgery, anesthesia/pain meds, and knowing that i may have gone through all of that for naught, coupled with the additional stress of child care: we had to fire our new nanny last Saturday (she had worked for only 2 weeks - lots of small issues/long story not worth repeating here!). The good news is that we have already found someone (2 part-time people) to take care of our beloved boys! And it is also a reminder of how fortunate we were this summer to have Allie at our beck and call, to be there ANY time and ALL times that we needed her for our boys. We miss her so much!!!

Ironically, in all the time I spent interviewing people in July to start in early August when Allie had to leave to go back to college, I never interviewed one person as qualified or fitting as these two people we now have!

So, I wish you all the best, we appreciate your love, support, and continued prayers/energy for us, and hope you have a wonderful September!
Lots of love and peace,
Emily, Pete, Mason, and Liam

Saturday Afternoon Visit

Mason and Liam visit their Mama at the hospital on Saturday afternoon. It was Liam's first visit to the hospital and he enjoyed the treats(water and gram crackers) and bed(with all the buttons) as much as Mason.

Emily is sleeping right now and is looking forward to me getting her some lunch "from the outside." I think she wants some lettuce wraps? She had a good night last night so the pain in her back and the upset stomach are behind us. Hopefully we can break out of here tomorrow but we don't want to get our hopes up.

Thanks again for all your positive thoughts, help with the boys, and listening ears.

Love, Pete

One final note. On Friday, as the anesthesiologists were preparing to wheel Emily to the OR I was holding her head and she said, "See you on the other side." In a millisecond I went from what did she say, did she really say that, nervous laughter, the anesthesiologist gave me a funny look, and then I thought, "Oh, you mean the other side of those double doors I am about to walk through." Relieved, I kissed her on the cheek, we said our I love yous and I walked out into the surgical waiting room.

Back in 4 North

All,

Emily is back on the fourth floor in the very same room where she recovered from her transplant in June. She is in a lot of pain from the chest tubes but the nurses are getting it under control.

The surgery was 2 and a half hours long and went off without hitch. Thank you all for your positive thoughts today.

Love, Pete

10 weeks post-op but surgery tomorrow

Hello to all you Stars and Angels:

I am actually beginning this posting from the 4th floor hospital library, because I am in between appts. and am waiting to see the docs in clinic in a couple of hours. I had another biopsy this morning, and it was ON TIME and went SO smoothly that I have lots of time on my hands! I have not written for a while so let me fill you in some of what has been going on lately.

After my last biopsy on August 14, which was quite uncomfortable and did not go so smoothly (though, no fear, the results were excellent - no rejection:-)), the doctors ordered an ultrasound of the right side of my neck to see if the clot there had resolved. As you may recall from back on June 24, the day of my first biopsy and discharge from the hospital, I learned I had a clot in my right jugular vein, subclavian in location (I originally thought it was two clots, but it was only one). (This was when my right lung was punctured, which caused the pneumothorax to manifest 2 and 1/2 weeks later on July 5). Anyway, the great news is that my clot has resolved and, consequently, today the interventional cardiologists could actually do the biopsy as it is normally done accessing the heart through the right side of the neck/jugular vein. Going in on the right side made it a 40-50 min. procedure, rather than 1.5 to 2 hr. procedure and it was a cake walk for me and the docs! Yippeee! I still have to give myself the blood thinner injections (Lovenox) for another 2 weeks - the course of treatment for a clot is a min. of 12 weeks, but the end of that is in sight.

Okay, so now on to more good and bad news. I am home now and learned this afternoon that the effusion (fluid around my heart) has increased in the last two weeks and they are concerned that at some point it will cause significant problems for my new heart and may be the cause of the high heart rate I've been experiencing. So, I am now scheduled for another surgical procedure tomorrow, which is relatively routine and minor (compared to my transplant!), but which requires general anesthesia and is still serious business. In this procedure, the surgeon will make a "pericardial window" (a small squarish opening) in the pericardium (sac around the heart), will drain the fluid with a chest tube, which requires me to be admitted to the hospital for at least a few days. The aim is to allow the window to stay open so as to give the heart and the sac time without fluid between them to "meet" and connect. I like to think this is kind of similar to the amazing words Mr. Barack Hussein Obama spoke this evening in his amazing, kick butt, historic acceptance speech (we all have commonality, can "meet"/agree on some level if not on all levels)!!! Can't resist, sorry!

Anyway, if more fluid keeps coming before the "meeting" occurs, it will drain into the area around the right or left lung (depending on which side of my chest they do this procedure on), which is very able to absorb fluid (unlike the pericardial lining). Once the fluid is gone and the sac and heart can meet and fit together, I hopefully won't have this effusion problem again.

As we joked earlier, I have to keep up my good record of spending every holiday weekend this summer in the hospital!!! Mem. Day was Cath, Diagnosis, Transplant evaluation; July 4th weekend was the pneumothorax, and Labor Day is pericardial window!!! But, I aim to be out by early-mid next week and should resume normal activities and have a quick recovery.

SO, please send me your prayers tomorrow and over the next few days. Please also send Pete and our boys lots of love and support if you can.

Here are a few more tidbits I wrote earlier but will keep in this as less relevant but the goings on of our lives, nonetheless!

-- I am now cleared for driving and "other activities." Lifting is a gradual process, so while I have picked up Liam a few times, I still need to be careful and work up to his weight. I am doing well in cardiac rehab, going about 20 min. on the treadmill at a slight grade and 20 min. on the bike as well, and using arm and leg weights, which is funny since I have never lifted before. I have taken a few short walks around home, on the trail behind us and to the "dog pond" with Maggie. It is nice to get outside as the temps cool down a bit. I celebrated my 39th birthday and my 1st with the new heart on August 13th! It was a wonderful, mellow day, and I so appreciated just being alive and well, at home with my family! We had a picnic at the park down the street with the Wiczek family - it was just great. I must say that I have a whole new attitude about my birthday -like most things, I suppose, it is what you make of it, and there is no need for me to ever bemoan getting old. Each year of life I can celebrate is such a gift! And thanks to all of you who called, emailed, sent real cards, or just thought of me and sent good energy!!

I/we received a really fabulous gift on the Friday after my bday of LOBSTER from Maine! My brother and his family sent 8 live lobsters to us, which we boiled and ate with glee (and lots of melted butter!). We shared the evening with fellow East Coasters Katherine and Roger and Beth and Brian, and yes, I ate more than anyone else! (Yes, I had to clear the event with my doctors - they said a small gathering was okay!) We even had a bit leftover so Pete and I ate lobster rolls the next night too. What a wonderful yummy, delicious treat. We HUGELY thank Christopher, Christina, Noah, Wylie, and Homer.

A big transition of late is the departure of our beloved Allie back to college at Lake Forest in Chicago. We all miss her so much! I even added a texting plan to my cell phone and plan on getting proficient at texting to we can communicate more easily! (Yes, I am finally joining the 21st century, but you still won't find me on Facebook.) We miss her whole family too, since we no longer get the daily updates on Bob, Patty, Nate, Sophie, Hannah, and Abbey. But, one of the gals will hopefully babysit soon, so we'll be sure to stay in touch!

Thanks to you all for your love and support. Have a wonderful long Labor Day weekend and enjoy the last days of SUMMER!!! Wish I could be at that Labor Day BBQ/picnic with you all!
Lots of love,
Emily, Pete, Mason, Liam, and Maggie too

P.S. Got the great news tonight of the excellent biopsy results from my biopsy this morning -- no rejection! YEAH! Another glimmer of sunshine before the tough day ahead tomorrow!
Also, I can reduce my prograf med a bit because the blood test showed it too high - so hopefully those hand tremors I've been experiencing the last two weeks will subside a bit (for those of you who don't see me regularly, the tremors are weird! For those of you who do, you'll know what I am talking about!).

ALMOST 7 WEEKS POST-OP

Dearest STARS and ANGELS:

This is a long posting, so I apologize in advance! We have lots to share, but luckily nothing too dramatic!

I have been so touched lately by all the gifts I am receiving so I wanted to share some with you all: phone calls, conversations, letters, article sent from Pete’s uncle, visit from Whitney, visit and hard yard work from Chas and Reed, lots of yummy meals including special crab cakes all the way from Maryland, a couple of short first real “walks”; two sessions with yoga and pranayama/meditation instructor Whitney Reed (don’t know even who to thank for this incredible gift yet but I will get the info. soon!), and my first real, somewhat accidental public outing on the way home from dog pond. Please bear with me as I describe in more detail some of these touching gifts:

*I received a note and article from Pete’s Uncle John last week with a copy of J.K. Rowling’s June 2008 commencement address at Harvard. It was, hands down, the best commencement address I have ever read/heard, and I attach the link here for you all because it is so worth reading. http://www.news.harvard.edu/gazette/2008/06.05/99-rowlingspeech.html. John, in what according to his daughter Whitney is his endearing way, underlined and starred a few passages and sentences, including a few personal thoughts as well in the margins! It was all so right on and I loved each and every concept, word, underline, and star. So thank you Uncle John!

* Pete’s godfather and his wife, Peter and Marylou Lewis, called from their home in Honolulu, Hawaii, after talking with Pete’s parents last week and learning of the events in our lives. It was wonderful to hear from them, and we so appreciate their call all the way from Hawaii. They have both experienced their own share of health issues and their daughter-in-law was recently diagnosed with breast cancer and is undergoing treatment, so we send lots of love, good energy, and prayers their way as well.

* Pete’s dear cousin Whitney Foehl came for a visit from Truckee, Nevada. She willingly drive me to the hospital three days in a row for my cardiac rehab and other appts., hung out with me, played with the boys, took my heart milagro necklace to the jeweler to have a new leather chain and clasp put on it so I would not lose it, went grocery shopping for us repeatedly, cooked us dinner, including amazing enchiladas which even picky Mason loved, went biking with Pete, swimming with the kids, and all around was fun and helpful to have around!

* I received flowers from three friends with beautiful reds and yellow - a preview of cooler temps and fall colors/weather.

* We have received many awesome dinners lately from many SLC friends including Brandy S., the two Lizes, the Housers, the Sheinberg/Turok family, Amy A., and Katherine in PC too! Dinner tonight is honest-to-goodness REAL crab cakes all the way from Maryland (along with spinach, pear, and strawberry salad, and rice salad) from Christa! What a treat this will be, and, as you all know me too well, you can guess that I am already salivating over them!

* Tait, the friend who bought our old house with his wife Carrie, almost made me cry the other night on the phone with such sweet kind words regarding Pete and I. This actually has been happening quite a bit – thank you all for your expressions of encouragement and amazement at us/our family. We try to take your words at face value, cannot always believe what you say, but we appreciate it nonetheless!

* I received a call just checking in and a beautiful flowering plant (Camelia, I think) from the folks at the Colby School, an amazing Tribes-based school – Mason’s preschool.

* Apparently, a number of you, organized by Laura C., chipped in together and purchased me a gift certificate for a series of sessions with Whitney Reed, a local yoga, pranayama, and mediation teacher. She has come twice now, and while I cannot do a ton of yoga yet (see below for lifting of that restriction), she has taught me some breathing/pranayama exercises that feel great! I look forward to more sessions and learning more about who exactly has given me this gift! Thank you -- this is so meaningful and helpful!

* I took my first walk to the dog pond with Carolyn, Logan, Onyx, and Maggie on last Tuesday evening, and my second walk on Saturday morning with Melissa, Peschka, and Maggie, again to the dog pond.

* I experienced my first real/accidental public outing post-transplant after the walk to the dog pond with Melissa - on the way back we saw Otis the wonder lab in a silver 4Runner parked outside the bagel shop in Pinebrook, so Melissa popped her head inside and found Katherine and 2-yr. old son Owen getting bagels before heading to Home Depot for the kids project morning. We ended up sitting outside at a table for a short visit while Katherine and Owen ate their bagels. It was so nice for me just to sit there and talk and listen and be out and about, like a normal person (no one ever said I was normal)!!

* A huge thanks to Patti W. (mom and dad to Nate, Sophie, Allie, Hannah, and Abbey) for her amazing parenting, healing touch, adjustments, and friendship.

* Mason and Liam had a fantastic morning today – Miss Elaine, Mason’s preschool teacher at the Colby School from last year who will be his teacher again this year, came to take the boys to the park for a few hours this morning! Mason was soooooooo excited to see her, and she him, and they all had a great time. We so appreciate her spending her time with our boys - she has such a gift with children and makes Mason feel very special!

* Pete’s older brother Chas, whom you have previously heard about and seen on this blog, is back for his second visit this summer! This time, he brought his 8-year old son Reed, with whom Mason is enchanted and whom Mason is wearing out!!! It is great to have them here as well, and we thank them for taking the time to be with us, help us out with the kids, cook, clean up the dishes, grocery shop, etc. We miss Sara and Walker, but thank Sara especially for her sacrifice in being alone this week so her son and hubby can be here with us. Walker, we hope you are having a great time at camp in Ontario! See more thanks for Chas and Reed below.

* Chas, Reed, and Pete undertook a huge project this morning of weeding the path down to the lower part of our yard where our “dancing circle” (so dubbed by musical Mason) is, in which we have placed some Adirondack chairs and a new fire bowl/pit that we have been using to make smores! In the past week or so, some men, we believe hired by our homeowner’s association, have been cutting down some dead pines behind us. They are hauling the wood to the road up the trail from us to the Southwest, and are chipping all the wood. So there are a few large pieces of cut logs and a huge pile of wood chips on the side of the road. Consequently, while Pete was weeding and cutting back the path, which was seriously overgrown, Chas and Reed took something like 15 trips with the wheel barrow over the creek and up the trail behind our yard to the huge pile of wood chips and mulched the path in our yard with inches of newly chipped wood! The three of them also rolled a few larger pieces of log down to the yard to serve as stools/table for the “dancing circle.” The result is a fantastic and very fun stone patio, and it was a hot and dirty undertaking on their part! I send a MASSIVE thank you to Chas and Reed for helping Pete in this endeavor. See pictures of smore night! WHAT A LOT OF INCREDIBLE GIFTS WE HAVE RECEIVED. THANK YOU, THANK YOU, THANK YOU.




















Maggie, Liam, Reed, and Mason at breakfast!

On the more personal newsy front, it has been very hot lately, which makes for lots of visits to the pool for the boys and Allie and/or Pete. Chas, Reed, Pete, Mason and Liam are out swimming now.

Last Wed. and Thurs. 7.30 and 7.31, I underwent two big days of testing for what is called the “baseline examination.” It serves as the baseline for annual exams in the future. On Wednesday, I had lots of labs drawn (blood testing), turned in my 24-hour urine sample, which is then tested for kidney function, and had a chest xray, an echocardiogram, an EKG, and a visit with the nurse transplant coordinator. It all went smoothly. Then on Thursday the 31st, I had a bit more blood testing, then a groin catheterization (cath) to test the pressures in the left side of the heart, an angiogram and intravenus ultrasound through the catheter to test/view the health of the heart arteries, and a neck cath and biopsy to test the right heart pressures and test the heart tissue for rejection. This all went well also, and though it took a while because of waiting time and the procedures were about 2.5 hours, it was all outpatient. After the caths, I had a visit with the transplant cardiologist/nurse, etc. Normally the baseline exam is done closer to 10-12 weeks post-op., but because I agreed to be part of a study, they did it at about 6 weeks post-op. I learned on Thursday that the arteries were squeaky clean (maybe a surprise to those of you who know my love of butter and half-n-half!), and learned on Friday that my labs all had good results, my kidney function is excellent, my heart function is excellent, and, perhaps most importantly, my biopsy results were excellent (no rejection). The nurse also told me on Friday that I could begin to get out and about a bit, i.e., go to the grocery store at off hours, go to the park. No approval for the pool yet, and no big crowds, but it is a welcome bit of news.

I am still plagued by two things, neither of which seem to concern the doctors much: (1) a continued high heart rate in the mornings, which usually decreases throughout the day, and some more fluid (effusion) around the heart (remember the pericardiocentesis a few weeks back to remove fluid). Because the fluid removed back on July 11 showed no signs of infection and low inflammatory levels, and because the new fluid is not compressing the heart and impeding my cardiac function, the doctors are taking a wait-and-see approach to the fluid effusion and high heart rate at this time. According to the docs, the two issues do not appear to be related.

On a sad note, Allie's last day is just one week away. This is her last full week :-(.... She heads back to college in Chicago and the leadership role as an R.A. in her dorm. We are so very sad to see her go, but of course would not have it any other way. We will all miss her so much. I am not sure if it will be harder on me, who has come to rely on Allie in so many ways and who enjoys her company so much, or harder on the boys, who absolutely adore her. Liam is especially attached to her. Thankfully, we have recently hired a new nanny, Jessica, who will start just as Allie leaves. She grew up here, went to college at Smith, now lives back in PC, and was a middle school teacher at a private school here for a while. This job will be temporary for her as she wants to go back to school for a masters in English or a J.D. next year, but we hope it works well for the coming year. She will not be able to “replace” Allie, as Allie is one-of-a-kind, irreplaceable, and a part of our family! But, we are hopeful that Jessica will bond well with the boys and be a good fit for our family too. She is fun and full of energy, which is important!

Hopefully, Monday and Tuesday will be the last days that I will need a chauffeur. I finally have a follow up with the surgeon next Tuesday 8.5, as he is the doc that has to approve my resumption of the activities that are restricted because of the sternum break. Some of us in the family are anxiously awaiting the lifting of the restrictions, as they also include lifting anything over 5 lbs. (i.e., I have not been able to lift/hold Liam and Mason since the surgery unless they are sitting on my lap), intimate relations (this site is rated G) with my hubby, yoga - using arms, i.e., downward dog and other poses, full-body massage (not able to lay on my stomach/sternum). Sorry to be so frank, but Pete cannot wait for Tuesday to arrive!

On another note, after all my testing on Thursday & after I saw the docs/nurse in clinic, we were asked by the nurse Shirley if we would not mind meeting/talking to a couple in the next room, Jean and Dan, on whom the transplant team had “just dropped a major bomb” (medical team’s words, not mine). We of course agreed, and then spoke to Jean and Dan for a few minutes. The conversation made us only realize anew how incredibly fortunate we are. Jean and Dan are cattle ranchers in Montana, Jean works in the school system and holds their insurance, and they had just been told that she needs a transplant and they need to relocate to SLC within one month for the waiting and recovery period, which can be up to years (2-3). SLC is the closest (and best) care they can get. They were obviously a little shell-shocked, but we tried to answer their questions as best we could, and offer what we knew/our experience. Obviously we are no help on the relo issue, and I can only imagine what it means for them and their ranch, which is a 24-7 job. Anyway, we wish them all the best, good energy, and positivity for the struggles and decisions they face. We hope we can be of further service to folks like them in the future.

After this week and Chas' and Reed's departure, we will not have any visitors for the rest of the summer. Two friends of Emily's are scheduled to come for along weekend in Sept. but that is the only visitors on the horizon. While we are looking forward to some family time, we also appreciate all of our family that have made such extensive efforts to be here so much over the last few months. We love and thank you all!

And finally, if you live in Utah and want to become an organ donor but have not yet found the time, please visit this link: https://www.yesutah.org/register/.

Also for you locals, our family will be participating in the 5K Dash for Donation run/walk on Sat. morning August 16th at Sugarhouse Park, which is a fundraiser for organ donation. For more info., please call me or check out the link at http://www.idslife.org/. We would love to have you join us if you are so inclined and are available!

Much thanks, love, and peace to you all,
Em, Pete, Mason, Liam and Maggie

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

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

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

Em & Pete w/ Dr. Hawkins

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.

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

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