From the Friday addition of the Deseret News

Heart recipient Emily Roosevelt lived like she meant it

By Lee Benson

Published: Thursday, April 15, 2010 10:37 p.m. MDT

These are heady times for the Utah Cardiac Transplant Program.

The unit marked its 25th anniversary in March, and just two weeks ago, it was widely hailed for successfully implanting a Utah-made heart pump in an Idaho man.

But the grim reality of the precarious life-and-death nature of what goes on at one of the world's most respected and longest-standing heart transplant collaborations hit home Sunday when 40-year-old Emily Roosevelt unexpectedly passed away due to congestive heart failure.

Emily's passing hit the transplant community hard. In the 22 months since the young wife and mother of two received a donor heart in June 2008, she wasn't just the heart of the local transplant universe but also its soul.

Even as she personally negotiated the usual speed bumps associated with getting acquainted with her new heart — a follow-up surgery here, an emergency room visit there — Emily became the program's all-star supporter and advocate.

When she wasn't helping raise money or beating the drum for people to sign up as organ donors, she was doing everything she could to buoy up the attitude of all around her. So much so that last July, when University Hospital opened its new $200 million wing, hospital officials didn't ask the architects, the surgeons or the governor to act as master of ceremonies.

They asked Emily.

She leaves behind a how-to for anyone and everyone who should find themselves in her shoes:

Don't whine.

Don't act like a victim.

Do encourage the world to donate their organs.

Do talk to the doctors — you are your own best advocate.

Do appreciate every single second.

Do thank everyone, everywhere, all the time.

She became so popular, so fast, she could have been elected president. (Franklin Delano Roosevelt was her great grandfather.)

When her untimely time came, almost without warning, there was a stunned silence at University Hospital.

A place that routinely deals with death was unroutinely staggered.

"You just felt like you got punched in the gut," said Chris Nelson, assistant vice president of public affairs for University Health Care. "She had such an impact on so many people in such a positive way. She definitely transcended being a patient and helped epitomize what our organization is all about — providing care to people who are dealing with complex situations."

Away from the hospital, it was the same thing.

"She didn't have superficial relationships," said her husband, Peter Foehl. "She wanted to get to know you and care about you."

That extended to the person whose heart gave her an extra 22 months.

"She woke up every morning and said a little prayer to herself and her donor," Peter said. "It meant so much to her that she was able to have a new lease on life and be a mom to our two kids."

She wedged so much life into life.

"I don't know if she thought she was invincible — but we did," said Amy Albo, one of a legion of friends. "She was such an inspiration. So gracious. So kind. Such an example."

In contrast to the Tim McGraw song "Live Like You Were Dying," Emily lived like she was living.

"She had this amazing attitude," said LeAnn Stamos, heart transplant coordinator for University Health Care. "She was always looking forward."

In the end, Emily reflected the sobering statistics of transplants. Even though Utah's crack cardiac transplant program exceeds the national averages, a heart transplant patient still has a 7 percent chance of not surviving a year and a 30 percent chance of not making it past five years.

Such odds did not slow Emily Roosevelt down, nor swerve her off course. They just made her that much more appreciative of her time.

As she said after a ski outing with Peter and their sons, Mason and Liam, this past winter: "I think now I sorta stop and take stock. I don't care so much about the speed. It's the views, it's those little things. You know, the wonders of life."

We can feel your love, concern and support

I feel a tremendous amount of love coming from all of you. I know that you are all very concerned about our well being and I appreciate all your thoughts and prayers. We are doing as well as could be expected under the circumstance and are taking are lumps as they come along. We are also laughing and being your typical silly little boys. We have lots of family here now that is a welcome and fun distraction for the three of us.

I have a small request. Please share any memory, short story, moment that you may have of Emily and sent it to me via email, blog, snail mail, however. I want compile as many as possible to share with the boys as they grow older. These memories are also very comforting to me now. Here is a short anecdote about Emily that Liam's preschool shared with their community.

I remember meeting Emily for the first time. She came in to my office with her yellow legal pad, which made me a little nervous. But within the next 2 minutes we were talking about the kind of sheets we liked best. I'm not sure if she even took any notes. She had me laughing about the previous nights bath time with her two boys which ended with a "BabyRuth" .

It's been a joy to watch Liam come out of his shell this year, and how happy that made Emily. I was told there was a birthday party of PEEK children (mostly girls) and Emily got such a kick out of seeing Liam sitting around a table of girls with his crown on.

Susie

Keep them coming.

Love, Pete, Mason, and Liam

Calling all stars and angels

Emily Roosevelt (1969 – 2010)

Our dear Emily passed away suddenly and unexpectedly on April 11, 2010, at home in Park City. She was born in White Plains, New York on August 13, 1969 and from the beginning demonstrated to all who knew and loved her that she would live life to the fullest with no regrets. Empathy, inquisitiveness, courage, and determination defined her daily life. Her godfather said “she was the breathing definition of grace in adversity.”

Emily graduated from Whitby School, The Millbrook School, the University of Virginia, and the University of Maine School of Law. After college she headed west to Sun Valley, Idaho, where she encountered the three great loves of her life – the mountains, cooking, and her beloved Pete. After graduating from law school, she and Pete returned to the mountains to build a home and family in Utah. She clerked for Judge Monroe McKay of the United States Court of Appeals for the 10^th Circuit in Salt Lake City where she served with great distinction. In 2000, she joined the United States Department of the Interior Office of the Solicitor General where she worked tirelessly on behalf of public land issues.

Emily and Pete began their journey together as parents with the arrival of Mason in 2003 and Liam in 2006. Maggie, “the best dog ever,” gave them good practice to be great parents! The family enjoyed many outdoor pursuits and sunny days on the ski slopes together. Emily was devoted to her boys and they will carry on her sense of justice and fairness for all – and also her love of being silly, her infectious laughter, and the big heart she shared with her friends. Her life was deeply enriched by the love and support she received from her Utah family.

In June 2008, Emily received the greatest gift of all – a new heart. We want to thank the team at University of Utah Hospital for giving her the best care possible. We also extend our profound thanks to Emily’s donor and family for giving her a new lease on life. Since receiving her new heart, Emily became an outspoken advocate for organ donation and patient care, helping to raise funds and awareness, supporting others going through the transplant process, and serving as the master of ceremonies for the ribbon cutting of the Patient Care Pavilion at the University of Utah Hospital in July 2009.

Emily will be forever missed and celebrated by all her “stars and angels” including her husband, Peter Foehl; her sons Mason and Liam; her parents Chris and Roddy Roosevelt; her sister Kate and her partner Caroline; her brother Chris, his wife Christina, and their sons Noah and Wylie; her in-laws Allen and Sally Foehl; Pete’s brother Chas, his wife Sara, and their children Walker and Reed; Pete’s brother Dave and his wife Carol; her beloved grandmother Rosalind E. Havemeyer; many uncles, aunts, and cousins; and a huge community of friends and colleagues across the country.

Emily would have wanted you to become an organ donor (organdonor.gov) rather than sending flowers. You may also honor her life by donating to Intermountain Donor Services (c/o Debbie Snider, IDS, 230 S. 500 E., Ste. 290, Salt Lake City, UT 84102) or the charity of your choice. A celebration of Emily’s life will be held on Saturday, April 17 at 4:00 pm at Park City Community Church, 4501 N. Highway 224, Park City. The family will be providing further information about a memorial service to be held in New England this summer.

Oops - No April's Fools Joke

Well - hello there Stars and Angels:

I did not mean to post the last one. I wrote it a while back but never finished it; never posted it.

Unfortunately, I meant to write this instead and post the other thing at the end to let you know how well we had been doing.things got a little funky last week so I ended up back in the hospital for a couple of days - it was quick but a bummer nonetheless. The situation was very similar to what happened last September. I began feeling less than perfect this past Monday, noticed a downturn in my exercise tolerance and was a bit short of breath in doing not much (going up stairs, playing with the boys, etc.).

So, after a couple of nights of poor sleep, I called the docs on Wed. am and went in to the hospital that afternoon. Echo showed decrease in heart function (similar to last Sept. but not as poor), and Chest Xray showed a bit of a pleural effusion (fluid in the lung cavity) that is likely a result of the heart not working as well and not processing the normal body fluids as well. (I did not have fluid in my belly or ankles/feet.) So I had a biopsy late Wed. afternoon to test for rejection. I was admitted to the hospital Wed. night and given a first IV dose of Solu-Medrol (the super-steroid treatment for rejection). The next day, I found out the biopsy was negative (again like last fall), which I is a good thing, but that information leaves me/us in the position of just not knowing what is going on and why my heart has decided to not work so well six months after the last episode.

So, I am now thankfully home again, and I am taking two new meds (ones that I took for a while last fall) - lasix, a diuretic, and linisopril, used to treat heart failure (which I am technically experiencing, though it is mild). I'll go back in a couple of weeks for follow up and was instructed to take it easy for several days.

Unfortunately, the biggest bummer of this latest experience is that we had to cancel our planned trip to So. California for the boys' spring break. We had planned on going to LA and then San Diego (road trip) today. I feel so badly for the boys, but luckily they are not completely aware and we had kept the lead up to the trip low key.

I know I will be okay, be well again, but I need all the help I can get! So thanks for your prayers, energy, thoughts, love, and support!

- Emily and Pete, Mason and Liam, and Maggie too!

No April Fool's Joke!No News is Good News

Greetings my Stars and Angels: It has been way too long since I posted, but all is well!!

I started writing this when I was watching a bit of the crappy Academy Awards; Pete had long since gone to bed! It is not three weeks later, March 24, and here is an update on us:

We had a wonderful Christmas with Pete's parents, Sally and Allen, here with us. We shared Christmas Dinner with our good friends and neighbors, the Wiczek family, and we got in some skiing, sledding, ice skating, and general play time as well.

Speaking of skiing, Mason is quite amazing zooming down the hill in great form, making parallel turns and even skiing some black diamonds now! Liam is now skiing on his own (without the harness), and loves to follow his big brother. He has fantastic balance, and it's quite a sight to see them both on the hill.

Here is a photo of me and the boys from last weekend at the Canyons!

My health is well and, frankly, that is soooo fantastic for me, Pete, Mason, Liam, and for our extended family and friends. Pete and I make note of each month that passes without a hospital stay or unexpected visit to the docs. I had another checkup on Tuesday March 16, with blood tests, echo, etc. before and on that day -- docs are pleased with my good health and the lack of any crises. We are so grateful for the smooth sailing and hope and pray that it continues long into the future! Meanwhile, I am making great efforts to exercise, keep healthy and well; keep my family healthy and well; work 3 days a week; cook yummy and healthy food (most of the time!); and have some fun in all this too!

We were able to travel to our beloved Ketchum, Idaho, for President's weekend in Feb. Here is a photo of the boys on skates at the local ice rink. We had a great visit with Scott and Anne Mason, and were able to visit with our friends the Desmonds and the Gilmans too.

In the first week of March, the UTAH (Utah Transplant Affiliated Hospitals) Cardiac Transplant Program celebrated its 25th Anniversary!! The four hospitals (Univ. of Utah, VA Medical Ctr., Primary Children's Med. Ctr., and Intermountain Med. Ctr.) that collaborate to make such a successful cardiac transplant program here have performed recently performed their 1067th heart transplant! I was fortunate enough to have participated in a press event at the VA on Thursday morning, Mar. 4. There was a photo of Liam and I (and others at the event) in the Salt Lake Tribune on Fri. March 5. article in attached link. On Sat. night 3.6, we attended a large dinner downtown that celebrated the transplant recipients, the donor families, the doctors, nurses, staff, hospital administrators, and the hospitals themselves! Amazingly, the first two recipients who received their hearts in 1985 were present at the dinner - one is now 43 and one is in his 80s! Thanks to the members of our "Utah family" who could be there with me and Pete.

Every day I wake up and go to bed thinking of my donor and his family. The generosity of their gift never ceases to amaze me. I also recently spoke about my story and the importance of organ donation at a women's organization of which a friend is a member. And I hope to do more of that in the future (a senior center has asked me to speak in April). It feels good to spread the word about organ donation.

Thanks to all for your continued love and support,

Emily, Pete, Mason and Liam

Luckily not a repeat!

Greetings my Stars and Angels:

Well, it has been another interesting last 24 hrs.! Yesterday morning, around 10:30 am, I began experiencing intense abdominal pain. It was eerily reminiscent of my experience last April 29 and 30, when I had a twisted large bowel (cecal volvulus). To cut to the chase (not my strength!), I ended up in the ER by Friday around 1pm, spent the next 8 hours having tests (abdominal CT scan, echo, chest xray, lots of blood drawn, etc.), and then was told by Surgery and Heart Transplant folks that the CT scan was clear, so no surgery required and I could go home, but those folks and the ER docs suggested I spend the night in the Emerg. Dept. "Extended Care Unit." My white blood count was high, so they wanted to monitor me & recheck that blood test in the am. So, I stayed. It was uneventful, slept okay, pain has improved but has not gone away entirely. My white blood cell count was a bit lower this morning, and I am otherwise stable, so I was discharged around 10 am this morning! We had planned on taking the boys this morning to get their second H1N1 flu shot, so Pete did that while my dear friend Vonnie retrieved me from the hospital and drove me home -- thanks again Von! I've been taking it easy since I came home. It is snowing now and Mason and Liam just skied in the backyard a bit -- Mason taking a "jump" off the new stone wall back there! They had a blast. We were scheduled to go to a holiday party tonight -- and though we are not going, we are still having the babysitter come to help (plus we and boys are excited to see her!) tonight. I am moving, but slowly and just want to take it easy. I will go back to the hospital for follow up with the Tr. folks on Tuesday (assuming nothing emergent happens before than!).

Thanks for your interest, love, and support!

Peace and love,

Em, Pete, Mason, and Liam

On the mend

Just about my bed time . . . but I have been remiss in not posting an update. I am home and recovering well from the surgery. Went back in yesterday for follow-up appts., echo, chest xray, appt. with Surgeon and Cardiologists/Tr. team. Everything looks good. Only a small amount of fluid on top of heart, which makes sense since the new "window" is on the bottom of the pericardium. Nothing of concern to the docs. The surgeon took out one stitch from where the chest tube/drain had been removed before I went home last week. Everything appears to be healing well. I am taking this week off work too, as I am quite fatigued in the afternoons and very very foggy-brained! Pain and tenderness is mostly gone; have not taken Percocet since Sunday, just tylenol now. Not sure if it is now being 40 or the cumulative effect of 4 surgeries with general anesthesia since June 2008 that is causing the fogginess, but my brain is definitely not up to speed yet!! Alas, I am calling it my "anesthesia brain" -- it is a good excuse for not remembering things or knowing what I did hours earlier!

Thanks to all for their prayers and thoughts, love and support, meals and calls, etc. Thanks to my mom for being here, for my Dad for his support and beautiful flowers, and to my dear Pete for managing the home front. And to my beloved Mason and Liam - they handled the hospitalization (without visitation) quite well and were happy to have me come home. Mason asked me to bring him a hot dog and french fries from the cafeteria, but all I managed was some packets of Ketchup (he is quite thrilled with them, all the same!). Liam was content just to have me home. Oh, and Halloween was great fun (see our Knight and Clone Trooper below)! Hope you all had a spooky one too.

Lots of love, peace, and good night,

Emily