Greetings family and friends:
This is our new blog to help us communicate with you all while we undergo a new phase in our lives - preparing for and recouperating from a heart transplant for Emily! This news will come as a shock to some of you, but the bottom line is that Emily's heart is beginning to "fail" or wear out after a great 38 and 1/2 years of service. To back way up, as a reminder to some of you, I (Emily) was born with what they term "complex congenital heart disease" which meant that I had a very-funkily structured heart - to put it in strict medical terms! My anatomy in utero did not form properly so I essentially have what is a two-chambered rather than 4-chambered heart. Interestingly, and thankfully, I also developed what is known as a pulmonary stenosis or narrowing of the pulmonary artery from the heart to the lungs. This was a good thing because it has prevented my single ventricle from flooding my lungs. It was a naturally-occurring self-correction or compensation.
So, back to the more recent past, in early April I began to feel very tired and weak. Actually, this was just after ski-season ended! How fortuitous for me. After a visit to my cardiologist here in SLC on April 23 (whom I had seen less than 3 months prior on January 31st for my annual check-up and was pronounced great/status quo), we learned that the tricuspid valve in my heart was leaking a lot more than it had in the past; I was now retaining some fluid around my heart, in my belly, and in my ankles; and a certain protein made by the heart was found in highly elevated levels in my blood. Thanks to good prior care and baseline information, we learned that this all was a likely indication of heart failure. So, my doc scheduled me for a diagnostic procedure on June 3 called a cardiac catheterization ("cath") in which a catheter is inserted in the femoral artery and fed up to the heart, dye is injected, and the docs watch blood flow with the dye and measure pressures in your heart, etc. I also continued to see my doctor every Wed. through May. Most recently, the weekend prior to Memorial Day weekend, I began experiencing a new level of fatigue - my legs were so heavy and weak I could not walk across the room. I visited the cardiologist again on May 21 and was advised not to travel to Seattle for the Memorial Day weekend and to have the cath the next day, Thursday May 22, along with a trans-esphogeal ultrasound (scope and camera down the throat to look at heart). So that is what we did. The cath and ultrasound went fine, I spent the night in the hospital. Friday morning I went "south" so to speak - my blood pressure dropped and heart rate went up. After I was stabilized, this event and the results of the cath convinced the doctors that I should begin to be evaluated as a candidate for a heart transplant. Over the course of the next few days in the hospital, I had a lot of tests, blood drawn, etc., and consults with doctors, social worker, financial counselor, etc. The end result is that I was discharged from the hospital last Tuesday, on a new medicine called Digoxin (which I had been on as an infant through about age 6), with instructions to find a good balance of being as active as possible without wearing myself out. Following some more tests and consults with surgeons on the Transplant team at the U. of Utah Hospital next Tuesday, June 3, I expect to be placed on the "transplant list." Once on the list, I have to wait for a heart from a donor with the same blood type as me and similar body size to me (these are the two critical "matching" factors for heart transplants). I will be wearing a pager and must remain within 1 hour of the hospital at all times. This has all happened very suddenly for us, which the doctors tell us is the way it happens with people with congenital heart disease (as opposed to typical heart disease (hardening of the arteries) - it is a steep quick decline. Amazingly, I feel better than I have in weeks (more energy), thanks I believe to the digoxin, which helps the heart muscle contract, thereby supplying more blood to the system/other organs. However, the reality is that I need a new heart, and I feel more hopeful than anything else about the possibility of a "new lease on life." We are impressed with the quality of the transplant team here, cardiologist, cardiothoracic surgeons, nurses, social workers, "transplant coordinators," etc. Pete, of course, has been amazing - extremely supportive, helpful (as always), and open. But, I heard today from my first cousin once removed, who had a transplant almost 8 years ago, that this can be harder on the spouse than the patient. The boys are doing great - I am thankful they are so young they don't really get the scary part. My sister Kate and sis-in-law Caroline came from Seattle last weekend; my parents came from CT. My mom is still here, and Pete's parents will come next week. My brother and his family are in Turkey, but are sending great Turkish vibes our way. Pete's family is doing the same from Maine and Mass. Our local friends (like family) are being incredibly supportive, starting a "dinner train" to bring us dinners a few nights a week, taking me to Sex and the City premier last night (of course, I have never seen an HBO episode), etc. We have finally hired a house cleaner (super positive unintended consequence!) who will come weekly for a while, and thanks to my dear sister Kate and my amazing husband Pete, we have this blog with which we can update you all and receive your words of comfort and support. We appreciate your prayers, thoughts, and love. We will endeavor to keep you informed of my "condition," and we hope you are all well and enjoy the early days of summer.
One last note - As you can see from the photo above (taken today), I am my same dorky self, and I am wearing a "burnt orange" wrist band that has imprinted on it the same title as this blog. This was all Pete's idea - the message is one of hope and love, praying that I will be fortunate enough to transition from my current 2-chambered heart to a new healthy 4-chambered heart. In the "livestrong" fashion of Lance Armstrong, Pete has ordered a few hundred of these wrist bands and would like to raise money for the Heart Transplant Center here with them. If any one wants a band, please send us a donation in cash (we promise not to embezzle it for ourselves!) of somewhere between $1 and $5/band, plus a self-addressed stamped envelope to which we will add the band and another stamp or two. Pete thought up this fundraising because the medications post-transplant for the life of the transplantee approximates $5,000/month without insurance. There are lots of folks out there without insurance or with inadequate insurance.
Thanks so much & lots of love,
Emily, Pete, Mason, and Liam
