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