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
ly Perkins is coming to town. She is a heart transplant recipient (1995, I think), and she is the first heart transplant recipient to have climbed major mountains, such as Fuji, Kilmanjaro, the Matterhorn, El Capitan, Half Dome, Mt. Aspiring in New Zealand, etc. She wrote a book called The Climb of My Life, and she is here to promote organ donation awareness. She will be climbing (the wall) at REI on 33rd So. that Tues. March 31 at 3:30 pm, I think (I will be there, maybe climbing though I have never done it before?!), and then Kelly will be speaking at Bryant Middle School at 7 pm that night. See attached flyer and Kelly's website - http://craigandkelly.com/ or http://www.theclimbofmylife.com/ (same site). I would love for you all to attend one or both events, both because I think Kelly will be inspiring and because Organ Donation Awareness is obviously a subject that is close to my heart (no pun intended). We will be bringing the boys to the climbing event for certain, maybe to both.
