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
Wednesday, November 5, 2008
Friday, October 3, 2008
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
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
Thursday, September 4, 2008
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
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
Sunday, August 31, 2008
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.
Friday, August 29, 2008
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
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
Thursday, August 28, 2008
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!).
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!).
Sunday, August 3, 2008
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
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