Saturday, December 5, 2009

Luckily not a repeat!

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

Wednesday, November 4, 2009

On the mend

Just about my bed time . . . but I have been remiss in not posting an update. I am home and recovering well from the surgery. Went back in yesterday for follow-up appts., echo, chest xray, appt. with Surgeon and Cardiologists/Tr. team. Everything looks good. Only a small amount of fluid on top of heart, which makes sense since the new "window" is on the bottom of the pericardium. Nothing of concern to the docs. The surgeon took out one stitch from where the chest tube/drain had been removed before I went home last week. Everything appears to be healing well. I am taking this week off work too, as I am quite fatigued in the afternoons and very very foggy-brained! Pain and tenderness is mostly gone; have not taken Percocet since Sunday, just tylenol now. Not sure if it is now being 40 or the cumulative effect of 4 surgeries with general anesthesia since June 2008 that is causing the fogginess, but my brain is definitely not up to speed yet!! Alas, I am calling it my "anesthesia brain" -- it is a good excuse for not remembering things or knowing what I did hours earlier!
Thanks to all for their prayers and thoughts, love and support, meals and calls, etc. Thanks to my mom for being here, for my Dad for his support and beautiful flowers, and to my dear Pete for managing the home front. And to my beloved Mason and Liam - they handled the hospitalization (without visitation) quite well and were happy to have me come home. Mason asked me to bring him a hot dog and french fries from the cafeteria, but all I managed was some packets of Ketchup (he is quite thrilled with them, all the same!). Liam was content just to have me home. Oh, and Halloween was great fun (see our Knight and Clone Trooper below)! Hope you all had a spooky one too.

Lots of love, peace, and good night,
Emily




Wednesday, October 28, 2009

Recovering

Greetings my Stars and Angels:
Thanks to all for the wonderful thoughts, prayers, boosts of energy, and blessings sent our way this week!

I am now about 2 days out from surgery and doing well.

As I expected, I did not even get rolled down to the OR Monday afternoon until after 4 pm. The procedure itself lasted about 45 min. and I was back in recovery by about 5:30 or 6pm or so.

As I (finally) understand it, the surgeon, Dr. Craig Selzman, made an incision beginning in the bottom inch of my heart transplant scar and continued down the mid-section of the chest about another inch or two (thankfully, the incision does not connect with my more recent abdominal surgery scar, which begins just above the belly-button, so I do not quite have a "full zipper"!!) Anyway, the surgeon removed some of my xiphoid bone/cartilage (the pointy bone that is at the bottom of the sternum and apparently is somewhat analagous to the appendix, i.e., does not serve a useful role in the human body as it has evolved today) so as to improve access to the pericardium to the left. He then essentially cut out the bottom of the pericardium (the sac surrounding the heart), thereby removing about 5" x 2" of tissue. The fluid between the pericardium and the heart itself will now hopefully be draining into the space between the bottom of the pericardium and lung cavities and the top of the abdominal cavity (the peritoneum). This space is called the pre-peritoneum. Apparently, even in skinny me, the surgeon found enough fat and tissue in the pre-peritoneum space that he was comfortable allowing the fluid to drain and hopefully be reabsorbed there (thus avoiding the slightly riskier procedure of cutting a second hole into/through the peritoneum and the diagphragm to allow the fluid to drain into the abdominal cavity). As I recover in the hospital I have a temporary "drain" or small chest tube coming out the bottom of the incision. This tube/drain first drained the post-surgical fluid but, now, appears to be draining some of the fluid from around the heart (difference is the color - no blood in fluid now). The surgeon hopes to remove that tube and drain in the next couple of days and then monitor me for a bit, then will send me home, hopefully by Hallowe'en night.

A piece of great news was discovered during the surgery: The docs used the transesphogeal echocardigram (or TEE -- an ultrasound of the heart from inside the esphogus, in which the echo probe is inserted alongside or through the breathing tube) to look at and assess my heart during the surgery. The assessment showed that my LV is back to 100% function!!! Yippeee, really great news.

I also learned today that the docs (transplant team) do not believe that the fluid around the heart actually caused the LV function downturn in Sept. - they still believe I had a case of rejection, which was treated. Rather, I think their theory is that the complete recovery of the LV function was inhibited by the effusion fluid, as evidenced by no improvement in function from Sept. 24-Oct. 8, and then by improvement in function between Oct. 9 (day 2.5 liters of fluid was removed by pericardiocentesis) and Oct. 13 (day of follow-up echo after discharge, which showed improvement to low end of normal function), to Oct. 26 (day of surgery and TEE results). So, I and the docs are thrilled with that excellent news.

I spent about 4 hrs. post-surgery Mon. night in the SICU (surgical ICU), then they moved me to the Intermediate Care Unit b.c. needed a bed in the SICU. Spent rest of night in IMCU, then moved to the 4th floor, Cardiovascular Med. Unit, where I have been many times before! I moved again this morning from a room with a view of a brick wall to a room with a view West of the Valley and the new snow in SLC! I expect to be here through the end of the week, hopefully home early weekend, but we'll see.

My boys and Maggie the wonder-dog are faring pretty well at home. Thankfully, my mom came in Sun. night and is here until Fri. morning to help. Pete is hanging in there, though he is definitely a bit tired and stressed by my continued health issues and handling all on the home front.

Hope you are all well, and thanks again for all your love, support, prayers, energy, meals, visits, emails, phone calls, etc.

Love, peace, & good night,
Em

Monday, October 26, 2009

Emily is resting uncomfortably

All,

The surgery was a success and Emily is in the SICU tonight. She will be out on intensive care tomorrow and on to the floor.

The boys were amped up when I got home from the hospital but they had a good day.

Bye, Pete

Saturday, October 24, 2009

Heading back for more!

Hello my Stars and Angels:
Just wanted to let you all know that I am scheduled for another surgery this coming Monday 10.26, around 2pm. I will likely be in the hospital most or all of next week. I am not sure of the recovery time and plan after that.

The surgery is what I am calling "Pericardial Window Part II." As you may recall, I had the Part I last Aug. 29, 2008 (the day Sarah Palin's candidacy was announced -- I remember b/c Pete and I sat waiting for the surgery for what seemed like agonizingly long hours having to listen to/watch CNN's coverage of the announcement; suffice it to say, our blood was BOILING!!!)

In any event, the aim of the surgery is to allow the fluid around my heart (between the pericardium and the heart itself) to permanently drain and thus not compress my heart. In short, the surgeons will cut a big (5 in. long x 1-2 in. wide) hole in the pericardium and another hole in my diaphragm (.5 to 1.5 in. in diameter), thereby allowing the fluid to drain into my abdominal cavity, which apparently has a good ability to absorb and process excess fluid.

The docs appear to suspect, though they have not absolutely concluded/told me this, that the symptoms/incident I experienced in mid-Sept. was not rejection but rather were/was caused by the large fluid build up around the heart. The fluid was compressing the heart, thus decreasing the function of the left ventricle and causing "rejection-like symptoms" of shortness of breath, decreased oxygen, etc. This was definitely the reason behind my hospitalization two weeks ago, at which time the pressures in my heart were elevated and my heart rate and blood pressure were high. At that time, the docs drained about 2.5 liters of fluid through a catheter inserted into the pericardium!!! I had symptoms of mild cardiac tampenade, though not all the typical symptoms.

My biggest worry about the surgery is not the surgery itself, but the fact that Mason and Liam will not be allowed to visit me -- the U. Hospital (I think all hospitals in Utah) recently instituted a policy restricting visitors to over 14 years old in light of the high incidence of swine flu in children here. So, my little guys will be missing me, and I them, but we'll make it through. Thankfully, my mother is coming out to help next week, and Pete is the ever-amazing super dad.

Speaking of Pete, he is feeling much better, his teeth are no longer sore, he has temp. caps on them, and he will soon find out if he needs root canals/extractions or can get by with just permanent caps - will depend on whether there is nerve damage to either front tooth.

Meanwhile, this past Tues. night, Liam fell while running and had his first ER experience, getting 4 staples to the back of his head. He was a champ and the whole incident was not too traumatic for any of us. Mason probably was the most upset at the sight of blood! And, we had great service at the new Park City Medical Center/Hospital - only folks in the ER at 5:30 pm at night!

Mason turned 6 on this past Wednesday and is very proud to be a 6-year old now!

Lots of love and thanks to you all for your support, love, prayers, energy, blessings, etc.,
Emily and family

Wednesday, October 14, 2009

No real news!

Just wanted to quickly let you all know that there are no major developments, EXCEPT that I left the hospital after tests yesterday afternoon with a smile on my face -- because (1) I simply LEFT, (2) my echo showed some improvement in the LV function; not quite 100% but on the upswing again; and (3) we are waiting at least until mid next week to do any further surgery; still evaluating the options. I am also looking into lymphatic massage/work as a complimentary process/alternative because one thought is that my lymphatics system does not work as it should (no surprise!) to remove fluid from where the fluid is supposed to be draining out of the peridcardium, i.e., the right lung cavity. Note that the docs are not convinced the "pericaridal window" ever worked properly after its placement last August 29, 2008, and they do not know if the window is even still open.
I am feeling a bit better emotionally; Pete and I both were pretty much at our breaking point this weekend, but things are looking up!
Thanks so much for all your continued love, support, prayers, energy, blessings, hugs, meals, play dates, etc. We sure do need it!
Love and peace, and good night,
Em

Monday, October 12, 2009

Home again, somewhat temporarily!

Good evening my dear stars and angels:

I am remiss in making this posting, but life has been a bit crazy of late. I am home from the hospital!! Yeah, yeah, yeah!!! The docs took pity on me and decided I was stable enough that I was needed more at home and would suffer less stress if I were at home!

Pete had a little incident this weekend when he awoke in the middle of the night to go to the bathroom and proceeded to pass out. He hit the tile in our bathroom pretty hard, but thankfully he *only* banged up his lips, cracked his two front teeth, bruised his face and back and hip. We were lucky it was not worse, but it was pretty scary all the same. He came to on his own, not sure how long he was out. Apparently, this is something that can happen to men after lying prone, getting up quickly, and urinating; then the vegal nerve releases or something, which causes the heart rate and BP to drop, which can make one dizzy or make one pass out. We hope this simple explanation is what happened; It happened about 10 years ago to Pete and once in college (eons ago!), and he has a very low resting heart rate, so it makes sense. FYI, when my sister saw a picture of poor Pete, she joked that she had the scenes and music from Deliverance in her head!

Meanwhile, Liam woke that same morning and screamed/cried "mama come home" for over an hour! So, the docs took pity on me and sent me home.
Unfortunately, the discharge was with the understanding that I will likely be back this week or next (hopefully not until next) for another small surgery which involves draining the fluid around my heart to the abdominal cavity. Currently it drains into the pleural/lung cavity. In case I did not report it to you, the docs removed 2.1 liters (!!!) of fluid from around my heart within the pericardium last Friday. Yes, a crazy amount of fluid, but it appeared to relieve my symptoms of high heart rate, high-ish BP, and the pressures inside the heart normalized after fluid was drained. That is all good, but, yes, once again, my body's reaction to this fluid is exactly opposite of what the docs expect. I do not get the typical "cardiac or pericardial tampenade," which usually includes low heart rate and BP, and is very dangerous, but some combination of typical symptoms but with high heart rate and high BP, which is not good either!
Anyway, the eniga/freak of nature continues to baffle, even with a new heart!

So, thanks again for all your prayers, positive thoughts, love and support. I will keep you posted on the next move, whenever it happens/whatever it may be.
Love and peace, and good night,
Emily

Friday, October 9, 2009

Back at the U Hospital

Good morning:
Well, it is not a bad morning anyway; I am alive and feeling well, well enough. Feel the same that I have felt for the last several weeks since I was last admitted to the U. I guess that is actually the problem:

My echo yesterday morning showed no improvement in the LV function since my last echo 2 weeks ago (and it should be normal by now), and, at my doc's appt. at 1pm, my heart rate was very high. SO the Docs were concerned enough to have me admitted, though they really do not know what is going on.

This morning, I am supposed to have a right heart cath to test the pressures in the heart as well as another pericardiocentesis (removal of the fluid around my heart) by catheter in my chest below sternum (had that last July).

Docs are doing these two things to help them assess whether to do another procedure called plasmapheresis (sp?) which is essentially dialysis of the plasma to clean/remove any antibodies that may be in the plasma. Four weeks ago, I tested negative for antibodies, but because my heart function is still not normal, they are not sure what is going on. Having antibodies present could be a cause of my problems (the antibodies essentially conflict with antibodies from the donor's heart, a sort of rejection), and apparently there can be antibodies present but not detectable on the blood test. Docs are thinking they need to be a bit more unorthodox or aggressive because of the continuing issues. The removal of the fluid is intended to make the plasmapheresis more safe. So, I continue to be an "interesting case" or, as I joke, a freak of nature.

On the personal front, I am totally bummed for myself, but mostly for my boys (big and little). Mason has been having a tough time dealing with my health stuff ever since my last hospitalization 4 weeks ago in Sept. But we are dealing, we are thankful for help from our Utah family, and we'll all be okay.

In case you want to visit or call, I am in room 4106 and the room ph. is 801.585.8355. And I have my cell too. I expect to be here about a week, give or take. FYI, I like to keep my door shut to keep out noise, so don't hesitate to knock!

Thanks for your continued prayers, thoughts, energy, love, and support,
Em

Tuesday, October 6, 2009

Please read!

Hi there stars and angels, friends and family near and far:

My dear friend Laura C. sent this to me tonight. Although it is past my bedtime, I so appreciate its message and sentiment that I want to share it with all of you. I hope you enjoy it/feel it, as I did.

On the more practical front, we are faring well in Utah. First snow arrived last Wed., Sept. 30th, and it has been cold, cold, cold ever since (22 degrees this am)! I am recovering from my rejection episode, and go back to the U. Hosp. for more follow up (echo, labs, doc's visit) this coming Thursday 10.8. Still not feeling 100% but getting closer every day. Hope you are all well and enjoying Autumn (otherwise known as Almost Winter in Utah).

Lots of love and peace, and please read below,
Emily


Today's DailyOM brought to you by:

October 6, 2009
We Are Family
Humanity When it comes to our families, we sometimes see only our differences. We see the way our parents cling to ideas we don’t believe, or act in ways we try not to act. We see how practical one of our siblings is and wonder how we can be from the same gene pool. Similarly, within the human family we see how different we are from each other, in ways ranging from gender and race to geographical location and religious beliefs. It is almost as if we think we are a different species sometimes. But the truth is, in our personal families as well as the human family, we really are the same.

A single mother of four living in Africa looks up at the same stars and moon that shine down on an elderly Frenchman in Paris. A Tibetan monk living in India, a newborn infant in China, and a young couple saying their marriage vows in Indiana all breathe the same air, by the same process. We have all been hurt and we have all cried. Each one of us knows how it feels to love someone dearly. No matter what our political views are, we all love to laugh. Regardless of how much or how little money we have, our hearts pump blood through our bodies in the same way. With all this in common, it is clear we are each individual members of the same family. We are human.

Acknowledging how close we all are, instead of clinging to what separates us, enables us to feel less alone in the world. Every person we meet, see, hear, or read about, is a member of our family. We are truly not alone. We also begin to see that we are perfectly capable of understanding and relating to people who, on the surface, may seem very different from us. This awareness prevents us from disconnecting from people on the other side of the tracks, and the other side of the world. We begin to understand that we must treat all people for what they are—family.



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    Thursday, September 17, 2009

    HOME AGAIN!

    Just a quick post to let you Stars and Angels know that I am, so very thankfully, home again, discharged, released, let out, etc. from the U. Hosp. As great as the care at the U., I rather be home any day!

    My left ventricular function showed some improvement (by echo) so they let me go home. I go back tomorrow am for blood work and then next Thurs. 9.24 for another biopsy. I am on higher levels of immunosuppressants again, and am instructed to take it easy for a week or two. Otherwise normal, just so darn happy and thankful to be back in our wonderful home with Pete and the boys, Maggie, the beautiful fall weather, fresh air, clean comfy bed, hot shower, good simple food, etc.!!!

    Thanks for all of your support, love, energy, prayers, thoughts, blessings, calls, visits, etc. Please keep the positive thoughts going for my LV as it still needs to get back to normal function!
    Lots of love and peace,
    Emily

    Wednesday, September 16, 2009

    washing hands!

    Check out this article from NYtimes.com today. http://www.nytimes.com/2009/09/15/health/15well.html?ref=health.

    xo, emily

    Monday, September 14, 2009

    still at the U hospital - brief update!

    Good evening, my Stars and Angels:
    Sorry for the silence, but it has been a bit of a waiting game, not too much to report. Today I changed my terminology from, "Yes, I am a freak of nature," to the less negative, "I am an enigma, always have been and may always be!

    The long and short of it: At this point, the docs. are keeping me in the hospital for another day or two, maybe the remainder of the week.
    The Cardiac MRI yesterday (Mon. 9.14) showed patchy inflammation in the left ventricle (LV), which is consistent with rejection. However, despite the alleviation of my symptoms from late last week (shortness of breath, sleeplessness, fatigue, slight belly bloating, etc.), the MRI showed that the LV is still not functioning properly, which is not good and not normal if rejection is truly the cause and has been sufficiently treated (Heretofore, I have had excellent, above normal LV function since transplant).

    A couple of explanations: This could just be a "time lag" so to speak, and the docs wanted to give me and my LV another 48 hrs. to respond to the treatment before repeating an echo.
    Could be another unknown cause (that enigma part, remember); I am baffling the extended team of 4 hospitals here (my case was discussed at this morning's weekly meeting of the "Utah affiliated solid organ transplant program.")

    So, despite some additional blood testing to check for antibodies (which can create white blood cells to attack the heart, sim. to rejection), today was really just a hang out day of visiting, talking, walking, showering, and that mindless stuff.

    Tomorrow (hopefully morning) I expect to have another echo to see whether the LV function has improved. Depending on the results of the echo, they may keep me in until Thurs./Fri. for another biopsy (even though the first was negative). Not sure what the course of treatment will be in the event the biopsy is negative again, or even what it will be if it were positive for rejection.

    Another interesting tidbit (and a bit of peace of mind for me): the team assures me nothing I have done caused this; rejection is more common in women than men and more common in young women; I just had been lucky so far in not experiencing it. It is treatable and I expect to make a full recovery so I can be back home, playing in the sun, leaves, and snow with Pete, the boys and Maggie! It just may take some time.

    In the meantime, I am talking to my heart, asking the LV to kindly ramp up back to its great function, doing my own sort of praying and positive thinking.

    Understandably, the docs have put me back on higher doses of the 3 immunosuppressants (and some of the other drugs I had been off since winter (anti-fungal, anti-viral, and anti-bacterial meds). This means I am at higher risk for infection, so we'll be playing that safe, staying away from swine flu & other influenza, and keeping up our great hand washing routine, just doing the best we can to stay healthy. I also will have frequent follow-up care again at the U (more frequent blood tests, echos, and biopsies), for a while anyway, though I am not yet sure of that schedule.

    Pete and the boys are doing as well as can be expected. Of course my dear Pete is doing an amazing job holding down the fort, dealing with the breakfasts, lunches, laundry, soccer, snacks, baths, etc, the mundane and necessary of every day life! We thank you all who have again offered (and brought) yummy dinners for their sustenance and offered all kinds of help.

    Last, but not least, thank you most of all for your continued thoughts, prayers, energy, vibes, love, support -- you name it -- that you send our way!
    Lots of love and peace to you all, and good night,
    Em

    Saturday, September 12, 2009

    well, yes, another bump in the road!

    Greetings to all my stars and angels:

    Some of you already heard the initial news that I have been admitted to the U Hospital, again. Here is what happened, what we know and what we do not know.

    I was not sleeping well last week, but that is life sometimes, right?!?
    So, as scheduled, I flew to Denver Wed. afternoon for a short 2-day work conference.
    Wed. night, I slept poorly, waking a lot, and developed a very stiff left neck. Also had slightly high BP Thurs. am (take my vitals even when traveling!), which was technically ok but high for me. Felt sluggish and tired and "just not right" all day Thursday, but sat through the conference and managed to muster the energy to go to an early dinner with 5 colleagues. Back to the hotel by 8:30 pm for bed, iced my stiff neck, and had a quick hot bath (luxury!). Slept until about1:30-2am, when I awoke feeling short of breath. Sat up, tried to prop self up on pillows, but just could not sleep between shortness of breath and sore neck. Shortness of breath went away when standing, but unlike a rooster or a horse, I cannot sleep standing!
    Thought seriously over the next couple of hours about my options (going to an ER in Denver or skipping day 2 of conference and getting on an earlier flight home). As I did not feel my situation was emergent, I chose the latter, called United and got the first flight to SLC, departing at 8:30 am.
    Arrived in SLC by 10 am, where my dear Pete met me. Called the transplant folks from the airport and went straight from there to the Hospital. They thankfully fit me in; talked/went over my symptoms, checked vitals, then did echocardiogram. Echo showed the left ventricle was weak (pumping ineffectiently), which "in 99% of such cases" is an indication that i was "in rejection." So, next came a biopsy to confirm the type of rejection (vascular or cellular) and degree (severity) (no lung puncture, thankfully!), and then admission to the hospital to begin treatment for rejection. They gave me the first of 3 IV administrations of a super steriod during the biopsy. Slept wonderfully last night, aided by adavan (sp.) (for anti-anxiety and leg tremors that apparently were a side-effect of the super steroid), a sleep aid Trazedone, and exhaustion from several sleepless nights.

    So, today: Slept great. Awoke feeling better, lots better, rested and less short of breath. The pain in my neck (unlreated?) is totally gone, perhaps because of the lortab or perhaps the super steroids. I have now had 2 IV doses.

    Now the crazy part: the docs got the pathology reports from yesterday's biopsy, and came by around 11 am to tell me . . . the pathology of the biopsy was negative for rejection!! Say What??? Yes, it is true. Now they and we are super baffled. We do not know what was causing my symptoms, it is possible that the biopsy results were a false negative, it is possible that the rejection is focused on the left ventricle, which was not biopsied (the right ventricle is routinely the source of biopsies, and biopsy of the left ventricle is a risky procedure they do not want to put me through, at least at this point! I will get the third IV steroid dose tomorrow, and perhaps another echo. Then on Monday, I will have a cardiac MRI to see whether there is any inflammation in the heart. I am not sure yet what inflammation means, if it is there. Another question for tomorrow.

    So, they tell me the side effects of the super steroids are: emtional ups and downs ("going wacko" is what they really said!) and huge spikes in my blood sugars. I have experienced the latter, and definitely a bit of the former -downside only. Definitely emotional, almost disappointed that the diagnosis is not rejection, because, once again, "freak of nature emily" is demonstrating another freakish medical tic. I am glad I feel so much better, so maybe it really is/was rejection. They say they will also do another biopsy within the next week, late this one or early next one. I know I am so fortunate in all that I have been given, all the amazing support and love. Someone already called to bring us a meal on Monday night! I do appreciate all of that, but I am a bit frustrated at the moment as well. I was supposed to go to a conference in Albuqueque Mon.-Thurs. this week, which was an internal Solicitor's Office energy law conference, which should be great and at whcih I was presenting. I am sorry not to be attending now, mostly because I will miss seeing colleagues from all over the country who have been so kind personally and so good to work with professionally.
    I wish you all wellness and peace. Please send your good prayers, energy, and love our way!!!
    peace and love,
    Emily
    Feel free to call my cell or my room (4120). Direct # is 801.585.8369.
    xoxo, Em

    Sunday, July 12, 2009

    another miracle!!!

    Greetings stars and angels, near and far:
    I just had to briefly make a post to share most WONDERFUL news that our friend Jim is undergoing his heart transplant surgery today, as I write! He is the fabulous fellow who has been waiting 3 years + (as of June 12) for a new heart, relocated to SLC from Boise, and has been quite ill the last few months, requiring hospitalization and lots of procedures. He had congenital heart disease (similar to me -- screwy anatomy from birth), and he and his wife Kitty have been through the ringer. I am so very overcome with emotion and joy for them, their families, friends, etc.

    Also wanted to let you all know that we had a very successful and fun ONE-YEAR ANNIVERSARY celebration on June 27. It was the first sunny Saturday of the summer, and it was really great. Lots of great people, food, and fun. And, we raised almost $2,000.00 for Intermountain Donor Services (IDS). So thanks to all who came and enjoyed and donated, and to those who could not attend but donated nevertheless!
    Lots of love and peace,
    Emily

    Tuesday, June 16, 2009

    ONE YEAR!!!!!

    A bit of Red Sox Nation at Safeco Field in Seattle!

    A huge heart greeting to all my stars and angels out there, near and far!!

    Believe it or not, one year ago today, tonight really, Pete was writing from the Univ. Hospital surgery waiting room as I was beginning the 7.5 hour heart transplant surgery!!! As he, his brother Chas, and my sister Kate stayed up that night, the surgeons and nurses were performing a miracle on me. What an absolutely amazing thing.

    I am fighting back tears as I think of all of you who prayed for me, sent me love, light, energy, blessings, etc., and as I think about my donor, Tony, and his parents/family. It was both difficult and wonderful to learn of his identity, when his parents wrote me back just before Christmas. I am now comfortable enough with the fact that he gave me his heart to share this with you now. I thank Tony and his parents every day (morning and night), and I am so very grateful for this chance at life I have been given. To be sure, this last year has not been easy or all smooth sailing, but despite the bumps (even the big abdominal one 6 weeks ago!), I am still grateful.

    SO MUCH MORE GRATITUDE:
    First, I have to say a special thanks and love to my dearest Pete and our two crazy and wonderful boys Mason and Liam.
    Another special thank you to Mom, Dad, Kate, Caroline, Christopher, Christina, Noah, and Wylie, as well as to Pete's family -- Sally, Allen, Chas, Sara, Walker, Reed, Dave, and Carol. Thank you all for your love and support these many months/years!!
    Our deepest thanks and love to our Allie, and her family, as well as to Melissa and Ben and their family for all the amazing support and friendship their two families have given our family.
    A big massive thanks to my doctors, nurses, PAs, MAs, technicians, etc. for all their dedication and hard work and their fantastic care of me.
    I am thankful for new friends such as Kate M., who is helping me regain my energy and has taught me much in the few weeks I have known her.
    Finally, I thank my colleagues and bosses at the Solicitor's Office who have been so very supportive over this last year. Thanks for giving me the time I need to heal, for picking up my slack, and for simply caring.

    A request: I ask again that you direct some of your prayers, blessing, energy and light to my friend Jim Jablonski who just passed three-years of waiting for a new heart and is currently hospitalized and waiting anxiously for a new heart.

    So, on this day, this week, I look back with a heart full of all kinds of emotions, and I look FORWARD to every day I am given on this earth, with a heart ready and willing to live to my full potential!!

    One last note:
    For those of you afar, I wanted to let you know we are having a celebration of my anniversary and fundraiser on Saturday, June 27, 2009. You did not get the evite if you are not local, but we are holding an afternoon open-house at the park one-mile down the hill from our house to celebrate my transplant anniversary and to raise funds and organ donation awareness to benefit Intermountain Donor Services (IDS), http://www.idslife.org/. IDS is the organization that really makes transplants happen (facilitates/coordinates the matching, works with/counsels donor families, etc.) in our region (there is one for every region of the National Transplant list managed by UNOS (United Netword for Organ Sharing)).

    This is from the website: IDS is a "federally designated nonprofit community service organization dedicated to the recovery and transplantation of organs and tissues. IDS serves Utah, south eastern Idaho, and Western Wyoming encompassing 2.7 million residents, 79 hospitals, and 4 transplant centers. IDS performs its procurement role, combined with community awareness and education, with the following goals in mind: To provide high quality organ and tissue procurement services to the medical and public communities we serve. To educate medical professionals and the public sector on the benefits of organ and tissue donation in order to provide, in a sensitive manner, the option of donation to all individuals. To provide an organizational environment that attracts, retains, and motivates qualified employees who are dedicated to our mission, vision, and values."

    Assuming you cannot attend our shindig, I wanted to invite you all to become registered organ donors in the state in which you reside, if you are not currently a donor.

    Also, if you are interested in contributing to our cause, please make a check out to Intermountain Donor Services or IDS, and send to us at 7318 Pinebrook Rd., Park City, UT 84098.

    IF there is anyone local who receives this posting but did not get the evite - I humbly apologize!! You ARE invited and it was simply an oversight on my part. We have invited lots of people, which is why this is an "open-house," and we do not want to exclude anyone!! Please call or email me or call Melissa Wiczek (801.419.1508) or Laura Climaco (435.659.9812) for details.

    Lots of love, peace, and thanks,
    Emily

    Thursday, May 14, 2009

    Free like a bird!

    Greetings from Seattle, where, yesterday late afternoon, I flew like a bird (with the aid of Southwest Airlines) with Pete, Mason, and Liam for the first time post-transplant!

    Thankfully, all my docs (cardiac transplant team and surgeons from Abdom. surgery 2 weeks ago) happily signed off on our scheduled trip to Seattle, what we call the "come full circle" trip -- As you may recall, we were supposed to come here last Memorial Day weekend 2008 but had to cancel because of my cardiac cath/diagnosis and evaluation for transplant! We are even planning on going to a Red Sox game tomorrow night! John Lester is pitching and my sister and husband think it will be a great duel between the Mariners and Sox. Oh Joy (ha, ha!). But, it WILL be joy to be in a beautiful spot in the presence of my hubby who so loves the Sox and baseball. It will be Liam's first game, Mason's 3rd I think. And Kate and Caroline love bball too! Besides yummy beer, Safeco Field even offers fried clams, sushi, garlic fries, and of course, hot dogs!

    In any event, I just wanted to share the great news that I am well enough to be here, so thankful for both my excellent, healthy heart, my recovering GI system, my fantastic doctors, and my family! We went to the Seattle Aquarium this morning to witness lots of neat fish, star fish, seals, otters, coral, etc., and then we had a real heart healthy but yummy lunch at Seattle's renowned Bob's Red Mill where one dines on awesome shakes (coffee for the parents, strawberry for the boys), "boogers, and flies" (burgers and fries, as Mason has dubbed them after one of the Froggy books). Back at the Aunties' abode, Liam and I both had naps (I slept for 2 hours with the aid of Percocet - pain meds are key!), while Pete and Mason rode bikes outside. So glad to be here!!
    Thanks for all your love and support, and have a great weekend all,
    Em

    Tuesday, May 5, 2009

    WIND "breaker"

    Good evening and happy Cinco de Mayo:

    You might be wondering about the title of this blog entry, but leave it to my Dad to crack me up when my abdomen been sliced open and my bowel pulleds out and "played with" -- suffice it to say, it hurts like hell! In any event, I just finished my evening meds with a shot of pain med and benedyrl (to help me sleep), so this will be short.

    I am doing much better now that I have "broken wind" and had a few "movements"! I am eating again after another day of no-food, yesterday, since my belly was in lots of pain and a bit distended. so far, so good with the food. I really was incredibly relieved (no pun intended) to have finally passed gas and pooped. As I said to my sister Kate on the phone last night, "pray for poop like you have never prayed before!" It worked!

    Pete kindly brought me yummy chicken noodle soup tonight. Shea brought the boys to visit in the am, and I took lots of walks and even had my first post-op shower! Mason's teacher Miss Elaine came over tonight to play with the boys and help give them supper and get ready for bed. Apparently, Mason was in complete heaven - he loves Elaine so very very much!

    Yes, it sucks being here, but I am trying to rest as much as possible and heal as best as possible in this environment. I slept well last night, especially after the 1:30am wind-beaking! So, nothing more to report. Thanks to all for your "virtual" support and love and for your calls, visits, and emails.

    Sleep well, and lots of love, Emily
    p.s. Here are before-and after-pics of our adorable boys having received their annual buzz cut this past Saturday, curtesy of Melissa!

    Saturday, May 2, 2009

    So lucky and thankful once again!

    Greetings to all you friends and family!

    First, my deepest love and thanks to my dear husband Pete for once again sticking by my side, for taking such good care of me, for letting me squeeze his hand so very tightly as I was in agonizing pain in the wee hours of Wed. night/am. As you know from Pete's posting Thursday night, I am back in the U Hospital after having had emergency surgery to unkink/unwind my colon/large intestine, which also involved removing/cutting out 17 inches of dead (necrotic) intestinal tissue! FYI, the large intestine is about 5 feet long, so I have plenty left!! According to my excellent surgeons, (Drs. John Langell and David Larsen), I was extremely lucky -- they were able to handle my twisted bowels just in the nick of time, i.e., before my colon/intestine ruptured, which would have made me septic, and having a compromised immune system . . . well, that would have been really really bad!!

    In any event, despite the short-lived but extreme pain and agony of a couple of days ago, and despite having to be hospitalized, I am truly fortunate in having had life-saving surgery once again! I now fully understand why the core of the body is called the core - lots of muscles in there that are sore! And, I now have a lovely scar virtually the entire vertical length of my abdomen! The new incision starts a couple of inches below the bottom of my "heart scar," and travels for 7 or 8 inches. At the moment, the incision is actually partially still open - it is sewn shut in the center but remains open a few inches on top and bottom (the facia is sewed shut but the subcutaneous fat and skin layers are open). They did this to help ensure that I would have no infection between the fat and skin, as the abdominal area had a lot of "murky fluid" in it when they opened me up. Over the next few days, the docs will slowly close the wound by attaching steri-strips to seal the incision.

    I was not allowed much fluid (other than IV fluids) until today (a bit of water/ice chips yesterday) and was not allowed to eat until today, when I began a liquid diet of applesauce, soup, juice, water. So far, so good! Now I await for some of the illustrious bowel activity (sound familiar Barb and Tom?!).

    It is a bit lonely here, but thankfully Pete brought the boys to visit this morning! Of course they had fun playing with the bed's buttons and having a snack of juice and crackers. I feel terribly sad that my dear Pete has to deal with a sick wife once again, but he is strong, we are strong, and we'll make it through! And, once again, the irony of all of this is that my new heart is functioning very well. One of the Transplant Cardiologist's said to me today, "Well, your heart passed a huge stress test with flying colors!" Ain't that the truth.

    Alas, I do not know much yet in terms of the recovery process, except that I will not be able to lift for a while, I will have to be off work for some period of time again, and we will need all your friendship, love, and support over the coming weeks! Thanks to all of you who have already called or sent messages - we appreciate it.

    Thanks for being there for us/with us in the ongoing drama called life!
    Lots of love and peace,
    Emily

    p.s. If you are so inclined, you can reach me on my cell, or by calling the U Hosp. at 801.585.8652 (direct line to my room 630).

    Thursday, April 30, 2009

    Back at the UofU

    Emily is unfortunately back in the hospital this evening after a 2 hour surgery to untwist her colon. The good news is she did great during the procedure with no major complications and no minor inconveniences i.e. a need for a colostomy bag.

    She will be in the hospital for approximately 5-7 days and be fully recovered in 8 weeks.

    Needless to say we are both exhausted(the pain and acute symptoms start this morning at 2am) so this will be brief, but wanted to get the word out to provoke a positive vibe.

    The boys are great, they heard her voice before going to bed, and they are eager to play with the cool beds at the hospital.

    Love, Pete

    Tuesday, March 24, 2009

    Join me locals!

    Hi folks (my stars and angels):
    This posting is purely for locals (Utahns), unless you are so interested you want to travel here for the event described below! I invite you to please join me, Pete, Mason, and Liam next Tuesday, March 31 at an event at REI, and then later at Bryant Middle School. Details/flyer below:

    A woman named Kelly 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.

    Thanks, and hope to see you next Tuesday,
    Em

    Sunday, February 15, 2009

    Happy [belated] Heart Day!

    -- The Foehl Gang on sleigh ride on Dec. 26 (minus Whitney & Chris).

    Greetings to all my stars and angels!
    We wish you a very belated happy heart day/Valentine's Day, and even a very Happy Hannukah, Merry Christmas, and Happy New Year!!!!! We have been a bit remiss about posting, which means that things have been relatively calm and normal. I guess, too calm, so we decided to shake things up a bit!

    This past Tuesday, Feb. 10, I had my 8-mon. biopsy, which went well enough . . . but my biopsies are always a bit difficult and the docs, unfortunately, punctured my right lung again (you may recall this happened on my very first biopsy, June 24, 2008, the day I was discharged from the hospital post-transplant surgery!). Alas, this time it was a complete pnuemothorax (totally collapsed right lung -- first time it was only partial). I had actually gotten all the way home from the hospital and day of appts., when I bent over to take off my boots and felt this sharp sudden pain in the middle of my chest and coughed. I immediately stood up and sat down -- at which point the pain disappeared -- but I called the transplant nurse coordinators. They called me back in about 1/2 an hour, after speaking with the docs, and asked me to come back down to the hospital to get a chest x-ray. So, I drove myself back down, relatively pain free as I was not moving and sitting upright. It was about 3:45 pm at this point. Shea was with the boys, Pete was at work. Dr. Toosi and Shirley, one of the transplant nurses, came into the radiology waiting area within minutes of my having had the xray with grim looks on their faces and asked "How are you feeling?" I knew that was not a good sign. They told me about the lung, and that I would have to be admitted to the hospital and have another chest tube put in to remove the air. It was now about 5:00 pm, Pete got to the hospital shortly thereafter, Pete arranged for the kids to go next door to Melissa and Ben's for dinner, and then for the Winkelmans - mom Patty and daughter Hannah - to put the kids to bed. Shea (our nanny) had to get back to SLC, but she kindly gathered a few items/necessities (my glasses, jammie pants, book, cell phone charger, earplugs, etc.) and meet Pete near the hospital to give us the bag). Around 6pm, I got into a semi-private room, temporarily on 4North, the cardiology floor, where my old friend Bill Wong, who was part of my transplant surgical team inserted the chest tube. This time it went above the right breast, below the collarbone -- really not so comfy. So, I spent 1 night in the hospital and the next day the xrays showed the right lung remained re-inflated, so I was able to go home in the late afternoon on Wed. After being discharged, however, we went to another hospital in SLC, St. Marks, where I got the third of three blood tests called Allomap - it is hoped that this blood test will replace biopsies. The protocol is to have 3 tests the first year post-transplant to establish a baseline. Then, assuming one has no rejections, one can use the blood test in lieu of biopsy. So, because of this latest incident, my doctors moved up the third test to correspond with the 8-month biopsy rather than the 1yr./annual biopsy, and I will hopefully have the Allomap blood test and NO biopsy in April, when I would normally have another biopsy!!! We'll keep our fingers crossed. Another piece of good news is that my biopsy last Tuesday was great -- no rejection. So, all in all, we are well, I am well, and I am thankful this little bump was indeed minor. The hardest part was being in the hospital overnight, not being with the boys and Pete. Pete relayed that Liam was very upset when he could not find me Wednesday morning - the first time he has really had a very visible reaction to my not being home. Thankfully, it was only 1 night/day.
    There is probably lots more to write, but I will just let you know that we are having a good winter. I am back to work part-time, 3 days/week. We had wonderful Christmas holidays with all the Foehls here (14 of us in all) - it was really fun -- hectic but great. Mason, Pete, and I have been skiing quite a bit, and Liam has even been on skis once so far! We hope you are all well, happy, healthy, and enjoying life.

    Here are a couple of recent photos for your enjoyment!

    . . . TWO BIRDS, NO TWO PLANES, NO . . . THEY ARE SUPERBOYS aka Mason & Liam


    Up on "9990" at the Canyons, the peak that is 9,990 feet that one hikes to above the lift and then skis down. A beautiful, fun day skiing with the Wiczeks (photo is Em, Pete, and Melissa, looking West at the Salt Lake Valley. Ben is taking it.) -- Mason and Hanna W. were in ski school, Grace W. was with her ski team, and Liam and Paul W. were home having fun with Sophie Winkelman.