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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