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
Monday, October 12, 2009
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.
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
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.
Lots of love and peace, and please read below,
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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
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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
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
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
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
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