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