Home again!

Greetings on this lovely Thursday afternoon in September:

I have been remiss in not sending out an update sooner, but I am thankfully home again from the hospital, as of Tuesday evening around 7:45 pm. I am feeling pretty well and almost 100%, and am especially happy because it is just gorgeous late summer/fall weather with lots of chill in the air!

In any event, I barely escaped the claws of the hospital on Tuesday afternoon!! That morning I was told I could go home that afternoon, would probably "get out" around 4 pm, but needed an echo (echocardiogram is the ultrasound of the heart) first. I waited all day for the echo, the test by which one can see if there is fluid in the pericardium surrounding the heart and measure heart function. The echo tech finally came at about 4:10 pm, and the echo showed fluid still around the heart (after many years of watching these things, I can read it fairly well - at least I can tell what is tissue, what is fluid, and the major anatomy of the heart).

"MORE FLUID?" you say to yourselves, as I asked myself -- wasn't the surgery Emily just had meant to drain that fluid and prevent if from reaccumulating? YES is the answer (and during the surgery they drained about 1 liter of fluid) . . . but I guess it is not that simple!

After they (the fellow/resident) looked at the echo around 5:30 pm, they came to my room and said "the effusion appears to be at the same volume as BEFORE the sugery Friday, so we want you to stay an extra night." Of course, me being me, I flipped, got a wee bit angry, and told the fellow and resident what the surgeon and cardiologist had said earlier in the day - there was no medical reason for me to stay. I asked them to call the surgeon and the cardiologist, which they did, and then came back and agreed there was no medical necessity for "holding me" another night, nothing they could/would do that night, especially since I was feeling fine and asymptomatic.

SO, we got home a little before 8 pm, thankfully! Ate dinner, put the boys to bed, went to bed ourselves. Need to insert a HUGE thanks to Katherine and Roger for having Mason over to play with Owen (and feeding Mason a yummy dinner) while Liam and Dada picked me up at the hospital!

Needless to say, I was extremely frustrated at the news I had received as I was discharged. I am still frustrated but a bit less so, having enjoyed the freedom and luxury of being home, wrapping my arms around my boys and my hubby, eating normal good food, and sleeping in my own bed. Yesterday I spoke with my awesome nurse transplant coordinator Shirley (we call her Shirl the Pearl), and she also helped ease my worries, agreeing that I had some great questions that needed answers and that I should ask the docs on Tuesday 9.9, when I have my next follow-up appts. with them and biopsy.

Though I still don't have all the info., here is my basic understanding of where things stand presently: the surgery does not appear to have worked, at least not as they would have expected; fluid may be draining out the "window," but at a slower rate than fluid is accumulating. I don't know why the window is not working, if it really is not working at all, if the fluid effusion is actually at the same level as it was pre-surgery last Friday, why the fluid is accumulating, what the next steps are in diagnosis, treatment, etc. I will be asking these questions next Tues. at my appts. with the Transplant team and surgeon, as well as whether there are other professionals/experts they can consult with since this effusion problem seems to rare/uncommon. In other words, I now need to pursue some sort of second opinion, whether that is through a phone consult, email, or just getting my doctors to agree to talk with others in the field -- not sure what course that will take at this time.

I have been so pleased with all my care to this point, and I know there are lots of things/questions the medical profession cannot answer, but I at least need some more information on this effusion issue, since the doctors were concerned enough last week to do surgery so that I would avoid "falling off a cliff and harming my new heart." We all know that I what I want most is to take care of myself, of this gift of my new heart, so that I will be around for a long time to come. That is why I consented to the pericardial window surgery in the first place.

This may sound weird, but this bump in the road has probably the toughest so far, in part because this was definitely my worst hospitalization in terms of pain and nausea from surgery, anesthesia/pain meds, and knowing that i may have gone through all of that for naught, coupled with the additional stress of child care: we had to fire our new nanny last Saturday (she had worked for only 2 weeks - lots of small issues/long story not worth repeating here!). The good news is that we have already found someone (2 part-time people) to take care of our beloved boys! And it is also a reminder of how fortunate we were this summer to have Allie at our beck and call, to be there ANY time and ALL times that we needed her for our boys. We miss her so much!!!

Ironically, in all the time I spent interviewing people in July to start in early August when Allie had to leave to go back to college, I never interviewed one person as qualified or fitting as these two people we now have!

So, I wish you all the best, we appreciate your love, support, and continued prayers/energy for us, and hope you have a wonderful September!
Lots of love and peace,
Emily, Pete, Mason, and Liam