Posted 9/20/2015 1:19 AM (GMT 0)
Update - cut and pasted from an email I sent.
Here is a little secret. A beignet is the same exact thing as a zeppole, or the fried dough one can get at a fair. Now, I love fried dough, so it was all good for me, but trust me, the emperor has no clothes when it comes to these famous New Orleans must-have pastries. And the coffee at Cafe du Monde has chickory in it. Which is gross. I've actually been to Cafe du Monde once before, over ten years ago, and I recall how good the coffee and beignets were, but I don't recall the beignets being the same as zeppoles. But Paul and I can say we went to the famous Cafe du Monde.
Many of you know that I refuse to step foot in Walmart, but literally, there was nowhere else to go for what we needed. And the nearest Target is far away somewhere. So I sucked it up and got what we needed. Unfortunately, they are by far the cheapest place to get the little needles and stuff for testing my blood sugar level, so we sort of had to go there or pay three times as much elsewhere.
On day three post transplant, the physical therapist wanted me to get up and walk. I told him, in my stupor, that I was not going to walk - I was going to dance! And so dance I did. I have a photo that shows me dancing with a bag of urine attached to my IV pole. I thought having a baby made me not care anymore as to who saw what. Ha! Try having a liver transplant!! There are times I simply could not do things that I needed to do. Using the toilet (once the foley catheter was out) was particularly difficult in pretty much every way you could possibly imagine. One time, I had to pull the little string to alert someone that I needed help in there. Well here is another "emperor has no clothes" truism - I don't think the string is attached to anything. I could have been lying on the floor with my head cracked open and no one would know and then I would be dead.
I had to use all my energy to cry out "help, help" until someone heard me. Getting help wiping your butt.....oh nevermind.
On day 2 I had that cannula in my nose. Evidently, I would remove it over and over again, and then someone would come and stick it back in my nose. That thing is annoying as hell. Paul informed me later that when I took it out, my blood o2 level would right away start dropping, so clearly I needed it.
I spoke to one of the nurse practitioners about those days, as I do not really recall much from that time. She said I was very funny. Paul told me that I looked and sounded mostly like I was not hopped up on pain meds, and so I must be thankful that I was not like a lunatic, or angry or just plain whacked out.
Pretty much the first thing I remember when I woke up and I could form a thought was thinking that I was still alive. Something like, "Ok, good, I am still alive. That is good." I'm not sure what to make of all this - being sliced in half and having a large, sickly - but still working - organ removed to be replaced by a healthy organ - which may or may not start up when it is sewn into me. I know they have all sorts of things they do to make the whole operation work, but still. It was quite a relief to know I was alive.
Oh, another thing. When I got out of the OR I had a breathing tube down my throat and the ventilator was helping me to breathe. I was asleep at the time, I think for like 12 hours, or something like that. Paul took a picture of me,(I had asked him to prior to surgery) and it is somewhat disturbing to see the tube going in my mouth attached to the big machine. As you may imagine, I was a tangled mess of lines, drains, etc. I wondered how disturbing this was from Paul's perspective, and he said while certainly, it is not the way you want to see your beloved, he knew I was doing well and in fact he felt that I looked very peaceful, and so he did not worry that I was in pain or suffering or anything. I am very relieved to know that he was able to handle seeing me in that condition.
One of my biggest fears about having a transplant was about waking up and still having the breathing tube down my throat. From the beginning of when I heard the word "transplant" and "Susan" in the same sentence, I had heard stories of recipients being awake while intubated, and how you just had to relax and go with the machine. I was like there was no freaking way I was going to be able to do that. Literally, this scared me more than being sliced in half.
Well, in the last few years, I did not hear any stories of being awake while intubated, so I just decided to stop worrying about it - eighteen years of worrying was enough, I thought.
As It turned out, I have no recollection of the thing being in my throat. When they took it out, they told me to cough, so I did, and It was out. It truly was a non-issue. I am thinking now that I probably could have stopped worrying after ten years. But, we all do the best we can.
Lastly, I had a 99.1 fever a few hours ago. For me, that is a fever, not an anomalous reading. I had a small panic, thinking of going back to the hospital, but I've taken it again, and my temp has been 98.something each time. If it goes up to 101, it is back to the hospital for me. I was crying a little, but really, the hospital is where they take care of me and make me better. And poke me with needles, but mostly, I feel safe in the hospital - knowing that I am being watched over and taken care of by professionals, who are being watched over by Paul.
In the morning, my temp was normal. We had a lovely day, mailing off some thank-you cards and a few small gifts for my kid and the pet sitter. Then we went to a diner style restaurant that was on the top ten lists for burgers in nola. It was so pleasant to take our time to do all these things. We both love this city!
I hope we can live here at some time in our lives - maybe summers on long island and winters in NOLA. Once William is in college, of course. Maybe I can force, I mean gently suggest that he look at Tulane or Loyola, or Louisiana State. Heh, heh, heh.
I will try to write more.
PS, I feel GOOD!!
Susan