Saturday, October 24, 2009
While I am sitting here awaiting the arrival of Mom and Olive (my lil cous), let me talk about yesterday. Zac and I had our post-transplant/directions-after-discharge meeting with Cindy during which I was given some news that brought to light my horrid vanity. I knew that there were going to be some major lifestyle changes, but I did not realize that some of them were lifelong. She informed me that I would never again be able to have any sort of sun exposure - period. I must be completely covered head-to-toe; anything not covered must have at least 50 SPF. SPF? What is that? The most I would ever wear is 6 SPF on my nose! I was 8 months pregnant laying out in the backyard with a water hose! No more Club Sun? I live 28 minutes from the beach! Summertime is for tank tops and flip flops! Just call me Powder (90’s movie reference)!
In addition to the Chief Pale Face revelation, I cannot color my hair for at least 6
In addition to the Chief Pale Face revelation, I cannot color my hair for at least 6
months. Now, let me say at least this one isn’t a one of those life-long deals. But for those of you who know, Cruella DeVille will be making a comeback. Needless to say, I spent my night thinking of all things for which I am grateful: I have all of my limbs; I am not disfigured in anyway; I do have my hair; I have a perfectly healthy, beautiful child; I have a husband who will always love me, hug me, kiss me regardless of ANYTHING, etc., etc., etc. Now I have to let
it go... Moses has to go out as well. This is going to rock the world of His Royal Highness. I was told absolutely no diaper-duty; however, I was able to strike a deal with this one. There was no way that I am having someone at my house 24/7 beyond these first several weeks, so I was told that I could use gloves. Thank you, Lord.
I actually did not balk at the strict diet; if I am going to be deathly pallor, I am going to have to be in shape. I will have to wear a mask for at least the first six months in public, unless it is a very low-traffic area. I cannot be around fresh flowers at all. I also have to wear bug spray nearly anytime I am outside, especially where we live. I have to always wear shoes/slippers/flip-flops, inside or out. That is most of the major stuff. Now, I just have to get used to staying home for the rest of the school year. Dr. Mandras assures me that I will be able to return to work next school year if all goes as planned. She has a former
I actually did not balk at the strict diet; if I am going to be deathly pallor, I am going to have to be in shape. I will have to wear a mask for at least the first six months in public, unless it is a very low-traffic area. I cannot be around fresh flowers at all. I also have to wear bug spray nearly anytime I am outside, especially where we live. I have to always wear shoes/slippers/flip-flops, inside or out. That is most of the major stuff. Now, I just have to get used to staying home for the rest of the school year. Dr. Mandras assures me that I will be able to return to work next school year if all goes as planned. She has a former
patient who is a kindergarten teacher, and she returned to work within that same approximate amount of time. Of course I will have major restrictions, but at least I can go back to teaching in a classroom. Right now I will try to get into some ACCESS classes and tutoring: put the word out! I love tutoring; and I am excited to get into ACCESS classes if I can, especially with no
other classwork to worry about. I absolutely love my job, and I do not want to get rusty.
Dr. Ventura just left the room in his whirlwind of Argentinean-ness in a white cable knit pullover, green scrubs, and black loafers. The first words out of his thick Spanish lips were,
“Hey, Bethany. How you doin'? Shit, guess I was wrong. But, it is to be expected you young, so close to pregnancy, your strong immune system. We have to do all of this IVIG, Rituximab, so on. Everything looks good now, geez. Let’s lower the Prednisone from 40 mg to 30 mg. Ok? You feelin’ ok? Ok? Alright. Well, good to see you, alright.”
I love this man. He is hilarious. If you haven’t read Beth’s previous entry about him, he is the Director of the Section of Cardiomyopathy and Heart Transplantation...top boss. Here’s a link to a video of him on YouTube for a
visual: http://www.youtube.com/watch?v=WlNFiKUMQWI .
The news about the Prednisone is wonderful! The Prednisone is the steroid. It makes me feel very flushed and heavy. I had written about the IVIG and how it gave me flu-like symptoms; the Rituximab did not do that. Yesterday was not
The news about the Prednisone is wonderful! The Prednisone is the steroid. It makes me feel very flushed and heavy. I had written about the IVIG and how it gave me flu-like symptoms; the Rituximab did not do that. Yesterday was not
as bad because I didn’t really have a reaction to it. The difference between the IVIG and the Rituximab is that the IVIG is antibodies from thousands of people and the Rituximab is completely synthetic and lab-created. They both attack white blood cells, but for some reason they affect me differently. Hopefully, I am done with both, and I can leave my tall metal IV friend by my bedside.