Can you believe it?! yesterday was DAY 50! It's crazy to think how much I've been through to get to day 50.
So some things have changed since my last update...my momma has left me and went back home to Kauai yesterday :( she will be missed! I am so thankful to have had her help thoughout this whole journey of mine and I couldn't thank her enough for helping me out. She has done so much for me that all I hope is that my recovery doesn't give her anymore stress! Her place was taken by her mom, Bucha, who will be here for 3 weeks. i am so grateful to get to spend time with her! I don't get to see her very often so what better than to spend time with each other at the hospital stuck in a little room for 3 hours. :) She has already taught me how to knit so I am helping her make slippers for the store! I have to say...I'm pretty damn good at it haha. I just take a lot longer to knit than Bucha so be patient! The slippers will get done...one day. :P
My days at MDA have gone back to 7 days a week instead of 3 because my insurance doesn't cover home health care which is what I need to do my fluids at home. Yes, it is A LOT cheaper to do fluids at home for the insurance company but apparently that doesn't matter. SOOOO LAME! This week has already worn me out and it's only thursday...with no end in sight! In order for me to not come into the hospital everyday I have to be off the fluids completely. The doc is having me increase my magnesium intake more so that I can become less dependent on the fluids here. Bucha asked me why I needed the magnesium and so here is my educated answer for her and anyone else who was wondering the same thing:
Magnesium is the 11th most abundant element (by mass) in the human body. The tacrolimus drug (prograft drug that keeps mine and travy's cells civilized and not start a war against each other) greatly depletes my levels of magnesium which is why I have to come in everyday for fluids (magnesium sulfate). Magnesium is important and essential to all living cells, ATP (energy), DNA and RNA production. Magnesium is also very important to hundreds of enzymes in the body (which are needed for cells, proteins and the like to function). So as you can see magnesium is quite needed for my survival.
Yesterday was EXHAUSTING. It's amazing how just being at MDA all day can wear you out. Me and Bucha got up at 6 am to get ready and head to the hospital at 7 am. I got my labs drawn and we proceeded to the ambulatory treatment center (ATC) where I get my fluids at 8 am. We got a room quicker than usual (sometimes we wait an hour or more for a room) and got settled in. We busted out the yarn and needles (where I would start my first pair of slippers) and I put on Charmed on my Ipad to watch. That part of the day went by fast; got done at 11:45 am and proceeded to go to my next appointment with the GYN which was at 1 pm. We took the shuttle over to Mays clinic and got some food and made it to my appointment early. We continued to knit as we waited for the nurse to bring me back into a room for my check up. I swear, I was knitting ALL DAY and I maybe got halfway done with ONE slipper. My arm was sore! haha.
anyways, I asked my GYN doctor what to expect with my fertility in the upcoming months. She told me that I won't be tested for fertility until 1 year after my transplant date; this is because my hormones will be out of whack for a while and if we want a clear answer of whether or not I'm fertile it's best to wait a year. She was happy to hear that I had three embryos frozen and I was delighted to see that she had a perfectly round belly of her own! She is due in december so I won't see her until after she gets back from maternity leave. I loved seeing her baby bump...it's so cute :)
After that appointment (which end at about 3 pm) we headed back to the main building to the infusion center to get my CVC bandage changed. Since mom left I need a nurse to change it for me or train bucha to do it...so the nurse walked through the steps of how to clean my CVC and put on a new bandage. I have to say...when he took off my old bandage he took off a layer of skin because when he cleaned that area with alcohol it wasn't the stiches that hurt or where the catheter inserts into my vein...it was my skin where the ahdhesive was that BURNED...oh good lord it burned so badly. My skin is still red and angry from where he pissed it off. owie :( By the way, we waited over an hour to be seen so we didn't go back until after 4 pm. After I was tortured and a new clean bandage was put on it was 5 pm and I was ready to be home. We had to wait 30 minutes for the shuttle to pick us up and didn't get home until 6 pm. We were at MDA for 10 hours!! AHHH!! After getting home me and bucha had to quickly run to the store to pick up more yarn and some groceries. My day officially ended at 7:45 pm...and I was beat. I hadn't eaten that much so I wasn't feeling well and I hated thinking that I was going to have to wake up at 6 am the next day and go back to MDA and do it all over again. Luckily today won't be as crazy; no labs, just fluids and then i'm painting afterwards. Bucha stayed home today because she might be coming down with a cold (of all times! she could have waited until after her visit to get sick) so it's best we not be stuck in a small room together for 3 hours.
Last weekend me and cassidy drove an hour down to Galveston to visit my friend Lori who is getting treated at MDA for a different type of leukemia. We all went to the 3rd largest bike rally in the US(the largest weekend rally) and checked out the thousands of bikes that they had there! It was crazy busy with people, shops, food, beer and bikes. Cassidy was kind enough to tell me lots of info about the majority of the bikes there :P I always wonder where he keeps all this info stored in his head...anyways it was a fun day :)
Well I think that's enough for now; my bladder is full from all this liquid they pump into me :D
love you all and please keep checking out the store for more fun items to buy!
-savy
