Boho Chic

 

Hey friends!

 

     This weeks has been crazyyy busy and long! Thankfully it's Wednesday and we only have two more days until the weekend...WOOHOO! I had my usual bi-weekly ECP treatment for my Graft vs. Host disease today and yesterday.  The treatment used to take up to eight hours each day (yes you heard that right 8) each day, and I used to have to go every week. Thankfully I got a new high flow line in my chest in stead of the regular broviac which cuts the time down to only about 2/3 hours! Can you say Hallelujah?? When you're already there all the time, the last thing you want to do is spend MORE time at the hospital!

Kind of going along with that, I got a chest CT today to make sure I don't have pneumonia in my lungs. I've had a terrible cough and cold over the past month and especially the last week, and it's kinda just kept me down. When you have no immune system from transplant, something as simple as a cold can take ya to the floor and make you so sick. You have to be so cautious. My numbers are still low which is so disappointing, but the arenespt shot is keeping my hemoglobin at bay so that I don't need a red cell transfusion. My body has built up so much iron over the years and years of transfusions that I have iron overload and my organs are getting damaged. They're just trying all that they can to not transfuse me and give me this shot to boost my numbers so hopefully one day they can phlebotomize. My IGG numbers are also super low this week, which explains why I feel kinda crappy, so I'll get IVIG either Friday or Monday! ( yay iv Benadryl) haha I'm such a weirdo...sorry mom I had to add it! ;) You gotta have a little fun in all of this, right?

 

 

 

     Now...the fun stuff! After the hospital, my mom and I stopped by the Biltmore fashion center for a little lunch and for a little photo op. Anddd maybe a few stores or two. It was such a nice day.

On days I go to the hospital, which are most days, I like to dress comfy...but I also like to dress cute. Hey "when you dress good, ya feel good". It's the truth. There are so many days were I just force my self to get out of bed and put on clothes, otherwise I'd be laying around in my pj's all day.  (Which I sometimes do lol). I love to layer things up and bundle, and this cute dress was perfect. I threw a green jacket and scarf over it, a pair of tights, some boots and there you go! Also, you could wear this dress in summer as a cute swimsuit cover up or just as is. I love, love, love the cute bell sleeves. They give the dress it's own little flare.

 

Hope you all have a wonderful week!

 

 

Dress: American Eagle

Jacket: similar at f21 

boots: Norstrom (lucky)

   

And so it begins…

//Hi friends//

This week has been very long and somewhat exhausting, so that's why I haven't been on this week. I spent most of my time at PCH and at home not feeling well, but I did have some fun times. 

Last Thursday, my aunt Lacey came into town and we had a lot of fun. Since I'll need a a sterile environment to come home to, a few of my aunts, uncle, and granny were able to come home and help us start cleaning and re-doing rooms. Thank you so much, you guys. 

Monday, my favorite day of the week (missionary Monday), I got a special picture from my brother all the way from Africa!! Made my whole entire week! I love and miss him so much! 

…

I've started the pre-transplant work up, which is basically a whole bunch of tests/appointments to make sure my body can handle what it's about to go through with the transplant. I started Wednesday. That day I had a GFR nuclear med study of my kidneys, CT scan, X-rays. The GFR test took ALL day because they had to check my blood about every two hours after they had injected dye. Really thankful for my awesome mom to help the time pass a little quicker. We've gotten really close because we're together basically 24/7, she's like superwomen….simply amazing. Thursday, I had to go back to East Valley clinic for IVIG and a port re-access. I also got a few shots, which kinda sucked but my nurses are bomb and made it a little less painful. Friday, I went back to main campus for more tests: audiology, pulmonary function tests, and an echo and EKG. My sweet friend Meg came along for the whole day, She made it a little easier and we had lots of laughs. Thanks Meggy, Love you! I think my mom and I should just get a job there, why not get paid while we're already there? I mean we already know basically all of the staff, LOL! 

Thank you all so much for the love and support!!

#KinCanKickIt