Hospital fashion and blood transfusions
Relapse
Day 11
I just went through and read some of my posts from the first time around. I'm thinking I'm here for a bit. Doesn't appear that my numbers start to go up until around day 25 and during that time, I should expect a couple fevers and plenty of transfusions.
Getting platelets today. Which, by the way, thank you to anyone out there that donates blood/platelets. WOW! Talk about an easy way to save a life. I have to have specially matched platelets. The first time I had platelets I had rigors, it sent me to ICU, it was scary stuff. For months of platelets transfusions after that, I just couldn't get transfusions to stick. It was like my body was eating them as they would go in. I would get down to 3, they would transfuse, I would be at 1. How is that even possible? Fast forward, a very amazing nurse listened to me and my experience and suggested HLA matching. That weekend the blood bank did their thing and found me matched platelets. I haven't had an issue with transfusions since then. When I was admitted this most recent time, I just reminded them that when I need platelets they need to be matched. The doctors contacted the blood bank and the blood bank said they would start contacting the people that I was matched with last year to hopefully come in and donate. What?? That's crazy to me. I mean, it makes sense, but wow. I wish I could just meet these people and tell them a huge THANK YOU!
Today, I'm spending the day chatting with ATT. UGH, seriously, I think we have issues with them every time I get in the hospital. But, at least I have the time to deal with it here. HA. So, here's what happened. I was trying to watch the Flatirons Church live stream on my laptop and the slow hospital wifi kept cutting out so I thought, I'll just tether to my phone. Perfect. So I do that, I know it's going to use data, but I never use data, so we'll be fine. It's not that much. Well, oops. My dropbox was syncing like a million files for some reason and we are now at 14.7gb of our 15gb of data for the month (this was Sunday, so it was the 3rd). UGH. LAME!! So, now I'm just hoping that ATT can just throw me a bone. Give me 10gb of data or $100 or something. I mean come on. And, yes, for all of you wondering, we are considering an unlimited data mobile plan. We're starting to look at Xfinity. What is the best mobile option out there right now? We've been with ATT so long!!!
And ladies, marry a guy that tells you that you're beautiful even at your worst. Thanks Zach for my lovely hall walking pic.
Will update again soon.
Love & Light.
😷😘 michelle
And the medical details for those that just like to know that kind of stuff:
Original Diagnosis | September 1, 2017
NPM1 positive FLT3 negative
Remission Achieved | September 19, 2017
Last consolidation chemo | February 16, 2018
7+3 with Cytarabine + Idarubicin and 4 rounds of consolidation of high does Cytarabine
Last Biopsy | April 5, 2018
Complete remission, no sign of NPM1
Relapse | February 19, 2019
Monthly blood labs on February 14 showed blasts, biopsy confirmed relapse with mutation of Flt 3 positive
CLAG-M chemo | February 22, 2019
Rydapt pill | to start hopefully today March 4, 2019
Day 11
I just went through and read some of my posts from the first time around. I'm thinking I'm here for a bit. Doesn't appear that my numbers start to go up until around day 25 and during that time, I should expect a couple fevers and plenty of transfusions.
Getting platelets today. Which, by the way, thank you to anyone out there that donates blood/platelets. WOW! Talk about an easy way to save a life. I have to have specially matched platelets. The first time I had platelets I had rigors, it sent me to ICU, it was scary stuff. For months of platelets transfusions after that, I just couldn't get transfusions to stick. It was like my body was eating them as they would go in. I would get down to 3, they would transfuse, I would be at 1. How is that even possible? Fast forward, a very amazing nurse listened to me and my experience and suggested HLA matching. That weekend the blood bank did their thing and found me matched platelets. I haven't had an issue with transfusions since then. When I was admitted this most recent time, I just reminded them that when I need platelets they need to be matched. The doctors contacted the blood bank and the blood bank said they would start contacting the people that I was matched with last year to hopefully come in and donate. What?? That's crazy to me. I mean, it makes sense, but wow. I wish I could just meet these people and tell them a huge THANK YOU!
Today, I'm spending the day chatting with ATT. UGH, seriously, I think we have issues with them every time I get in the hospital. But, at least I have the time to deal with it here. HA. So, here's what happened. I was trying to watch the Flatirons Church live stream on my laptop and the slow hospital wifi kept cutting out so I thought, I'll just tether to my phone. Perfect. So I do that, I know it's going to use data, but I never use data, so we'll be fine. It's not that much. Well, oops. My dropbox was syncing like a million files for some reason and we are now at 14.7gb of our 15gb of data for the month (this was Sunday, so it was the 3rd). UGH. LAME!! So, now I'm just hoping that ATT can just throw me a bone. Give me 10gb of data or $100 or something. I mean come on. And, yes, for all of you wondering, we are considering an unlimited data mobile plan. We're starting to look at Xfinity. What is the best mobile option out there right now? We've been with ATT so long!!!
And ladies, marry a guy that tells you that you're beautiful even at your worst. Thanks Zach for my lovely hall walking pic.
From Zach's instagram: THIS WEEK ON HOSPITAL FASHION: Michelle is sporting a mask by Halyard Medical, Empowered Coffee cup by @miir, Sweats by Nike and Knitted “Back to the Future Nike’s” by @fuggit This is how you wear induction chemo well! #leukemia
Will update again soon.
Love & Light.
😷😘 michelle
And the medical details for those that just like to know that kind of stuff:
Original Diagnosis | September 1, 2017
NPM1 positive FLT3 negative
Remission Achieved | September 19, 2017
Last consolidation chemo | February 16, 2018
7+3 with Cytarabine + Idarubicin and 4 rounds of consolidation of high does Cytarabine
Last Biopsy | April 5, 2018
Complete remission, no sign of NPM1
Relapse | February 19, 2019
Monthly blood labs on February 14 showed blasts, biopsy confirmed relapse with mutation of Flt 3 positive
CLAG-M chemo | February 22, 2019
Rydapt pill | to start hopefully today March 4, 2019
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