March Recap (10 months)
Highlights What I’m looking forward to in April The Details
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Transplant
To summarize, 2024 is going to be awful, but it is also going to be beautiful. In between feeling terrible and not wanting to eat, I’ll try and share snippets of how this whole process of a bone marrow transplant is. Some days I’ll be sad that this is the reality of my life; other days I’ll be so grateful that we’ve come so far along in science that this is even possible and that I have the support of family and friends to get through this process. So bear with me on this non-linear journey of healing. <3
February Recap (9 Months)
Highlights The Details 1/30 – I tapered my budesonide from 3mg daily to every other day. I’m excited to continue tapering the steroids so while I am still on hydrocortisone, beclomethasone, and budesonide steroids, the B&B doses have gone down significantly. i’m hopeful that I’ll be able to be off of them by the end
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Happy Lunar New Year! (8 Months)
The Lunar Near Year on the 29th happened to fall on my 8 month-iversary and just in time for my January recap! Highlights I feel like I’ve made a lot of progress health wise but I also recognize that I’m still far away from my baseline. Nevertheless, I want to celebrate the progress, even if
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December Recap (7 Months!)
December Recap & Reflections December was pretty uneventful in terms of health scares, and that is the best news ever! Boring is amazing in my book, at least for this year! It appears that my B and T cells are starting to come in and my B cells might even be making immunoglobulins (when they
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6 Month Milestone & Happy Thanksgiving!
November Recap: I made it to half a year! November was a month of a lot of rest. Now that it gets dark around 4:30 PM PST, it really gives me a good excuse to just not do anything! 10/29 11/6 11/13 11/19 11/27 WBC (4.5-11.0) 5.5 6.3 7.9 8.7 6.9 Hgb (12-16) 9.3 9.3
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Months 4 and 5
I’m at a point in this journey where I can now count by MONTHS so toasts to that! By the end of October, I will be five months post transplant! More Appointments (9/15-9/21) The rest of September was filled with more doctor’s appointments. I saw my pulmonologist at Evergreen. My lung function has been relatively
Home Sweet Home! (Days 82-107)
The last few weeks have been somewhat of a whirlwind. I had a range of emotions the last two weeks in Maryland. I was obviously very excited to be going home, but I was also extremely nervous. The NIH has been wonderful in managing my care and I didn’t have to spend any mental load
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The Slump (Days 60-80)
The hardest part about this transplant journey is how long the recovery process is. In my brain, I rationally know that there are milestones – day 100, 6 months, 1 year, 2 year – but I’m honestly totally over it. I’d like to fast forward to a year from now where I might feel a
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Caregiving
It’s an interesting place to be when you’re an adult and your 72 year old mom is your main caregiver. At this point in life, most other folks are married so they have a spouse that they’re able to rely on for caregiving. I haven’t been quite as fortunate in this department to have a
Hospital Readmission (Days 34-48)
It’s hard to believe that today is day 55 since transplant and it’s the middle/end of July, mainly because this whole month has been an utter blur. After my IVIG on June 27th, I went home pretty fatigued, but nothing out of the ordinary. I’m usually pretty tired after a 5-hour infusion so I thought
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