Irene

Highlights What I’m looking forward to in April The Details

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

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

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

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

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

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

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