Irene

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

Wednesday, June 19, 2024 to Friday, June 28, 2024 – Days 21-30 It’s been over a week since I’ve made it to the outside. It’s a big milestone to leave the hospital, and often times we think that the patient is so much better at this point, but that’s the farthest from the truth. I

Big news: Discharge is happening! I know the road is still going to be winding, but I am so happy that I’ll be able to sleep in a real bed. I haven’t been to the outside in 5 weeks!!! Saturday, June 15, 2024 to Sunday, June 16, 2024 – Day 17 & 18 The weekend

Trigger warning: discussions surrounding bodily fluids so if you’re not comfortable with that, move along. Thursday, June 13, 2024 – Day 15 Today was an okay day. A lot of the dead flesh in my mouth sloughed off this morning. It’s great because it means my body is healing, but unfortunately, that also means the

I’ve been thinking a lot about the cost of being sick as a young adult (yes I know I’m almost 40), not just the financial aspect of this whole situation, but the grief that comes from having to deal with something like this my entire life when most others don’t until much later in life.