What now?

I’m officially on the waitlist for a lung transplant! This post is just a brief explanation of the process of getting a lung transplant.

So after a 2.5-month evaluation, I received a “lung allocation score” of 42.7. This score is built off a variety of things, such as: amount of supplemental oxygen needed, exercise tolerance, weight, frequency of hospitalizations, etc.. The score basically lets doctors know where to place me on the waitlist — the more severe of a need for lungs = the higher the score = position on the waitlist. There are different lists, based on the region you are in as well as your blood type. I am third on the list for people with B-negative blood for UCSF. My hospital shares a list with Stanford though, so there are probably more than two people ahead of me if you add in the people on their B-negative waitlist.

The wait isn’t super predictable. It could be days or it could be months. There is an organ shortage, unfortunately, so I must be prepared to wait a long time. This is why being an organ donor is important, dudes and dudettes!

One day (or night), I will spontaneously receive a phone call saying there are possible lungs for me. A good amount of time, there is what is called a “dry run”: people go in to get the surgery, but it turns out the lungs aren’t good for them for whatever reason (for example, they have some type of damage). But if the lungs are good to go…

The surgery takes an average of eight hours. A big incision will be made at the bottom of my ribs and the lungs will be swapped for some “new” ones. I’ll wake up with a ventilator, chest tubes, and other fun stuff. They want me up and moving about as soon as possible, even hours after waking up. Within 24 hours, the ventilator will be removed, if all goes smoothly. Then it’s a bunch of rehab from there. I should hopefully be out of the ICU within a week, then out of the normal ward a week later. I’ll be getting lots of bronchoscopies for awhile to clean out my lungs and check for any problems.

Thennnn, I have to stay within 30 minutes of UCSF for six weeks. I’ll be going into the clinic a bunch to make sure everything is okay. The goal will be to build up lung strength without getting any infections or having my immune system reject the lungs (yeah, my body can literally reject the lungs since they’re technically a “foreign body”).

I’ll be able to ditch a lot of my CF meds, but I’ll be adding on a big list of transplant meds. Remember, I will still have cystic fibrosis in the rest of my body, and getting a transplant is kind of like taking on a whole new disease because of all the complications it presents.

It will take adjustment and mucho patience, but hopefully I’ll be living better than I have in years at the end of all this. Looking forward to sharing the journey with you all!