Two Years Already!

I’m just over two years out from my double lung transplant now and yesterday I had my regular series of tests and appointments at the UW Lung Transplant Clinic. My blood work looks good (we’re mostly looking for high creatinine levels in my kidneys, an unfortunate side effect of my immunosuppressant medications, and can be a sign of rejection). My lung function test (where I blast a breath into a machine and squeeze it all out until my tummy hurts) was the highest it's ever been. Nothing looks weird in my chest X-ray and overall, things are great.

I do have to keep an eye on my bone density levels – another common occurrence post-transplant is bone loss/osteopenia due to the high amounts of Prednisone given to me in the hospital (I went home on 70 mg of Prednisone a day; today, I take 5 mg and will take that for the rest of my life). The hope is that with all the calcium, vitamin D and magnesium oxide I take every day, the osteopenia that has shown up in my hips will stabilize or even improve.

The other interesting-bordering-on-gross thing is that the wire used to close up my sternum is starting to protrude! It’s a bump right in the middle of my chest and sometimes it’s sore. I talked to my wonderful post-transplant doctor, Erika Lease, MD, about this and it’s not uncommon for a body to try to expel the wire and if it becomes too uncomfortable, it’s a minor surgery (day procedure by Dr. Mulligan) to remove it. That sounds almost as yucky as living with the bump so I’ll play this one by ear.

The plan from here on out is to take my twice daily medications, be better about checking my lung function at home (I promise, mom!), keep on top of my dermatology appointments (I’m at a high risk for various skin cancers), eye appointments (I’m at an increased risk for glaucoma), annual exams (really, I’m at an increased risk for all sorts of nasty stuff). I’ll still wear a mask when I’m on an airplane and “as needed.” I will always have monthly blood labs done and every four months, I’ll head into the UW Transplant Clinic for my checkups.

And I’ll continue to participate in the UW Lung Transplant Support Group. The group meets monthly at UW and at least 40 people show up each month, sometimes many more, depending on the speaker. The group also has a wonderfully supportive and warm private Facebook page (moderated by the gentle and kind Chloe, who received her lungs right around when I did so we'd see each other at UW all the darn time). We are pretty evenly divided between those who have received lungs (single or double), caregivers, and those who are pre-transplant (on the lung transplant waiting list or waiting to be listed). The first year after my surgery, I hardly went to the group – I wanted as few reminders as possible of Sick Kim, especially while I was struggling with the lack of muscle, fatigue, side effects, migraines, etc. But now that I’m feeling healthier than I have in a decade, I’m ready to recognize Sick Kim’s role in my past and know that despite the daily reminders of my disease, I’m stable and life is good.

It’s through this group that I've been continually inspired and reminded of how grateful I am to be where I am today. In the middle of rushing from one test to another yesterday, I almost literally ran into a friend I've bonded with through this group. His husband has been on the waiting list for a while and when I saw him, he said they had been there since late the night before and he had just moments ago said goodbye as his husband was being wheeled into the operating room for his new lungs! It makes my eyes tear up and gives me goose bumps to think of this new life they have ahead of them but I also get a pit in my stomach when I think of my 41 days in the hospital and how goddamn difficult they were. And I know that my experience wasn't what most others had and that now I can say it was worth it but whew, it stresses me out to recall some of those memories. But again, I'd do it all over to be where I am today.

Here’s to their new life and a happy 2015 to all!