Well it's been a while and once again I have a lot to catch up on here.
I fought a round of rejection and won. I was hospitalized for pancreatitis twice. I had an infection in my incision, 80+ staples removed from my chest, my IV line removed and I celebrated my 3 month lung-iversary. I am stronger, breathing better and feeling better than I can ever remember, EVER. Overall it's been a great month!!
So yes there have been a "few bumps in the road" as we all say in the transplant world. Firstly, pancreatitis is a bitch. It felt like the worst hangover imaginable that lasted all day and all night for 5 days straight. Plus I had the misfortune to experience it twice in 3 weeks. My doctors believe they found the cause and it was easily remedied by adjusting my antibiotics. My bout with rejection was more scary than painful. Rejection is not uncommon the first year after transplant and there are several progressively more severe options for treatment. Luckily I responded to the first line of treatment and besides some puffy cheeks I didn't experience any nasty side effects. So aside from setting me back a few weeks on my official discharge date from Durham, my bumps thus far have been easily managed and have not affect my lung performance. I am a happy girl.
Yesterday was big day in my recovery. I spent my first night alone, on my own, fully independent in over 9 months. I made myself breakfast, I took my medications, I fed and walked juju and I even did a few dishes. Such simple, boring everyday tasks that feel so good to do entirely for myself. I thought of this moment from my hospital bed post transplant and it seemed impossibly far away. It still astounds me to think of how much progress I have made in just 3 1/2 months. I have erased over a decade and a half on my lung function. My lungs are performing similarly to when I was 18. And even then I was coughing everyday, tired easily and hospitalized often for pneumonia.
This weekend my NY girls are visiting and I can't wait for them to see me so strong. Like many of you reading this post, they have been by my side through the many ups and downs of CF. For years now my friends have quietly made adjustments for me, carrying my bags, dropping me off, coming home early, helping me with my medications and treatments, and just always trying to make things as easy and as comfortable as possible for me. And now this weekend I can laugh without coughing, I can carry my stuff and I plan to make them struggle to keep up with me! :)
Although my lung function and energy levels are great, the plan for my recovery is still not completely finalized. I may have to have a surgery on my stomach next month to prevent any acid reflux from harming my beautiful new lungs. I have a few more tests on my stomach and will meet with the surgeon to discuss the first week in June. There is also a small amount of unresolved fluid hanging around my heart and lungs causing some concern that it could be infected. So I may need to undergo a needle biopsy to directly test the fluid. Once these issues are addressed I should be cleared to go home, hopefully by early July. I've decided that "home" will be Miami. I miss the beaches, the beautiful weather and the laid back lifestyle. In due time, I will of course come back to visit NYC to do everything and see everyone I love as the new and much improved Gigi 2.0.
Breath by breath, step by step, day by day...
