Tuesday, July 6, 2010

Over the Hump

Clinic again today, and oh! What a difference a week makes!

Seriously, this visit was night and day from the first post-tx clinic a week ago. Same wonderful people, same buildings, same tests, but way less confusion and about 1000 times more energy to get through the day. I never once felt out of my element or overwhelmed, and that's saying quite a bit considering last week's 3-ring circus.

Overall everything went well. PFTs still moving in a good direction (amazing to see after watching them go down for so long!) and I had a good Q & A session with my doctor. Nothing out of the ordinary, really. The best part for me was just walking around that huge medical complex without feeling like I was going to melt into some kind of puddle on the floor. I still haven't fully regained my strength, of course, but I could actually feel the difference between last week and this one, which was a much-needed spirit boost for sure.

Another amazing thing is actually meeting some of the other post-tx patients at Columbia. The post-tx patients go to clinic at different times than the pre-tx patients do, so it's a whole new crowd. Well, "new" in the sense that I haven't met a lot of them in person, but today I was lucky enough to bump into a fellow CFer from the CF boards (who also sometimes reads this blog!). He was one of my major inspirations for pre-tx transplant exercise and recovery, so to meet him was honestly pretty special. It continues to amaze me how vibrant and resourceful the CF community is. Seriously, we are a pretty amazing group of individuals, if I do say so myself. Much as I hate this disease, I feel oddly blessed to be a part of that larger picture.

I have to say again that I love the doctors and staff at my hospital. They always make sure everything runs as smoothly as possible, and they somehow manage to stay so nice in the process. I also got to drop by to see my CF nurse today after my visit with the transplant clinic. It was great to see her, and I felt so encouraged by her comments. It feels amazing to suddenly have people saying I look better, or healthy, or any other of a number of positive adjectives. To have gone from a slow but steady decline to a sudden sense that everything is getting better with each passing day is beautiful.

I don't think I have to patronize any of you and pretend that this process has been super easy. It hasn't, and I know I'm not fully over the hump -- whatever that hump really is. I'm still having a lot of trouble just sleeping through the night and doing normal things like eating on a regular schedule. I'm still trying to navigate this new maze of CF/TX-related diabetes. I'm still a little confused by all my new drugs. But I also have come more and more to recognize that this is part of the experience, and I know that in the past few days I've started to remember why I chose this option in the first place. My joy at some of the little things is returning, and to be honest I think it's even better in a way than the elation I felt immediately post-ICU. Because this time it's a real emotion, and it's life, and it's totally worth it.

Humps and all.


  1. Wait until 2 months post...you will mostly have your meds down and you will feel brand new! Even newer than today!

  2. No patronizing feelings taken. I would imagine I'd feel the same way at a certain point post-tx. I sort of already feel that way just improving the lungs I was born with by gaining so much weight, so I say, "More power to ya, cyster."

    Soon, you'll have a busy law schedule and these days will seem like they were way on the back side of the hump you feel like you're on top of.

  3. I just want to wish you all the happiness in the world. Just found your blog and slowly reading through it.

    I really admire your strength and positive outlook..

    take care. Carpe Diem.

  4. Yes, CFers are an amazing bunch! Glad to hear you're climbing up that mountain! :)

  5. That is so amazing!! i have followed your blog for a while now, and it's so great to hear you are doing great...do you think you might go back to work after all is said an done? Its amazing...i have no words..i'm just so happy for you and i wish you the VERY best!!

  6. Sometimes visits your blog? Sometimes? Hey...I'm a regular, miss. :)

    It was very nice to meet you. It is an odd thing how CF and a double lung transplant can make people feel so connected without ever really meeting them. In a sense, those of us who have been through this automatically know each other. But to actually meet in person is special. I'm glad Lederer changed his day.

    I hope to see you again and catch up on prednisone, insulin, and the rest! PS. your mom and god mother are awesome! God bless them.