Thursday, April 8, 2010

Clinic Transplant

So today I had transplant clinic. It was (obviously) the first time that I've been in there since the now-infamous "damp run," so suffice it to say that we had quite a lot to talk about going in. I think everyone was looking for a little reassurance, and maybe just a little bit of an explanation. Mostly, I think we were all just looking to have a conversation -- to go in there and make a little sense of what happened and what is going to happen going forward. And that, friends, is exactly what happened.

Okay, I'm just going to throw it out there: I love my doctors.

Seriously, I love my CF doctor. I love my transplant team. I know that might sound like gushing (um, well, okay -- I know that does sound like gushing, because it is), but I really, seriously, honestly feel that I have one of the best teams out there. Which is not, I should mention, an objective statement on my part. While my hospital might be high on the national list for transplants, that's really not what I mean when I say that I love my doctors. Because let's be real here: there are good doctors everywhere, and there are bad doctors everywhere. So when I say that I love my doctors, I don't just mean that they're good at what they do (they are); I mean that they're really great doctors for me, personally.

To be perfectly frank about it all, I have to admit that I'm one of those patients who gets pretty attached to her doctors. I tend to find doctors that I like and stick to them like glue. But then again, it cuts both ways: when I don't like a clinic, I really, really don't like it. Luckily this has only happened to me once, the result was a frank refusal on my part to so much as step foot in the clinic, and it eventually led to the decision that it was better for me to travel all the way back to my old clinic several states away (as in, a four hour plane ride) than to remain in the care of a team that didn't work for me. Why? Well, simply put, because my health and my relationship with my doctor was worth it to me, and I know I'm lucky to so much as have that option. But I also have to stress one thing, in all fairness, and that is the fact that the clinic I deserted was not, in any sense, an objectively bad clinic. The nurses weren't evil, the doctor wasn't dumb, and the clinic itself was housed in one of the nicest facilities I've ever seen. It just didn't work out for me, and once I knew that, I knew there was no point in trying to resuscitate a dying relationship. And so I opted for a clinic transplant, if you'll excuse the pun. And I never looked back.

Fast forward to now, and, having moved once again and having switched clinics (successfully this time, though I'll admit not without some of my lingering doctor-dependency issues), I now find myself in a transition phase between my CF clinic and my transplant clinic. Currently my CF doctor continues to manage my care, prescribe my meds, and serve as my primary contact for whatever new issues might crop up during this pre-transplant limbo period. On the other hand, I've been seeing my transplant pulmonologist now for over almost two years (that never fails to freak me out, by the way -- how can it have been so long already?!) and I know that, post-surgery, he will be my first-stop physician on most, if not all, major issues. And sure, I'm extremely lucky in that my teams are concentrated at one hospital, allowing them easy access and communication, but I still can't help but feel a little bit of a flutter in my chest when I think about the second, unspoken transplant that's waiting in the wings right now: that ever-important move from one doctor to another.

Luckily, as I mentioned, I love my doctors. (Yes, I said doctorS, meaning both teams in their entirety.) And I know I love my doctors for several reasons that go beyond just the normal "well, they're really good and they know their stuff" type of logic:

1) No matter how sad/scared/tired/sick/upset I feel walking into that hospital, I almost always, without fail, feel BETTER walking out. No, this doesn't mean that they're magic and that they can chant a few words and make my symptoms disappear, but it does mean that they're addressing my feelings, my questions, and my concerns. They listen to me, they offer me an explanation or a treatment or a calming word, and it works. It works because, on a deeper level than just conscious thought, I trust them. And a large part of that trust comes, I believe, from knowing that they honestly want to listen to me and to make me healthy.

2) I know them. This is huge for me, and maybe it's not as big of a deal for other people, but I still think it's worth mentioning. My CF doctor referred me for transplant early. We weren't sure, at the time, exactly how early we were -- meaning that we didn't really know how fast my CF would progress from that point and so had no idea whether we were jumping the gun by a year or 10 years -- but we knew that I wasn't ready to be listed.* As a result, I not only got the testing out of the way while I was still healthy enough to deal with it and not flip my lid (yes, I believe that's the technical term), but I also got some time to get used to this scary "new doctor" presence -- to meet him and to have several appointments to get comfortable before I actually had to commit to something like, you know, getting my lungs removed. Because I personally don't feel that's a great recipe for a first date, but then again maybe that's just me.

(*Oh, and by the way, we ended up being almost exactly one year "early" on the lung transplant referral. My first appointment was May 2008, my CF doctor recommended listing in April 2009, and I was actually listed in late August 2009.)

3) I just follow my instincts. Seriously. The first time I walked onto what would later become my college campus, I knew I wanted to go there -- it just felt right. The first time I saw what would later become my puppy I knew I didn't want to keep looking -- this was my little guy. And the first time I walked into my transplant clinic I was pretty well sure that I could work with this group, and that they were going to help me get my new lungs -- it just clicked, for lack of a better word.

Sure, it made a huge difference that my CF doctor had recommended this center, because I trust her 100%. It also didn't hurt that the transplant team had a great national ranking and overall success rate, because what kind of a fool would I be not to care about those numbers at all? But, quite honestly, I had heard some bad things about the program as well, and I always knew it wasn't perfect. In the end, what made the difference for me between success and, well, "rejection" wasn't so much the numbers or the referral or anything I had read online. It was just my sense that this team and I would work well together, and that I would one day be able to type the words "I love my doctors" with complete and utter honesty.

Which, you know, is a really, really good thing. Because when all is said and done, I would go through a million "dry runs" to find the transplant (and the clinic) that works best for me.


  1. You are one awesome lady. You have such talent in your writings and get your thoughts across eloquently (i used a big word LOL). Its so great you have such a great cf team and transplant team. You will do great when that time comes and they will make sure of it.

  2. You are so right about needing the right connection with your CF and transplant teams. I feel I am also blessed that I am at the right Doctor's for me. I really think that being 100% with your doctors makes this all a little bit easier. Still praying that you get your miricle soon.

  3. Piper, It's so important to like (love?) and trust your doctors... and lets hope it doesn't take a million dry (or damp) runs to find the *perfect* set of lungs! :) ~Juliet

  4. You are so right Piper about the relationship between you and the docotrs and transplant team. I have moved docotrs as l wasn't happy and now have a fantastic doctor and transplant team and after all together as a whole team include me we are all in control of my/your life.

  5. Wow. I love coming to your blog b/c I swear you write exactly what I am thinking but cant get out so nicely on paper. Literally though, see I live 4 hours away from my CF team, currently I see a local pulmonologist for 1-2 month updates and other things like certain tests, vitamins levels blah blah etc etc... he doesnt have hospital privledges though. It is really really expensive to go down to S.F. whenever I need to be hospitalized and so it would be easier if for some of the tune ups we could stay in my town for obvious reasons. Well through the grapevine (we've known this was coming for maybe a year or year and a half) they are trying to establish a CF center, the peds is well on its way but the adults is just starting... (I kinda wrote about this on I have a doctor and a "new" team...

    I am trying to keep an open mind but I LOVE my CA doctors. I go to a smaller (probably even not as good) hospital in S.F. (meaning I dont go to Stanford, the top of the line for bay area and then there is UCSF too) but I can not switch to Stanford, I love the campus, I love (and hate) they see a lot of CF'ers (worry about cross contamination more so FROM me rather than TO me)... jeez... anyways. I love my doctors too and like you said, I think I have a great team, for me personally.

    In fact after talking to my nurse coordinator (while almost crying on the phone) about how my first appointment went with thie "trial" adult cf thing I started crying to my mom haha. Technically I am not supposed to be leaving them, and the hometown team is supposed to be coordinating (asking and double checking w/ CA) but he/ that team didnt sound like they really had any plans of coordinating... I cant help but get nervous.

    Sorry so long, but this was perfect timing for this post girl!

  6. Ps: I started the transplant proces early too (well first talked about starting it May 09) and now I am heading to an "eval" in May 2010 though we dont think I am "sick" enough yet like you might know if you read any of my responses on CL and/or

    Actually the check up before I was told 10 years till tx b/c I was doing really well... then I got b. cep and the next clinic tx was brought up (by a new tx doc but still)

    Sorry to overtake the comments section for a minute ;)

  7. Piper, you are amazing. I love reading your blog. You have touched so many lives and add a light to so many people with CF or not. I know you will find the right pair of lungs and I know your team of awesome doctors will do an incredible job. You are such an inspiration to so many people. I wouldnt be surprised if we saw you on a NY News channel one day talking about your experience...or maybe even a book authored by you about your experience. You are amazing! Thank you for sharing your life with us. :)

  8. With April being National Organ Donation Awareness Month I posted on my FB profile:

    April is Organ Donor Awareness Month! Hit the "Like" button if you are an organ donor! :)

    This should help people realize the importance and remind them when they update their drivers license that the can change their option and become a donor (if they want to).