Tuesday, January 6, 2009


1) My port is working beautifully and no more hand IV. I was right - it wasn't accessed correctly. After the TPA failed I started pitching a fit (politely, of course) b/c they were talking removal. The thing is, it was flushing but not giving a draw, so I knew it wasn't "clogged." I ended up suggesting they try again with a 19 gauge needle instead of 21 b/c I had a theory that the needle was too big for the access area on an arm port, which is smaller. Turns out I'm a little bit of a medical/engineering genius if I do say so myself. Who'd have thought?

2) Last night I asked for cough medicine and was presented with...codeine. Honestly. Codeine for a cough? But I was desperate so I took it. An hour later I was lying semi-comatose in bed watching Larry King interview a Scientologist about John Travolta's son. This led me to telephone my poor friend at 1 am to tell her the "hilarious" story about how Larry King had mistook the scientologist's use of the word "thetan" (meaning soul, more or less) for the word "satan" and had asked some question about why it was comforting to believe satan lives on after the body is dead. Obviously the fact that I found this so funny and woke my friend up to tell her about it, even while drugged, cancels out any claim I may have to call myself a genius from the port situation. Sheesh.

3) Today it finally happened: my doctor came in this morning and suggested I need to look into disability. Yikes. But actually I'm really proud of myself. I told her I was already considering a reduced schedule/flex time option and that I was working to come up with a plan I felt comfortable with before presenting the idea to my firm. I asked for her help in crafting said plan. And then I told her in no uncertain terms that I am 27, I love my job, and I am not going to stop working. Not yet, maybe not ever. I know my job doesn't define me, and I DON'T want to look back with regrets that I didn't do enough for my health. But at the same time I don't want to look back with regrets over my LIFE either. So I want a balance, a compromise, and if that means that neither my work nor my doctor is going to be 100% satisfied with my plan, then so be it. I trust and love my doctor, so I was able to ell her that calmly and with some degree of self-control (i.e., without bursting into tears). It actually went over well and she said she would support me in making a plan that I feel comfortable with even though her "official" recommendation is disability. I laughed and told her there was no way I could be a lawyer for less than the time it took me to get through law SCHOOL.

I knew we had made a total breakthrough when she looked at me and said "I do understand how much it means to you, and if you're saying that you understand that it might speed your road to transplant or infection but still feel it's worth it for your quality of life, then I am totally behind your decision." So great to hear those words, even though I do wish I could have avoided the conversation altogether. I guess no one wants to be told they need to slow down, but having a doctor willing to understand that health is not the only factor in life (and CF not the only factor in health, for that matter) makes such a difference. My family gets it too. I'm grateful and a little relieved, now that the dust has settled and I've had a good cry.

4) Hospital food is terrible. Enough said.

Hope everyone else is having a happy and healthy week. I had to cancel a drink date with friends tonight, so everyone have their favorite cocktail in my honor.


  1. What a great post! I seriously was thinking you were a genius after that first point (actually thinking how much I still have to learn in defense of my daughter!), and then I totally laughed at your drugged behavior! Glad you were coherent with your doctor because you are making wise choices-taking charge of your health care and yet making your dr your partner. Love it

  2. Hey Piper - a) congrats on figuring out the port issue. It is so exhilerating (and slightly frightening) when you figure out something that the medical people didn't think of and it happens to work/be correct. Wewt!

    b) double congrats on the successful convo with the doctor about the future and employment and such. I'm also grateful that I have a doctor that's super-agressive and on top of things, but realizes that having a life outside of "patient" is imortant to my overall health as well. As a sidenote, I'd love to chat sometime about how you made it through law school without keeling over, everyone seems to think it will be the kiss of death for me, but I figure worst case, I kick it happily under pressure and filled with knowledge and understanding of legal nuance :o)

    c)Hospital food does indeed suck. Any chance you could have a friend bring you take out and/or order delivery and have a merciful staffer pick it up in the lobby? When I'm actually admitted, I subsist almost entirely on Qdoba, Panera, chinese and chick-fil-a. God bless family (and candy stripers, ha.)

    d) LOVE the sedation story, and double love that you watch CNN for entertainment as well. Hope you start feeling better soon!

  3. Word haha!!!!!!

    Glad the port is working and your DR is on board. There is nothing better in this world (well maybe no CF in the first place haha)!!!


  4. When I first told my doc about the fact that I was dating a fellow cystic, I expected to hear nothing but protest and see nothing but frowns and furrowed brows; however, I was pleasantly surprised when he told me that, professionally, he had to warn me (don't share nebs, etc. - um yeah, we're swappin' spit daily so I don't think sharing nebs is going to be a concern), but that person to person, he would make no judgment about how I chose to measure my quality of life. Interestingly, he said the same thing to me about pet ownership...well, not that I shouldn't share nebs with a cat, but you know what I mean.

    I think you are right about searching for that elusive "balance" - to me it's always been a moving target, but we must continue to aim for it and I admire you for shooting that arrow with such positive force. :)

  5. I'm so glad you didn't let them remove your PORT! I believe we are all PP's in the medical field. PP=Professional Patients!

    Once I was on the airplane sitting next to a medical student you know how we PP's love medical students... Well I asked him some intelligent ? and so he got all interested and asked if I was in the medical field and I told him I was a PP. He looked confused but didn't want to ask what that was so he asked where I studied and I just told him the University of Utah because that is the joint I go to :) needless to say it was pretty entertaining!!