I haven't written a post in oh so many days so here I am writing this one, and it ain't even a poem! OH NOS!
I will perhaps write a poem later today. It snowed here, so ... you know...lots of indoor activities abound.
Not that I get out a lot anyway.
So the news around here is that there ain't no news. I'm not sure why I talk with a twang in my blog and not in real life, btw. Ain't ain't a word I usually say.
Anyhow.... a day in the life of CysticGal is such that I decided to start to email my surgeons because I am so worried sometimes that they forgot all about me, even though of course they cannot forget about me because UNOS is there to tell them when they find the lungs that are for me. But I have this nagging feeling, which Dr. UBird^ tells me is not uncommon, that my tx team has forgotten all about me since my tx evaluation was so rushed while I was so illlllllllll in the fall. I did not get to know them though they got to know me - though I can't remember much of it at all!!
So, here is the email I am formulating today, a sampling of things that are on my mind, a day in the life of CG:
Dear Dr. CJet^, BJet^, and Dr. DJet^,
Happy Holidays! I wanted to email you with a few questions/concerns regarding my tx surgery so that if I "get the call" before my next appointment I'll know that I sent out these questions.
1) What parts of the pre-op procedure are done in the operating room while a patient is awake and/or lucid? I figure that peripheral IVs will be placed, and I have a port. Are there any particularly invasive procedures done will awake? (Other than CXR, blood work, EKG)
2) I am using the _Prepare for Surgery: Heal Faster_ book that is recommended. I am going to bring my "healing statements" with me to the ER to give to the anesthesiologist, for her/him to say to me as I'm going under. I will also bring some instructions for my ICU nurses. I don't know if people really use them or not but it'll make me feel better just to bring them.
2.5) There is a rumor that Dr. CJet takes music requests for surgery. If this is true I will provide such a request. :)
3) So that the team is aware, I am now on 10mg of prednisone every other day, and about 1/2 way through the 12 weeks of Pulmonary Rehab at St. ESaint's^. Making a lot of progress.
4) I would like to keep my port, if possible. Please try to avoid removing it during the surgery.
5) I have begun seeing Dr. BThink^ on an outpatient basis for my psych follow-up.
6) I am taking "Azli" or aztreonem on a month on/off basis in rotation with TOBI.
Thank you for taking the time to review this email. Have happy and safe holidays, -CG
****
So that's the end of that email. What else should I ask my surgeon? What are your experiences with these questions? More later!
CG
^These are pseudonyms created using the super secret CG pseudonym creation calculation.
Hey, CG. As a non-CF person who has some experience with medical stuff, I say you are Right on, Sister. The more reminders the surgeon has of your humanity and personality, the more present you are for him/her. Plus, you need your questions answered, and that is no small thing. You need to know how this person will respond to you.
ReplyDeleteI wonder if your docs know about your blog? They do essential work and you are a vital person. It may be of interest. Or maybe you would consider sending your fave poem? Justa thought.
I am thinking of you so often, and the daughter and I looked at your blog together yesterday.
xxxooo
Good post and letter. But if you *do* write another poem, maybe you should try to use "ain't" in every line. Or something.
ReplyDeleteLet us know what the answer is for 2.5. LOL I bet you'll get lot's of suggestions and requests.
ReplyDelete