Saturday, January 29, 2011

Amphoteracin

spellling all wrong. 

so on my recent bronch (6 months woot woot), they found a teeny tiny bit of aspirtghillis infection. So, I have to take Amphotericin nebs, which is you don't recall, is the nasty yellow foamy neb from right after tx, that has a weird consistency and sorta sputters out of the neb at the beginning and end and if you're not careful, it stains stuff.

Have any of you taken it later after tx? for how long and what were your side effects? thx!

cg

Wednesday, January 26, 2011

Re: A CF question from another CFer

Little known fact regarding CG: I get a lot of emails. I love it! Keep 'em coming. One writer gave me permission to publish her email and my response, so here goes!

(PS Thanks JK for helping me blind it real good!)

Hi [new internet cf tx buddy!], and nice to hear you. First, let me say that I am sorry to hear that you have been listed for transplant, though it may be the beginning of a new life for you- so on the other hand, congratulations!

Where are you thinking of listing - which hospital?

I had my surgery on 7/27/10, so six months ago tomorrow!  My evaluation was a little different than most because I started the proess with an appointment and basic testing, pulmonary function tests and blood test, etc., and then I became quite ill and the rest of my eval. was pushed along more quickly. Most centers require a lot of blood tests (I had 19 viles at Cleveland Clinic), chest xray, chest CT, bone density scan, up-to-date dental and gyn records for the ladies, and an assessment of your stomach acid issues in different ways. There are probably some other tests that I am not thinking of, but those are the basics, physically speaking. There is a moderate psych exam to evaluate privately if you really want a transplant and if you are a good candidate - for whatever that means. 

Do you have a port yet? If you do, the needle poking will be less, with the exception of blood gases that DO hurt but it is true, you get used to it. If you don't already, I would recommend starting yoga or a meditation/breathing program. It saved my brain a lot of trauma during my tx process.

What are your other questions? I hope you don't mind, I'm taking off your name and posting them to my blog too! 

xo, 



On Wed, Jan 26, 2011 at 10:12 AM,
Hi,

My name is [NAME] and I also have CF. About a month ago, I was told that I also need a lung transplant. Yesterday was my last day at clinic at my current doctors and a nurse gave me your blog to read. I've been wanting to talk to someone who's had the surgery done so I know what to expect.

Well, I can't really find WHEN you had the surgery done (maybe you didn't talk about everything that went on) because there's so much there. (that I'll definitely read when I have more time)
LoL

I was just wondering if you would mind answering a few questions I have.

Well, I haven't had the evaluation done yet and so I guess I'll there.

What all did the evaluation entail for you? I know there's a bit of needle poking and I'm a baby when it comes to that. (you'd think we'd be use to it. LoL)

Hope you're doing well.

Your CF friend,
-[MY NEW FRIEND] 



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