Thursday, January 15, 2009

Duke appointment

I saw my transplant pulmonologist (lung transplant doc) today at Duke. It's the first time I've seen him since before my kidney transplant. My lung function studies were a little lower than they were last time, and he is thinking it's because of my sinuses. For post-lung transplant patients who have chronic pseudomonas in their sinuses, it is crucial that we keep it from draining to our lungs. Obviously, if your sinuses are draining, you can't help but get some of that gunk in your lungs, but they want us to do the best we can at keeping it from flaring up and draining. We do this several different ways... irrigating the sinuses, using sinus nebulizers, going on antibiotics when you have a flare-up, and/or having sinus surgery. I have been taking oral Cipro, an antibiotic used to treat pseudomonas for a week now. I see some difference, but my doc isn't convinced it's going to do the trick. My ENT and pulmonologist discussed me having another sinus surgery last year, but chose to get me through kidney transplant first. My doc today told me that he is thinking I'm going to need it done soon. My ENT (who I see on Feb 3) doesn't like to do sinus surgeries in the winter time. He prefers to wait until springtime when the humidity level is up. My doc today told me that if he opts to wait that long, I will probably have to go on IV antibiotics before then to take care of this flare-up. The problem with me going on IV antibiotics of course, is that I have to be desensitized to ALL IV antibiotics, since I am allergic to them all. That requires an allergist consult, a hospitalization, and of course the risk that I will have an anaphylactic reaction to it. I am going to stay on the Cipro until I see my ENT, and we will decide the next course of action then. Again, this next sinus surgery will not be an easy one. They will cut up under my upper lip and go into my sinuses that way. It's a very painful surgery.

My labs looked good today, and so did my chest xray. My doc told me that the EBV test I had done 2 weeks ago showed a low level, but not a level to be concerned about. He also said the "knot" on my arm indicated some kind of trauma/hematoma, so again, nothing to worry about.

Because of my sinuses flaring up, my pulmonologist is all in favor of me lowering my prednisone quickly. I am going to call the nephrologist tomorrow and see about lowering my dose again. He says the quicker I get to 5 mg/day, the better.

Jason is working this weekend, so Casey and I are going to have a "girl's weekend". I'm sure it will involve shopping, movies, and cooking, but not sure what else. :)

10 comments:

Carrie said...

Well having to have the sinus surgery would stink but if in the long run it helps you than I guess it's a good thing. I will tell you that you cf folks amaze me in every way. Your weekend sounds fun....don't you just love those mother/daughter weekends? I do too!

Genevieve said...

Praying honey, you recover very soon!

OceanDesert said...

Ugh.. I hate that dang Pseudo!! Have they put you on Colistin? I am on it every other month.. to help prevent Pseudo overgrowth...

Lemme know how the "Fresh" stuff works for ya!! I applied it twice a day and saw an improvement within 10 days!... awesome!

Rebecca said...

I am so sorry to hear you are having sinus problems, I am keeping you in my thoughts and prayers. Hoping you kick this without needing surgery!

Aspiemom said...

Could you explain the problem of the prednisone in relation to your sinuses? I don't understand that.

Do you have any other ENT's that you could consider for the surgery, who would do it sooner?

I hope the Cipro does the trick. I know what you mean about the IV abx. I only have one left and it doesn't seem to help as much.

Have fun with Casey!

Christy said...

Thanks everyone!

Debbi, the prednisone makes me more susceptible to infection, which makes the pseudo more likely to flare up. When they lower me down to 5 mg, I will be less likely to have a flare up. My pulmonologist thinks that since I have only received organs from relatives and never from a cadaver who isn't related, that I shouldn't have to follow the standard protocol set for other tx recipients when lowering their prednisone. I have always been very susceptible to infections anyway, so he has always kept my anti-rejection meds on the low level.

I absolutely love my ENT.. he has done my other 3 sinus surgeries, and I really do think if my sinuses look really bad when I see him, he will go ahead and schedule something a little sooner. He and my pulmonologist consult with one another, so that's good.

Thanks everyone for your comments, thoughts and prayers!!

Jen said...

I HATE being on Cipro!! After about a week I am ready to be done.

Good luck at you ENT appt...your going on a good day its my birthday!! :)

Piper said...

Christy, so sorry to hear about the PA. What a bummer that bug is, huh? But I am glad to read that your x-rays and other tests were good. Here's to getting that pesky prednisone down to a more manageable level.

Tracy said...

well i hope you dont have to have surgery again. glad your other test came back good. i hope you can get the prednisone down im still at 60 mil going on 4months now, waiting to hear if my blood work came back good so we can lower it but of course my drs office is slowwwwwww lol. hope you have a great weekend. hugs

Heidi said...

I'm glad the appointments went pretty good. Even with the looming surgery. I'll pray they will be dropping that pred soon.