A lot of us with CF deal with sinusitis on a daily basis. Some of us pretty much always have a headache. Actually, I'm fortunate to have had only 3 sinus surgeries in the past. I know people in their 20's who have had close to 20!!! I can't complain!
I just went on IV antibiotics in October for my sinusitis. It really helped, like it always does, but they are rearing their ugly head again. My nephrologist says that because I've been on high doses of immunosuppressants and because at the time of transplant, they gave me a medicine that completely wiped out my immune system, my sinuses are flaring up again. I couldn't get an appointment to see my ENT doc until February 3rd, so I am calling my transplant pulmonologist tomorrow to see if he can start me on Cipro, an oral antibiotic that may or may not help. The bacteria in my sinuses is very resistant to medications, so most of the time I have to go on several different antibiotics (usually at least one of these being IV) to work together to fight the infection. We'll see if the Cipro helps.. I really hope it does.
I haven't heard back from my EBV test yet. I think the results are supposed to be back by tomorrow. I'm still very tired, and that of course could be due to my sinuses too.
We took Jason to a German restaurant last night for his birthday (which is Tuesday). It is about an hour from here, but the closest one that we know of. It was awesome! We all love German food. Tonight we are taking my mom (who's birthday is Wednesday) to dinner. Jason will be 35 and my dear mom will be 60! I can't believe it.. she was just 40... uhhh...yesterday? Where does the time go?
8 comments:
Oh, Christy, I know you do not ask for nor for SURE do not want--sympathy
but I have to say to you that I feel truly fortunate to have only the disease of treatable alcoholism, as opposed to CF...all I have to do is DON'T do something. Drink! And then follow a few simple rules for living which most people already follow.
God blesses you, girl, and Jason, and Casey, and your(young!) age 60, mother.
And I bless you also!
I hope you get some Cipro and that it clears up your sinuses!! Cipro is the only oral abx that I am sensitive to...so I completely understand where you are coming from. If Cipro doesn't work...then I have to resort to IV abx too!! Praying for ya!
I understand what you are going through with your sinuses. I've had 3 surgeries and I'm 48, so I'm fortunate that way, but I seem to constantly have sinus pain and migraines. I start Iv's this week and hope that helps. (Orals don't help me anymore).
Do you irrigate? I would imagine you do. That used to help comfort my inflammation so much, but my last ENT didn't like that and wanted me to stop and use nebulized Tobramycin during the worse flareups.
Anyway, I hope that you feel better soon. You sure have been through a lot!
Cipro always seems to kick whatever Reilly has. So far (and hopefully for a loooooong time) she hasn't tested resistant to any abx, but I know the time will come. I hope the doc gives you the Cirpo & helps!
Christy, I don't get it, either. They sent me to an ENT at Vanderbilt that specifically works with their CF patients and he said any "pooling" increases the chance of inflammation and infection. I actually prefer that to neb-ing the abx, tho, so sometimes I just do it anyway. Sometimes I feel like we know more than the dr., when it comes to our own bodies. I use the sterile saline w/ betadine drops in it, when I irrigate w/ my Waterpik.
I agree with Steveroni, my problems (such as hearing loss and weight gain) seems so petty compared to what you have to endure on a daily basis. Thank you for putting life in perspective for me! I am a proud new follower of your blog, I can't wait to get to know you better *smiles* have a beautiful day!!
P.S. Must try a German restaurant one of these days, don't think I've ever seen one!
<3 Martha
I'm so glad you are so honest on your blog. I am learning SO much since I started reading your and Katey's blogs. I learned about the hearing loss, and now sinus problems. What else are the doctors not telling me(a somewhat new CF mom)?????
It makes me wonder.
M
I'm so impressed by you. Thank you for your transparency.
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