I just got back from the ENT. My sinuses looked “fabulous” in regards to little to no polyps and all the green mucus yuck. However I have some MAJOR allergy issues going on. He said that my sinuses look blue. I thought that was impressive. I guess the blue is from all the irritated allergy stuff up there. I am in East Tennessee which happens to be the allergy capital of the U.S. You can see the pollen on everything.
I am adding claritin to the singular that I already take. They work differently on the histamine aspect of things. He said, “I know we don’t like to use too much benadryl in CF patients but I think you would notice a big difference.” So I think I will take benadryl before bed tonight. I already took a claritin today and will continue it. He said to give it 5 or so days and I should be able to tell a difference. If I don’t then I will try another allergy med. I told him that I skin tested negative to everything. He said, “so did I but I am deathly allergic to cats. If I walk into a hotel room where a cat was I will end up in the ER. They tested me 2 years later and I showed positive on some things and my blood work was wacky.”
I feel vindicated after the appointment because even though I tested negative to everything I knew there was something causing all of this stuff. I knew I wasn’t crazy. The irritation in the sinuses can and is most likely irritating my lungs, CF and asthma. I told the doc that I didn’t do the rinses 3 times a day like it said but did at least once a day. He said, “I say 3 times a day but will be tickled pink if you do it once a day.” I said, “score!” My old ENT (back in KC) would freak if I didn’t do everything exactly how he said and was very demeaning in the way he spoke to me, hence the reason I didn’t go back to him! This doc is goofy and I love it!
I can now go to every few days on the antibiotic/steroid rinses and if I have a flare up of nasty sinus junk I will increase them. I have not been able to smell since I started the rinses. I asked him if my loss of smell is due to the rinse and he said yes it’s a side effect. He said by decreasing the frequency I should regain my smell. With that said, my husband took my car when I got home and came back in and said, “what did you have with onions?” I said, “tacos…sorry I didn’t smell anything.” Then he said, “did you Lysol the house today?” I said, “yes, our beds and pillows.” I can’t smell ANYTHING!!!! So weird! It is so weird to not be able to smell things. I guess it is a blessing in disguise when it comes to flatulence, bowel movements and stinky boys.
IV update: I am on day 10 of IV cefapime and oral cipro. I will be done with IVs on the 14th. I will be seen in CF clinic on the 16th. My lung functions from March 31st were FEV1 1.37/46%. That is pretty stable. Crappy stable but still stable. Interested to see what they will be on the 16th after 14 days of antibiotics and starting the claritin. I am also taking a few days off of Pulmozyme (inhaled to help thin the mucus to make it easier to get out) to see if it is a possible trigger for my asthma. I have been on it since it was in the drug study stage many many years ago, 1996 maybe. It seems that my asthma has been playing a large part in how I feel and how my lungs are reacting to CF stuff. All of my twice weekly blood work has been fine. Thank you for checking in and all of your support!
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Until next time…