Sinus check up

Finally got these ol sinuses checked out. Doc says they actually look pretty good which surprised me. He said my last surgery (2001) was great and they can still see the windows (holes in the bottom of the cheek sinus that help with drainage) they put in. Although, I do have lots of junk in there. He took a culture and we will see what it grows. In the meantime, I will be starting an antibiotic/steroid spray. If the culture comes back with something other than the usual pseudomonas and/or staph we may have to change the antibiotic in the spray. So no surgery which I was actually thought was a possibility.  The spray will be mailed to me from the compound pharmacy so it will be a few days before I get it and get going.  I should be feeling better 3-5 days after starting the spray.  I guess my sinus “infection”/cold thing I have had going on for the last 2 weeks came at the right time for me seeing him.  I will see him back in a month to get checked out again.

I put off seeing the ENT because I didn’t care for the one my CF doc preferred back in Kansas City.  If I had to guess it has been about 5 years since I have seen an ENT and that was while I was inpatient.  I had a resident doc and he was great.  I told him that I was fine seeing him but not the doc I didn’t care for.  Well guess who had to come “check the residents work?”  Yep, the one I didn’t care for.  That’s when the tears started to fall.  I was not a happy camper but I made it through.  Thus the reason I had not been seen in so long.  Fast forward to now and trying to figure out why I keep needing IVs so frequently.  The sinuses can be one of culprit.  Hopefully this helps.  I know I’m ready to have a longer break between IVs, especially since it is about to be summer and sun time!

Until next time…

1400 miles, car accident & IVs

It was an interesting week to say the least.  Now I will tell you why.  I made a trip to KS because my mom was supposed to have a procedure done for her SVT (racing heart).  I drove 12 hours to KS from TN on Tuesday.  I wasn’t feeling the greatest but I wanted to be there so I went.  I made it there around 6:30pm.  My mom’s nurse called to give her her sputum culture results which was 2 strands of pneumonia at about 7pm.  Her nurse had to notify the cath lab to see if they wanted to proceed.  They started her on oral antibiotics.  The doc called in the morning and postponed the surgery for a week or 2, until she is “clear.”  With that said, it was a good thing they didn’t proceed because she needs time to get better first.  At this point I still don’t feel good.   Continue reading

CF Awareness Month: Nasal polyps

Nasal polyps are very common in CF.  I, myself, have had a number of sinus surgeries to remove polyps.  I have lost count how many surgeries.  During the surgery they go up through your nose into the sinuses and remove all the polyps and make bigger openings if needed.  It is not a fun surgery by any means.

There have been cases where an ENT (Ear, Nose and Throat) doctor has noticed polyps and suggested that the person be tested for CF because polyps are so profound in people with CF.  Then they tested positive for CF.  It is interesting how different signs/symptoms are prominent in some and nearly undetectable in others.  The reason for that is that CF is very unpredictable. Continue reading

Surgery Roll Call

I thought I would share my surgery history. Surgeries come with the CF territory. Some people start life with a surgery and others don’t have any for a long time, depends on the person.

I have had multiple sinus surgeries, I have lost count. My first sinus surgery was when I was 10 and my last was when I was 21. I did have one a year for awhile. During the sinus surgeries they clean out all the infection and polyps (basically a growth in the sinus) that have formed. They also have had to drill holes in the sinuses to help them to drain. Your sinuses are just holes in your head. They are not like lungs that are a sack. Sinus surgery is painful but pays off in the long run. When you have lots of thick bacteria infested mucus in your sinuses it can infect your lungs. The lungs and sinuses like to share with each other therefore it is best to get the sinuses checked out. Some children have been referred and later diagnosed with CF after being seen by an Ear, Nose and Throat doctor due to having polyps in their sinuses. Polyps are very common in people with CF. Sinus irrigation is common practice for people with CF. It is good to rinse as much out as possible and hope that you don’t have to have surgery.
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