constant sinus drainage after lung transplant

[randomgirl]

I had a lung transplant (and liver) in late 2012. I had sinus surgery in December 2013. But I have constant mucus buildup and sinus drainage 24/7. I blow my nose several times a day and cough up stuff often that I know is from the sinus drainage. I do sinus rinses at least once a day, every day along with nasonex every day. I don't want this to cause an infection. I feel like this is getting worse and my ENT just says its CF and doesn't do anything about it (although he does clean out my sinuses when I see him). Does anyone have any remedies to decrease the amount of mucus buildup in my sinuses?

 

[welshwitch]

Ack! Yes! I totally have that problem. (But no TX).

Here's what's going on with me: I've had sinus surgery several times due to polyps. However, now my sinuses are clear but my sinus doc says I have sinusitis. What that is is a constant inflammation of the sinuses. It got so bad that my sense of smell became almost non existent.

However, we came up with a solution I'm happy with. A sinus rinse called Budesonide! It's a steroid that I put into my saline sinus rinse once a day. I've been doing it for a couple months now and I really notice a difference! A lot less sneezing, less sinus congestion in the am and my sense of smell has improved.

Good luck and I hope something can be done!

 

[imported_Momto2]

randdomgirl and welshwitch- I have the same problem with my sinuses. History of 9 sinus surguries that never worked for more than a few weeks. And NO sense of smell left. Havent found any med that worked. However, (and I dont recommend this) since my lungs have taken a downward leap and I've been on oxygen at night for the past 9 months my sinuses have been 90% better. Its interesting. The bacteria there must not appreciate a higher oxygen environment. But.....if I stop the oxygen at some point.....good to know about the budesonide.

 

[randomgirl]

welshwitch- I think my doctor said I have chronic sinusitis too. And i have no sense of smell or taste (it's been like that for years). But that's interesting that you mention that because my doctor recently mentioned using Pulmicort in my nasal rinses (which I think is similar to Budesonide). Thank you for your advice .

imported_Momto2- Yep, I've had plenty of sinus surgeries too which don't last long. That's interesting that your lung function has decreased but your sinuses have been better. Thank you for your input. I hope your lung function gets better

 

[vbs420]

I use Pulmicort daily, and then an additional rinse every other day with Pulmozyme.

The mucus production in the sinus will never "go away"; that's what CF does.

Have you also tried Manuka honey? Check out http://www.honeydoc.org for details.

The pre-packaged rinse bottles are a bit pricey, but it's just as easy to make your rinse.

Just make sure your supply of Manuka honey is certified and real Manuka, and not something claiming to be Manuka honey.