Monday, March 23, 2009

Chronic Sinusitis

A few weeks ago, Tricia was diagnosed with Chronic Sinusitis. CFers are notorious for having sinus issues...Tricia has always dealt with minor sinus problems, but it has become increasingly worse over the past few years. She often has a lot of sinus pressure and pain (she complains of her face hurting) as well as headaches and drainage.

She also has developed a cough related to the drainage and often has trouble sleeping because of the pain and coughing. Her unexpected bronch last week was the result of her doctors being a concerned about an infection...we're waiting to hear back about the lab results. She may still be dealing with an active Pseudomonas or she may have a different kind of sinus infection altogether

For her sinusitis, she'll begin a different kind of treatment today, and possibly be placed on a new antibiotic. She had a headache and sinus pain yesterday evening, was up coughing most of last night and is still in bed now.

Thanks for your prayers as we learn to deal with this new part of Tricia's journey...yes, her health issues will never end, but that is something we accepted a long time ago. Also, if you haven't yet, please stop by MckMama's Blog today and pray for Stellan who is back in the hospital.

Thanks.

Nate

51 comments:

Just Courtney said...

Prayers for Tricia and baby Stellan!

Cheryl said...

Praying for Stellan and Tricia.

Didn't she have a bronch recently? Any news yet?

Tricia's used a NetiPot, right?

-stephanie- said...

I'm here to pray.

purejoy said...

praying for tricia and her sinuses. so not fun. and on my knees for that sweet little stellan and his entire mckfamily!

Heidi said...

Praying that Tricia's sinuses will get better. I have been through 5 sinus surgeries, and the problems creep back, even as a post-tx CF'er. I tested positive for pseudomonos a few years post-tx.

Hang in there Tricia. Are you flushing your sinuses. My favorite method is the Neil Med bottle. Maybe they can have you do Tobra in the flushes? Hang in there!!

Anonymous said...

Sounds crazy, but has been very successful in our house of lots of allergy and asthma issues, but have you tried Vicks Vapo-rub on the bottoms of your feet at night? See, crazy sounding, but seems to do something. Just a though. Many prayers coming your way and Stellan's way.

Liza said...

Ditto on the sinus rinses. My 5 1/2 year old wcf has been doing them since he was 4. Amazing the amount of crud they get out.

Hopefully her ENT is being agressive -- I know of people doing nebulized ABX via a sinus nebulizer, doing sinus rinses with abx in them...

liza

Susanna... said...

as always, thanks nate for keeping us so up to date... i have to say it is a priveledge to lift you guys up in prayer every day...my children have a love for your family as well, even though they've never met you (except lily!)...you are ALWAYS in our prayers, and even though we're so far away...we love you so much & offer all the support we can. tricia - i MISS you!

Anonymous said...

Sending out my prayers for Tricia and our sweet Stellan.~Darlene

Emily said...

Praying for your sinuses, Tricia. As a fellow CFer, I also have had sinusitis and sinus issues for years and the pain can be so unbearable! I just had my first sinus surgery (I hope you don't have to do that).

I am praying for the pain to subside and infection to clear up quickly! Praying that the meds can clear it up. My prayers are with you, Tricia.
love,
Emily

Marianna said...

Today I'm praying for Tricia's sinuses and Stellan's precious heart. The Lord has performed miracles on both of them, and I know He can do it again!

Megan R. said...

Thank you for asking for prayers for baby Stellan.

I had LOTS of sinus issues in my early 20's, so I sympathize with Tricia. It's no fun. I ended up having surgery to clear out my sinus cavities. NO fun, but it worked. I would imagine her issues are different though. Prayers coming her way, too!

Paul and Christy said...

I have a bad problem with sinusitus. I will be praying for Tricia.

Pati and Family said...

many prayers for tricia

my heart goes out to stellan & his family,

many many prayers for them all.

Jaime said...

Gosh, Tricia needs a break already! Praying....

erika said...

I saw someone else had mentioned the netti pot. This was the only thing that worked for me when I was pregnant and was so congested. If she hasn't tried it, it might be worth a shot. I thought it seemed wierd and gross when I first heard about it, but I'm a believer in the netti pot!!! I know other sinus sufferers who have even tried surgery and then went on to the netti and that was what ended up working. Just a thought. Good luck and hope you find something that works and Tricia finds relief. Sinus pain is awful!!!
Erika

Kate said...

Throwing my two cents in for a neti pot. After doing that and a warm shower, I get things out of my nose that should only be in science fiction movies. I named the last one.

My mom has similar problems even after her sinus surgery. She has now cut out dairy as well.

Rick Lawrenson said...

check your link to pseudomonas.

Jolanda said...

I know the pain she's describing.. i've been having a lot of problems with it as well.. praying for her, and I hope it'll get better soon!!

not up to code said...

Chroninic Sinusitis sucks Twinkies! I have been living with it for years. I have tried everything! I love my nettie pot. I have even been known to put all sorts of unusual concoctions in my nettie pot - hyper tonic salt solutions, oregano oil, tea tree oil, ponaris (recommended by NASA), and even strong black tea ( which worked). Vivaglobin finally worked for me but you might have to be PID to get that Rxed! My sinuses have never been so clear!

aprilmoonflower said...

I hope Tricia feels better soon and gets good meds that help her with the sinusitis.

aprilmoonflower said...

btw I swear by the neti pot, has she tried that? (I actually have dealt with chronic sinusitis myself and that's the ONLY thing that helped). Just a thought..

"Just Me - NC Beth" said...

Praying for all!

~Beth

I'm not fat, I'm fluffy said...

I just spent the last week (in my spare time) reading all of your blog. I must say that you and your wife are amazingly strong! Since I have started reading the blog I have put you in my prayers. Thank you for teaching me about CF. I am going to try to find a walk around my metro area to participate in this year. BTW, I think you have the most photographed (and cutest) baby ever! And that's saying something because I have 4 of my own.

Anonymous said...

i totally agree- sinus problems suck twinkies. hope she feels better soon!

Rich and Lauren said...

I'm sorry to hear Tricia isn't feeling well. I will pray for her!

DocJAD said...

Its been a long time since I posted, but I never stopped praying!

Sinus infections are miserable. I have fought them my entire life. They have these things at Walgreens called shower soothers ... you drop one in the shower and it releases menthol type stuff. No idea what it is, but it helps my headaches. Just a thought ...

Praying away ...
Jane

Kalani said...

Oh boy, I am kind of addicted to irrigating. It helps with day to day gunk, but it still manages to build up. Always more antibiotics and surgery! I never had much of a problem before tx.

Kalani said...

Oh boy, I am kind of addicted to irrigating. It helps with day to day gunk, but it still manages to build up. Always more antibiotics and surgery! I never had much of a problem before tx.

dogsdontpurr said...

I've noticed that other commenters have mentioned rinsing the sinuses. They are so right. I had horrible sinus problems for years...even to the point of having surgery on them. But rinsing my sinuses has saved my life! Check out the website below. They make a machine that is somewhat like the WaterPik. You rinse once or twice a day using a saline mixture or you can buy their pre made packets of Breathe Ease XL and mix it with water. Truely, this has been like a miracle for me. You should check it out.

http://hydromedonline.com/

Syndi said...

After 6 sinus surgeries, my son Brandon leanred to use the waterpik sinus irrigator and has been able to avoid antibiotics and surgeries for well over 10 years now. i HGIHGLY recommend it!

Emily said...

Hey, I was just wondering--(and you may have already answered this) did tricia have her sinuses drained pre-transplant? I know that was something on the "before you get listed you must do list" for me--sinus surgery, to clear out all the crap. I've had a few flushes post-tx, but it's been nothing like it was before.

barb sherer said...

aw man i am so relieved! for some reason when i have been coming to the sight it hasn't been refreshing so the last post i saw was last week before her bronch. when i thought you hadn't posted for sooooo many days i was fearful for y'all. yikes. still praying..

Shawna said...

It is so sweet of you and MacMamma to help each other through your blogs. I don't think I have ever prayed so hard for families I don't know since "meeting" the two of you! Babies are so precious and they deserve pure joy and innocence. It is heartbreaking to see them hurting. We continue to pray for both you family and theirs!

Spencer and Michelle said...

Nathan - I work with a fellow who just went through this exact thing. He was in the hospital for 18 days. I hope that your case does not evolve into that. I feel that I can somewhat understand (bviously not even CLOSE to actually going though it) because of watching himself and his famiy going through similar things you guys do. My thoughts and prayers are with you.

Carebear said...

Just found you today through Little Baby Bliss and caught up by reading your history linked through your sidebar. What a wonderfully hopeful story you and Tricia and beautiful baby Gwyneth have to tell! I will be praying for you all. God Bless!

Kim said...

I have no idea if this would help with the sinus issues but have you guys heard of the Nettie pot? I've never tried one but users swear by them and say they are the best for dealing with sinus issues, allergies, etc. No idea if it would be safe with Tricia's health issues but might be worth checking out...just Google it! :-)

Love reading your blog and am constantly encouraged by both of your positive attitudes and faith in God's great and perfect providence!! Praying that Tricia might be granted a bit of relief from the sinus issues.

Lynnette Kraft said...

Hi Nate. I can't remember if I ever said hi before, but just in case - HI!

I have read your story and am so touched by the courage that you and Tricia have. I've endured my own suffering, although not with personal illness but with loss. I lost my 13 day old son (Samuel), my 5 day old son (Josiah) and my 6 year old daughter (Anna). But...even when life is hard, it can still be sweet and your family is a beautiful illustration of beauty through pain.

I just wrote a blog post last night about the purpose and value of suffering. While I KNOW you totally 'get it' - feel free to pop by and read it - or just say hi!

I appreciate you sharing your journey. Is there a book in the making? I wrote a book about my journey and it's been a blessing to see how God has used it to touch others lives.

Keep looking up!
Lynnette
Dancing Barefoot on Weathered Ground

Anonymous said...

I have no idea how CF affects sinusitis but I was diagnosed with sinusitis quite a few years ago. If I was on an allergy nose spray I would be fine but as soon as I went off within about two days I would get a sinus infection. This last September I went off the stuff for good and just started using a neti pot to clean my sinuses every night. I've had one cold/sinus episode since. The neti pot is the best thing I've discovered so far.

Kimmybeth said...

I hope that Tricia is feeling better soon and that there is no infection.

Misty said...

I am THRILLED BEYOND words to find a CF-related blog! My son, Jax, is 7 months & has CF. Currently, we are also dealing with Pseudomonas. Jax is doing awesome, though. He is getting bigger & bigger everyday & his Dr's are all so excited that he is gaining weight & doing so well.

Have a blessed day!

terri c said...

I know you will deal with this issue with the same thoroughness and prayerfulness as always. Hoping something works; have had about a million sinus infections and they are no fun indeed. Prayers for Stellan too.

Paradiso said...

I've had chronic sinus problems for the last few years, with the sinus cough as well.

It won't help at night, but I've found chewing gum during the day keeps the cough in check. Something about the continually moving jaw and the swallowing that goes along with chewing gum helps keep all that gunk broken up and moving so it doesn't get caught in my throat. My coworkers know this as well. They've been known to chase me around the office with gum if I start coughing!

Froggymama said...

Oh man, I'm sorry! I have chronic sinus infections too. They're miserable, and really hard to treat. The nettie pot is a good start and I also use Flonase or Nasonex. But even with all of it, they're hard to prevent. Froggy hasn't had any sinus issues yet (knock on wood).

So sorry Tricia's feeling yucky. I wish all the love on this blog and all the prayers could just take away her pain forever. We too are learning that with CF, it is always something. Thinking and praying for your beautiful family tonight. xoxo

Jennifer said...

I have chronic sinusitis also, and am looking at a 3rd sinus surgery. Have the doctors talked to her about long-term low-dose antibiotic treatment? This is something that has been brought up to me by my doctor. She seems to think it would help long-term.

I've been praying for Stellan too :(

Jane-Jane said...

we both LOVE our neti pot for face pressure. even my husband the pharmacist likes to use it....and it's non prescription...just flushes the crud out. just thought you might want to try it. you can get them at stuff mart and RX stores

brandy said...

I have had chronic sinus problems for a long time and the only thing that has helped has been sinus rinses- like the NeilMed Sinus Rinse kit. Good luck.

April said...

I had chronic sinusitus for years with the pain in the face that never went away. After using a neti pot twice a day for a month or so, the pain was completly gone and has never returned. I still use it once a day to maintain and doubt that I will every stop. I think that the pain from sinusitus is just awful and PRAY that Trica finds something that works wondenrful for her!

cats said...
This comment has been removed by the author.
cats said...

Someone earlier used the phrase "sucks twinkies" -- love that one!!!! And soooooo true with sinus stuff -- ick.
I haven't tried the netti pot but will. my old doctor kept recommending surgery but I have heard too many horror stories.
Any other alternatives out there?
--------
Happy Easter everyone

ian71 said...

My heart goes out to you all as a cronic sinus and mild asthma sufferer. Heatpacks and diluted apple cider vinegar flushes have given relief and I have just surfed on to the spice TUMERIC and are emthralled with my first week free of sinus.Im trying with just a tenth of a teaspoon sprinkled on top of my evening meal and it seems to have done wonders. love from new zealand