SINUSES AND CF

Last week I underwent my second debridement from my sinus surgery from December 2017. I talked about some of the 'crusties' they removed and quite a few weirdos messaged they wanted to see pics...welcome weirdos, you are home! 

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Wait, wait wait. I can't put 'the goods' at the beginning! They've got to be at the end, make you read all the word vomit before, build up the hype and not make any sensitive stomachs ill. I want ya'll to come back!

Don't worry - I'll put a discretion warning before you scroll to them.

Why are sinuses an issue with someone who has Cystic Fibrosis? With CF, the sodium chloride channels in each cell are defected; causing the mucus in our body to be real thick and sticky. You can imagine how this affects the sinuses. Our mucus has sometimes been referred to as 'peanut butter' or that of a strong 'rubber band'.

Many patients with CF develop with is called "Sinusitis." Basically a chronic sinus infection.  Have you ever had a sinus infection? Literally a daily reality for many of us. With sinusitis, polyps develop in our nares and nasal passages. As they obstruct the nares it's not only harder to breathe but difficult for anything to drain out....combine that with the thick consistency already and lets just plug it up like a dam, already.

Those headaches on your forehead and behind your eyes? ... Can't remember the last time I didn't have one (pre surgery). It truly is a daily, pain in the butt head. Not only can I buy out an entire grocery stores stock of tissues, from nose blowing but we also flush our sinuses with the Neil Med, a minimum twice daily. But seriously, this Neil Med has been life changing. It is one of my favorite gadgets and the best 'treatment' I have to do to keep my disease in check. After a flush I feel soooo good! It is absolutely refreshing and gets way more out than a basic nose blow. This regimen was really life changing for managing CF.

Sinusitis emerges at different stages in each individual. I've know it as early as infancy and some not settling in until late teen or early adulthood.

How is it determined when sinus surgery is needed? When the headaches (plural) turns into one headache that never alleviates. When the nose blowing and clearance from flushes increases. And when a CT scan indicates it. On a CT Scan of the sinus (or the lung of an X-ray), black indicates air, white indicates bone. When the 'blackness' of your sinus pockets start decreasing, it indicates, inflammation, infection, or blockage. *My last CT scan, I had zero black in my sinuses, except for one teeny-tiny spot. Every cavity and passage was grey. It was a unanimous vote; time for surgery.

Often times the first sinus surgery we undergo will be pretty extensive. In patients with CF, they want to 'open up' (aka drill) all sinus pockets to make them larger. As well as widen the drainage canal, hoping to make draining easier with that thick mucus.

In that surgery, as well as surgeries post 'initial surgery',  polyps will also be scraped out -- literally scraped. Sinus cavities suctioned. Scar tissue lysed and if there is any bone overgrowth or extended bone calcification that will be drilled away. The most common site this occurs is in your upper cavities, completely blocking draining and allowing the headaches to grow in strength. *My sister, Natalie has had this bone calcification occur 15+ times, she has undergone sinus surgery 25+ times. (This was only my second surgery). She is Wonder Woman Super Human.

 Anytime your body heals an incision or cut, it develops a scar to close. Same thing occurs within the sinuses. However we have just worked so hard to open and enlarge all pockets and canals, we want to avoid any scaring from occurring and backtracking the improvements just made. This is where debridement's come in and are so crucial to proper healing.

The debridement's go in and remove any crusting, lyse any scar tissue that seems to be forming and suction out your passages so your sinuses may remain as open as possible. A debridement will occur every 1-3 weeks following surgery. How many debridement's are needed? It will be determined with your ENT at each appointment if they think you need to come back for another.

   

lysing the scar band

Last week I underwent my second debridement post surgery and have a third appointment in two more weeks to see how things are looking. Though a debridement seems real intimidating, it is rather refreshing. I'm a 'nervous nelly' beforehand, but look what was in our waiting room last time! This therapy dog not only served as a distraction, but brought happiness and comfort to many! Don't worry, I didn't pet it 😉 too many other peoples germs on his coat.

 Immediately following a debridement you can expect a throbbing head ache and my eyes have a hard time focusing. Always bring someone to drive you home. But the relief and increase in air movement you instantly feel is sooooo relieving and worth every sweaty palm. I highly recommend sinus surgery to anyone who might need one. It's absolutely worth it.

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*viewer discretion is advised*

If you have a queasy stomach these photos are probably not for you.

Go ahead, go grab a dime, penny and nickel for size reference...

 I present to you my Crusty Creatchers!

                                                                                    thumb for size reference

Unfortunately, the biggest, nastiest, most fascinating green crusty did not make it into the photos. It was the size of a nickel, or larger, and the ENT immediately wadded it up in a piece of gauze. Quite disappointed he kept that one for himself and didn't share - my response was a slow motion, 'NOoooo' he didn't understand how important that photo would be to me lol. Maybe next time we'll get another one. 

Can you imagine picking something like this out of your nose? Some of them felt like my brain was being pulled out!  

Hope these were as fun for you as they were for me!

Xx, M

HOSPITAL RECAP

I went into the hospital Nov 6 - 21 due to recording a lung function of 35% on my testing. I have not ever experienced a result that low and needless to say scared the 💩 out of both Ric and I. We knew I needed to be admitted and start treatment. I had a pretty solid stay, nothing too out of the ordinary -- oh, yeah, except that blood clot, that echocardiogram and the hemoptysis.

I am continuing to throw clots each time a PICC line is placed. It is really uncertain the reason why. They have ran every blood test and clotting test imaginable and each comes back 'normal or negative'.

We ran an echocardiogram to look at the pressures of my heart. With pulmonary disease, once your lungs start failing this causes your heart to work harder to pump what little oxygenated blood there is throughout your body. This can elevate the pressures in your heart and slow down the flow of the blood movement through the heart. Speculation was that this is where my disease was headed and that the clots might be developing in my heart all along. Concerned that the 'shortness of breath' I have been experiencing was due to pulmonary embolisms and not just CF - as we had previously assumed. Thinking about this brought my nerves out, but nevertheless -- once again, normal. A true relief this time. This allows us to believe, my body has a quick and strong response to the "trauma" associated with the PICC line placement and that the formation of a clot is how my body responds to the negative stimulus.

I had my largest episode of hemoptysis ever. I freaked my nurse out - now, it's kinda funny thinking of his reaction. Hindsight, ya know. If you don't know what hemoptysis is, look it up. I don't like typing it - it freaks me out.

I ended up having to stay an extra day, making my admission 15 days, but I was still out in time for Thanksgiving. Yay! It was great to spend the holidays with my in-laws who travelled to AZ from all over the states.

 I was out of the hospital for 11 days and then returned for an admission. Normally this would be highly disheartening, however we were in good spirits because this admission was to prep my lung to undergo anesthesia for a surgery I'd be having in 7 days. The ENT Team was nervous about putting me under; with the current low lung function, and they wanted to make sure I was as prepped, and clear from infection/sputum buildup as possible - to ensure success for my lungs. Plan was to remain in the hospital after for another seven days post. This was no problem to me, until I looked at the calendar and realized I'd be in over Christmas. Man 😕 This post can't go any further, without me thanking the sweetest 6 year old boy Owen, who when he found out I would be in the hospital over Christmas was devastated himself. He gathered all the colorful Christmas lights set up in his bedroom and brought them to me. He said "to hang on the wall and create a Christmas tree." This lit up tree brought such happiness, joy and light not only to me but also the employees who came in to provide care. Many stopped, paused, reflected and/or commented when it would catch their eye. Thank you Owen for being a light to others from far away. You are far more mature and in tune than you know, you made the holidays better; for so many. 

Week prior to surgery consisted of lots of hanging out and book reading. We had our first 'Sherman Army Live Q&A' (#SAQandA). Thanks to everyone who tuned in! DM a question anytime, more Live Q&A's are in the works.

Surgery on my sinuses and deviated septum went well. They relieved a lot of congestion and blockage in each of my sinus cavities. This should help alleviate my headaches, reduce my nose blowing, as well as hopefully decrease my quick recurrent lung infections from post nasal drip. Recovery was going well, painful but well, and they told me I'd get an early release -- I'd be home for Christmas! Oh how this made my Mama heart happy. I had been having a hard time being happy, when I knew I would be spending the holidays away from my 2 year old. It just didn't seem fair to him. How I was dealing with it was maintaining the mindset that he didn't understand a calendar yet, and would be okay celebrating on any given day.

The morning following my good news, and after packing up some of the stuff from my room, our CF doc rounded and broke the news that I had cultured a different bacteria from my sinuses. They wanted to aggressively treat this infections in hopes that it would help me have a smoother six months rather than the rough six months previous. They would also be doing a 15 day course of IV antibiotics - requiring me to stay inpatient and restart my "clock". I would be in over Christmas. I would be in over New Years. I was devastated.  I took my time to cry, and then realized the only thing I could change about this situation was my attitude. Sure I'd be missing this Christmas, but really, we take action now to hopefully have a brighter future. We are planning for Christmases 5 years from now.

I could sit and pity or I could look for the positive and create change myself.

I then asked Ric to bring aallll our Christmas stuff to the hospital- we WOULD celebrate on Christmas Day and we would celebrate in style. We had a beautiful Christmas morning with presents and Santa came to hand deliver Hawke his toy! How lucky is that kid?! We were so grateful that Grandma and Grandpa could be with us during this time and make the "magic" a reality. Being in the hospital during Christmas was very humbling. I felt much of Jesus Christ's love as I reflected on him and his birth. I slightly hoped he would come again and heal all those in the hospital -- maybe it really would be my lucky day 😉.

Staying longer in the hospital ended up being a tender mercy; several days post surgery I dislodged a clot from my sinuses which resulted in a severe nose blind (think mild hemorrhage). Because I was in-patient they were able to have the ENT doctors come to my room quickly and take care of this. I bled for six hours. It was aggressively coming out my nose as well as my mouth. (Sorry for the graphics, but hey the medical life ain't always pretty, but it sure is adventurous!) I narrowly missed going back to the operating room and cauterizing the bleed. They put packing up my nose (think tampon), and inflated it with air to create a type of pressure dressing. This slowed and eventually stopped the bleed. This "device" called the rhino rocket, earned a nickname in our room as 'T'mera the Tampon' or 'The Wonder Dam'. She was with me for 7 days and then was removed. I hate to think what would have happened if this incident had occurred at home, I don't think we would have been able to make the 2.5 hour drive back to our CF Clinic and would have ended up at a hospital that didn't treat CF or know my body. Again, grateful we were there.

 At the end of my stay I had to undergo a debridement of my sinuses to remove clotting/crusting that would hinder a proper healing. During this time we reaffirmed the sinus surgery was successful, but realized my septum surgery and removal of scar tissue in my nares was not. I will go back in three weeks for slicing and removal of the scar tissue. This will be an outpatient procedure with only topical numbing. Send good vibes, I hope to not pass out! I've yet to pass out from pain, but I saw the scar tissue on video and it definitely made me queasy thinking of getting that taken care of while awake. My deviated septum will need to be fixed again with surgery. When? This will be determined at a later date. I remember a specific moment in the hospital when Hawke bumped my nose and I ..cringed.. followed by the sentence, "if we have to redo my sinus surgery it is from this moment right here." Thanks to my son, I am now practicing my patience and remembering that I love him despite all things. 😆

I couldn't close this post without saying a  THANK YOU to each and everyone of my family, friends (3D and from social media) who sent Christmas Cards to help brighten my room. This holiday cheer was so fun when I would receive a mail delivery! I love, love loved hearing from you. To look at your photos, read and be inspired by your stories/letters/notes. I am grateful for your thoughtfulness and taking the time/making the effort to make my holiday brighter.

Those of you that work in the healthcare field during the holidays, thank you. My heart is overflowing and so big for you. Sacrificing your time with your family to care for those who aren't with theirs. Yes, I know you get paid, and probably a little more than usual, but still. Thank you. You efforts are noted and gratefully respected and appreciated.

I was finally released after spending 25 straight days in the same hospital room and 6 out of the last 8 weeks in the hospital.

Nov 6 - 21

December 11 - January 4

What I thought was 39 days, I actually recounted and made it to 40 days in.

Here's to the New Year and resolutions of staying out the hospital!

Xx, M