breathingeasywithe

[breathingeasywithe]

Little by Little...

I’m now 12 days post surgery and things keep getting better and better, little by little. While I still won’t be running any marathons anytime soon, I’m starting to feel stronger and more energized with each passing day. I feel very grateful for all my friends and family who have been texting me and sending little pick-me ups. They really mean so much to me, and have been making me feel very loved!

[breathingeasywithe]

That's it folks! We're blowing this ICU popsicle stand! Just got my stitches out and am prepping to go home and rest up in my own bed. I'll spare you the scary neck slit scar pics for a few days while things get a little less gnarly... That said, this week has been a battle... For the last 6 days everyone has been bathing me and feeding me and cleaning up my puke and walking me around like an infant. And while I knew it was just temporary...it was all deeply dehumanizing. Mentally, things have been almost harder than having my throat actually sliced open. All of my natural coping mechanisms were stripped with the breathing tubes and feeding tubes and lack of voice. It was just me and my fears trapped in my traumatized body. NOT PRETTY, PEOPLE. Plus, sleeping at the hospital (let alone the ICU) is IMPOSSIBLE even when you're a drugged up, naturally-good sleeper. People are always waking you to take your blood pressure or draw blood or stuff your IV with antibiotics. It's no spa. But the worst is really all the random beeping and dinging of the machines. Anyway, now we're just waiting to be discharged! And on Brad's 33rd birthday no less. And now...time for me to sleep forever... And of course thanks for all the texts, Snapchats, messages, notes and flowers! Sharing this journey was a tough decision but ultimately made me feel much less alone! Breathe easy, E

[breathingeasywithe]

My cute cheer squad from Seattle 💜💜💜

[breathingeasywithe]

Waking up on day 4 of that post-op life after my cricotracheal resection and there's a lot to be optimistic about. Gonna keep this quick since phone typing is non-optimal and riddled with mistakes and I have a low threshold for patience overall right now. Plus pain meds... First of all, I'm told the procedure Wednesday morning went great. I didn't wake up until Thursday and even then everything was hazy. I had no idea what day it was; very disorienting! The worst part of all of this is not being able to talk or ask very pointed questions. I like clarity and I've found there is a severe lack of clarity between nursing shifts and doctor visits. The nurses are all nice and lovely but by the time you really vibe with one and they "get" you and your weird ice pack needs, their shift ends. Boo! Now I'm starting to have my favorites, too. So today is a big day for me because I get my feeding tube removed. I've been breathing strictly from my nose the last 4 full days which is raw and uncomfortable and the stupid nutritional mush they feed me down my tube make me nauseous. I've puked 3 times in 3 days... The bright spots: - This is all temporary; a few more uncomfortable days in the ICU and then we can bring this pity party home. THANK GOD. - Once my feeding tube is removed we can also remove my catheter (this is way TMI) but once I can start standing up without my PTSD of immediately vomiting, I will instantly feel 20% better. - Little gifts like stuffed animals from my mom and Ellen are keeping me comfortable at night and also my childhood "Lolly Dolly" that Brad packed for me. - A dry erase board Brad bought at Target makes communicating much easier for me with him and the docs. God, he really sucks at charades but is awesome at everything else. He stayed by my side all Friday night since I wasn't sleeping well and I think he was nervous. This man has seen some shit (literally), these last few days and I'm feeling blessed for his support. - Plus I get sweet texts and Snaps from everyone ranging from thoughtful coworkers to far-off besties to my cutie nephews (coming in a future post since I'm tired and confused now). Overall, this is going to be a much longer road than I anticipated but I really believe it will be worth it in the long run! Thanks for reading! I love you all and Brad is passing on your notes and thoughts!

[breathingeasywithe]

Getting Ready...

Welp. I’m ready as I’ll ever be. Tonight I packed my bag, showered with my weird-smelling special surgical soap, had a yummy dinner with Brad, got all caught up on The Bachelor (my guilty pleasure!) and am now getting plenty of Puck snuggles.

While I’m feeling nervous, I’m also trying to stay grounded in perspective. I know the next few weeks won’t be a cakewalk, but deep down I believe that this short-term inconvenience, fear, and pain will be worth the long-term peace of mind and quality of life. It’s going to be hard and uncomfortable...but it will be worth it. It has to be worth it.

So tomorrow morning, we’ll head downtown to the hospital; the surgery itself is scheduled for 11:20am Central Time. I’m not sure what the WiFi situation will be there, but I’ll try to post once I’m out of surgery and lucid enough to actually type some coherent updates.

Brad is really my handler for the next few days, so if you’re itching for an update...shoot him a text.

See you on the other side, my friends - and once again, thanks for your texts, emails, FB messages, hugs, and cards. I feel so much better knowing I have so many amazing people thinking of me and praying for me. I feel so full of love and gratitude.

[breathingeasywithe]

Feeling the Love.

You guys sure know how to make a girl feel loved.

Over the last couple of weeks, I’ve received thoughtful cards that have brightened my day. Beautiful texts. Care packages chock full of coloring books, art supplies, beauty products, and stuffed animals.

And today my book club friends surprised me with a giant crate filled with yummy teas, pens, puzzles, poetry books, stickers, crossword puzzles, and so much more! Check out this haul:

Whatever happens, I feel so blessed to be surrounded by such thoughtful, generous, giving people, YOU! Thank you for being part of my community. My tribe. I can’t imagine going through this alone...but luckily, I don’t have to. I have all of you!

As Wednesday gets closer, my nerves have been growing, as well. But in a way...this anticipation is the hardest part. The waiting. I’ve always been bad at waiting and of course this is no exception. I’m ready to get this surgery over with; because the sooner I get this surgery, the sooner I can start healing, and the sooner I can leave this all behind and move on.

Thanks again for all the kindness, prayers, thoughts, notes, and love. They’re helping me so very much.

[breathingeasywithe]

T-Minus 10 Days

The countdown is on. My big surgery to (hopefully) take care of my Idiopathic Subglottic Stenosis once and for all is only 10 days away.

A lot of my friends and family members have heard me talk about this surgery...I haven��t really been able to shut up about it since things got underway back in early December. But it requires a bit of explanation for those who are unfamiliar both with my condition (ISS) and this particular surgery (CTR).

A bit about ISS; long story short, some random scar tissue has formed right below my vocal cords, which heavily restricts my breathing while also making me sound like Darth Vader. It’s uncool and unsexy, and to be honest, terrifying.

A bit about this surgery; it’s called a Cricotracheal Resection (CTR) and it’s no joke. My surgeon will cut open my throat and remove the 2-4mm of scar tissue that’s causing my breathing problems. He’ll then sew my voice box and windpipe back together. Easy peasy!

Except it’s not really...it’s a 4-6 hour surgery. It’s not pretty. It’s high-risk...but it’s also high-reward. If all goes according to plan, there’s a 95% chance that this will permanently cure my ISS forever.

FOREVER, you guys! This means no more getting winded in client presentations. No more heavy breathing during yoga. No more fear of rigorous workouts. I’ll finally be able to breathe deeply. Normally. Quietly. Peacefully.

I’ve been simultaneously looking forward to this surgery and dreading it for teh last two months. On the one hand, the anticipation of this surgery feels almost as crazy-making as the recovery itself. On the other hand, I am so, so nervous. Of what exactly? FUNNY YOU SHOULD ASK.

Since my primary love language is list making, here are all the big and little things compiling to make my anxiety inflate...

The things I am nervous about:

The surgery itself; a lot can happen during a long, complex medical procedure and I’m nervous about complications that might arise during the 4-6 hour surgery

Complications during recovery; because of the nature of this surgery, quite a bit can go wrong early in the recovery. So I’ll be staying in the hospital for a full 5 days after the procedure itself. This does NOT sound very fun to me. Not at all. I’m worried about reopening my internal stitches and needing more work done (and possibly a trach). I’m also worried about my pain. I’m a BIG baby...and am simultaneously about 1) Being on too few painkillers and 2) Becoming overly dependent on painkillers.

Having a big ugly scar on my throat (and looking like Catelyn Stark post-Red Wedding)...this is also inevitable, although I have no idea how horrific it will actually look. Or how much Mederma and Vitamin C it will take to reduce the disgustingness of it.

Not being able to talk; because this procedure is immediately below my vocal cords, I won’t be able to speak for a while following the procedure. Anyone who knows me is probably laughing their ass off right now...

My voice actually changing; there is a high chance that this will happen, although my surgeon says that few will be able to hear the change. 

Work; I’m taking short-term medical leave and I’m nervous about how long my recovery will be and how it will affect my teams and projects...my surgeon says this procedure will leave me on bed rest for 3-6 weeks which honestly sounds like 3-6 years. I’m not great at staying put...so I fear being immobilized for this long...and regarding work...I’m worried about my work getting done...or not getting done...about what my coworkers will think...and about 

But as with everything...there are also some really positive things that could come with this surgery!

The things I’m excited about:

My surgeon; I really like and trust my surgeon; he’s the perfect mix of pragmatic and funny. He’s smart. He’s done a ton of these. He knows his shit. He doesn’t sugarcoat the details but also isn’t melodramatic. I like this dude a lot and how he respects me as a patient.

Getting this procedure over with; if I don’t get this big CTR surgery now...then I’m really just kicking the can down the road. Smaller dilation surgeries only last about 5 months for me, so without this big one, I’m stuck on the two-outpatient-surgeries-a-year path. That’s a SHIT TON of surgeries. I’m excited to just get this one now and get it out of the way. I don’t want to be one of those patients who say, “I wish I’d done this years ago!” And believe me...there are LOTS of ISS patients who say this.

Relaxing and resting; To be honest...I’m excited to just nap. And listen to audiobooks. And meditate. And color. While 3-6 weeks of bed rest honestly feels like torture and I’d SO much rather be working, there is a small part of me that is excited for this time. This quiet. This rest.

Getting back in a workout routine; I used to be incredibly active. I had a trainer. I ran races. I I worked out 6 times a week. Since I’ve struggled with ISS, I’ve gained 30 pounds. While I care less about the weight itself, I do care about feeling strong again. I miss working out! Doing zumba. Lifting weights. Even running!

Moving on with my life; once this surgery is over, I can MOVE on. I can focus on my health...my body...my life with Brad. I can hit the reset button on my body. I can stop WORRYING all the time.

BREATHING AGAIN! I can not emphasize enough how excited I am to just breathe quietly and normally again.

I intend to keep blogging up to my surgery and throughout my recovery. 

One reason is tactical; I want to keep those who care about me but live far away in the loop and up-to-date. 

The other reason is psychological; as a writer and loud opinion-haver, not having a speaking voice is going to get old very quickly. Creating a place where I can communicate my thoughts, progress, fears, setbacks, frustrations, and feelings will help my emotional recovery, for sure.

Thank you for your support during this time. I know this is a blip on the radar of my life and also SO not worst case scenario when it comes to illnesses...but having your love and support really means the world to me.

Breathe easy,

E

[breathingeasywithe]

Idiopathic Subglottic Stenosis for Dummies (aka for Most People, Because Honestly Who the Hell Has Even Heard of This?)

What is Idiopathic Subglottic Stenosis (ISS)?

Idiopathic subglottic stenosis is a narrowing (stenosis) of a specific portion of the windpipe (trachea) known as the subglottis (just below the vocal cords). Idiopathic means that the underlying cause of this narrowing is unknown. Most cases are associated with the formation of scar tissue (fibrosis) and inflammation in the affected area. Symptoms may include shortness of breath upon exertion (dyspnea), hoarseness, and a high-pitched wheezing sound when breathing in or out (stridor). The disorder occurs almost exclusively in women. The condition often recurs despite treatment.

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What are common symptoms of ISS?

Stridor and dyspnea are the most common symptoms. The noisy breathing that characterizes stridor can resemble (and is often mistaken for) wheezing. These symptoms often lead affected individuals to be misdiagnosed with asthma and can result in a delay in diagnosis. Stridor can become progressively worse. Shortness of breath upon exertion can also be slowly progressive, worsening over a period of years so that affected individuals are gasping for breath after simple activities or even at rest. Other symptoms that have been reported in adults with idiopathic subglottic stenosis include voice changes, increased mucous production, and persistent cough.

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Who gets ISS?

Idiopathic Subglottic Stenosis is a rare disorder that affects women almost exclusively. The disorder most often occurs in women between the ages of 30 and 50.

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How is ISS treated?

Several different surgical procedures have been used to treat Idiopathic Subglottic Stenosis, but are generally categorized into: 

1) Endoscopic Dilation (accomplished with rigid instruments or inflatable balloons). Endoscopic dilation is a minimally invasive procedure that is often done as an outpatient procedure. However, this procedure often only provides temporary relief and reports in the medical literature suggest a high recurrence rate, meaning the affected area with become narrow again and additional dilations (or another treatment) will be required.

2) Endoscopic Resection of the stenosis (with prolonged medical therapy after surgery). In an endoscopic resection, the patient undergoes exposure of the tracheal scar with endoscopes through the mouth, however a CO2 laser is then utilized to resect a significant portion of the scar, followed by long-term adjuvant medical therapy.

3) Open Neck Surgery with resection of the affected tracheal segment with end-to-end anastomosis. In individuals who do not respond to less invasive surgical options, open airway surgery may be performed. In open surgery (a.k.a cricotracheal resection or laryngotracheoplasty), the trachea is approached via an external incision (or cut) on the front of the neck. During this procedure the narrowed area of tissue is cut away (resected) and the affected areas of the larynx and windpipe are surgically reconstructed. Tracheal resection and laryngotracheoplasty are forms of open surgery and generally have been reserved for individuals with severe narrowing who haven’t responded to other therapeutic options. These procedures require hospitalization and carry greater risk than the less invasive options, but reports suggest excellent long-term results. 

Affected individuals who have a mild case (e.g. no symptoms) may not require treatment. Instead they may be best treated by periodic observation to see whether symptoms develop or if the narrowing progresses (i.e. narrows further).

[breathingeasywithe]

The Diagnosis

My name’s Elyse and in May of 2016, I was diagnosed with Idiopathic Subglottic Stenosis. “What the hell is that,” you’re probably asking yourself. SO DID I. It’s not exactly something you hear about every day. We’ll certainly dive a bit deeper into the medical condition itself in later posts, but first it’s important to know how I got here and how long it took to get a proper diagnosis.

Part 1: Wheezes, sans sneezes.

I first noticed my loud, labored breathing back in the spring of 2015. 

I was getting over a vicious cold, but it was taking forever. And even though my mucus and overall feeling of lethargy had evaporated, the stridor, coughing, and wheezing remained. I found it worrisome...yet I struggled to articulate what specifically about my breathing didn’t sound right. It was a series of short gasps, aggressive coughs, and loud wheezes; almost as if I were constantly breathing through a linen cloth.

I figured it was a combination of things. A lingering cold. The fact that I’d gained a few pounds. Maybe it was walking pneumonia? But I also sensed it was something bigger. Because sure I’d had a cold and was a size 12, but I certainly shouldn’t have been loudly wheezing after climbing a single flight of stairs.

After a few weeks of trying to wait the problem away, I went to my general practitioner. She listened with rapt attention as I struggled to explain the breathing problem. She asked a lot of questions. Tilted her head. Looked concerned. I was both happy she was taking me seriously, but also very nervous. Clearly this wasn’t normal. First, she performed some chest x-rays. Everything looked normal, so we ruled out walking pneumonia and any other visible lung issues.

Maybe it’s asthma. She pontificated. After all, it runs in my family and my labored breathing sometimes imitated an asthma attack. She had me breathe into a nebulizer for 20 minutes and then wrote me a prescription for a Flovent inhaler. Try using this inhaler twice a day for the next week. If it doesn’t get better, call me!

I felt relieved knowing it was probably “just asthma” and started using the inhaler twice a day like my doctor prescribed. But my breathing didn’t improve; it was still loud, strained and ragged. I called her back and she referred me to a pulmonologist at a different, much larger medical facility. I had to wait two months to see him...

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Part 2: Whatever it is, it’s not asthma.

The pulmonologist was also incredibly attentive and empathetic, listening to my story as well as my breathing. I started getting incredibly emotional in this appointment. I was so scared...what was wrong with me? Would I always sound like this? Did I have some kind of lung cancer?

The pulmonologist was patient and kind; he said, Don’t worry. We’ll figure out what this is.

The first step was for me to perform a series of lung function tests. I returned a different day since these exams could take up to an hour and required specific machines. I sat with a nurse who coached me through a series of tests; most of them involved me blowing air through a tube at certain forces, for certain intervals.

After the exam, my pulmonologist told me that my lungs were working perfectly. They were filling with the appropriate amount of air and pushing the air through, as well. It was then he told me, After reviewing these test results, I don’t believe there’s anything wrong with your lungs. I also do not believe it’s asthma. I think it’s actually some kind of vocal cord dysfunction. It seems as though your breathing problem is happening in your throat or upper airway rather than your lungs. Go see an ENT specialist and come back to me if they don’t find anything.

I was then referred to an Ear Nose & Throat (ENT) doctor in the same clinic. Again, I had to wait 4 weeks to see him...all the while I was getting more and more nervous. If it’s not asthma...WHAT THE HELL IS ACTUALLY WRONG WITH ME?

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Part 3: Answers.

I met my ENT, Dr. G on May 16, 2016; it had been a full year since I first noticed my abnormal, distressed breathing. But the day had finally come. The day that we’d know for good what was wrong...

Dr. G is an eccentric fellow. Very quirky-doctor-in-a-Jason-Segal movie. Late 50s. Lots of nose hair. Bad teeth. Rosy cheeks. Loud laugh. But I liked him immediately. The thing he asked me to do was take a deep breath in.

As I inhaled deeply through my mouth, the wheezing was louder than ever. I could see his ears perk up as he headed for a piece of machinery. He told me he was going to stick a narrow camera through my nose to get a look down my throat...the camera felt gaggy and awful, but as soon as he removed it he said...

Well the good news is I know exactly what’s causing this. You appear to have a rare medical condition called “Idiopathic Subglottic Stenosis.”

What. the. hell. does. that. even. mean.

I asked him how you spell it so I could Google it later. He wrote it down for me and walked me through what each word meant:

Idiopathic is doctor-speak for “we don’t know why this is happening”

Subglottic refers to the area below the vocal cords

Stenosis is a pretty broad medical term which means the narrowing of a passage

In short, I have a few millimeters of scar tissue that has formed below my vocal cords, restricting my breathing. 

This would require surgery. And probably more than one.

It was a LOT to take in. I cried. Hard. I wished Brad had been there with me. I could barely listen to Dr. G. He then ordered a blood test because Idiopathic Subglottic Stenosis is often related to other autoimmune diseases. He wanted to rule out some other medical issues, as well. Luckily, those all came back normal. But I was still going to have to deal with this random, annoying, dangerous medical condition. My journey was just beginning...

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Part 4: Reflections

While I’m not excited to have I.S.S. (Idiopathic Subglottic Stenosis), I feel blessed to have a proper diagnosis. While it took me over a year from when I first noticed my symptoms to get properly diagnosed, I realize that many people are not this lucky. Sometimes it can take years to get a true diagnosis (especially with I.S.S. which is FREQUENTLY misdiagnosed as asthma). And sometimes people have medical mysteries that never get solved...

That said, this breathing problem was real. And it wasn’t going to just disappear. 

This blog is not a place for sympathy. I’m not looking for attention or credit. It’s merely a place for me to share my story...I was shocked at the lack of resources (both from the medical world and from the blogging world, as well) that talk about I.S.S., even though thousands of people struggle with this (Primarily women. Primarily in their 30s-50s. Primarily out of the blue).

This is also a space for me to update my family and friends about my progress as I prepare for a large surgical procedure on February 1 which will hopefully take care of my I.S.S. forever. It’s called a cricotracheal resection, and I’ll tell you all about that later.

Breathe Easy, E