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I’m back among civilization! Or rather, I am home. Thanks to everyone who’s been praying for my health and specifically my WHOLE LUNG LAVAGE.

What a week! To remind you, I had a lung biopsy in October (feels like forever ago) because of the extreme weakness and shortness of breathe that kept getting worse since February 2018’s hospital stay due to what we thought was pneumonia. The results indicated a very rare lung “disease” – Pulmonary alveolar proteinosis (PAP). PAP is a syndrome, a set of symptoms and signs – not a single disease, in which surfactant in alveoli builds up slowly. This blocks air from entering alveoli and oxygen from passing through into the blood, which results in a feeling of breathlessness (dyspnea). It is so rare that there are less than 10,000 cases of PAP in the United States. And that means very little can be found online for those like me who are seeking information so I thought I’d blog about my experience and share it with y’all.

Because the CT imaging didn’t show PAP in my entire lungs the doctors were hesitant to say I had PAP. (They should have listened to me but I guess I’m just the patient, lol. I had wanted a biopsy back in February but we had to wait until it got worse in October and I wanted a WLL in November but we had to wait until March. Sensing a pattern? LOL After 4+ years of being ill sometimes you just get tired of waiting around and it turns out I was right to keep hounding the doctors for these procedures.) We had started a high dosage of Prednisone at the beginning of the year that gave me all the negative side effects and produced very few positive results so the doctor had finally decided to wean me off the Prednisone and try the WLL as both a therapeutic treatment and also as a diagnostic tool. Yippee! was my response and everything was scheduled to start Monday March 11th.

(c) Cedars-Sinai.
PARKING: A little before 7am, my dad and I drove up to Cedars-Sinai’s South Tower parking garage P3 (see map above) that is SO SMALL and was already full at 7am (!) so because we needed to be at admissions at 7am we used valet ($5 in addition to the regular fee) {GRRRRR}
Rating: F (compared to USC Keck Medical where I had my surgery in 2016 the parking was abismal and so expensive!)
ADMISSIONS: Dad wheeled me into the lobby where you’re immediately greeted by a friendly lady (or gentleman) at the admissions desk who took my name and walked us over to registration where we waited a while before another friendly lady brought us in to her cubicle so I could sign (electronically) all the necessary consent forms before being given my ID bracelet and having my photo taken. As we were saying our goodbyes and heading back to admissions the nurse from the procedure room called dad’s mobile to see where we were, lol. Back at the admissions desk, the nice lady from before saw us and immediately jumped up to help us and take us directly to the waiting room. I wish I had remembered her name – she was so sweet.
Rating: A/A-. Very friendly lady at the front desk of admissions and the lady we worked with at registration was nice too but it seemed that there weren’t enough employees at registration at 7am hence the wait and nurse calling us to find out where we were.
 
THE PROCEDURE: Once we arrived upstairs at the waiting room there was a short waiting spell which surprised me considering the nurse had called to see where we were I assumed she’d be rushing in to get me but we had enough time to use the restroom and wait some before the nurse arrived. The nurse was a nice lady and after getting my weight on the scale she took me straight into the procedure room where I was shown into a dressing room attached to the room to change before I was strapped onto the table (don’t want me falling off, lol) and a flood of excitement and controlled chaos started happening around me as everyone got to work. The nurse poked me twice for my IV but no luck so the anesthesiologist tried no luck and finally got a ultrasound machine so she could find my veins and we hit gold. lol, my poor veins. [I really liked the anesthesiologist who happened to be a Poirot/Agatha Christie fan! Yay. I was hoping she would be there again on Wednesday but alas no.]
I signed the consent forms and was put to sleep so I can’t tell you what precisely happened but Dr. George Chaux (amazing!) said all went well and they used 6 liters of the saline solution to clean out my left lung and it definitely looked like PAP. Yay – we had a diagnosis!
RATING: A/A-. My only issue was the “controlled chaos” being that based on the bits of the background conversation I heard it seemed the support team was as new to this as I was. Not comforting, lol, but I was confident in my doctor and also in the anesthesiologist.

RECOVERY: I woke up in the recovery room hacking away with a dreadful cough (still present) and a sore throat. I had been warned about both these symptoms beforehand thankfully so I wasn’t worried. I will however suggest that ladies wear a feminine pad and/or granny panties because the coughing can and will likely cause an accident. (just saying ?) Recovery will test your patience, my friends, because if you’re like me you’ll be dying for something to drink since your throat feels like a desert and food because you haven’t eaten since the night before but nothing is allowed for a while. I had a nebulizer treatment first and then was allowed some ice chips before water.

Food wasn’t allowed until I arrived in the hospital room (around 2pm!). The two nurses I saw in the recovery room were nice enough and my dad and I were mainly l left to ourselves which was fine with me. The only negative was that I dropped the cup of ice chips/water (clumsy/weak hands) and the nurse sure seemed irritated huffing and puffing as she cleaned up the mess and even though I said “sorry” a couple times she never replied and acted like she didn’t hear me. I know I was loud enough because my dad said that I did nothing wrong and even then she didn’t say anything. Oh well.

RATING: B-. Nothing fabulous and nothing terrible. Service was as you’d expect. I just wish the nurse didn’t have such an attitude when I spilled the water. #Overreacted

UPDATE: Part Two is online!