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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.
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!