Feb 4, 2025

AND THEN...SHE WENT COMPLETELY OFF HER LITTLE NUT

Today I had an appointment at Advent in South Bend to get a sleep study scheduled. My family doc is convinced that everything that's wrong with me is related to obstructive sleep apnea, so she wants a test to confirm this diagnosis.

(For the record...this is where she sent the referral. I'm not too sure I would have gone this route, but I guess there comes a point when I have to trust her...right?)

I've had two previous sleep studies...one in a sleep center and one at home. The first was an unmitigated disaster because I never fell asleep, despite the technician coming over the speaker hollering at me every ten minutes to "CLOSE YOUR EYES AND GO TO SLEEP". The second was uneventful and conducted in the friendly confines of the big girl sleigh bed. Neither revealed anything.

I do know, however, that I snore loud enough to rattle the windows, and with weight gain it gets worse, so I kinda sorta see where she's going. I have, very much indeed, come awake gasping for breath in the middle of the night, and I'm sleepy enough during the day that I can fall asleep standing up...so OK...let's do a sleep study.

Raise your hand if you've ever taken your car in for an oil change and the guy comes out with a clipboard containing a list of crap that you REALLY SHOULD GET DONE and that it just so happens that they're running a special on this or that doohickey that your car REALLY NEEDS, and then there's the insinuation that if you don't opt in for the $600 air filter or the $700 timing belt or the bazillion dollar whatever thingamagig they are trying so hard to sell you, that driving one more mile without this crap will result in certain death.

Yup.

That was this appointment today.

I've calmed down a bit, but I have to tell you...I have never been more disappointed in a medical facility in my life. A hard sell at a doctor's office? When did this start? I've been to used car dealers and felt less pressured! 

I got the sleep study scheduled, but I am already dreading the return appointment to get the results when they try to sell me more stuff.

Again...I went there because my doctor wants a sleep study. But in the course of a fifteen minute appointment, the nurse practitioner did a scope of my nose (which I didn't want and should have just flat out refused), told me I have serious malformation of my left nasal passage, prescribed antibiotics for an infection I don't have, told me I needed a CT, and suggested that I needed a balloon angioplasty of the sinuses. She also told me to start using a nasal rinse (which they just happen to sell there), and then told me that when they got the results of the sleep study and was diagnosed with apnea, that there was no way I was going to tolerate a CPAP, and would probably need an oral appliance instead that costs $4,000. 

Somehow I came to my senses as she kept going on and on and on, and I basically interrupted her and said "Let's just get the sleep study done for now, and I will check with my transplant team about all of this other stuff" and that was the end of the consultation.

Now I'm just feeling a little sick to my stomach, because I made the mistake of reading online reviews of this place, and almost every single one of them mention exorbitant charges, insurance issues, and the fact that after very similar experiences to mine, people received bills for thousands of dollars.

Damnit, Gumby. 

Sometimes it's just not easy being me.

(On Page Two, by the way, we have my Gastroenterologist who basically shrugs his shoulders and says "Eh...you've got reflux" and on Page Three, we have my IU Transplant Nephrologist who says "Lose weight".)

(Meanwhile....I actually think I know what's wrong with me. I think I have a carcinoid tumor or carcinoid syndrome, because if you plug my symptoms and last year's issues into Google they are a 100% match.)

(I'm just posting this, by the way, so that when they finally figure it out and prove me right I can get all smug and self-satisfied and have TOLD YA engraved on my tombstone.)

I'm tired, Dearies. And I'm frustrated and terrified and sad and mad and...at the end of my damn rope. I am walking around screaming like a banshee at Rich and I swear if one more thing goes wrong I might not come back from it. Nobody is listening to me, I'm seriously starting to feel like the World's Biggest Hypochondriac, and if I could find the gas money I would get in my car and point it in the direction of either the Cleveland Clinic, Mayo Clinic, or Dr Weil's Center for Integrative Medicine.

OK.

Enough.

I'll get it together...I promise. I know that I just need to calm down and have faith and know that all will be well eventually, so I really appreciate you putting up with my nonsense. I'm going to go offline for a bit and just...be. I think a few days of stitching and reading and diamond painting and praying and watching Ted Lasso. All of these things might be better for me than this constant state of panic I'm in trying to fix myself and the doomscrolling that I do all night long because I'm terrified to fall asleep because I'll suffocate to death in the middle of the night.

Thank you for the love and prayers and notes and comments and...everything. I'll be back soon...hopefully better and back to myself.









4 comments:

  1. Oh, Coni. So hard. Maybe go back to the doc who gave you the referral, explain the problem, and get a better referral. No need to tolerate doctors who make you uncomfortable. And good for you about taking some time for yourself. Can you make a deal with yourself that every time you get the urge to look up medical info you’ll look up something funny instead? Every smile helps. Will keep you in my thoughts.

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  2. Wow I feel for you. I've got to say though I find it disturbing when I keep reading that you're yelling at your man. You wouldn't want him yelling at you, would you? I suggest you reach out for some mental health help. I hope better days are ahead.

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  3. I know the feeling although I don't get the "upsell" you have I almost always feel ignored. I'll say some prayers for you, too.

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  4. Sleep Apnea is not a joke. I ignored mine for many, many years and ended up almost dying from lack of oxygen, with Congestive Heart Failure and Pulmonary Hypertension. Those last two are permanent and require limited fluids and sodium. If you don’t like Advent, get a referral to another Pulmonologist. Don’t ignore it.

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