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.









18 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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  5. Coni, you shouldn't be made to feel like you were at any medical facility. I'm sure you have, but if you haven't, reach out to your doctor who wrote the script for the sleep study. There has got to be a better place than that. Thinking of you and praying. xoxo

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  6. Thinking of you, Coni and praying that you get some answers soon.

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  7. It's very stressful to feel bad for so long and not know what's going on. I truly hope your medical team can figure things out for you.

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  8. Trust your fine instincts, Coni. Be the hammer, not the anvil... No one should have to tolerate the hype that has invaded the medical world. Your Dr. might want to know about the antics of her referrals Now slow down and follow your recovery plan with things that bring diversion and calm. May you find rest in deep breathing exercises as well..... Praying you through.....

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  9. Dear Coni, I am so sorry about all the trouble you have. I hope you can find yourself another doctor, because a doctor shouldn't be selling remedies in their office. Saying a prayer for you now.

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  10. Hello, as a fellow sleep apnea sufferer, I hear you. The CPAP is no fun, but it beats the alternatives. My late husband finally got one after I nagged him for years; he loved his. Then he started nagging me until I got a sleep study, and was diagnosed. I would highly recommend my pulmonologist, he has an office in Valpo. Getting used to using it is difficult, and now my husband isn't here to help it's harder. It is a series of tiny, incremental changes. It does make a huge difference.
    I'm praying that you will get help to learn to use it. Hang in there!
    Jane

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  11. I am so sorry, sending prayers!

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  12. Sending positive thoughts that you get this figured out soon Coni!!

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  13. Hi Coni, I agree with all the others. Get a reference to a different Doctor/facility if the family doc insists on the procedure. Your description of the initial interview is rather disconcerting.

    Keep up the hobbies in the meantime. Arts and crafts, reading, watching a favorite show. Whatever works. We will be here when you feel like posting.

    M in nc

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  14. Oh Dear Coni - it is horrible to feel unwell for so long, yet alone add sleep apnea on top of it. I'm going to miss your posts (for this short break!), but I'm happy you can stop, take a breath, and release the pressure of posting.... one less thing to do at the moment. Prayers for good health returning, and creative goodness filling your heart with joy ❤️ Sally

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  15. Prayers are continued to be prayed for your sanity and health 🥰 talk to your insurance company and ask who them who takes your insurance for a sleep study then Google them get your reviews and tell your doctor to send you a referral to that one

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  16. I am so very sorry that you continue to feel so terrible and have not been able to get any answers. What an awful experience at that medical facility; I hope you can get a referral elsewhere.I am keeping you in my prayers that the doctors will finally be able to help you and you'll begin to feel better.
    Mary

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  17. Coni,
    I would get up to Mayo ASAP. I suffered for over two years from errant hip replacement surgery; stuck around South Bend then down to IU Health; back to the Bend - all with no solution for the immense pain. Off to Mayo - now walking with no assistance from walkers or canes. I’m a total believer!💕

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  18. The medical profession has gone down the tubes! From what you wrote it seems not too late to cancel the sleep study at that place! How about seeking another primary doctor who actually listens ...if not, demand that your doctor come up with an alternative sleep study facility. I know it's hard, but never stop advocating for yourself! You drive the bus!

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