Less than a month ago my husband was offered a job in NYC. We need this! ….And beyond ready to move back north. He delayed starting to be home for my tongue electrocution procedure. That would be, RF (radio frequency) Ablation.

I spent Monday, Oct 1st in pre-op — all day really. Everything was set for Thursday. It was even scheduled for 10:30 AM (even though the official phone call for procedure time comes less than 24 hours before). Paul would be with me. No cutting this time but three general anesthesia episodes in less than a 12 month period… not a good thing for my poor body.

Wednesday 10:54 AM I receive a phone call that my procedure was canceled.  The Surgical Dental Assistant called instead of the Scheduler when she saw my name. I apologized to her because I swear like a sailor. My husband was Navy and says I can put them all to shame…lol. I wasn’t upset with her. I wasn’t upset with the surgeon. But less than 24 hours before my 8:30 arrival time and 10:30 procedure… Canceled because of hospital bureaucracy. NOT ACCEPTABLE!

The Surgical Dental Assistant sent my doctor an email. “Ms. LaFrance would not accept this……” He called within 20 minutes. The all powerful beings of the OR Bureaucracy Team refused to let him bring the RF Ablation equipment into the OR. He had been fighting it for a week. (Yes he should have informed me but that’s neither here nor there). He did not get a definite answer until Wednesday. It had been scheduled (in the computer for all to see) for months.

He referrs me to the Patient Advocate for the OR. It takes 3 to 4 hours to actually talk to her. She said “there’s nothing I can do“— she had looked at my file …asked those who said ‘no.’ They were keeping their no’s. At this point I feel so many emotions that my voice is heightened. She tells me my surgeon said I could have it done in the office under local Anastasia – I said NO!! — he said the same to me because he’s done it before – I stopped him earlier and said – “you said it is cruel and unusual punishment to do it in the office.” He said I won’t lie – it’s very painful – NO NO NO! No to him. No to the Patient Advocate and a huge bleepin’ NO to the hospital money makers. NO!

I ranted. This is a patient care issue. This advocate must advocate for ME. She told me she couldn’t. In my heightened, tearful, never-letting-this-go voice, I said what about patient advocacy, patient rights (remember less than 24 hour notice). I am disabled! I have rights. I have an invisible illness. I have a rare disease. This is unacceptable! I have had a tumor removed from my brain through my nose. I have radiated my pituitary and therefore my brain. I have had emergency gall bladder surgery because the injection saving me from growing was poisoning me. (Haven’t told that story yet — happened in May). I have had my jaw broken. I have had four years of braces, moving teeth and searching for the right surgeon (see previous posts ). Now my tongue, which grew along with my jaw, is ruining the whole thing. Help me!

And she said let me see what I can do. I will call you back today. I promise. That’s where she should’ve started.

She called back. No they will not put me back on Thursday schedule. No they will not allow it for Friday. They did decide that they would no longer wait until November to revsit. They did say they would fast track it.

They still screwed me. My surgeon was out of town the following week. They rescheduled me tentatively on October 15. My husband‘s first day in New York City. My mom and dad are a mere three hours away but it’s the day my mom was having her hip replaced. I DID need an adult. My mom would find a friend and send my dad. No, no, no.

Patients come first. Hospitals get it all wrong, all the time. The arrogance should be sliced and diced and truly become Patient-Centric.

But now I had my advocate on my side…

I’m still in a mess. Who can pick me up? Sit all day and wait? Who doesn’t have a job, kids and all the rest…? Oh, my friend, also on disability, has chronic daily migraine …So much of her time lost to  debilitating pain… before I could ask… She offered. Like me, sometimes we suck it up. Safest option? …maybe not. But we have each other’s back.

I don’t have many friends especially not locally (life of the chronically ill). When you find the right girl you trust with everything – including your life – you’re OK when you’re husband is up in New York City getting our new life started.

So back on track. I did have to explain to the anesthesiology nurses – several times –  about my on-again, off-again, adrenal insufficiency. They shouldn’t be that confused.

However, when the anesthesiologist came in and I explained it to her, not only did she know exactly what I was talking about, but asked me what was my medical profession…lol. I said, I’m not. …Been doing this Acro-thing along time. She was mightily impressed.

…Asked for my surgeon — I told him “They” blamed him and I didn’t care. He said of course “They” did — let them. He also said he knew the Patient Advocate was my only avenue and as soon as I called her, his phone was ringing off the hook. “They” wantd to know “How can we help?“ “How can we make this work better?“ There’s no place for this nonsense in a hospital. Peoples lives are what matter. And if they won’t buy him the equipment he needs for the OR then approve what he has on his own, ASAP! We know the hospital won’t. ….I could not ask for a better surgeon.

I came home the same day. My friend stayed late but I was OK and I sent her home. My throat has currently been the worst of it. It feels like a terrible strep infection. I had nasal intubation and down my throat… roughs you up a bit.

I say my was tongue electrocuted. RF ablation at 600 Jules is no joke. My tongue is numb and sore — but nothing crazy.

One stitch to attached to my tongue, to what I believe was, underneath my tongue, to hold it down. …Feels like I bit my tongue. Underneath feels sore and swollen. Not bad.

Rest week — or as long as I need. 6 to 8 weeks to see how much shrinkage occurred – It can be repeated. I will wait until I am in NY and settled…. at least I think. But really hoping I won’t need more.

So there you have some Acro-truths. Late diagnosis, damage is done. — Things grow. Find Doctors you trust!

And you are your own best advocate. Know your rights. Don’t take “no” for an answer. List your rare disease. It is the root of your problems – it goes first and demands respect. You deserve respect. Respect yourself and know your illness. …This is also how insurance covers procedures. If a doctor is unwilling to list acromegaly, they are unfit. Fire them and move on.

I hope that’s it for this year – heck it’s practicly November now. I hope I can go 12 months without anesthesia.

I hope you are reading this… That you feel empowered to know you deserve the best quality of life.

This starts with understanding acromegaly. If you’re new to acromegaly take it step-by-step. If you have been diagnosised a while keep lists!! Use my link to download the app!  Little changes can add up to big things. It may take years to notice but be aware.

Health Storylines chose us — Arco-patients. Download the link… If they are missing a  symptom let me know!

Note: No two Acros are alike. Don’t let anyone tell you we are… That’s how things get missed.

Get yourself some knowledge… Be asked what kind of medical professional you are?

 

#HealthStorylines #acromegalyalum #acromegalyacademy
#acromegalywarrior #keepgoing #vivelafrancenc

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