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surgery and clusters


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Well, I had put off minor surgery for 5 years due to CH. Since I have been PF for over a year, it was time to get it done.

Beginning of June I start with the surgeon who did a hernia repair 20 years ago. Travel 100 miles to the appointment. He is nice (our kids were classmates years ago) and remembered my kids. He had purged his files and so had the hospital. Still , he says sure, lets do it. First available is in two weeks. Great!! The morning when I am dressing to go down for my pre-op, I get a call from Dr's office cancelling my surgery. He is moving his practice and won't be available at that time. OK, I will wait, when can he do it then? Sorry, he is closing his  practice!! He is mid 55's. I call back the next week and ask for a referral to someone he trusts. A week later I have the appointment schedule. Meet the dr and set up the surgery date. July 17th with pre-op on the 16th. I can't do a phone check in due to CH and have to get with  the pre-op nurse about anesthesia and meet the anesthesiologist. Turns out that I am only meeting with the nurse. He tells me the anesthesiologist will talk to me on the day of surgery. That was a waste of money and time! >:( My 'early' surgery time is 10:20!!!  No food or water after midnight, even though the surgery is after 10. Actually, according to past ops, I know the midnight cut off is for 6am surgery. Nurse says, "Oh no!!! Nothing after midnight. Be at the clinic at 8:45. Not off to a happy start. So, I have my CH coffee at midnight and hope for the best.

At the hospital, doc is upset at the short list of pain meds that I can take. Mainly, no codeine or tylenol can be tolerated. Tylenol is in everything now. So, his attitude is I will see what I can do.

Next is the anesthesia dept head. Nope, never got sick or a problem with a general. Great. Next, since he runs the meds in recovery, I explain my CH and need for 15-25LPM of O2 if I get an attack post surgery. 'We don't have that!!!!'  'NO' Sir, a cannula won't work and neither will a concentrator. 'I well see what we can do.' 'Do you put caffeine in the IV or would you please?'Glare from him. 'No can't and won't' He stalks out.

At 10:00 I start a hit. Think, think. Should be able to get thru till they put me under in 10-15 mintes. Hang in and rub the noggin. At 10:20 two OR nurses poke their collective heads in the door and say that they are and hour behind' I tell them I need caffeine immediately because I am getting an attack and if they don't want to treat me for a concussion from banging my head on their wall. They vanish. Ten minutes later I am shaking all over and my daughter heads to the nurses desk to work on the caffeine issue. Either in pill or even better in the IV they have running already. Twenty minutes later they show up with 2 caffeine pills. Then, a strange nurse comes in and starts to hand me a cannula. Again, I explain, rather erratically now due to Kip6-7 that it will NOT work as I told the head of anesthesia at 9:00am. She heads for a concentrator. 'Don't bother, I need pure high flow O2. I have my own mask. You can't bring your tank into the hospital. >:( She leaves and I have some relief from the caffeine.

At 11:00 the anesthesia nurse pops in with a pre-op. shot. It really helps. she says she will be back in 10 minute to take me back to OR. At 12:20, we head out. Iv addition is fading ( never fell asleep or got silly on it), so I am talking away until they add more meds.

Husband gets a call shortly after 1 and I am headed to recovery and should be back in my room in 1 to 1.5 hours. At two hours, my husband went looking for answers about where I am and what is the hold up. No answer from anyone. No one seems to know where they put me. Hubby catches the head of anesthesia. I appears the the nurse OD'd 3-5 patients via their IV. Gave everyone enough for for 3-5 hours of surgery not 1!!!! They got the others revived and awake but were having trouble with me. He had been at my side for over 2 hours trying to wake me up. Had been giving me meds thru a separate shunt and vapor set up. Being 110 instead of 200-300lbs made it more difficult. DUH!!! Then, he got past his fury about the screw up and tried to back pedal from what he said.

They brought me back to my room at 5:30 and I still was talking gibberish and  some guy was leaning over me yelling at me to talk to him. Family had been sent out of the room. I told the guy veerrrry slowllyy that talking was difficult and stop yelling. Then, they let my husband back in the room. I had had no pain relief since surgery and asked for a shot. Nurse informed me that they did not supply shots for pain relief and were trying to track down a pill for me!!!!! At seven pm they show up with one 10 Oxycodone! They said that it I did not throw it up they could actually give me another!!!!! No pain relief. At 8pm they bring me the other pill. "Let me go home!!!" No, we can't because they can't find a pharmacy that carries the prescription med needed to take home Mepergan Forte (sp). I suggested they just get the Demerol and anti-nausea separately. Nope. And, they had to wait for my surgeon to call them and ok something else!!!!!

So, a surgery that was to last 3-4 hours before discharge lasted past 12 hours. They put me on a pill that I refused before because of the addiction potential, gave me no pain relief while I waited for them to fix their screw up and damn near died. Idiots wanted to keep me over night and my husband told them not on your life considering what they had already done to me.

Did I get a call today to see how I was feeling? Nope. Was I given a follow up appointment? Nope. Told to call them

Did I go prepared to best of my ability? Yep. Did they screw that up and call it migraine????? YESSSSSS.

I suggest that caffeine pills be bought before surgery and taken the morning of surgery. It would have helped, but I did not know such a thing existed. Bet I get charged 80.00 for them to bring them to me.

I demanded a detailed hospital bill before payment would me made. I will not pay for all the extra recovery charges and meds that they had to give me to save my life from their screw up!!

Yes, it is a rant. :-[ But, it is an example how dangerous hospitals and arrogant people can be.

spiny 

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Damn spiny what a nightmare! Sounds like negligence to me. I think any lawyer would take the case based on the screw up alone... but their inability to accommodate people with special needs, unforgivable. I would at least write a letter demanding some compensation toward the bill for the pain and suffering they put you through. You gave them all the info they needed to be properly prepared, and they chose to ignore it rather than make an effort to understand what you were telling them. Times like these make me wish I went to law school instead.

Wishing you a speedy recovery and PFDs to come.

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Dangerous and arrogant indeed.  >:(

That rant was absolutely called for. Glad you somehow made it out of there alive and back to the safety of your home! :o

I bet you're glad to have that surgery over and done with. May it be the last you ever need.

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Spiny,

I had noticed your absence on FB yesterday and had a bad premonition about it.  Glad you made it through that heinous ordeal, and hope it turns out to be worth it health-wise.  I'm with DM on this -- sue the crap out of the negligent parties! >:(

Sorry you had to go through that abomination.  You did everything right.  No wonder you don't like to come off of your mountain!  :(

Bob

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Well, here is the bad news. One low kip yesterday and two waker uppers tonight. Sitting here drinking coffee at 2am. I have never had a summer cycle. >:(

Perhaps it is because they pumped me full of Co2 for Laproscopic surgery. Yesterday, my waist was 10 inches larger than normal from the shit. That hurts!!! At least it has traveled down from my lungs so that I can draw a full breath now. Still can't hyperventilate yet though.

Let them keep their Co2 and revert to the old knife for me. Yeah, it is faster for them, but they pump ya with Co2 and run their tools all around under the muscles looking for holes to patch. That leaves you so sore that you can't cough or sneeze without curling into a ball of pain. "The pain will be gone in three days, don't worry!" I threw their Oxy down the toilet. Told them I could not take that shit. Spent last night puking from it!!! >:(

I was totally prepared for this too. They just treated me like a ditzy woman who knew jack about anything. After all, they are the DOCTORS. I am just a little old lady who is addicted to coffee and O2. :'(

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What Purple said.  :'(

And it's downright scary about the possibility of a surgical procedure like that (and/or the meds) inducing a CH cycle.  :o

Now putting in a request for last night's waker-uppers to just have been rogue hits.

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Well, apparently I am screwed. Hit yesterday afternoon. Killed with coffee and O2. Laid down for a while this afternoon to lessen the pain from surgery. Dosed off and woke up to a ramping up BEAST in my head. Not a knock knock, anybody home hello rogue either. Coffee and lots of O2 and here I sit. My body is shaking all over and the shadow remains. Really looking forward to going off my mountain on Tuesday - NOT!!

:'(

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Really looking forward to going off my mountain on Tuesday - NOT!!

Oh NOOoooOO - that elevation change is one of your worst triggers!!! :o :o

I know your upcoming down/up mountain trip must be for some absolutely essential thing like stitches removal - otherwise I can't imagine you taking that trip right now. Dammit.  :o:(:o >:(:o :'(

This sux.  :'(

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spiny

Here's hoping for a good ride through the altitude changes.  I'm wishin' for a big 'ole ridge of High pressure to come your way.

Nothing like the double whamy of having to combine one of life's crappy ordeals (like surgery) with the pleasure of CH.  You must be one tough lady!

Hang in there kiddo, we're with ya all the way!!  ;)

weatherman

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Wishing you all the best spiny, I hope your PF life returns asap.

On my last hospital visits I always had my own O2 with me although it was not allowed (it was impossible to get high flow from hospital gear). Plus my own treatments not allowed either (vitamins, herbs). Also my laptop from which I consulted other sufferers + researchers worldwide. I took the lectures in other ear and out the other ear.

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Thanks to all of you for your empathy and support. :)

Now approaching full blown cycle. Hits at 3, 7, and 10 yesterday. Will start work on that really soon as it does not usually ramp up this damn fast. The 10pm hit is the kicker that says get it in gear. Lasted over an hour even with O2 and coffee. Stopped pain meds from surgery yesterday am to prepare. Just going to push the envelope on the 5 day thingy. Can't loose anything by doing that. Todays' second hit started 10 minutes ago.  >:(

I'd trust a sanitation worker more.

  ;D ;D ;D Next time I am going to my favorite Vet!!!!!!!!! She is smart and listens well!  :D

Off to the O2. Will check back in by Wednesday.

spiny

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Next time I am going to my favorite Vet!!!!!!!!!

HA! That is probably NOT a bad idea. ;D From my limited experience, there doesn't seem to be as much of that lovely combo of arrogance and ignorance in the vet profession as can be found in some of the people doctors...? Well at least your animals are in good hands.  :-/

Full blown cycle??!! AUGHHH. can't blame ya for envelope pushage.  :'( Dam I hope that O2 is kicking in.  :o :o

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