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        Supporter's Corner >> Supporter's Corner >> Just Checkin In!!!
        
(Message started by: woobie on Nov 13^th, 2002, 1:40pm)

Title: Just Checkin In!!!
Post by woobie on Nov 13^th, 2002, 1:40pm

Hello
OK.. I have been BUSY!! I've been trying to get oxygen for Ramon.. what a chore THAT was... but I finally got it. Altho, I did have to give in a little and not get exactly what I asked for. I asked for everything that was in the "oxygen primer" and the things on the answers to my post about it. The non-rebreather mask, bubbler, the regulator that goes up to 15L/m. That's what I asked for..........

What I got was the mask I wanted... no bubbler, and only --- get this --- 4L/m!!!! :-/

So, I called the Dr back and said.. "Wait.. we need 10-15L/m"
and he said "We're gonna start out with 4 - if it doesn't help, we'll go up."
To which I replied... "Well, isn't that a waste of time and money, at my husband's expense?"
He said pretty much, that this is what we're getting, and until I get to the neuro, and the neuro changes the script, that's what we are getting. If it doesn't work, call and he'll up the dosage.

Now, does that seem right? I mean, I know Dr's don't like to be told what to do, but I was NICE about the whole thing. I wasn't rude, didn't question his authority or competance (SP?). Maybe he's right, and we should just see what works first, I dont know.

I just feel so ... well.. I didn't WIN. I lost that fight, and I don't like it. :-/

The only thing we got that I fought for was the mask. They were just going to give us those things that go into the nostrils. I said NO. And that was easy.

Everything else was NO NO NO, and I lost. Should I have been rude?? I mean, dont get me wrong, I can BE RUDE... but should I have been? I told the lady at the medical supply place.. "I dont care if the insurance wont pay for a bubbler.. Ill pay for it." NO go.. Dr RX only. And the regulator has to be DR RX only too. I can't just buy a regulator. Man, that sucks.

I mean, when I called and said.. "we need imitrex shots so he can do it himself".. they called it in right away.. no questions.
When I called and said.. "please refer me to neuro.. and one who KNOWS about Clusters" - he said "alright"... and within two hours, the neuro's secretary was calling for an appt.
When I called and said we need oxygen.. it took a week, but we got oxygen - and a non rebreather mask. SO, they have been nice, and havent questioned me - till now.

(I felt I "had the power" when I told them we needed the imitrex and got it right away.) LOL

Is this just the beginning??? Is this what it's gonna be like?? Ramon in pain and miserable all the time, and me fighting with DRs?? Geez, I hope not. I expect the loss of sleep.. no problem. I expect Ramon to be in pain, and me to feel helpless.. but I didn't figure I'd have to fight my doctor too. Am I feeling frustrated for no reason?? Or am I just tired???

It's been a LONG week, people!! I work nights, and have to do all this during the day.. so I can't sleep. And then, I can't sleep because my mind is going a BAGILLIOn miles a minute. I have to sleep by the phone in case the Dr calls, or Ramon with a HA.. and all the sales calls - GRRR!!! >:(

Right now, I should be in bed, but I am WIRED for sound. I'm kinda pissed about the O2 thing, and worried about Ramon, and I know the kids will be home in an hour.. so what's the point of laying down now.. and that pisses me off MORE!!! And - dang it - I don't know what I'm gonna make for dinner. :(

We live 1/2 hour away from the O2 place, and I still have to go get that. Maybe I should just do that now.

I guess my question is.. should I settle for 4L/m and see what happens.. or should I start hassling them? I mean, even the lady at the med supply store said.. "cluster patients usually have atleast a 10L/m - but I can't tell the Dr that. They get kinda cranky about that". OK, yeah - I understand that. Far be it for the medical supply place to tell the DR what is normal.

I need to go to bed. I am, again, just venting. Thanks for being here to let me do that!!!!!!

Tina

Title: Re: Just Checkin In!!!
Post by Margi on Nov 13^th, 2002, 2:22pm

Hi Tina,

Well, the way I look at it, you have two options. One, take it at 4 lpm and put in yet ANOTHER night of no relief for Ramon. (4 lpm isn't going to do much more than cause him to get frustrated). Then, FIRST thing in the morning, get back on the phone to this idiot doctor and bitch with all your might to get to the 12 - 15 lpm that Ramon needs. If you do this, wait the one night, it might mollify the doctor's ego enough that he'll give in.

OR...and this is probably what I would do...print out stuff from here and TAKE it to him today. Fax it, email it, whatever it takes, but get the doctor to read that clusterheads need a higher flow rate. Maybe even the O2 supply house has some literature at hand, but there's lots here.

Supporters have to have sharp teeth girl - we are our sufferers best defense and, quite often, their only spokesperson. 4 lpm is really just an insult, if you ask me. I'd bitch loud and long, but that's just me. :)

Keep us posted and hang in there, gal.

p.s. can you not just call the neuro's people and tell them what happened? some neuro's offices will prescribe O2 before actually seeing patients - it's pretty safe stuff. the neuro's office should recognize that this is a ridiculous flow rate for a clusterhead. go AROUND the other doctor.

Title: Re: Just Checkin In!!!
Post by woobie on Nov 13^th, 2002, 2:36pm

Thanks Margi...
Doin it RIGHT NOW>. (holding.. as a matter of fact)
The neuro's nurse says "I don't think he's prescribe without see him.. but I'm going to go ask." So, I'm holding. GRRRRRr (another dang 1/2 hour on the phone, im sure)

HEY MARGI... how come I don't see a pic of you and yours on that picture page?? Are you there?? What's your sufferer's name??

Thanks - again.. Now I know for certain that I should have went with the good ol' instincts and refused the 4L/m... which is what I wanted to do.. but I just didn't know. I love this site!!

Ill be back!! :-*
Tina

Title: Re: Just Checkin In!!!
Post by Margi on Nov 13^th, 2002, 2:51pm

Hi Tina, yep - Mike and I are there....under the M's.

If they come back to you and say they won't prescribe without seeing him, REMIND them that you're TRYING to get in to see them, and DO have the appointment booked, but in the mean time, Ramon's GOT to get some relief. That you're worried about his mental state at this point if he can't find relief TODAY. That usually catches their attention.

Title: Re: Just Checkin In!!!
Post by Jackie on Nov 13^th, 2002, 6:12pm

Question here....

Are you going to use the non-rebreather mask with only 4 lpm of oxygen?

Jacks 8)

Title: Re: Just Checkin In!!!
Post by jonny on Nov 13^th, 2002, 6:45pm

Question: Do you have a regulator that goes higher than 4 LPM and are waiting for the Doc to tell you its ok to go above 4 LPM?

Or do you have a regulator that ONLY goes to 4 LPM?....Cause I've never heard of a Reg that only goes to 4 LPM because that low of flow as a high point is usless for anything!

A normal relaxed person tends to breath at 6 LPM, close to dead would be 4 LPM.

Get a new Doc!!!!!

........................jonny

Title: Re: Just Checkin In!!!
Post by Jackie on Nov 13^th, 2002, 6:51pm

jonny,

I'm not even sure the 4 LPM will properly inflate the
bag..... ??? If not properly inflated it could be a danger.
Correct me if I'm wrong... ???

Jacks 8)

Title: Re: Just Checkin In!!!
Post by Margi on Nov 13^th, 2002, 8:16pm

Tina and Ramon - I hope you two are reading Jackie and Jonny's warnings here!! Your low flow rate could be a danger if you're using the mask!!

Thanks Jackie for catching this and Jonny, for confirming. Jackie - we'd all be lost without you!!

Title: Re: Just Checkin In!!!
Post by woobie on Nov 14^th, 2002, 9:30am

OK.... whewww - that is ALL taken care of.

What happened, is I was so dang tired, I fell asleep before Ramon got home.. I woke up this morning, and he was sleeping peacefully.. (that was good!).
I slept from 5pm until 7 this morning.. I needed it!!! I slept like a rock.

The regulator goes up to 15.. so we are just gonna ignore that little 4 lpm sheeiit. I don't know if the Dr called them to change the order or not.. (because I fell asleep) - but the regulator goes there.. so I don't care.
:P
I had never seen an o2 tank or anything.. so I knew nothing of what the regulator would go up to or anything. The lady at the place that gave him the tank said that most CH people start at 10.. so that's what he'll do.. this is correct.. right??

Thanks for your help.... ;D
all is good now.. I can relax (for a minute).

:P I WIN!!!!! hee heee hee
Tina

Title: Re: Just Checkin In!!!
Post by Margi on Nov 14^th, 2002, 9:48am

uh, Tina? did the oxygen HELP Ramon?

(thanks again Jackie and Jonny, for the education last night and for being our watchdogs.)

Title: Re: Just Checkin In!!!
Post by Jackie on Nov 14^th, 2002, 11:10am

Tina,

Good to hear that you all got some sleep last night... :)

You are most certainly welcome Ms. Margi....we gotta take care of each other around this nut house... ;D

Jacks 8)

Oh.....and if Jonny and I qualify as watchdogs we're all in deep s*it..... ;D LOL

Title: Re: Just Checkin In!!!
Post by woobie on Nov 14^th, 2002, 1:03pm

LOL!!! Sorry Margi... he said that he didn't have a headache last night.. WOO HOOO!!

It FIGURES.. I FINALLY get the tank.. and he didn't get one. So, I guess... in one respect.. YES, the O2 tank helped. LOL!!! Just HAVING it made him not have a HA.

Well, I hope that's a good sign. :-/

And YES - THANK YOU Jackie and Jonny. I'm glad you said something!!!!

Apparently, the person at the healthcare place also thought the same thing.. the original referral said 4 lpm and the nose do-hickies... and then when they changed it to a non rebreather mask, they didn't change the flow order.. so they called the Dr themselves for a confirmation. Apparently.. THEY got thru - glad they did - cuz I couldn't get an answer from them.

Thanks
Tina
PS - ILL BE BACK!! ::)

Title: Re: Just Checkin In!!!
Post by cootie on Nov 14^th, 2002, 10:25pm

woobie......Hi there......jus me cootie.....hope all is well at yer house and Hi to everyone else of course ! Jus sayin 'hey'........... :)

Title: Re: Just Checkin In!!!
Post by MaureenG on Nov 14^th, 2002, 10:37pm

Tina:

The doctors ARE very frustrating, often when I have gone to the ER with my boyfriend, the nurses are more helpful, although that's not always the case. One time we went to the ER the nurse gave him the nasal tubes and I mentioned that he needed a nonrebreather, but he stated that they don't like to use nonrebreathers and proceeded to put in the tubes. Steve kept it on all of 10 seconds.

I don't know why they are so hesitant to believe that a patient would actually be informed about their condition. Sometimes I'd like to tell the doctors that they have a million conditions to inform themselves about, but because we only have one, we can spend all our time and energy learning everything.

I do have to say that we have usually had positive experiences with one of our hospitals in our state. It is the largest hospital and usually takes the most critical patients, so the wait is longer than other hospitals, but when Steve's headache gets to the point of needing the ER, we'd rather wait a little longer because they take his pain more seriously than the others.

Good luck to Ramon. Steve finally found a doctor to prescribe 02, and he's supposed to go back in a few weeks to get everything coordinated.

Title: Re: Just Checkin In!!!
Post by woobie on Nov 20^th, 2002, 7:15pm

Hello again..
Im still here.. In case you were wonderin!! ;D

I've been reading everything, but not posting much. Ramon went on a wild rampage the other night..(im sure you all read it) and, like I said.. I told him he was wrong & had to point it out to him. This is exactly what I mean when I say he gets sooooooo irritable. UGH! He got over it tho.. again

Well, the O2 seems to be helping. He hasn't had a bad one in a couple of days, and says he has shadows all the time. Keeps getting woke up in the middle of the night, (normal, i guess) .. but now he's just not sleeping. He's soooooo tired.
He's taking verapamil and indo.....(SP?) and the O2.. so is there anything he can take so that he could sleep BETTER in between the HAs? Even if he doesn't have a HA at night, he can't sleep.. and he's worried about taking anything that might conflict with his other meds. OH - and he takes Xanax too. But, that doesn't help with the sleep tho.. go figure!! It would knock me out.. but not him.

I am still in awe of this site and the people here. You all are a rare breed, and I'm so greatful for you all!!! I still find myself not able to respond to the ones in all the pain. I just don't feel like I would be "RIGHT" in doing so, and I honestly don't know what to say to any of them. I only have the experience of Ramon.. and I'm still new here. Sometimes, I actually feel guilty for being here.. like I dont deserve to be here.. I don't have it bad.. Ramon is the one who's got it bad. So who am I to try to respond to these people who are in so much pain? Ramon says he doesn't even feel comfortable responding.. and doesn't feel like he has it "bad" enough to be here.. And you guys all say everything that needs tp be said, & you are soooo good at it. Maybe one day, I'll feel better about responding to the newbies (newer than me) ...
I just feel so bad for everyone!! :'(

Where's MARGI???? Hope all is well with everyone, and thanks again for being here!!
TIna

Title: Re: Just Checkin In!!!
Post by cootie on Nov 20^th, 2002, 8:43pm

woobie.....I think Ramon is doin a wonderful job on here...he made one heck of a comeback !!!! I say stupid stuff and get flamed..ha-ha...or I read stuff wrong or post to sumthin and it's 5 posts behind by the time it gets on here and don't make sense....that frustrates me cuz I hate lookin stupid ! Happens all the time tho...ha-ha. I got really flamed on a 'pet owners' MB a year ago...wasn't my fault tho...people wrote in with critter questions and anyone that had any answers would help out. (I got a dog kennel and used to raise exotic cats)...sum kids were goin on and on 'bout 'scanning there pet cats' in there scanner...gettin that suprised kitty face to send out. I wrote it was cruel and could damage there retina's and sum girl jumped my ass for knockin MRI's (cat scans) and how helpful they are in the medical world and she went on and on about how terrible it was I was against cat scans....oh duh....she actually though they wre talkin bout CAT SCANS...verses scanning cats !! Boy was I ticked off and told her to read before she posts and got off that MB and never got back on one agin..I can't belive how upset I got over that !! Thought I'd share that lill tidbit.....man...I'm soundin stupid agin....kinda funny tho...bye ya'll.....