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drew_wymore

drew_wymore

Joined
Nov 15, 2007
Messages
1,806
I went to my GI appt today, after our conversation last week on the phone my expectation was that I was going to be able to start my Humira treatment today. That didn't happen ... This woman was so completely unprepared to work with me today that it defies logic.

She had no clue that she had never ordered labs for me which she said were absolutely necessary before starting treatment (umm why didn't she order them last week so that it would have been taken care of prior to the day I was going to start treatment?)

She had an attending come in and ask me about my symptoms, how long they had been going on, what medications I had been on to try and treat it. He then says well the capsule study indicates problems throughout your terminal ileum which is consistent with Crohn's (WHAT THE ****! My GI told me twice that I had confirmed Crohn's .. now they are stating its "consistent with" ... man just MAN THE **** UP AND SAY I HAVE CROHNS, stop dancing around it goddamnit).

So I asked about getting some form treatment today, she left the room and came back about 10 minutes later explaining that the protocol for that clinic was to have the first 3 injections done at the clinic to make sure there are no reactions. Ok, fine ... fair enough ... So lets get a shot done ... Oh the ONE ... LET ME REPEAT THIS, ONE ... nurse who is authorized and apparently capable of giving these injections is out sick and nobody in the group knows when she will be back (I guess she's out on leave) .. and .. I can't make this **** up .. The GI tells me "Just hang tight"

My sister was with me, and she is a nurse and she starts going nuts on her, asking how in the hell an office can have only 1 nurse capable of giving these injections, what do the other Crohn's patients there do? The doc starts stuttering and stammering and says she has asked 4 people and nobody seems to know when this nurse will be back. My sister offered to do it and the doctor said she couldn't let us do that ... obvious reasons of course, she says "well Crohn's is hard to diagnose and we don't want to put you on a powerful drug that could harm you without observation" ... I even mentioned that I had watched the video on myhumira.com and she was surprised.

It was at this point that she put her hand on my knee and said "you're not happy with me" because she could see tears welling in my eyes and the fact I was starting to shake pretty bad. I gathered myself and said .. I'm not angry directly at you, I'm angry with the situation. I'm angry that my last GI DICKED around for nearly a YEAR and wouldn't commit to a diagnosis. I have been symptomatic for over 2 YEARS, you guys finally say its Crohn's and want to put me on Humira yet the ONE nurse who can give me the injection is out sick indefinitely and that I need to hang tight. I said "This is ******* ********, you or somebody needs to stop ******* around and help me". I said you're looking me in the face, telling me you're confident in whats wrong, you know the logical steps to treat me yet you're denying me ******* treatment to me and doing nothing but making ******* excuses and it's unacceptable. I also mentioned that this appointment was an absolute ******* waste of my time. Its about 60 miles round trip to the Uni to see her and gas still ain't cheap.

I got up and walked out after I shook her hand, apologized for my language and went to get my lab work done.

I have names and numbers of people in the department and I'm going to start calling them every 15 minutes starting tomorrow morning until someone does something. I am tired of being sick, I'm tired of being exhausted, I'm angry that this illness cost me my job. Maybe Humira won't work, but I'd rather try it then do nothing, I've been medication free minus pain killers since April, toughing it out is no longer an option for me. Maybe it will work, maybe I'll get a month, 2 months, 4 months like MBH and you know what? I'll take it, I'll take 1 ******* day where I don't have to think about and deal with this ******* disease.
 
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You have every right to be pissed and I don't think you should have even apologized. I would demand that they order the medication. Get it and inject it yourself. If you want someone to observe you bring the pens to the ER, pull down your pants and inject all four into your thighs. There will be plenty of people observing if you react.

BTW, my doctor did not require me to get labs prior to starting Humira. My labs when I started were 2 months old. I can't stand how inconsistent our health care system is. The policy for your doctors office is different than mine!?! And, perhaps they could call the Humira rep. She could come demonstrate to the physician who should be capable of doing 4 injections! My god, they are doctors. Doctors are so lazy, they can't even take a few minutes to do injections. Something they probably learned their first week in med school.
 
I feel everything for you Drew, that's beyond atrocious. I don't know what to say that won't sound forced or trite. I'm glad your sister was there, that may help out in the long run, and perhaps their ineptitude was thrown in their face enough for them to realize change is necessary. I really can't say anything more, man hugs.
 
When MBH stops climbing on Drew, I'll have my chance (for a hug, not climbing).
 
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It's bad enough being messed around like that when you're feeling in the best of health (does anyone remember what that's like?).... you just don't need the extra stress. Hope you get on the right treatment soon.
 
Sorry this happened to you Drew.

In an odd way, creating a scene is often an effective way to get something done.

Give 'em hell.
 
absolutely disgusting!! i am angry on your behalf, Drew. possibly, its a good job i don't live where this hospital is, or else they may have had a visit from an extremely explosive fellow Crohnie!

just hang tight?? grrrrrrrr!

ok.. does the hospital have a complaints department? is it governed by a body you can approach? i would use the anger to hammer them from every direction, and keep on doing so. also, see if you can think of anyone to back you up in writing - doctors, nurses, pharmacists - anyone who knows your situation & who might make a difference.
 
I think there is a point where you have to stop being polite and start kicking off a bit. Hopefully you might get through to someone.
 
BWS1982 said:
When MBH stops climbing on Drew, I'll have my chance (for a hug, not climbing).
Click to expand...

WHEN I stop?? I think you mean IF I stop - and that doesn't look like that's happening anytime soon! You can just join in maybe, 'cuz I want to see some man hugs too!!

Drew - that really sucks. Too bad that office isn't more organized. You would think the doctor could just do the injections, duh - she's a DOCTOR. If for some reason the ONLY lady to do the shots isn't coming back soon, you could suggest the doctor watching the video online and then doing them for you. I'm surprised you even need someone to do them, I did all 4 at home - with no medical pro there. I didn't even think that Humira had that risk of reactions like Remi does. Hopefully your benefit will be worth the wait. Sorry - hope you get 'em soon!
 
Why won't they let your sister inject you in their office. She knows how to do an injection and then they could still observe you. This is awful, I wish everyone could go to the same GI that I see, they are wonderful. I have never had any problems like this before. I am so sorry that you are so frustrated and upset but you have every right to be. They are screwing with your health. Just when you think that finally you have a diagnosis, but you still can't get proper treatment. Come on what is wrong with this picture. Hopefully this problem clears up soon. Good luck.
 
I'd venture a guess it has to do with liability, as stupid as it all is, they don't want to have any part if there's a negative result from their "yes, your sister can do it".
 
I'm usually a very calm person, even in the face of adversity. I can put a smile on my face and move on but this just blew my mind. Afterwards I even thought to myself, am I being too dramatic?

Anyways ... I heard from the patient care coordinator from the clinic yesterday and she has faxed over the script for Humira to Walgreens and she's working on getting approval for it from the insurance company. So as soon as the approval comes through and the pens are ready at Walgreens I'm good to go, I do have to go in for "training" but I can live with that. I just want to move forward instead of sitting in neutral. The one side effect of pain killers is at least they sort of slow down the diarrhea but I fear another obstruction so I try and be ultra careful in their use.

This should go without saying but I appreciate everyone's encouragement, kind words and well wishes. It really does mean the world to me. It is so nice to have a group of people who know exactly what I'm going through physically and to an extent know what its like dealing with doctors who are more worried about taking risks then being right and taking care of the patient.
 
Hey drew, everyone gets this way from time to time. DO NOT FEEL BAD for your outburst. Everyone here knows what it's like to feel like CRAP for so long and then to have the situation dragged out and to feel let down.

*Hugs*

I hope you get your treatment worked out and you feel better really soon.
 
I think even a saint would have lost it. You were actually pretty restrained considering! I'm glad they have things moving along now, and I hope you find relief soon!
 
Last time anyone crawled all over me involved booze and a posting on craigslist. Maybe I should get mad more often.
 
So I just talked the PCC and she said spoke to the insurance company and they said they could do the approval over the phone but that the prescription had to be given to a mail order pharmacy (wtf?) ... and she wanted to make sure that was ok with me .. Even though I have no clue why in world they would want it that way whatever, so I agreed. She's calling now to see if they'll approve it although she said "don't hold your breath" ...
 
My Humira is mail order too. It comes in a styrofoam box with ice packs. It was fine even in the summer, and they can tell you exactly what day it will get there. It's never been off even by a day, so if you aren't coming home right after work one day you can make it another day. Once though, the Fed-Ex guy left it at the neighbors house. Brilliant! $1300 worth of perishable meds left at the wrong address. Luckily the guy saw it and brought it over right away.
Seems stupid that it comes from Florida, and I'm in New York. I would think there would be something closer. I think Mike got his right at Walgreen's if I'm not mistaken, or someone here did.
 
My Cimzia is FedEx'd the same way, styrofoam container, 3 ice packs and thick wrapping paper. Arrives on the day intended, at around the right time too.

Once my Remicade came here by mistake, they told me that was an error. It was $4000 in meds that I wasnt even expecting, good thing it worked out and didn't happen again, I would have flipped if something happened to it and they expected me to pay for another or something.
 
The pharmacy called me today, I missed the call but the voicemail said they wanted to set up delivery so I'm wondering if the humira got approved and the "one nurse(tm)" forgot to call and tell me. I guess I'll know tomorrow when I call the pharmacy and have a heart attack when they tell me how much its gonna cost.
 
Or we can just get married quicklike, and get you on my insurance with a small copay.
(now that you've seen how nicely our names look on the napkins)
:pillowfight:
 
Awww hunnay =) Its only 200 every 3 months with 300 upfront now for the loading doses and first 3 months.

I think your name would go good with my last name though =)
 
drew_wymore said:
Awww hunnay =) Its only 200 every 3 months with 300 upfront now for the loading doses and first 3 months.

I think your name would go good with my last name though =)
Click to expand...
WHEEEEEEE!!!!!!!!!!!!

Yeah, you noticed that I changed my trademark squeal since you violated it. Pout - I thought that was OUR sound effect. pout again.
 
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