Sikcell: People living with Sickle Cell

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how do u deal with doctors that dont belive your in pain or ask u wat dose of pain meds u take and then tell u that oh that cant be thats 2 high of a dose im only gonna give u half of that or less?

sometimes i get so mad because they dont kno how we feel i dont even think that they would be able 2 handle wat we go thru

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Permalink Reply by Sickle Cell Warrior on July 16, 2009 at 9:16pm

Wow Kilah,

That's abysmal treatment you received. I just wrote the Board of Directors at the last hospital where I was treated badly. It's a very similar situation, though not as intense as yours. I'm so sorry you had to go through that! I agree that Cancer patients are treated with much more dignity and care. It's ridiculous how much shit we Sickle cell Warriors have to go through.

If you are ever in a similar situation like this (and I hope you aren't), take a page from my book. I called the Hospital line, asked for the Quality Improvement or Risk Management office and left a very upset message. I also told the priest, a social worker and the Unit supervisor. I complained to everyone that came into my room and raised such a ruckus that eventually the CEO of the hospital and the Chief Medical Officer came down to apologize profusely. After that I was treated like a VIP and all my needs were taken care of. Remember, a squeaky wheel gets the most oil. Take that pain you are feeling, cry, scream and make everyone realize that you are there and in pain. It's usually when someone higher in the chain of command gets involved that stuff happens.

I sincerely hope that this was a once in a lifetime experience for you and I hope it never happens again. Hugs!

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Permalink Reply by Dave on July 14, 2009 at 7:42pm

it crazy cause pain is now federal its been a sixth vital sign for how long now
no medical personel has the right to deny pain
its ashame we have to exagerate pain to get adequate pain relief
i hate when i tell them the dose and they give something lower
if ur an MD and arent sure of dosing of meds u should start low and titrate up while monitoring bp resp and heart rate
as long as these r ok u can up the dose until relief is acheived
i wish i could write a protocol for SCD pain crisis and it get made into a law
I hate it and we go through way to much to have to deal with staff and the BS
,ost of SC pts know more than a lot of Mds
I give orders when i get sick cause all they know is what the book tells them or they foll some stupid weight and dose chart

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Permalink Reply by Sickle Cell Warrior on July 16, 2009 at 9:19pm

Dave you are so right! The sad part is that some ERs have developed a pain protocol for sickle cell anemia. It's just that the doses are so small that it doesn't really matter. The one at the last hospital I was at was 1mg Dilaudid every 2 hoursx3 doses then discharge. Are you fucking kidding me? That doesn't even touch a fraction of my pain. Grrrrr!