Sikcell: People living with Sickle Cell
We still Hope
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
Replies to This Discussion
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Permalink Reply by Try on
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I must say, i envy you. I have to BEG for meds when im in crisis! Im given diclofenac 75ml IM. It does not even begin to ease the pain so i have to cry my heart out til some doctor who has an idea of my pain prescribes the smallest dose of pethidine which i get IM. After it wears out(usually after 2 hrs) i have to console myself in tears for 3.5 more hours til the next shot.The strongest pain tab im given is diclofenac 50mg. Its agony.
Im actually only hearing of the meds others use for the 1st time here. My doctors dont know how painful a crisis is. I get discharged on paracetamol!!!!
The strongest tablet i have ever been given is codeine and it too was so controlled that i couldnt get more even when i was still in severe pain. I have had to painfully endure every crisis i have had because drugs that releive my pain are too controlled.
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Permalink Reply by Sickle Cell Warrior on
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For those that don't know...Diclofenac is similar to Toradol in the US.
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Permalink Reply by shimenese on
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I hate when teens mess it up 4 other patients that r really n pain im only 20 so im don't much older than they r but I have never exaggrated my pain or dose that I take because I haate bein druged up as it is but when I do more meds then usual bucause I in so much pain I can bearly breath I mean u would think they would do somethin I guess it can have 2 do with where I live also because sometimes when I go 2 da er and say im in a pain crisis from my sickle cell they say well wat is that how can u call ur self a doctor and not even herd of scd but I do take good care of myself I take herbs and anythin that can help me but I don't only have sickle cell I also have sarcoidosis so that another reason I get so sick and I hate that that's somethin I really can't do anything about
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Permalink Reply by Bukky Ade on
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uhhh teens?
we have pains too!
maybe you meant to say "teens w/o sickle cell"
cuz Im 16 and i have the same prob sometimes....the only thing they wanna give me is Tylenol w/ codeine..i have to BEG for some percocet or w/e else
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Permalink Reply by DrD on
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I agree with Shukura, it is education and relationship building. If possible, when not in crisis, get to know the sickle cell team and the hematologists. When in crisis, ask for these people and ask the attending physician to discuss with your hematologist that knows you well.
It is also important that you know what you are talking about.
If you don't see a regular hematologist (doctor) and go to the ER only when in pain, then you should keep detailed notes of your medical records (see the posting by Vixen). She asks for and keeps her discharge summaries. You should know and have written down, the doses and names of medications, key blood results such as Hb, Retics etc and complications such as pulmonary hypertension, renal disease etc.
If you are able to give a comprehesive account, it goes a long way to convincing someone else you know what you are talking about.
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Permalink Reply by B. Jewell on
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That is so true. I have had doctors talk to me about other patients not "being educated" about their illness, and not even being able to recite what medications they take at home. This makes a big difference in whether a doc/nurse will take you seriously.
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I been tryn but my new doctor is never thhere I go 2 a childrens hospital and im in the middle of changin hospitals because im 2 old 2 be admitted there and I never had a problem with anythin while I have been at childrens but im dealin with new doctors so that why I have so much truble lately I know my stuff when it comes 2 my illness im a mentore 4 younger kids with sickle cell I have never had a older influince 2 give me advice so thank u 4 takin the time 2 help me out
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Okay the 2s and 4s are driving me batty!
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I only put up with that twice in the ED I usually visit before I asked my hematologist to make sure my records are corrected because my tolerance is so high. She did so promptly for all those residents and nurses who can't get with the program and understand that just because I weigh 110 lbs you aren't going to kill me with 2 mgs of Dilaudid. I can take 6 mgs at one time and not be phased. The doc was like, I know, but I don't want to put you in a coma. Well, once she saw my pain was unrelieved after 3-4 hours, she upped the dose like originally stated in my records.
I don't have a problem with this typically at the hospital I go to. Its often me asking the doctor to reduce my medication once I start feeling better. I do have to ask the residents to increase my medication if my pain is not being relieved appropriately (or sometimes I don't they will do so as needed according to my documented pain scale in the nurse's notes). The residents are the ones I have to educate. The attending hematologist or oncologist totally get the job done. I can't really complain though-compared to the care I have received before, this place is a God-send. Besides, they use PCA's only (patient-controlled analgesia). I once asked for bolusing (just meds q 3 or 4 hrs), and told the doc I didn't think I needed a PCA. They gave me one anyway. So, its no waiting for nurses to "feel like" responding to my call for pain medication. I have gone through pure hell before in that type of situation and I am thankful that I am at a teaching hospital that is excellent at what they do.
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Permalink Reply by MS.KNIGHT on
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I GO THRU DAT ALL DA TIME AND ITS HARD BUT I JUST GO 2 A DIFFERENT HOSPITAL R I STAY HOME AND SUFFER I PREY IT GET BETTER BUT MY PAIN IS SO OUT OF CONTROL DAT NOTHING WORKS 4 ME SO I'M MORE OF DA 1 ASKIN 4 MORE MEDS AS I SPEAK IM SEATING HERE N MAJOR PAIN BUT I USE 2 IT
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Permalink Reply by Neise on
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I am so pissed off right now! I got sick a friends house and passed out. As a result I had to be rushed to the closest hospital. First of all even though I came by ambulance they still sat me in the waiting room for 2 hours before they wheeled me to the back. I had to wait another 2 hours before a doctor saw me. When they finally gave me some meds it was not enough to ease my pain. I suffered through it hoping that once I was admitted to the floor it would get better.....NOT! When I got to the floor I was assigned a doctor. I told the doctor up front what pain medications I am usually given when I'm admitted to the hospital. She did not believe me and refused to give me enough medication to keep me out of pain. As a result I have been laying here in the hospital CRYING in excruciating pain! When the nurses come and see how much pain I'm in they call the doctor to see if she will increase my meds. She still refused because she said the amount of medication I want is too much. For one, it's not how much medication I want it's how much medication I NEED! I even gave her my regular hematologists phone number so she could verify the amount of medication I take when I'm am in a crises. She CLAIMED that she could not get in touch with my doctor. I have been in the hospital since Friday and today is Monday. I begged her today in tears to just please help me because I am in so much pain. She told me that she would give me whatever I wanted for 24hours and afterward I would have to go back on the medication I take at home. This experience has been very painful and degrading. I know that if I were a Caucasian (no offense to anyone) cancer patient I would not be treated this way. When will we get the respect and consideration we deserve? When will our pain be noticed and validated?
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that is really ashame
i would call a patient advocate service
get the rns and mds names and threaten them by telling there boos and keep complaining
its make me so angry to hear this and to have gone through this
i think everyone here should ban together and write a pain protocol that we all can agree with and send it to all who can do somethin about it
ie: congress , senate , heads of state and all who will listen
and then get a petition going
sorry for the language but what kinda shit is ill give u whatever u want for 24 hrs and then u go back to what we give u ....its like the dr saying here ill give u this to shut u up but then u gotta go
i wish i had the power to make who ever i wanted to feel the pain that im feeling right now
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