Guest guest Posted October 3, 2004 Report Share Posted October 3, 2004 Ann is there any other place close by where you could go and get the labs ? Most probably too late now. I would go one step further and go public with your treatment, or the lack thereof, at the local emergency room. Bad enough they do not have any experience with Mito, but to be ignorant in addition is more than unprofessional. regards, rosy, mum to max , 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 The way I feel, I think I must be hospitalized.... Massive fatigue, pain etc... write more later. Ann PS I hate for having to constantly defend ourselves!!! I am so sorry you AGAIN have had a bad time. I personally hate ER's and have had many of the same type of experiences. The doctors do not take kindly to us as patients or moms of patients giving them instructions or advise. The last time I was at the ER I had to enforce an overnight stay for Asenath as she was pretty ill and I knew she would have a SLE soon if she didn't improve. I wanted an IV placed and her to be placed in the hospital for observation as did her pediatrician and at the same time Zipporrah was in the ER for her first NG tube and the pediatrician wanted her to be inpatient as well to be watched as her reflux was quite bad at the time. The ER doctor had enough nerve to advise me on not having future children (as if I didn't know the possibilities!) and just wanted to send Asenath and Zipporrah home. I ended up forcing them to place Asenath and Zipporrah was with me so I didn't push for her to be inpatient as she would be there anyway. Once upstairs to her room it was a little tense for a while until I was able to speak to the resident further about her history and issues. She still didn't get adequate care, but I did establish the fact that we will NOT tolerate crap in the ER. It is unfortunate that when doctors do not understand a certain disease they shove you off rather than listen and try to learn. I went through many years of ER visits without help and felt like I was on display many times as they asked me to walk for them while I was so weak and trembling/major shakes. Especially when the docs just don't believe anything is wrong with you! They make you feel horrible and desperate because you KNOW there is something truly wrong with your body, and yet no way to prove it because they either don't know the right tests to run or won't do them, assuming you are just crazy. I am so sorry for your horrible day! Everything seems to hit at once and I know you are dealing with quite a bit right now. Keep fighting for what you deserve and for what is right, but don't run yourself down by overstressing yourself. Seek help from your metabolic doc. Maybe he can help.Darla: mommy toAsenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, chronic vomiting...Zipporrah (11 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach issues, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome...Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms)----- Original Message ----- To: "adult mito" <adultmito >; <mito >Sent: Sunday, October 03, 2004 6:32 PMSubject: VERY ANGRY/MUST VENT!!> Dear Roomies->> Say a prayer for me. EXTREMELY ANGRY.....>> I went to the emergency room in Tuscaloosa and the dr was first nice, > saying he knew nothing about mito. I tried to give him Dr. D's phone > number so they could talk...but he didn't take the number.>> Anyway I explained was in a crash, 151 over 65 was my blood pressure with > percocet.> The dr did a tiny check...and said he saw in my charts that i was given > morphine. Well then the dr said I see where morphine makes you well, so I > will get you a shot of it.>> After my shot there was no recognizable difference....Big whoop....I told > the nurse that I needed to have lactic acid/pyruvate and potassium levels > checked pewr protocol. The dr told me no.>> So I asked to see the administrator of the hospital.....i was given the rn > manager. I explained the situation about how the drs desperately need > these levels to see if they have any indicators during a crash.>> Then the dr came flying in.... What the heck is going on in here????? You > told me what acts like a duck, what sounds like a duck and what walks like > a duck is a duck and now you are telling me that's not the case. Now you > are saying they are trying to prove something??????Which is it.>> I came unglued, I had had it....>> Look it is important for Dr D and my other drs to see the tests to try and > slow the crashes down. etc.>> Then this dr said,>> "I do not think it is an emergency that we draw it this afternoon, when we > are busy.....You can have it drawn tomorrow.">> I said it won't do any good tomorrow...It has got to be done now." He > refused....He said you need a primary dr or follow up with a pulmonary dr > here. And they can draw your blood when they see you down the road.">>> I am FURIOUS! I will be going to the hospital administrator tomorrow > morning first thing. And I am sending a letter to the AMA as well as the > state medical board.>> I left the hospital at 5:15pm and the morphine is not helping at all. My > ribcage pain is back, lungs spasns, stinging my brain, right eye flareup, > massive tremors, and high blood pressure/now I have spots on my > legs-raised red bumps near my ankles on both legs.>> On my diagnosis line he wrote headache. What a crock of crap. (excuse the > language)>> ARGGGGGGG>> Ann>>>>>>>>>> Ann (mito), mom to (3 ys) - asthma, seizures, tremors, milk > intolerance, reflux, ptosis, *speech has improved greatly, suspected mito>>>>> ---------------------------------> Do you Yahoo!?> New and Improved Yahoo! Mail - 100MB free storage! Please contact mito-owner with any problems or questions. Ann (mito), mom to (3 ys) - asthma, seizures, tremors, milk intolerance, reflux, ptosis, *speech has improved greatly, suspected mito__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 I will be praying for you Ann. I have been there so many times in the past and couldn't get help either. I got to the point of not asking for help but rather just spending most of the time in bed or on the couch and waiting it out till I felt better. There were many times I didn't know if I would get better though. But it seems there is nothing that can convince some doctors of how badly we feel. Please keep me posted to how you are doing. Darla: mommy to Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube, hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting... Zipporrah (11 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach issues, disautonomy, hypo & hypertonicity, migraines, possible seizures, dumping syndrome, iron deficiency... Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), & Marquis (2) (some with Mito symptoms) VERY ANGRY/MUST VENT!! > > > > Dear Roomies- > > > > Say a prayer for me. EXTREMELY ANGRY..... > > > > I went to the emergency room in Tuscaloosa and the dr was first nice, > > saying he knew nothing about mito. I tried to give him Dr. D's phone > > number so they could talk...but he didn't take the number. > > > > Anyway I explained was in a crash, 151 over 65 was my blood pressure > > with > > percocet. > > The dr did a tiny check...and said he saw in my charts that i was given > > morphine. Well then the dr said I see where morphine makes you well, so > > I > > will get you a shot of it. > > > > After my shot there was no recognizable difference....Big whoop....I > > told > > the nurse that I needed to have lactic acid/pyruvate and potassium > > levels > > checked pewr protocol. The dr told me no. > > > > So I asked to see the administrator of the hospital.....i was given the > > rn > > manager. I explained the situation about how the drs desperately need > > these levels to see if they have any indicators during a crash. > > > > Then the dr came flying in.... What the heck is going on in here????? > > You > > told me what acts like a duck, what sounds like a duck and what walks > > like > > a duck is a duck and now you are telling me that's not the case. Now you > > are saying they are trying to prove something??????Which is it. > > > > I came unglued, I had had it.... > > > > Look it is important for Dr D and my other drs to see the tests to try > > and > > slow the crashes down. etc. > > > > Then this dr said, > > > > " I do not think it is an emergency that we draw it this afternoon, when > > we > > are busy.....You can have it drawn tomorrow. " > > > > I said it won't do any good tomorrow...It has got to be done now. " He > > refused....He said you need a primary dr or follow up with a pulmonary > > dr > > here. And they can draw your blood when they see you down the road. " > > > > > > I am FURIOUS! I will be going to the hospital administrator tomorrow > > morning first thing. And I am sending a letter to the AMA as well as the > > state medical board. > > > > I left the hospital at 5:15pm and the morphine is not helping at all. My > > ribcage pain is back, lungs spasns, stinging my brain, right eye > > flareup, > > massive tremors, and high blood pressure/now I have spots on my > > legs-raised red bumps near my ankles on both legs. > > > > On my diagnosis line he wrote headache. What a crock of crap. (excuse > > the > > language) > > > > ARGGGGGGG > > > > Ann > > > > > > > > > > > > > > > > > > > > Ann (mito), mom to (3 ys) - asthma, seizures, tremors, milk > > intolerance, reflux, ptosis, *speech has improved greatly, suspected > > mito > > > > > > > > > > --------------------------------- > > Do you Yahoo!? > > New and Improved Yahoo! Mail - 100MB free storage! > > > Please contact mito-owner with any problems or questions. > > > Quote Link to comment Share on other sites More sharing options...
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