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Thread: Cleveland Clinic frusteration

  1. #21
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    You may want to contact her office about labs. As I recall, I had the c-ANCA, p-ANCA, and PR-3 there. I may also have had a CBC, CMP, and urinalysis.

    There is an Intercontinental Hotel on the Clinic Campus just across the courtyard from her office. I have no experience with the hotels or restaurants there as I can drive the round trip easily within the day.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  2. #22
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    I always stay at the comfort Inn up there. It is not far from the hosp and they have a shuttle service that will take you and pick you up...you avoid paying the parking toll. Also if you tell them you are going to the CC they will give you a discount. Best to make resv. first. Good luck up there. And like Pete said any med. records you can take up the better.
    Life isn't about how you survive the storm, but how to dance in the rain !

  3. #23
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    Now to my recent experience that only has me fuming but again worried. I went to CC last Wed. and my dr ( dr Langford) said I looked the worst she ever saw me. I barely made it walking to her office without just passing out. I was clinching to Jacks arm so I wouldn't fall. ( no wheelchairs) Anyway she wanted to direct admit me but since it was my mothers 90th birthday on Fri. I wanted to be home. Also the hosp I go to here provides me with financial asst. where up there I would be out thousands. So after a half hour of her trying to convince me to stay I promised I would go to the hosp here. BIG MISTAKE !!!! I went to the er ( since they won't direct admit me like up there ) after being in the er half the night I was put in a room with a lady who sounded like she had pneumonia. She said she was in last week and was coughing until after she was released. Anyway Thurs. I just laid in bed and never saw a dr. Fri they finally ordered a ct scan of my chest and brain and later an mri of my brain. The student for the neurologist said he thinks it is my wg UNTIL my pcp ordered a urine test to check for drugs. He came in my room and said how long have you been smoking pot. I told him about the cbd and that's all it took. They were both convinced I was a pot head and that was it. When the neurologist came in with his group of 5 students , he was being a smart ass ( sorry Andrew ) but I asked him about my stabbing headaches and dizziness. He said my sodium was low and I needed to eat a bag of potato chips and that my bp was low.And he said med. pot is nothing but a big hype and it has not been proven good for anything. Needless to say we had words. I had the nurse show me my labs and my sodium was 146,on the high side but in range and she took my bp and it was a little high cuz I was REALLY pissed. So the sob sat there and lied to me because I showed pos for thc. Last night I was on my chart from the hosp and my mri showed I had changes in the small blood vessels in my head probably due to wg. I am looking today for a new pcp and then I am going to call the other drs. office and tell him I didn't appreciate him sitting there lying to me when this disease could be fatal. I also him going to call the medical board and report him. Another person who hasn't seen the wrath of a woman on pred ! Sorry for the long vent but just other prove you MUST be your own health expert.
    Life isn't about how you survive the storm, but how to dance in the rain !

  4. #24
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    It is bad enough being sick but to then get jerked around by a doctor is just terrible. I'm sorry you have been put through this.

  5. #25
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    Deb, This was at your local hospital, where this happened? I really hope you get to the bottom of why you were treated so badly. Please try to get yourself taken care of as far as your health goes. You do know that CC has a financial program to help pay for your care also. Let us know how things are going with you.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  6. #26
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    Im so blessed, I just realized that you started this thread and I kinda hijacked it....sorry. It just seems like something I would start a thread with. Although I love my CC doc, its all the other idiots I have where I live. I will put things on my thread and again good luck up there.
    Life isn't about how you survive the storm, but how to dance in the rain !

  7. #27
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    Its just fine! I hope you are feeling better real soon! I'm still so excited about my appointment friday. I will be checking in afterwards.

  8. #28
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    I am wishing you all the best at CC. She is a very good doc and will treat you well.She is very fast,but just reask her if she goes to fast and she will slow it down.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


  9. #29
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    I had a wonderful 2.5 hour visit with Dr. Villa Forte. She was very aggressive in my treatment and going forward plan. Which i am very greatful for, as i have been missing this the last several years. She was also gracious, in that she understands my situation with cost, and is willing to help keep that down however she can,albeit working thru local rheumys or dealing thru phone calls and email. She is VERY convinced and set on it that i HAVE to come back to CC to see ENT. A dr Robert Lorenz. As she feels sure my current treatment for my stenosis is not the right treatment. She also pointed me to a rheumatologist at West Penn..a Dr Michael Lucke. He did 3 years of residency at CC with her and she feels sure he would work with her. So i have to decide what to do. Go to him, and let him ask her for help if he needs it. Even tho he is still a 3 hr drive. Or ask my current Rheumy to work with her. Or see Dr Villa Forte once a year and not have another Rheumy, but do phone calls in between appointments. And i have to decide about going to see the ENT at CC. Anyone have any thoughts? Its so much to think about! Im so glad i have you guys! I wouldnt have ever found her without you all

  10. #30
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    These are my thoughts: Generally most people go to where ever they can get the best care for their Wegs or GPA. Many times this involves flying some where or driving for hours to get care from some you can trust and like. Often the financial cost is high but without adequate care the costs or consequences are generally much higher. My trips to Mayo take me three days and six hours of driving each way but feel the costs are well worth it to know I am being seen by one the world's best GPA experts and getting the right care. Poor care is very expensive and can also be fatal or very injurious to your health and many doctors are not competent to manage GPA correctly.
    Knowledge is power! Wisdom is using it to make good decisions!

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