Revelation. Pulmonologist Wrong!

Sculptor44 · 06-02-2021, 07:17 AM

so my daughter blew up at me. It is safer to blow up at someone you love than say at work. Last time she had giant blow up at a nurse in January it actually resulted in the doctor signing me up for a special extra waiver. Now we just discovered this recently because no one ever told us and I am unclear that it does much but bend some rules so I could easier get into a skilled nursing facility. It sounds like she had some lesser blow up with my neuro nurse recently. What I am clear on is that I am not going to get support for treatment from The University Of Iowa Neurology. There is a neuro there named Buchanan who with no exam threw out the complete exam by a good resident in the span of 5 minutes and his recommendation I be admitted to ICU. He accused me of just seeking steroids and stormed out of ER room. I ended up in hospital because my Iowa City internist had sent me to that ER in a wheelchair directly from her appointment with me. My color was even bad that morning. I fully believe short of me being shot or diagnosed with cancer Iowa City will not help lift us from this place. My daughter and I are both drowning. I am gonna need to call and talk to the office social worker for my newer GP to hopefully square some misperceptions before my next appointment with GP Monday. Also establish key points. This social worker had chance to get a great overview on my health from my caseworker before she retired. Yet in last check in with my caseworker she said office social workers biggest question was why I won’t gleefully agree to CPAP. AAARRRRGGHH!! Sculptor44

Lara · 06-03-2021, 05:29 PM

I was thinking about your situation as you've posted here and I have to say that one of the most difficult things I've ever had to face in my life due to serious illness has been a certain loss of independence. Edited my post later to say... it's more about no longer being in control.

I don't know why exactly, but no one else seems to talk about it... not family, not doctors, not nurses.

Having been fiercely independent and strong all our lives and suddenly ending up so ill with other people telling us what to do and what not to do and never seeming to end up moving forward. It's a challenge indeed and it's very frustrating.

I don't have MG but I have something else but fortunately I am able to still do physical work. There have been times during the past couple of years that I could not, but I am so grateful that I can still tend my very large property and cook etc..

I worry that you're not eating properly and hope that someone can sort out easier meals for you to consume. They don't have to be large, but they need to be nutrient dense. Can you drink smoothies for example?

Anyway, just popped in to see how you were doing. I'm sorry it's so difficult for you.

Sculptor44 · 06-07-2021, 07:23 PM

Oh yes I keep thinking about autonomy. I had an extremely bad situation when I was released too soon from hospital and sent to nursing recover place. I became furious when my daughters went into conflict because staff was not being truthful. Me momma bear talked to my PT and I said you gotta get me walking so I can leave! I went into problem solving mode and pushed. I got direct with social worker and said NO MORE restrictions on fluids! When nurse found out she came in and wasn’t happy that’s when I discovered I was in under wrong diagnosis. This was after 2 weeks there. I was injured badly in there because of this misunderstanding of my body. It happened during a shower. There was a sunny court yard outside my window and tho my Vitamin D issue and finally appealing to doctor I never got out there. That was one of the worst . They said family could come and take me they were too busy. I miss work terribly. But mainly I just so want to hang out with my grandkids and talk and listen. Sculptor44

Sculptor44 · 07-25-2021, 02:26 PM

ok I have to admit what the Mayo Clinic pulmonologist said about my status with breathing based on an X-ray from this March and one from last March was REALLY important and saved me during recent meeting with the new nurse assigned to me. She said my lungs were normal based on last ER X-ray as if to say the problem is not like you say it is. I honestly get too much of that here locally. So I asked if she had seen Mayo report. It seemed she had not so I told her what that guy said. My lungs are shrinking and it is faster in past year. A 20% change. I need solumedrol again but the nurse doesn’t want me to go to ER for it. My local pulmo has said going to ER when I get worse is OK. Someone asked about my homecare status. We tried to talk to the nurse about help there but it was a total surprise when she didn’t understand how my homecare gets paid for. I have until September one lady who gives me. An hour 3x a week. I am supposed to have 3x a week 3 hours and a shower aid. In Iowa it just can’t happen now. Since United Health left the state it has massively changed. Sculptor 44

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