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Revelation. Pulmonologist Wrong!
So my messed up Myasthenic eyes finally let me get notes read from recent Mayo trip. WOW! It is worse than I expected. My daughter has not wanted to go to Mayo and I said it will be different. But I thought I would see Dr Mark Wylam my original pulmo. So my daughter texted me and has talked to my neurologist locally to get help with treatment and she has ordered an EMG. Firstly I have no trust anymore putting myself in their hands. Secondly I fear the position this puts me in with my daughter. Going back to Mayo is not an option. I looked up the other docs in neurology they set me up with and it looks much better. This pulmonologist said he didn’t have recent tests since 2016. He should have. He barely talked to me as far as a real intake would expect. When I tried to bring up the chest pain and discomfort he swiftly shut me down and chalked it up to nerve pain issues which he blamed any of my pain on which is way off base. I think I have pleurisy. Maybe more. There is something new in my chest and I never got to discuss it. He was very dismissive and seemed to already have prejudged based the Unity medical doctor system back here. A person doesn’t drive all that way for that! Will do more on this later. Sculptor44
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Opps I miss spoke I think. I meant I have to go back to Mayo for treatment and a plan cause seriously back in Iowa the well is poisoned. On the whole Mayo Clinic hasn’t been a snap judgement place. Or do they overly rely on previous docs. I maybe can talk 30 to 45 min total in a day without damage. It is like fighting blindfolded when I can’t talk enough or do follow ups . And then my daughter. In her fear after the appointment she turned into a raging 5 year old the next morn even tho I tried begging for supportive words. My girls have been in denial for years. Seeing those X-rays with my lungs small and distorted was jarring for both of us. For the re ord I had a positive tension test in 2010 locally. It gets ignored. This new Mayo guy didn’t ask me much of anything but the question about my last Mayo pulmo summary. It was truly weird. And I ended up in excruciating pain in my lower legs that is not nerve pain as he suggested. Here’s a thought. Ask me about it!!! Sculptor44
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It is worse than I thought. My daughter is furious and is full of ultimatums. She wants to direct my medical totally. And she wants me out of my apartment and into a facility. Because of the horrible state of healthcare and Medicaid in Iowa my choices are extremely poor. She is not making sense she is terrified that I could stop breathing and or walking if I stay in my apartment. She chooses to believe the idiot at Mayo who after the scary X-rays showing one 12:months ago and one now. How it is degrading faster...... he mainly parroted what they have said back home. None of which was done off Mestinon. To be honest I do pray sometimes to be let go from my failing body. I am scared. Sculptor44
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:( It sounds an extremely difficult time for you. It's sad that you're so scared all the time.
It also sounds as if your daughter is very frightened as well and worried for you. That's maybe why she's acting out and angry with you so much. It could just be her own fear for your health and safety that making her act that way. Is there someone in your extended family or amongst your friends or associates who could perhaps act as a mediator between your daughter/s and yourself and your regular doctor so that the emotional aspect can be left out of such important life decisions? |
I just read an older post of yours from January where you wrote that you had lost Home Care and needed a Health Advocate.
I'm wondering if you were able to get Home Care back and if not why not? Maybe time to revisit the idea of having a Health Advocate as well. I am sure that where I live you would most certainly be eligible for home care, but we have a totally different system. I'm also wondering if you have difficulty reading the Text in the posts because of eyesight problems. I've put this one in larger txt just in case. |
On text size anything larger helps yes thank you. When I do bold that helps cause it is less blurry. Homecare is not good which increases strain on my daughter greatly. I have a new person who my daughter gives cash to case Amerigroup version of cost control is layers of delay. I called my State Omnbudsman last week and said to go after them. Expenses are off the charts right now and this is part. And it is just one very nice young lady who comes for 60 to 90m 3 times a week. I need more. I started barely to get a health advocate before I became sicker. Literally I didn’t even talk yesterday and my chest was worse today tho My oxygen has been down for 3 days. I lost my homecare agency which is common here for people who have more complex health. I actually have test results that show I improve with Solumedrol. It did not seem like Mayo doc saw that. He did list hypoxemia in notes but he didn’t give the opportunity to talk hardly at all. I am in a similar place I was in months before I went into hospital. But it hasn’t been months. I am becoming too compromised to eat and drink enough. I had a lovely fried chicken breast from store that sat in frig for 2 days cause getting at the meat was too much for my hands and arms. I called my neuro nurse today and left her a message about hitting 87% oxygen and just doing not well. My daughter had talked to the nurse a few days ago. They won’t move on helping me unless I pass an EMG. They don’t do good EMGs. Mayo is my best hope if that’s the necessity. It is difficult to not be scared right now. Today is unusually rough. I did get couple bites chicken. Sculptor44
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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
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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. |
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
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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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