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RON COLE UPDATE AND PLAN
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I just wanted to let Brittany and my other friends know my thinking and how I intend to proceed with my PH.
My Dr. At UT Southwestern has been bothering me from the start. I do not want to appear too sensitive, but I wanted to write to let others know what we must do to be strong and proactive with this terrible disease.
Here we go. I live in Dallas, TX and my provider is nice although he never calls, I am a total bother if I want to talk to him, and his nurse always heads me off, and does not allow me to express myself at my 3-month visits. I feel left out and if I do call, which is rare they make me feel like I am a bother. I am uncomfortable with the treatment and visits. I made a firm decision to take control of my Health Care. I am hoping things go along as planned. I have used up most of my money, I live alone, 78 years old but highly mobile. I do have lots of trouble doing things, I just compensate. I called a senior living advocate in Pheonix, about 1000 miles from here, waiting for them to return my call. I want to give up my apartment and move into a senior living facility, Independent living studio in Pheonix. NEXT. I just made application to MAYO CLINIC ID PHEONIX they have one of the premier scientific and treatment facilities in the world for PH, and of course other issues I have. they have all the latest treatments for PH, including the possibility of opening up arteries for PH, etc. They take my insurance. I am going to ship my furniture, and drive alone, with a pressure of 83, with God as my Co-Pilot. Just sitting here alone, without care or friends because I got her from Hurricane Irma, is not an option for me. I just wanted to write this so that others that are stuck will know that courage and the will to get our just due is at our disposal if we really want it. I will keep everyone informed, wish me well. Ron -
4 Replies
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Thank you for sharing, Ron. It sounds like you are taking control of your life and making good decisions for your future. I imagine the community of a senior living facility would be nice for you, and you would hopefully have staff members to advocate for you. I am praying this works out for you and you get the attention you need. There’s nothing worse than feeling like your doctor won’t listen to you! Please do keep us updated. I’m feeling cautiously optimistic for your next chapter!
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Hi Ron,
Thank you for opening up to us here and for coming on the forums to share what you’re going through. You certainly aren’t alone in this fight even though I’m sure there are many days where it can feel like this. You should take pride in knowing that you are your own best advocate and it proves how much you value yourself and your health when you stand up for what’s right. I hope you are able to get into the facilities that you want. Continue to keep us updated and share your stories with us. It’s always good to hear from you. -
Ron,
I understand only too well how you feel. I am 72 years old. (Thank goodness I have a sister and husband as well as 2 friends who can offer me support.) I have pulmonary fibrosis and pulmonary hypertension…the dastardly duo. My cardiologist says my PH is a pulmonary problem. My Pulmonologist says it is a cardio problem and that, while I will die someday, it will not be because of my lungs!! He can say this even though my lung volume is only 48%, my oxygen diffusion is 37% and my aveoli are damaged (open lung biopsy). I have given up on the MDs (although I know I have to see at least a GP yearly). I am now focused on taking care of myself the best I can. I suspect that, when the MDs don’t know what they are doing, they blame the victim instead of simply stating that they do not know what to do.
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Mary,
I completely get what you are talking about. I would rather have doctors say they don’t know what else to do and admit that there isn’t much they have control over vs blaming the patient. That is never a good feeling when leaving an office visit. I hope that you are able to manage things okay and live the best life you can despite having such difficult diagnoses. We are always here for you!
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