What Happened to Medicine?

Posted by frances007 @frances007, Feb 18, 2023

I am dismayed at the medical treatment, or lack thereof, that I have received to date. I sent an online message to my PCP a few weeks ago that I was feeling hopeless and depressed as a result of my illness and asked if he thought increasing my antidepressant would be of help. He did not respond. I have to see him next week and will ask what the purpose of the online message system is if a patient cannot get a response from their doctor.
I understand that my condition(s) are complicated, after all it has taken 3 years to finally get an appointment with a liver specialist, even though I had been told one would never see me. I apologize if I sound like I am whining, perhaps I am simply frustrated at just how difficult it is to receive the appropriate medical treatment these days. I try to remain positive, active, engaged in creative activities and things of that nature. I am not curled up in a ball in some kind of catatonic state. All I want is help from my medical team, and it has become such a struggle to get the treatment I think I need. Yes, I have a friend who is a doctor and who has been very helpful by telling me what tests my PCP needs to order, and when I ask him to order such tests he does. but really, how crazy is that? This forum and my disease have enabled me to become more empowered, however I had no idea that getting the right treatment, if any, would be such a struggle. I have good coping skills, but in all honesty there are days when I really do feel like curling up in a ball, but I don't because I am afraid I would remain in that state. So instead I take walks, work on my artwork, bake bread for my neighbors, care for my 84 year old friend etc. I am constantly on the move. Right now, I just want to step off and rest.
Also, the last time I saw my PCP he asked me if I wanted a new doctor. No doctor has ever asked this question of me. I am now planning to choose a new PCP after my upcoming appointment with a hepatologist. I am seeing my PCP this week so he can go over with me the information he received from the hematologist regarding my immunoglobulin disorder.
Interestingly enough, I met with a neurologist this week for the second time. I could not have asked for a nicer physician! Perhaps there are still medical providers out there who still care about and want to help their patients.

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Hello everyone.
I just got an email from NORD and today is National Rare Disease Day, and we are all supposed to wear stripes and look like zebras.

Having a rare disease can be frustrating to both the patient and the doctor. Instead of spending billions to send people to Mars, it would be so nice if they added some additional funding to research rare and also common diseases. Who knows, with all the money spent on space we might have had a cure by now for many of our ailments. Just a thought. I like space too, but I know I will never live long enough to go to Mars, or "space" for that matter. For now, I live in my art space.

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Just thought I would share where I hope Medicine is going sometime in the future, hopefully sooner than later...
https://youtu.be/_gCnZakbH8U

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@johnbishop

Just thought I would share where I hope Medicine is going sometime in the future, hopefully sooner than later...
https://youtu.be/_gCnZakbH8U

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This presentation is remarkable. One of my doctors told me a year ago that she wished doctors could go back to "slow medicine" but she does not see this happening any time soon. I am reminded of my recent appointment during which I said to my doctor, "I want to feel like I matter to you and to the organization you work for." Dead silence.

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Hi Frances,
If I may say I have never heard of an MD telling a patient that he does not want to see you again.
Let me put it this way; the most important thing a patient's job is find the right doctor. That is imperative.
I'll be 89 this month had a triple bypass 9 yrs ago large 7cm liver cancer removal 5yrs ago (5wks in hosp), had Hepatitis C for 20-30 years most undetected but got treated finally, etc.
But you should be aware that there is a zoo out there. MDs spent good money to pass board exams etc so you should not get discouraged when a guy (MD) refuse to see you : he does not want to tell you to find a specialist.
It is your job to get on the internet, list your symptoms, get initial diagnosis then look for MDs in your neighborhood and LOOK AT THEIR AREAS OF INTERESTS.
Do not be shy, that is a deadly sin : your own life is at stake. You MUST be computer savvy. You must. If that is too much, if you don't care about your own life who will?
7707857

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