Changing Physicians after being seen

I totally agree. I take my spouse to his physicians and he wants my input. My spouse has gotten alot of suggestions through the year's and he always wants the best that he can imagine. He always looks at me if the physician asks him a question which means "help I am not sure what is being said or why they want this test or medication". I am a firm believer that he deserves the best and if he needs my input I will ask a leading question. We have been told outrageous comments at times. We will if needed get a second opinion. Arrogance annoys us both.. We are not physicians , but we do our homework and continue with trying what works. We finally received a referral to movement disorder neurologist. I asked for several yrs. for this referral. I mean since 2018. I found out by researching that the YMCA could be a perfect fit for my spouse as he has Parkinsons and he flourished. I was upset that this was not suggested. The reason was given was that it was not needed. He can join a boxing group and that was it. It was right after his diagnosis. I continued off and on asked about the movement specialist to no avail. We met the neurologist that was replacing the Dr. we had gone to and it was one of the first things that was asked of us. Go figure.He was diagnosed in 2018. Almost seven years later we get a referral. It was ridiculous. He was able to workout with me and I helped keep on task. We saw other's who were dealing with the same thing at different stages. Imagine that. I could not wait to speak about it at his next appt. I cannot tell you that the Dr. was not qualified because he was. He just should stay informed and know what a patient can benefit from. I will be respectful...but don't just push pills and do a neuro check and that's it. I know my spouse better than anyone. He will get help when he needs it. By the way we are not seeing the specialist until June. He will get the best care as long as I am able. Thanks for your comments. Hugs from his wife.

Hi Sillyblone,
You are doing all the right things for your husband! The research, accompanying him to appointments and being involved. That's wonderful! You have the right attitude also. You want what's best for your husband which isn't always what the doctor recommends. That whole issue about trying to get him a specialist and not being able to and then finding out you could get the same result at the YMCA must have been very frustrating! I'm glad the YMCA worked for your husband! The doctor probably didn't suggest the YMCA because it wouldn't make the medical association any money. Unfortunately medicine has become consumed with making a profit. I saw that with my husband's cancer. When he refused to get anymore Keytruda infusions at $25,000 per infusion because he almost died from them, the cancer doctor became angry! After all, my husband's insurance had just approved 6 more months of Keytruda! Needless to say, we changed cancer doctors.
I hope the new specialist you are going to see works well for your husband. It's so good that you get involved with his care. I'm sure you will see that the new specialist does his best for your husband. I like to think that my involvement with my husband's care was part of the reason he lived 14 years with lung cancer. Prayer also helps. We all need God's help.
I'll say a prayer for the both of you.
PML

I will for you. We have been married so long. I can see the writing on the wall. But, I am not God. He decides those things. I am pretty certain my husband is going into Stage 5. good.I have lost alot of him in the last year. It feels like he is not doing as well as I had hoped for. But I will live each day as if it the first day we met in high school. I am not perfect and neither is he. We both say stupid things..I am sorry has to be said and my behavior needs to be the best that I can muster. Sometimes I cry into my pillow, shower or in the car. We have lost 4 people in the last 2 years. Love and being a good caregiver is my best defense. Hugs to you and your husband. I think you understand how I feel..coz you have been going through this illness with him. 🫂

I've found that advocating for yourself is not approved of in all medical communities, and it's often difficult to know there is a bias against it without becoming, if only for a short time, a member of those communities. The dangers that can come from not being able to change doctors are great, however. For example, in my own situation, I was assigned a PCP who, though nice, had no knowledge of heart problems. When I discovered this, I wanted to change to another PCP with a bit of knowledge that would allow him or her to work better with my cardiologist and was denied. The excuse given to me by the hospital was that there were no other PCPs accepting new patients. About a year later, the hospital adopted a new policy. Patients no longer would be allowed to make appointments directly with their specialists, even if they had relationships with them for years. Whenever a patient needed to see a doctor, he or she was required to see their PCPs first and let the PCP "refer" them to their specialists if the PCP thought it was necessary. Not long after that policy went into affect, I started having odd symptoms. One of those symptoms was very low diastolic blood pressure (as in the 30s). I also was having GI issues. My PCP focused solely on my GI issues and had liver tests run. When those came back negative, she shrugged and said there must not be anything wrong with me. I asked her about my low diastolic BP. She told me to call ER and ask them what to do about it. I knew ERs hate those kinds of calls but called anyway. The nurse who answered my call told me to drink more water. No one connected the dots and suspected that I had a heart problem. A couple of weeks later, my heart stopped for the first time. Luckily, I was in a hospital being held for observation with a nurse at my side when it happened. After tests, it was discovered that I had an abscess in my aorta. That abscess had been caused by infective bacteria. I had endocarditis and I was literally bleeding out internally. Had I been able to see my cardiologist, there's a strong chance that he would have at least suspected this when he learned of my low diastolic BP and instead of spending 6 weeks in a coma battling endocarditis and the accompanying conditions, then 5 more months in acute care skilled nursing, with most of that time on a ventilator, my cardiologist may have put me on antibiotics before my heart stopped. I likely would have had to spend several weeks in the hospital and most assuredly would have had to have open-heart surgery to repair the damage already done, but most likely, the recovery would not have been as grueling if I'd been able to see my cardiologist when I felt I needed to see him or had a PCP who was more knowledgeable about heart conditions. I believe that as patients we must advocate for ourselves.

I've found that advocating for yourself is not approved of in all medical communities, and it's often difficult to know there is a bias against it without becoming, if only for a short time, a member of those communities. The dangers that can come from not being able to change doctors are great, however. For example, in my own situation, I was assigned a PCP who, though nice, had no knowledge of heart problems. When I discovered this, I wanted to change to another PCP with a bit of knowledge that would allow him or her to work better with my cardiologist and was denied. The excuse given to me by the hospital was that there were no other PCPs accepting new patients. About a year later, the hospital adopted a new policy. Patients no longer would be allowed to make appointments directly with their specialists, even if they had relationships with them for years. Whenever a patient needed to see a doctor, he or she was required to see their PCPs first and let the PCP "refer" them to their specialists if the PCP thought it was necessary. Not long after that policy went into affect, I started having odd symptoms. One of those symptoms was very low diastolic blood pressure (as in the 30s). I also was having GI issues. My PCP focused solely on my GI issues and had liver tests run. When those came back negative, she shrugged and said there must not be anything wrong with me. I asked her about my low diastolic BP. She told me to call ER and ask them what to do about it. I knew ERs hate those kinds of calls but called anyway. The nurse who answered my call told me to drink more water. No one connected the dots and suspected that I had a heart problem. A couple of weeks later, my heart stopped for the first time. Luckily, I was in a hospital being held for observation with a nurse at my side when it happened. After tests, it was discovered that I had an abscess in my aorta. That abscess had been caused by infective bacteria. I had endocarditis and I was literally bleeding out internally. Had I been able to see my cardiologist, there's a strong chance that he would have at least suspected this when he learned of my low diastolic BP and instead of spending 6 weeks in a coma battling endocarditis and the accompanying conditions, then 5 more months in acute care skilled nursing, with most of that time on a ventilator, my cardiologist may have put me on antibiotics before my heart stopped. I likely would have had to spend several weeks in the hospital and most assuredly would have had to have open-heart surgery to repair the damage already done, but most likely, the recovery would not have been as grueling if I'd been able to see my cardiologist when I felt I needed to see him or had a PCP who was more knowledgeable about heart conditions. I believe that as patients we must advocate for ourselves.

I've found that advocating for yourself is not approved of in all medical communities, and it's often difficult to know there is a bias against it without becoming, if only for a short time, a member of those communities. The dangers that can come from not being able to change doctors are great, however. For example, in my own situation, I was assigned a PCP who, though nice, had no knowledge of heart problems. When I discovered this, I wanted to change to another PCP with a bit of knowledge that would allow him or her to work better with my cardiologist and was denied. The excuse given to me by the hospital was that there were no other PCPs accepting new patients. About a year later, the hospital adopted a new policy. Patients no longer would be allowed to make appointments directly with their specialists, even if they had relationships with them for years. Whenever a patient needed to see a doctor, he or she was required to see their PCPs first and let the PCP "refer" them to their specialists if the PCP thought it was necessary. Not long after that policy went into affect, I started having odd symptoms. One of those symptoms was very low diastolic blood pressure (as in the 30s). I also was having GI issues. My PCP focused solely on my GI issues and had liver tests run. When those came back negative, she shrugged and said there must not be anything wrong with me. I asked her about my low diastolic BP. She told me to call ER and ask them what to do about it. I knew ERs hate those kinds of calls but called anyway. The nurse who answered my call told me to drink more water. No one connected the dots and suspected that I had a heart problem. A couple of weeks later, my heart stopped for the first time. Luckily, I was in a hospital being held for observation with a nurse at my side when it happened. After tests, it was discovered that I had an abscess in my aorta. That abscess had been caused by infective bacteria. I had endocarditis and I was literally bleeding out internally. Had I been able to see my cardiologist, there's a strong chance that he would have at least suspected this when he learned of my low diastolic BP and instead of spending 6 weeks in a coma battling endocarditis and the accompanying conditions, then 5 more months in acute care skilled nursing, with most of that time on a ventilator, my cardiologist may have put me on antibiotics before my heart stopped. I likely would have had to spend several weeks in the hospital and most assuredly would have had to have open-heart surgery to repair the damage already done, but most likely, the recovery would not have been as grueling if I'd been able to see my cardiologist when I felt I needed to see him or had a PCP who was more knowledgeable about heart conditions. I believe that as patients we must advocate for ourselves.