How to Partner With Your Doctor for Better Care

Do you have a great relationship with your primary or speciality doctor? When I ask people I know this question, they often say no. If "no" is the answer then, maybe you don’t have the doctor that is best for your healthcare needs.

I know for me, it took many years to get the specialist that was best for me

The first specialist that I saw for my rare disorder, Alpha 1 Antitrypsin Deficiency, was good but we didn’t communicate well.

If we had a better relationship, I would have probably been put on oxygen from the beginning when I needed it. My doctor should have checked that from the beginning and not assumed that I was fine because he saw me sitting there quietly in his office. Little did he know that was more than ten minutes after the walk that I made to his office, which was very difficult for me-if they had checked my pulse ox, I'm sure it would have said I needed oxygen.

Instead, he saw me after I had rested from that walk so he had no clue what my oxygen level was. I think I only saw him one time after that because I finally got some medical assistance and had to switch doctors.

My new doctor was wonderful and his nurse was even better

He listened to me and I valued his opinion and he made me feel heard. He would listen to my concerns and had me do an overnight sleep study right away. The study showed that I did need oxygen overnight but for some reason, he never did a 6 minute walk test either. This test helps show pulmonary function.

Of course, at that time I didn't know I should have one either. I didn’t know that was how they test to see if you need oxygen during activity. Later, after I learned that and I asked for the test, he gave it to me--sure enough I needed oxygen with any activity. At least he had listened to me, though. Some doctors that I have seen over the years think they know everything and won’t listen to our needs. It’s like they are afraid to admit that you may be right and they could have possibly given you the wrong advice.

I loved that relationship that I had with that doctor and that nurse for many years, but I had to travel over an hour a way to get to that office. When I found out that they had a doctor that would come to my area once a month I decided to switch to that facility and a new doctor. I was sad to leave but glad to not have to do that drive anymore.

My new doctor was wonderful...in the beginning

He seemed to know enough about Alpha 1 and to listened to my needs. He did good for awhile--but then I got a lung infection that didn’t seem to go away. When I learned more about sputum cultures and that we should be doing them to figure out what was going on in my lungs, he seemed to not want to listen.

I had a talk with one of my nurses one day after being frustrated with him and she agreed that she didn’t think my doctor was addressing my needs either. She told me in confidence that a new doctor would be joining the office and he too would be coming to my area once a month. I decided to switch to the new doctor and am so glad that I did. That is the best decision that I have made.

He told me from the beginning that I probably knew more about my disease than he did after me dealing with it for so many years and being so involved with The Alpha 1 Foundation and COPD.net that between the both of us he was confident that we would make a great team in providing me with the best care for me.

What a great relief he has been in making this feel like a team effort

I feel like I am in good hands and that we can navigate my health journey together. He is always learning as much as he can about Alpha 1 and listens to me if I have any new findings to keep him informed about.

I have learned many things over these last almost 14 years on this Alpha 1 Health journey. One of them is that it's hard to find a doctor willing to partner with you. But, you have to be willing to advocate for yourself because our health is what helps keep us moving on this journey.

Do you have a good partner in your healthcare provider? Please share with us in the comments below.