Wednesday, January 30, 2019

Best and Worst Doctor Experiences

As anyone with chronic illness will tell you....not all doctors are created equal. Some are excellent, others are good, and of course there are a few that are just terrible. People also have mixed views on doctors as we are all looking for something different.

I have had both good and bad experiences with doctors. In fact, I have had more positive experiences than negative and I realize that is not usually the case.  This is partly due to the fact that I have had the same team of specialists for years (they are a really good fit for me so there really is no reason to change) and I only add new ones at the suggestion of my PCP (who helps me find the right one when needed).

Because I have had a lot of really good experiences with doctors it is hard to pick just one experience...

The BEST experience, or at least the one that comes to mind first (as it was relatively recent), was with two of my surgeons in Boston. I was scheduled to see both surgeons at different times on the same day. Both have worked together on my case for almost 10 years. This day they came in together and combined two appointments into one (unplanned). This was the first time in years we were able to sit down together to discuss everything as a group (they usually are not in the same place at the same time). 

Despite it being a frustrating day with a lot of tears, as we were trying to work through multiple problems (all compounding the situation), it was still a positive experience. They were so patient, so caring, and reminded me that they would not give up and that we would figure it out together. One of them even called my physical therapist and had a 20 minute conversation with him to make sure we all understood the situation and had a plan moving forward. It meant a lot that they took time out of their busy schedule to communicate with other members of my team. After all, that’s what makes this a “team.” They are truly special. I am lucky to have them. 

The WORST experience - I am very fortunate that I have not had many bad experiences with doctors. Typically the challenge is they just don’t know what to do with me given the complexity of my health. The worst experience was probably with a general surgeon that I was referred to for a consultation regarding having a port placed for IV fluids. She was unfamiliar with any of my conditions, I waited 2 hours in a room to be seen (she decided to see patients out of order and saw me last) and told me a port was a “stupid” idea. Instead of listening to why we felt this was the best option (my PCP and cardiologist agreed this was the best path moving forward, they are just not capable of placing a port themselves), she tried to convince me that it would be a huge mistake. When I presented literature supporting IV fluids for low blood volume and POTS she changed the subject. She told me to come back in two weeks and she would do research and talk to my cardiologist. Meanwhile she did zero research, never talked to my cardiologist, and wasted my time again. I was discouraged by the appointment but eventually I found the right physicians to help me and everyone on my team agrees that the port was one of the best (and most important) decisions we made. 

I am thankful that my positive experiences far outweigh the bad. That is not typically the case for people with chronic illness and I have my team to thank for that. 


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