mlynn's Status Updates

Hi . Your frustration is certainly understandable and I totally get why you hung up that phone. Part of me really wants to believe that the person on the other end of the phone wasn't actually speaking on what the doctors would have wanted (note that I don't say they were not speaking for the doctors, because as staff they were - too often doctors forget that the staff they hire represent them). I say this because it is ridiculous to think that a doctor shouldn't treat someone who was once someone else's patient. As an example I'll offer my wife, Kelly Mack. She had her original bilateral hip and knee replacements when she was 15 and 16 years old respectively. When she faced a desperate situation with an infection in one of the knee replacements it was over twenty years later - not only did she live in a different state, but the original surgeon had passed from this world. Your situation is really no different.

The medical community often says that not only are second opinions a thing, but often encouraged. The problem is that sometimes individual doctors don't quite adhere to this collegial concept. Plus, as your and Kelly's examples illustrate, time passes, circumstances change, but patients continue to need care.

All of this is a long-winded way of saying that you may have dodged a bullet in things not working with this particular office - this may not be the place you want to be treated. I don't know what the situation is with orthopedists in your area, but can you ask other locals for recommendations (orthopedists tend to be in much greater supply than rheumatologists). Did your doctor have any recommendations? Are there orthopedists they can actually contact on your behalf explaining that your previous surgeon has retired and it was done in a different state (doctors tend to listen more carefully to other doctors). I mention these ideas because the burden shouldn't only fall on you - sometimes doctors also have a responsibility to make sure their patients get the care they need. Don't hesitate to ask for help. That said, I hope all of this has been a little helpful. Best, Richard (Team Member)

, oh, goodness. I'm so sorry and no wonder you hung up the phone. I tend to be very polite, too, but sometimes (especially when it comes to medical or insurance stuff), my well of patience can run dry.

I have no helpful suggestions, but please know I am thinking of you and I hope you are able to find a solution that doesn't involve driving for hours!

Gentle Hugs, Erin, Team Member.

This really is a lot, . I'm so sorry you're in such a tight space. Healthcare should definitely feel easier and more compassionate, not like jumping through hoops. Have you tried reaching out to any bigger hospital systems or academic centers nearby? Sometimes they’re more open to seeing patients even if you didn’t have your original surgery with them. I hope you get the help you deserve soon! Keep us updated! -Latoya (Team Member)

and and Faust, I thank you all for your kindnesses and for listening. It's often what keeps me going when I hit a wall and want to cry.

While this shoulder provider issue swirled around my head, I learned that I need surgery on my right foot. RA really never quits with the surprises.

Over 14 surgeries and almost 20 years, I established a good relationship with my retired surgeon's patient coordinator. She remained on staff. Out of desperation, a Hail Mary pass if you will, I emailed her and asked if what I am hearing in my state is standard practice in the orthopedic world. Lisa said "absolutely not"! Lisa would like me and my shoulder to return to TCO but if the 8 hour trip is more than I can manage at the moment, she will speak to another surgeon there and provide a referral.

This particular orthopedic practice added rheumatologists and infusion centers to their staff in 2023. What I novel idea, says I, with a hint of sarcasm. Why don't more clinics in the US take into consideration the long term and unique needs of people with an autoimmune arthritis? If we could get care from the wide range of specialist care that we often need under one roof, it would be something to celebrate 😀

Hi . This is one of the biggest reasons Kelly is staying at the University she has gotten treatment for almost 20 years even though her rheumatologist just retired. Most of her specialists are there and it just makes it so much easier to coordinate care. Kelly wrote this article on choosing a doctor and noted "The best doctors have a combination of experience with RA, compassion for their patients, and ability to coordinate on related conditions. With RA resulting in various health complications, recognizing different problems and referring treatment is crucial for managing overall health:" https://rheumatoidarthritis.net/living/choosing-doctor-2. Best, Richard (Team Member)

, I am so glad you threw that Hail Mary pass and that it is offering you some better options (though, a long drive is still not ideal, I know). I know it's exhausting, but keep advocating for yourself and for the quality healthcare you deserve. You shouldn't have to work this hard for good care, but I am glad you don't give up!

You are in my thoughts as you face more surgeries.

Gentle Hugs, Erin, Team Member.

Thank you!