In your diagnosis or treatment journey, how far do you have to go to see doctors and specialists you feel can help you? Have you ever moved to access better care?
I travel about 1200 miles (round trip) for my care. So far, I travel that distance about 4 times a year and incur trip, hotel, and food expenses. Had I stayed local, which would have been better for my wallet, I would have died in 2021 (if not sooner), as the local doctors just didn't understand my disease and its various nuances.
Gina Miller Moderator
Wow, what a great point! I also chose to travel to see experts I learned of. I became ill with MAC Lung Disease on The Big Island of Hawaii, and although I saw the top doc in pulmonary med through an HMO in Hawaii, 3 serious mistakes were made and I was scared off treatment by the fallout.
I moved to Vegas to get out of 'the hot spot' of the rainforest and found no experts there. I then planned to get myself to Denver to see the experts in NTM Lung Disease at National Jewish Health. They put me through 6 days of special testing, after which I was genetically tested and found to have Cystic Fibrosis. I am on a miracle med for it now and finally have hope to be able to clear the MAC bugs.
As with your case, my health would have continued downward... the time and money invested in getting and staying there for 10 days was well worth it (they required a commitment of that amount of time as the clinic days were over 2 weeks and they don't want patients flying in or out on those days). Also, I needed to wait to turn 65 to get onto Medicare with a Plan G supplement to be seen there without additional charges for the actual medical care, as my Nevada insurance would only cover 50%.
It's a sad reality that experts in rare diseases aren't found in all major cities. We are among the lucky who have been able to learn about where they are and were able to get ourselves in front of them. THANK YOU for your share. Great job taking care of yourself! I hope things continue to go well for you.