By Cheryl Lane
I am living north of Atlanta. It is 170 miles to my local HHT Treatment Center in Augusta, GA.
When I learned that I probably had HHT in the early 1990s, there was just one HHT Treatment Center – Yale University in New Haven, CT. At that point, I was living north of Boston. It was a 173 mile drive to New Haven.
Our wonderful HHT Foundation has accomplished so much in the last several decades. One of its many accomplishments is the establishment of numerous HHT centers throughout our country and around the world. This is great progress, but even today many people go many miles to get to their nearest center.
Unfortunately for me, the logistics of getting to a center remain a challenge. I know HHT is a progressive condition and will continue to define my aging process. Since my PAVMs have required much medical attention during the last five years, I have considered moving closer to an HHT center. This may not work out for me. Most of the centers are located in expensive metropolitan areas. I expect to move soon to a more reasonably priced area of the country.
There is an added inherent expense for transportation, meals and hotels going to the HHT Treatment Center. It requires at least one night stay in a hotel ahead of the procedure. And if I have to stay over longer, a second night. One time, when I needed to fix a couple of PAVMs, I had to schedule the procedure during the week of The Masters Golf Tournament. The hotels were charging around three times the normal room rate during that week. That was an expensive trip for my little HHT event.
When I need to go to an HHT Treatment Center, finding a friend who can go with me for a few days is as much a challenge as getting through the procedure. This puts another layer of stress on the event. I don’t want to share my most vulnerable times with just any volunteer.
Also, the outcome of the procedure is not be guaranteed. Three of the last four times having a PAVM embolization, I ended up in the ER or in the hospital with post-procedural complications. I hope if you have to travel many miles to a center and you have a built-in family member, driver, companion, or friend to accompany you on these reluctant journeys, that you are extremely grateful for them. They are like gold for me.
So, here I am in my seventh decade, with very little family or friend support, divorced and needing to move to my forever retirement place. Should a location closer to an HHT center be my priority? How does one plan for this serious medical condition with its unknown future?
How do I find A Center for my Universe?