Getting treatments can be difficult, especially when you have to travel miles and miles away for the treatment. It is even more difficult when your health condition makes commuting insufferable getting on a bus or train. Yvonne Fenster graces this episode with her experience as a flight passenger with Angel Flight East and how the organization helped her with her medical journey. She explains why she's still working with the organization since 2015. Yvonne urges everyone to try not to be afraid of flying. She also shares the established relationship with one of the pilots and how grateful she had been working with Angel Flight East. Head on to this episode and listen to how much Angel East values you with your medical journey.
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In this episode, we are both here with one of our passengers, Yvonne. I am so excited to have you on because I was checking that you have been flying with us since 2015, which feels like forever ago. If you can, can you tell our listeners a little bit about your medical journey and why you fly with the Angel Flight?
Thank you first of all for having me, ladies. I love you guys. In 2007, I was diagnosed with two rare conditions. One is called pudendal neuralgia. The pudendal nerve controls the whole area that you sit on. Sitting for long periods of time is very difficult for me. I then was diagnosed with what is called Complex Regional Pain syndrome. In that disease, they don't know what causes it. There's probably a variety of things, but your flight and fight part of your nervous system goes into overdrive. Whatever parts of your body are affected will swell. They become discolored. They're very painful. Your spinal cord loses the ability to stop pain signals from going to your brain. You are in constant pain. It never goes away, ever. It's finding treatments to control it.
It’s been a little bit of a long journey to get the diagnosis and get treatment. When I first started flying with you guys, it was in 2015. I came to Philadelphia to see a specialist, Dr. Ara Diaz, who specializes in Complex Regional Pain syndrome. I waited almost two years to see him because he was so hard to get in to see. He was at Drexel at the time. He wrote out a whole list of treatments we were going to do and try. He said to me, “You had a lot of other things wrong with you besides pudendal neuralgia and Complex Regional Pain syndrome.”
I then got caught with his move because he left Drexel and then went to Vincera Institute. He got there at Vincera in December and I officially started types of treatment with him that January. It took two years from the time I saw him to work through the whole treatment plan of what he wanted to try to figure out all the other things that were wrong with me. We did find some other surprises that no one else had. I had seen some top-notch specialists in pelvic issues all over the United States. They did a couple of things that weren't on their radar, but he figured them out. We then ended up with a treatment plan. A lot of it I still do to this day.
When we onboarded you, you signed up when Dominic was our flight coordinator. Every time you fly to Philadelphia, you and Dominic still meet up, which I love. It's amazing that you guys have kept the friendship despite him leaving us to go retire and hang out with his grandchildren. We miss him.
It's wonderful because I go over to his house, chat with his wife, and see the grandkids and his daughter. It's been wonderful. I know I've never met you in person. I don't think, Maddie. I don't fly into Bluebell because my brother moved to Westchester. Before, when I first started coming with my mom, we flew into Bluebell all the time, so we got to know everybody.
I know. I feel like I need to now block out my calendar the next time you fly in because it's been so long. I've been with Angel Flight since 2018. You're a name that's like a staple name within our four walls. I feel like I need to come down to Westchester one day and meet you in person because I feel like I do know you. We've been a part of this for so long with you.
You guys have been on this journey with me. I do occasionally fly into Bluebell. One of the pilots, who's flown me a couple of times, flies in and out of Blue Bell. I then Uber to Dominic's and go see Dominic.
I'm going to have to send him this episode. He's going to love it.
How did you get involved with Angel Flight, to begin with?
It must have been about 2014. My dad was still alive at the time. My mom was his primary caretaker. He had Parkinson's and was looking for help to come in to help her with him. One of our local agencies called Pace come in. I knew I was going to be coming to Philadelphia at some point and trying to find ways to travel other than by bus and train because I personally cannot drive that far because of my inability to sit and I have nerve damage to my legs. My right leg can't press a gas pedal that long. I asked the local organization, Pace. I'm like, “Do you know any organizations that fly that I might qualify for?” She recommended you guys, and that's when I reached out to you.
It was probably closer to 2014 that I reached out to you guys because there's the paperwork that has to be filled out by doctors and attorneys. The great thing about your organization is, unlike a lot of organizations, you guys don't have a lower limit of income that you have to have. It's not income-based. Most organizations are income-based. It was great because you guys are looking for people like me who need medical treatment all the time. I can afford to come a few times, but it adds up. I calculated one time how much you guys save me, and it's an incredible amount of money over the same years.
That's what we always say. I feel like a lot of people think we're income-based, but we always want to help people before they get to that point of maxing out their credit cards and everything. You're right, you could go a couple of times, but if you have to go every couple of weeks, it's going to add up pretty quickly. Probably quicker than a lot of people would imagine.
When you guys first started flying me when my treatments started with Dr. Ara Diaz was January 2016, I came every two weeks for two months. It was a once-a-month for a couple of months. I then did every two months almost up until COVID hit. I was coming every two months. Since COVID now, I've been able to cut my treatments back to every three months.
In the interim and all of my flights to Philly, I called Dominic and said, “I need to go to Cleveland Clinic. Would you guys also fly me to Cleveland Clinic because I needed to see a GI specialist there?” I also wanted to go to the functional medicine group there. You guys also fly me to Cleveland Clinic. That's been a little hit-and-miss how often I go, but it will be more regular because one of my specialists who was in Rochester, New York, moved to Cleveland Clinic. You guys will be flying me there at least every six months for me to go see her.
Since you've been flying with us since 2015, is there a favorite flight that you've taken or a favorite pilot you can give all the praise that you would like?
I will never pick a favorite pilot because I love them all. They're all delightful. Favorite flight, it's hard to say because I love to fly. I love all the different types of little planes I have flown in. What I would say is my favorite time of year to fly is the fall because the colors are changing. You fly low enough. It's not like being in commercial airplanes you can't see what's on the ground when you're flying at 35,000 feet and the clouds are in the way. You're flying at 6,000 to 8,000 feet and you can see everything. It's stunning to fly in the fall. I love to fly in the fall.
That’s my favorite too.
I absolutely will not pick a favorite pilot because I don't have one. My mom, because she can't fly with me any longer, she makes quilts for all the pilots for their planes.
They are so appreciative. Tom Mellet called us the one time after you gave it to him and he was in awe that you and your mom did that for him. They're beautiful too.
During COVID, you guys didn't fly passengers anyway for a while. I have a whole lot stocked up, but I tend to get the same pilots because they'll watch for me. You then get on the plane and go, “How's your kid? How are the grandkids? I know your daughter was getting married. How was the wedding?”
It's so great because I feel like every single episode is everybody talking about how the pilots are the biggest portion of your support group. No matter where you are or who you've flown with in the past, every single one of your pilots has been the biggest part of your journey.
They are. A couple of pilots that used to fly me quite often before COVID, I haven't seen them in a while. I asked Dominic about one of them, “Do you know what happened? I haven't heard anything about him.” He's like, “He fell off the radar after he had taken over the family business. He got too busy.” I'm like, “That's probably why I haven't seen him.”
That's awesome. What is your favorite part about working with Angel Flight?
You guys are very easy to work with. I try to make sure I give you enough heads up and notice and send it to the right email.
It was a hard transition. It was flight, missions, Maddie, and me. Whoever you send it to, somebody will get it.
You send it all at once.
It was sweet because I had called for a flight to Cleveland back in May and then ended up where my best friend drove me instead. David called because I called and canceled. He's like, “Are you okay? Is everything all right? Are you sick or something?” I'm like, “No. It's a change of plan.” That was very, very sweet of him to call, check-in, and make sure that I was okay and nothing major was wrong. It's really easy.
The pilots are good because I tell all the pilots, “I've gotten pretty good at reading the weather to know when I'm going to get canceled. I need enough time because I want to take the train. I don't want to have to take the bus. I hate the bus. Give me enough time so I can take the train and get a train ticket.” I have occasionally. I was at the airport one time and got the call from the pilot, “The weather in Syracuse, we can't see. We can't get in.” Those things happen occasionally.
If you didn't fly with Angel Flight, would you forego your treatment or would you do the train or a bus, however you had to get there?
I wouldn't forego my treatment because if it was not for my treatments, I wouldn't be able to walk. I would take the train. It's a lot easier to take the train to Cleveland because it's overnight direct from Syracuse to Cleveland and then a bright and early one from Cleveland back to Syracuse. I'm home at 11:30 in the morning when I take the train from Cleveland. Philly's a little bit harder because it's a longer trip. I have to go to New York City and change to Penn Station then go to Philly. I would take the train and I would plan far enough ahead so I wouldn't have to take the bus. My mom and I have taken the bus because the train was full.
Amtrak is so nice because I feel like you can go anywhere on it, and it's so easy now too.
It's easy. The nice thing is, because it's so hard for me to sit for really long periods of time, on Amtrak, I can get up. I can walk down to get something to drink a cup of coffee and go to the bathroom. I have a half a dozen times so I can get up. Usually, it's rarely that it is so full that I have to share a seat with someone. Occasionally it is, but that's pretty rare. Usually, I can sit by myself and put my feet up.
What is something that you would say to a healthcare provider that's thinking of referring a patient to Angel Flight?
As long as the patient doesn't have some type of limitation that they couldn't fly or, if they do have some type of limitation, as long as you guys know to try to meet it like mobility to get in and out of a plane. It's a little harder for you guys if you need to fly six-seaters for somebody to be able to get on the plane. That's easier than climbing up on a wing to get in. Probably the biggest thing for medical providers is if the patient is mobile enough to be able to get in and out of the plane. If not, what kind of plane would they need to be able to fly into to be able to? Especially people who are immunosuppressed and have a lot of concerns about taking public transportation. That's not my issue, but it certainly is for some people you fly.
We have some patients. It's so dangerous for them for being immunocompromised going in. It's super interesting. That's why I always like to hear from somebody who has to get the paperwork signed by their provider saying that it's safe for them and that it's the right option for them to have their own opinion on referring a patient to us. Thank you.
We have some people who will reach out to us. They're interested in a flight, but then they get a little nervous when they hear that we fly 4 to 6-seat airplanes. When you say small airplane, people think, “It's a commuter jet. I'll be fine.” What would you say to people who are nervous about flying in a small airplane?
I have a couple of girlfriends that were nervous to fly. I say to them, “First of all, the pilot is never going to put their life at risk.” They love life. They like life. They're not going to take a flight If there's any concern about the weather. They know what the capabilities of their planes are. They know what their capabilities are.
"The pilot will never put their life at risk. They love and like life. They will not take a flight if there are weather concerns."
It's no different than us knowing our cars, especially here in Syracuse in the winter. If you don't have four-wheel drive and you have a light car, you're a little more careful about what kind of weather you go out in. I said, “We know what our limitations are driving, so do the pilots know the limitations of their planes, what they can and can't fly, and what their experience is. I don't worry because I know a pilot's not going to put their own life at risk to fly me.” That has put a couple of my girlfriends at ease. They’re like “I can't believe you fly those little things.” I'm like, “It is so much better than commercial.”
We are so spoiled.
My mother, when she used to fly with me, when we would go to Virginia to visit family, she'd be like, “Do we have to fly commercial? I hate going through commercial. I hate getting patted down. I hate the terminal. Can't you get treatment in Virginia and Angel Flight fly you? I hate commercial flights.”
When we have to travel to go to conferences and stuff like that, I'm like, “Do you think somebody will take me?”
You do get spoiled getting picked up right where you need to be. Most pilots will have little snacks little water, but I'm always like, “If I drink anything, we'll be having to go down in Binghamton for me to have to use the bathroom. I'm not making it to Syracuse. No, thank you for anything to drink.”
"Unlike going through commercial planes, you get spoiled getting picked up right where you need to be."
The part that I'm getting the most spoiled on with flying with our pilots is TSA because I am getting a little too comfortable not showing up early to get through TSA and then not having that spare time to get to your gate and whatever. I feel like I need to bring myself back to earth on that one.
Most of the FBOs have nice treats, popcorn, and cookies. My husband always takes me to the Million Air here in Syracuse because he likes to stock up on all the treats they have there.
Their cookies are good. I don't blame them.
One last thing. I know a lot of people get nervous about turbulence. To me, it's a pothole in the sky. You hit a pothole with your car.
That's a great description.
It's a change in air pressure in the sky. It's a pothole. There's nothing to be afraid of.
That is true.
The pilots are fantastic about trying to get at an altitude that they'll have as minimal turbulence as possible. I've never gotten airsick, but I know some of the pilots have told me they've had passengers get sick if it's been a bumpy flight. They work very hard to try to get you a nice smooth layer. Air traffic control, if they know they're flying an Angels Flight East client, they are good about trying to get you direct as they can and make sure that you fly at a good altitude. Air traffic control is good to the pilot as long as they know they're flying a compassion flight.
It's awesome. Our pilots, for the readers, have a certain call sign. It's automatically assigned to them. It's called the COMPASSION call sign when they sign up with us. They have their own number, and that's how the air traffic control knows what's going on in our flights and how to give us priority.
Some of the more modern planes, because they have a built-in transponder, cannot fly under the compassion flight.
They have to spill the beans over the microphone.
I said, “Make sure you tell them you're a compassion flight,” and they do. I'm like, “I'm telling you they're going to change this route that they're giving us.” The only time we didn't get changed was the last flight I came down. We got re-routed really crazy. The pilot said, “I bet you, President Biden is in Delaware and that's why we're getting all re-routed.”
That’s usually how it goes. Yvonne, you're basically an expert pilot. You know everything about aviation than we do.
A pilot licensed by an association.
It's pretty bad. When we're coming into Allen, especially if a pilot hasn't flown, I'm like, “Once you go over the hills there in Wilkes-Barre and we get into Allentown space, they're going to drop you to 4,000 feet.” I've been flying for far too long to Philly.
I love it. What is one final thought that you want to leave our readers with?
I am so thankful for you guys. You've, not just as an organization, been wonderful. As people, you guys are wonderful. I feel very blessed to have you guys in my life and part of my team to help keep me walking and functional and to have a quality of life that I thought in 2007 wasn't even possible. I appreciate it very much.
We appreciate you. We are so proud to be a part of your journey too. Thank you so much for sharing your story and we always appreciate you.
I appreciate you. Have a wonderful rest of your day, guys.
You, too.
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