Tim Barr had his first kidney transplant 23 years ago. The second transplant happened just recently. In this episode, Tim Barr shares his healthcare journey and the emotional rollercoaster he dealt with. Through the Navy Reserves connection Tim had, he was able to discover Angel Flight East. Overall, he had seven flights so far which gave him major convenience. Tim shares a piece of advice for passengers flying on a small airplane. Don’t miss this episode with Tim Barr today!
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You are here with me. I’m Maddy.
Also me, Jess.
Also, our biggest fan on Facebook, Tim Barr.
Thank you for shortening it. I like the fewer syllables.
Can you tell us a little bit about your journey with your healthcare condition in general?
It's been about 23 years. My newest kidney transplant was my second one. My first one started 23 years ago when I was the in Naval Reserves and training to be aircrew for the back of a DC-9. That meant transportation safety specialists or flight attendants for passengers or loadmasters and what have you, for making sure cargo was loaded properly as well.
To do that, you had to go down to Jacksonville and do the swim and fizz. That's a swim test, and they try to drown you in an airframe, and you have to get out three times once blindfolded and also ride the altitude chamber up to 25,000 feet and then take your mask off and try to do patty cake again. You miss when you are oxygen-deprived. During the swim test, I was kicked in the nose by a fellow squadron mate I was rushing towards the side to get out, and my nose was gushing.
I went over to medical, and I had a 210 over 150 blood pressure. They said I should be having a stroke, and I said, “Sorry, but I don't know any better.” I didn't have a stroke, fortunately, but that started the whole process of testing. They saw that I was already down to 30% capacity between both kidneys. That started a few years of trying to keep them going, and eventually, they were down to under 10%. That led to about six months on dialysis until my teacher's sister was able to get enough time off to donate. My first one was a living donor and very fortunate. This last kidney transplant where I needed it, I was down to 6% and very close to shutting down. Not to be overly dramatic, but that's how close I was.
It was even at a routine visit to my nephrologist who said, "You are going in today." Within a day or two, I had the permacath inserted in my chest, and goes up and over the neck, right down into the heart. From that, I started dialysis right away and then went to a DaVita Center where I was on dialysis for eight months.
Time was starting to run short only because if it didn't happen before the end of June, I was not going to recover in time to get my DOT physical to be able to drive the tour bus again. That meant I would have also lost my CDL license and would have had to start all over again. If it took a few years, the chances of my wanting to start all over again probably wouldn't have happened.
I was very fortunate to receive a kidney within eight months. I could tell you how that happened too unless that comes up as a question later. No, I can give it to you now because it is part of the story. I was told that since I didn't have a living donor lined up this time I would be waiting from 5 to 7 years. More than likely that meant I would never drive a tour bus again.
That hope of driving again is part of what kept me going over the past few years. On April 11th, I believe that was a Tuesday night, I picked up my wife at work. She is an usher at American Music Theater. We may have heard of them in Lancaster County, and we were at a restaurant up the street for a little late dinner.
That morning I received a call that I was one of two people being considered for a donated kidney that day. They called me that night at dinner and said, “Sorry, that one fell through, but we had two more,” and then those fell through. It was a couple of weeks, and I got the date wrong. That was probably about a month before that. On April 11th, a Tuesday night, I got the call again and they said, “We have two people on life support.” What it was, an accident or what have you, I don't know, but they were never coming back.
A few days went and I hadn't heard anything. A little bit of discouragement started setting in. It's like, “Here we go again up and down.” It is an emotional rollercoaster waiting for a kidney. You think you got one and then all of a sudden you don't. On Thursday night, April 13th, I got the call again, and this was, “Can you be here at 4:30 tomorrow morning?” That was about 11:15 at night. I said, “Yeah, we can.”
The miraculous thing is not only were we ready and packed to go, but my grandson came over and picked up our four-month-old Cockapoo puppies. If we had known it was going to happen this quickly, we wouldn't have done that. They were wonderful little puppies. Sometimes I say that. Sometimes I call them devil's daughters. They were that bad, but they are getting better.
My mother, who I won't say her age on air, does remarkably well for someone living at Willow Valley. That's about 15 to 16 miles away. I called her at about 11:30, and she was there by 12:20, packed and ready to go along with us. She was not going to miss out on being there for me. That was fantastic that she did that. Yet, I was still in good health. For me, it's a matter of having some control over the situation. I drove out to Pittsburgh, which is about four hours away.
It used to be that they did not encourage multiple listing sixteen years ago during my first one. Now, to make sure that everyone gets one sooner, most programs don't mind if you list on multiple transplant lists. I could have even joined the list in Philly at Penn Medicine or down in Delaware. Since my first one happened, it wasn't UPMC then, but it was Pinnacle Hospital Harrisburg. Now as UPMC, I figured, “Why not?” I go out and sign up at UPMC Montefiore in Pittsburgh.
As far as the regions they covered, that covered as far as potential donors. Unfortunately, accident victims covered the whole lower half of Pennsylvania. You had many highways, including the one you heard on the news, Route 81. Playing the numbers, not trying to be morbid. That helped the multiple listings plus the larger area. What happened, I don't know. I think it was an accident victim.
When you get your transplant packet, you get a card that you can send a thank you card to the family. It's up to them if they want to respond. They don't have to. We did send them a nice thank you, and it could have been anything. If it was mom and dad, well then there were kids left without parents. I don't know if it was a dad and a daughter or a child, or a mom and a child. You just don't know. There's a family that lost two people who were probably very important to everyone else in the family.
It took that whole week from Tuesday to Friday afternoon when the transplant happened. I would believe the hospital UPMC Montefiore contacted all the family members who may have wanted to say goodbye. At the same time, they were contacting other potential recipients. Since these two people weren't coming back, they had 4 kidneys, 2 livers, 2 pancreas, and maybe eyes to donate. Who knows? There are eight major organs they can transplant plus whatever else they can transplant. That transplant floor at Montefiore was very busy that week just for those 2 people, and I thank God for them. I was supposed to wait 5 to 7 years and I had it in 8 months. Two weeks ago, I had my first bus trip again. I'm driving again.
What tour bus do you drive?
I drive for Elite Coach. A base company. I do get down your way. I get to the Philly Airport. I go up to New York or Rhode Island.
We are going to have to get on one of your buses.
We are going to have to ask schedule.
I have fun. We are not supposed to talk to people a lot, especially when we get in heavy traffic or something because we are supposed to be paying attention, but I find a way to be safe and talk. Depending on the group you have, they are usually happy to be going where they are going. If it's a college sports team, they are a little more serious. If it's the Reading Buccaneers or a World Champion Drum and Bugle Corps, we have lots of fun with them. The stories about them practicing for 8 hours for a 17-minute show, I just don't understand.
How do you find Angel Flight East?
That has the Navy Reserves connection. We went to an air show. It was a joint airbase at Willow Grove, and Angel Flight had a table set up. My wife wanted one of the little hand-sized teddy bears that you had. It's in the garage somewhere. I have got to find that for her or buy another one at Wings N’ Wheels.
Now I have to detail that car to get it ready, wash it, wax it, and get all the bugs off, but we will be there. I went off on a tangent there. How did I find out about it? It was at the air show and saw the table. That's how I remembered it. For some reason, I thought that someone I knew from a church I was at years ago, Craig Groff, one of your pilots. He's good.
It was a Commander. It looked a little like Cirrus but it was called Commander, and a number of them are business owners. Even though it's still a great personal expense, it may be able to deduct some of the expenses. It doesn't matter how they own the airplane, most of them just love flying. One pilot even rented a plane to take us out.
"It doesn't matter how pilots own the airplane. Most of them just love flying."
That happens way more than people realize.
Do you have a favorite Angel Flight that you took or one that was super special to you?
They were all great in one way or another, but the last one of all the pilots who owned or operated Cirrus was the nicest. Whether or not he was a doctor or lawyer, I don't know. It even had carpeted floor mats with Cirrus on it. He had a bed dressed up. Justin, something from Hagerstown, Maryland.
We are going to have to call him.
I have to Google this one.
I don't have the last name from him, but I have my first name and my phone list. He dressed out nicely and it was only a few years old if that and nice. He even had the smoothest ride. Depending on how the airport brought us in, we had a nice steep bank turn approach, and that was fun too. You are looking out the window and the one wing is up there.
You have some nice views flying into an area.
I could probably send you one where we had a rainbow that was following along just ahead of us. A big arched rainbow and that was nice. It's been good.
I have a side question. Since you are from Lancaster and you know how much I love Lancaster since I went to school there, have you ever eaten at Shady Maple?
Yes, I have.
It's the best, isn't it?
Yeah. I'm not supposed to anymore but I do anyway.
Any of us are not supposed to.
It's very good. It's worth the trip. Especially if it's your birthday, it's either free or half off. You just go with a plan. Eat what you want. You don't have to have plates that the food is about to fall off.
That's why it's worth going there.
It's worth it. Since there's no Joe's Crab Shack nearby anymore. That's my other favorite place to go, the Shady Maple.
If Jess could live in Lancaster, she would.
I would. I love Lancaster. It's such a cute little town. There's so much going on.
Even my hometown here, you'd probably like that a lot too. It's changing and growing with the times.
I love Lititz too.
Lititz is good. Although at Berks County, you don't want to say that too much.
I don't want to upset anybody.
It's not a rivalry but they do have a tax base about five times bigger than ours.
How many flights have you taken now with Angel Flight?
We counted that up after I reread the questions, and that's seven flights. Our first one was in May, and we have driven a few times, depending on the weather, or if the pilots didn't feel secure about that. Although John, his name is north of Pittsburgh.
We love John Greco.
He was a very good pilot. He had a heavier plane than most. His was all aluminum and a little bit bigger for a single, but also heavier and rode the turbulence nicely. We had a good ride with him. It was seven flights and now gradually it's going to be less since my next trip out to Pittsburgh is in November through the last round of testing and the biopsy. They are pretty certain I'm going to keep this kidney for quite a while. They are now starting to space out visits. My next one is in November. In January will be my first video visit. I won't say that November will be my last Angel Flight. They will be further apart, maybe even down to once a year. Probably every six months, but I won't know that until they tell me.
We are going to be here for those flights no matter if it's 6 months, 6 weeks, or 6 days.
I'm hoping somebody wins the Mega Millions and buys you a Cirrus Vision jet or something.
You said you were going to win, and buy us two Vision jets so we could fly like Kim Kardashian.
She has a Gulf Stream.
We would take one of those too. We don't discriminate.
One Vision and one TBM or a high turbine, high-performance single. They are a little more economical.
How would you say Angel Flight has affected your life?
It's a major convenience. Over the past years since I hadn't been working, we were getting a very lean budget. I had a small partial retirement from twenty years at PennDOT. Over the past year, when the DOT or FMCSA, the Federal Motor Carrier Safety Administration says, “You are on dialysis. You can't drive.” That's mostly what I was doing now since retiring from PennDOT, and now all of a sudden, I couldn't do it.
In the past years, I got very lean. Once the transplant happened, Angel Flight certainly saved us a lot of money. The turnpike is about $30 one way. Gas was another $35 or $40 one way. Fortunately, we found a very nice organization called Family House. Even if it's their regular rate at around $89 a night, that's much more reasonable than $120 or $130 across the street. We also found some supplemental grants from the hospital that brought that down to $40. We have been fortunate to find stuff like that to help out. It helped in all the traveling back and forth would have been normally expensive but now it's not so bad.
Without Angel Flight, would you still be doing that long Turnpike?
I would have to because having driven a tour bus for ten years, a long trip like that doesn't bother me. I enjoy driving and it's not a problem. Especially in something that big. It's like floating on an 8-wheeled airplane. I enjoyed driving those big things. I'd get out there somehow. They were nice enough to arrange the kidney for me and they are happy with the way I'm taking care of it, and they like seeing the shirts too. The staff at Seven West, which is the Starzl Transplant Clinic, they love them. I figured, “I may as well keep it going.” It beats buying flowers anyway since these won't die on them.
It's very tropical. It makes me feel like I'm in Miami or something.
That's why I have the flamingos.
What would you say to our audience about flying in a small airplane?
You have to do a little bit of planning ahead. Don't drink too much. There is no restroom that you can get up and walk back to. You are stuck in your seat. That's the only downside. Why did I never get involved in flying? I don't know. I thought they wouldn't take me because of my eyes. I don't know, but that was just the Air Force. It’s like skiing. There's that big investment. I never got into it. That's not even scary. It depends on how the pilot takes off. You have a nice steep climb and that's fun. I like that part. Especially cruising down the runway accelerating. That's always been fun. It will be fun. It will be a different experience. Don't expect the drink cart to come down the aisle.
What is one final thought that you want to leave our audience with?
I have too many people to thank because once this second transplant journey started, there were three different church congregations that were praying for me. Upwards of 1,000 to 3,000 people were praying. Maybe that's why it happened so quickly, I don't know. I also like to give back. When you are blessed with so much like this, I'm still in contact with the Gift of Life, and eventually, I might start public speaking for them, but you have to go through the application process first.
If you haven't been a person who has thought about giving back, this is one way to remind you that there's a lot out there and a lot of people who may need your help one way or another, whether it's through a living donation. Everyone can give a kidney if they meet all the criteria, but what a lot of people don't know is you can give half a liver away, and it will grow back. People don't know that, but it will grow back.
"Everyone can give a kidney if they meet all the criteria, but most people don't know that you can give half a liver away and it'll grow back."
Your donated part grows and attaches to theirs and starts working. It's amazing that they can do that thing, and anyone who is involved in social media doesn’t have to need a transplant or use Angel Flights services. I'm not trying to brag, but one thing that I did is if you are on Facebook, they will remind you when it's your birthday, whether you want to know that or not.
What they will do is they will suggest a fundraiser, and I forget what I did last year. This year, I decided to do it for Angel Flight. It pretty much went three times what that one went. As long as I add my little $35, that will make that one. That one will be $300-plus. My wife is part of a local service organization and they are going to give me another check for $100. Anyone who even looks up Angel Flight, if they want to donate, they certainly can. There are many organizations that need donations, but Angel Flights does so much for other people that the donations will not go to waste. It's a good thing.
Thank you so much, Tim.
You are welcome. Thank you.
Did you want to say something?
I'm glad we got this thing to work.
Technology never works in our favor when we need it to.
That and the paperless society never happened either. We always pack things up with a printed copy.
We appreciate you sharing your story with us and our audience and the impact our volunteer pilots have had on your journey to your kidney transplant.
They are great and I have enjoyed it. I'm glad you are there. I hope more people find out about you.
I will see you in October because I will be in Lancaster for my ten-year college reunion.
Which college is that?
I drive a lot for them. I once drove there. It was a few years ago. I drove their cross-country team out to Pittsburgh near Shadyside. Unfortunately, we had to go right past the Tree of Life synagogue. The one where the mass shooting happened. It's interesting. That's one of the best parts about driving tour buses, all the places I get to go, and sometimes you see some very historical places. Sometimes they are fun and sometimes they were very serious. That's interesting. That’s what kept me going over the past years the possibility of driving again. Your reunion is when?
"One of the best parts about driving tour buses is the places you can go."
October at the college bar. It's going to be weird.
I will see you before then if you are at Wings N’ Wheels.
She's ditching me. It's me and you at Wings N’ Wheels, Tim.
I know. My brother decided to get married that day. Unfortunately, I'm on wedding duty. He's rude.
I'm trying to think of how he can see the car again. We will make sure you get a picture of Maddy standing with the little convertible.
I will look forward to it.
I will wait.
Thank you so much, Tim. We appreciate you.
I learned something new about this new computer here. It's a few years old, but we call it new because we are still learning how to do stuff on it.
We are the worst Millennials ever.
I'm that old. I remember the black and white TV, and I was the remote. Thank you. I don't know how we sign off here.
Wherever you see the little red button that says end. That's where you are going to click. Would you give me a kidney?
I think you have two, so you can always give a kidney away, can't you?
I'm saying like in case of emergency.
I would trade you my kidney for half of your liver.
If we ask somebody to swap our kidneys. It's like one Maddy kidney, one Jess kidney, and both livers.
I'm trying to think of the doctor to whom we can genuinely ask that question. Dr. Beck, she's going to think we have lost it officially.
Dr. Beck is my sister, and I think that she thinks that we lost it a long time ago. To make it all make sense for you out there, Hannah is a psychiatrist.
She analyzes us. I can tell. When I walked into her house, I was like, “Hannah, what are you thinking? Can you tell me?”
I don't want to drink near you. I get nervous.
I don't know what I will say. She told me that she is a nice sister and she doesn't know why everybody is so scared of her.
It’s because they have met her.
When I talk to her, she is a nice sister. You on the other hand.
Are charming, lovely, and wonderful.
They say the saying, “Diamond in the rough.”
Only the people who don't know or only the people who know. If you don't know me, I'm great. If you are my friend, you know the truth.
Remember, some people have taken years to talk to you. It's because of your aura.
I have a nice aura. I think that the color that I emanate is blue. I give a blue vibe.
That's not happy.
Like a light blue, not a dark blue. You are like a yellow.
I was thinking of pink sparkles and rainbows and unicorns emanating from me. Is that the right word? Emanating?
Good. I didn't have to look it up for once.
I'm sticking to yellow. David would be green.
He gives me more maybe like a lime green.
I could see that, but either way, let us know what color you think our personalities are because obviously, we don't agree, and we'd like to hear a third party's view. We will talk to you soon, and we will see you for another episode.