A Living Donor- Lexi's Story

    If you were to talk to Alexis Law about her being a living donor, she would tell you that it is no big deal. Oh, don't get me wrong, she believes that organ donor programs like "The Gift of Life" are a very big deal, but the fact that she donated one of her kidneys while she was still using it, well, to her it seems like the most natural thing in the world to do. And that is one thing that makes Lexi Law a very special person. Many people (such as myself) have added to their driver's license their consent to donate their organs in the event of their death. A "living donor" is someone who donates a body part

while they are still alive.

   Here's how Lexi Law came to donate one of  her kidneys to a total stranger. Oh right, I haven't told you that part yet. When Lexi decided to donate a kidney, she knew absolutely nothing about the person who was going to receive it, except that person needed a kidney to stay alive, and well, that was enough for Lexi. Let's back up a bit. Originally Lexi was going to donate a kidney to her friend Leo, and they were tested to see if they were a compatible match. Compatibility is based on blood type. Unfortunately for Leo, they were not a match. At that point Leo and Lexi became a "team". Together they entered a nation-wide pool of other donor/recipients where compatible teams would be matched up, thus increasing everyone's chances of a successful transplant. Sadly, it was during this process that last April Leo passed away at the young age of 47. Diabetes and other health issues had taken their toll on Leo.

  I think for most people the story would have ended right there. Not for Lexi. During the whole process with Leo, Lexi formed a real bond with the organ donation people, a friendship that continues to this day. They called her after Leo's death and told her that she was under no obligation to stay in the program and that they would understand completely if she wanted to back out, but Lexi had other ideas. She had this plan of starting a "chain" as she calls, kind of an organ donation pay-it-forward chain, where she would donate one of her kidneys to someone who needed it, and someone associated with that recipient would donate on of theirs, and so on and so on. As Lexi put it, "I'm an organ donor as is, but I would rather have someone benefit while I was living than when I'm six feet under".

   Late last summer, Lexi received a call. Through Lankenau Hospital, a compatible recipient was found. A November transplant was scheduled, and Lexi's plan was about to be set in motion. "I gave my kidney to my recipient Bernice, (and) her brother gave to another person because they were not a match. He gave to another person and that person's recipients gave to another person. Talk about ripple effect! Lexi's recipient Bernice had juvenile diabetes from the age of 9, and in 2017 "everything just failed her and shut down", and she also went blind. Bernice is 55. Bernice is receiving treatments and doctors are holding out hope that one day she will regain her eyesight. The surgeries to Lexi and Bernice took place on November 11, 2018, Veteran's Day. Everything went well, and Lexi attributes that to her friend Lloyd Allen looking over her. Lloyd, a WWII vet and Downingtown resident had passed away the previous November.

  While in the hospital recovering, Lexi kept asking the nurses how her recipient was doing. One thing that you should know that when two parties enter into a donor/recipient agreement, both are guaranteed absolute privacy. Neither would ever know who the other one was or anything about them without both parties' consent. All Lexi was told was that "her husband said it was nice to hear her laugh again", and right there Lexi thought, "that's what it's all about!". Through intermediaries, Lexi and Bernice communicated, then one day Lexi actually got to meet Bernice and her mother Dolores. Thanks to a rare "gift of life", Bernice will have a chance at a normal life, no longer being tethered to a dialysis machine, and Dolores and other family members will have their Bernice. Like Lexi said, "that's what it's all about".

  If this story has touched you then I want to ask something of you. On Sunday April 14 I will be running in the 24th Annual Donor Dash in Philadelphia. Would you please consider making a donation directly to this worthy cause? The link to donate is here. Or, if you would like to join my team and come out with us on that Sunday, click on the same link. The team that I am on is Team Josh, and it has the distinction of being the longest running team (pun not intended) in the Donor Dash. Team Josh is named for my friend Leah Holland's son Josh, who as a child lost his life waiting for a heart. I run for Lea, Josh, Will, Lexi, Bernice, Dolores, ........

Will's Story

Yesterday I enjoyed a nice chat over coffee with my friend Will Lally at The Farmhouse Coffee. Honestly, it was almost a meet-up that couldn't have happened. Thanks to COPD, a chronic lung disease, last summer Will's lung capacity was down to just 12%. The doctors made it clear to Will. He needed a lung transplant or he was going to die. Will was only 52 at the time. What happened next? I'll let Will tell you.

  "Six months ago today I got a phone call at 1:15 am telling me that I need to come to Temple University Hospital as soon as possible. They told me that there was an organ donor that matched me and today was going to be my transplant day. Jane, Emalee and Justin were with me as we spent a few hours in a room getting prepped for surgery. Lots of blood work and meds, etc. We actually got to see the helicopter land that was carrying my new lungs. I spent the afternoon and evening in surgery receiving a double lung transplant. My life has changed since. I had end stage lung disease and was getting worse every day. I am doing very well now and am grateful every single day to my donor, my Hero!!! I now get to enjoy my life every day. Its a shame that I can't meet him or her to thank them for saving my life. I am hoping to be able to meet my donor's family someday and maybe even others that were saved that day by him or her. A huge thanks to Temple University Hospital and their amazing staff and Gift of Life Donor Program. I am hoping that my posts to FB and my soon becoming a volunteer ambassador for the Gift of Life will help get the word out about the importance of organ and tissue donation." 

In the sixth months since the transplant Will has spent four months in the hospital, including a month in a coma and a bout with pneumonia. It hasn't been easy, but Will feels "great" now. He knows that he has a new lease on life and he's not about to waste it. His COPD was likely a result of years spent as an auto mechanic, and a volunteer fire-fighter, and yes, cigarettes. He had his last smoke 3 years ago, and there's no way he ever will touch one again. He knows that if he were to do so then his new lungs would have been better off going to someone else. Instead, Will is dedicating his life to creating wider awareness of organ donation, including volunteering at the Donor Dash run in Philadelphia on April 14. When I run the 10K on that day, I will be running for Will, his donor, Lexi, Lea, Josh, etc. In addition to raising awareness for The Gift of Life program I have set up a fundraising page for the event with a goal of $1,000., and every penny of it goes directly to Gift of Life. The medications that a transplant recipient must take to stay alive can cost upwards of $350,000. a year or more. Please consider making a donation by clcking here.

One more thing that I'd like to leave you with. I, like many of us, have chosen to be an organ donor in the event of my death by selecting the box when I renewed my driver's licence. Make sure that your family members are aware of your wishes. In Pennsylvania, when I potential donor who intended to donate their organs has died, the family can override their wishes. Then someone else will be denied their chance to stay alive. I look forward to seeing Will many more times over the years, he's a good guy, and I am grateful that modern science and the Gift of Life people have allowed him to stick around with us, hopefully for many more years!

Why the Organ Donor Program Matters To Me (and should matter to YOU too!)

This is the first in a series of blogs that I will be writing telling you how my life has been touched by three friend's experiences with the organ donation program. After I posted on the Mr. Downingtown Facebook page that I was going to do this, others have come forward offering to tell their stories, and I hope to make that happen as well.

JOSH & LEA

My first Donor Dash 5K was 2 years ago, after I was incredibly moved by reading a story by my friend Lea, chronicling the tragic story of her son Josh, and her actions to do whatever she could to spare other parents from having to endure what she did. In this case I think it's best for the subject of this story to tell it herself, so with Lea's permission the following comes directly from the Team Josh Facebook page. 

Team Josh

April 4, 2016 · 

"Before 1999, I knew nothing about Organ Transplants or the need for Organ Donors. It wasn’t a part of MY life so I didn’t give it much thought. It seemed as though the only things I ever heard were negative, like celebrities seemingly buying their way to the top of a transplant list, or that doctors wouldn’t do what they could to save someone who was a designated organ donor, because they were waiting like vultures to harvest organs. (REALLY? Because the first thing they do in an emergency, is search a wallet for a license to see if someone is an organ donor? Uhhh, NO)

I was one of those people at the DMV, who, when asked if I wanted to be a donor, found it too easy to say NO. I even remember thinking that it wasn’t something that needed to be decided right at that moment, that “someone else” could figure out what to do if I died. Besides, who would want MY organs anyway? I was a heavy smoker at the time, and not the healthiest person in the world. Surely, they would be of no use to anyone anyhow.

Then, in 1999, the unthinkable happened. Josh started to have some issues that were getting progressively worse. He had congenital heart defects that had been well managed and until this point needed no medications and had no restrictions. I will never forget the moment when Dr H came from the cath lab to tell me “Joshua needs a heart transplant” I’m pretty certain that those words echoed loudly through the hallways for a good solid minute, because it sure felt that way. It was like getting punched HARD, directly in the face with a brick. MY SON needed a heart transplant TO LIVE. W.T.H?? Oh, and what was that you just said Dr H? He must now live here on the Cardiac Unit at CHOP until that happens? OK. We can do this. A month or 2 at best. After all, Josh was AB+ blood type – the universal recipient. This should happen pretty fast. On the surface, it seemed like it was going to be easy. We quickly found that there is sooo much more involved in finding the right match, but then who knew? Remember? It was never my problem, so I really didn’t need to know anything about it. UNTIL THAT MOMENT

Most of you know how this story ends. 91/2 months later, Josh’s heart stopped. He died waiting for that heart transplant. The day we left CHOP with all of his belongings, we counted. We counted the number of kids we met on this journey, and that number was staggering. 23 kids were on the heart transplant list during that time. We got to know them, their families & their stores. We became family – supporting each other in any way we could through the most difficult time of our lives. 23 kids, and we could only count FIVE that made it out alive with successful transplants. And that my friends, is the #uglytruth.

Our story is just a very tiny glimpse into the world of people out there waiting for a lifesaving transplant. This was ONE hospital, in ONE city, for 9 1/2 months, and only KIDS needing HEART transplants. So when you hear that one person dies every 18 hours waiting for a lifesaving transplant, and that statistic sounds too astronomical to believe, think again.

If you’re still on the fence about being an organ donor, or if you are as I was, and think that it’s “someone else’s” problem, please reconsider. When Josh died, Dr H approached me to ask if I would allow Josh to be a bone & tissue donor. In spite of all we’d been through, my first reaction was to say no. I was in a place of overwhelming pain, and thought “if you couldn’t give my son a heart, why the hell should I agree to allow him to be a DONOR?” I made the decision to allow for this through gritted teeth. I was beyond hurt and angry, but somehow knew that it was the right thing to do. It was one of the hardest decisions I’ve ever had to make, but one that I will NEVER regret. Because Josh was a donor, 2 people have the gift of sight, and over 100 people have benefited from bone grafts and treatments of other musculoskeletal issues. It’s such a wonderful thought knowing that there are 2 people out there, seeing the world through his eyes. <3

If our story touches even ONE person enough to want to make the decision to become a donor, then we’re doing our job.

#teamjosh #april #donatelifemmonth
Gift of Life Donor Program"

And THAT'S why organ donation matters to me.

Please consider sponsoring me in the 2019 Donor Dash! click here

Everything you never knew you needed to know about the "Search for the BLOB" bike ride.

from an original movie poster, the blob
is shown devouring the original
Downingtown Diner

How many of you have seen the movie "The Blob"? Not the gory 1988 re-make starring Kevin Dillon, but the 1958 original featuring a young Steve McQueen, aka a "real" movie star. While most of you are aware that the movie or at least a movie was filmed in Downingtown many years ago, but it has occurred to me during recent conversations that most people around town these days have never even seen "The Blob", or at least it's been a few years.  It was this revelation that drove me to think up some event that would showcase Downingtown's role in cinematic history. After all, why should Phoenixville get all of the glory?
"The Blob" trailer on youtube

  At first I had the idea of having a full scale bike race from The Colonial Theatre in Phoenixville down to The Downingtown Diner. For those of you familiar with the movie the bike race would be our explanation of how people were able to run out of a movie theater in Phoenixville in one scene, and run up to the Downingtown Diner (13 miles away) in the next. Upon further planning we (Downingtown Main Street Association and myself) decided that such an event would be too logistically difficult to produce at this time, and the idea was scrapped. However the idea of having an event that would combine biking and The Blob just wouldn't leave our heads. It's such a natural, don't you think?

The Downingtown Diner
 as it looked in 1958

The Downingtown Diner today.
All that remains of the original
diner is the basement.

  Eventually, the idea evolved into "Search for the Blob", a family-friendly bike ride through the streets and trails of Downingtown followed by breakfast at Victory Brewpub and a screening of "The Blob". Here are the top ten FAQ's that you might want to know about "Search for the BLOB" :

1) "When and where?"
Participants will meet at 8:00 a.m. on Saturday May 10 at the parking lot of Victory Brewpub, 420 Acorn Lane, Downingtown, PA.

2) "What happens next?"
Upon checking in, helmeted bike riders of all ages will set out on a 9.3 mile trek through the streets and trails of Downingtown. Though largely self guided, we will have course marshals stationed all along the way to keep riders on the right track. All cyclists will eventually be guided back to where they started at Victory. The 9.3 loop takes approx. one hour to complete. I did the entire course yesterday and I had forgotten how scenic certain parts of Downingtown can be, but you can't see these parts from a car.

3) "9.3 miles, that's a lot for us, do you have anything, well, shorter?"
No problem, since 5 miles of the course is on the Struble Trail, you can either shorten your ride up the Struble or you can by-pass it altogether, making your ride a little less than 4 miles. Participants even have the option of skipping the bike portion of the event altogether and go to Victory at 9:00 for food and entertainment.

4) "What's for breakfast?

I put that question to my friends at Victory and I was informed that the Victory Chefs will be preparing a simple breakfast buffet made with fresh ingredients. We will have scrambled eggs, hash browns, breakfast sausage, English muffins with butter & jelly, and fresh fruit (apples and bananas).

5) "After my ride, I'll be thirsty, is a Victory Beer included with my ticket?"
No, but you will be able to purchase your own if you wish.

6) "Do you have a map of the course?"

Yes.













7) "How much are tickets?"

$30. for adults, $15.  for kids 14 and under.

8) "Where can I get tickets?"

get tickets HERE

9) "What time is the movie?"

10:00 a.m. sharp. The movie will be over at about 11:45 and the event will be concluded

10) "Is this a benefit?"



These two need to wear their helmets!

The main goal of this event is to have fun, plain and simple. We want to do this by showcasing what a fantastic place Downingtown is to enjoy bicycling and the outdoors, and also by celebrating our role in a classic 1950's horror movie. There are expenses involved with this event, and once we have paid them, if there are any funds left over, Main Street will put that money towards our many improvement projects that we have going on in the borough, such as the lighting of the trees along Lancaster Ave. This having been said, we have kept the ticket prices as low as we possibly could.

  So hopefully you can join me and my friends from Main Street on Saturday May 10 for a morning of fun in Downingtown! People say there's never anything to do, well here's something to do!
RECAP:
 1) BUY TICKETS HERE
 2) Be at Victory's parking lot on May 10 at 8:00 with your ticket, helmet, bike, and your appetite.
If you have any further questions please e-mail me at prd1961@gmail.com

Thank-you!