Chat about Warriors for Tima non-profit group to raise awareness for organ donation
DATE: February 12, 2011
Ed: PAN Support Network Moderator
Karl: PAN Group Member
Tina: Representative of Warriors for Tim
Dr. Eric Hoy: Immunologist
In this special chat we are joined by Karl who is a member of the PAN Support Network (www.pansupportnetwork.org). In 2007 Karl was diagnosed with Polyarteritis Nodosa (PAN) after suffering serious symptoms while running in the New York City Marathon. He underwent a series of treatments for vasculitis. In 2011 Karl had progressed enough to runand completethe NYC marathon. He teamed up with the Vasculitis Foundation to use his participation to raise awareness of vasculitis. In March 2012, Karl will run in the NYC Half Marathon. This time he is joining forces with a special organization, Warriors for Tim, which promotes awareness and the need for organ donation. Tina Raymond lost her son due to complications from the H1N1 virus in 2010. Tim needed an organ donation and ultimately received one; however he didn’t make it through the surgery. Tina and John Raymond created a non-profit organization called, Warriors for Tim in honor of their son. The organization has raised over $100,000 for Children’s Hospital of Philiadelphia, and The Gift of Life House.
Karl knew the Raymond family and their struggle so he decided to make his run support their organization. You can make a donation and support tim by going to: http://www.crowdrise.com/WarriorsForTim
It’s important to remember that organ donation is a topic that also touches the vasculitis community. Often vasculitis patients need kidney or other organs transplanted due to the disease.
Other related links are - Gift of Life House
Children’s Hospital of Pittsburgh
Karl: I'm in PA, about 25 mile north of Philadelphia. Where are you located?
Ed Moderator: I'm in Pittsburgh . Hello, Tina!
Karl: Hello Tina
Ed Moderator: Tina, where are you from?
Tina: I am from Chalfont as well. PA that is.
Karl: We live in the same area
Ed Moderator: Hello Dr. Eric!
Dr. Eric: Hello, everyone!
Ed Moderator: Get ready to boo him...he's in TEXAS. Where it's warm..:-)
Tina: not at all fair! Lucky you!
Dr. Eric: Warm? It's only 40 here today... severe winter for us... Karl, it's nice to "meet" you. You have quite a story
Ed Moderator: quick intro here...Dr. Eric is an immunologist at University of Texas Southwestern Medical Center. Karl...I think we all know. Tina, please introduce yourself.
Tina: I am the co-founder of Warriors for Tim a nonprofit that promotes the importance of organ donor awareness. WFT was formed in memory of my 13 year old son Tim who needed a lung transplant
Ed Moderator: That is really commendable of you Tina...to keep his memory alive
Dr. Eric: Tina, we have a very active transplant program at UTSW...The lack of donors is the biggest problem we have
Tina: What I have learned is that transplants work and people need to understand the truth about becoming an organ donor. I understand that the waiting list keeps getting longer and there are less people available to donate
Karl: The web site is: Warriors For Tim ____ www.WarriorsForTim.org
Ed Moderator: Excellent, thanks. But before we get to the organization let's talk a bit about you and your connection to the PAN Network.# What happened in the New York Marathon of 2007? Tell us a bit..
Karl: When I was running in the 2007 NYC Marathon I had an AAA burst (Abdominal Aortic Aneurysm) and somehow I survived long enough to make it home and to HUP where I was diagnosed with PAN.
Ed Moderator: How long for the dx after this incident?
Karl: About 2 days
Ed Moderator: Two days. Dr. Eric, that sounds very unusual (and fortunate) from what we've heard. Often its weeks and months. Years
Dr. Eric: The unusual and fortunate thing is that Karl survived... ruptured AAA is usually fatal within minutes. If the pathologists had surgical material from the repair surgery, they could see the PAN in the "biopsy"... good pathologists to make the call, though!
Karl: I was diagnosed by a biopsy done on the removed artery during the initial surgery
Ed Moderator: So what course of treatment followed, Karl?
Karl: It was about a 7 hour surgery. The surgeon said if I was not in shape for the marathon that I would not have survived. Quite a long road to recovery from 2007 until 2011-12... Running saved my life because the aneurysm would have burst anyway
Ed Moderator: Tell us a bit about those intervening years. How did you deal with it? And to clarify---it was vasculitis that caused the aneurysm, right? That's what vasculitis does...weakens the artery, correct?
Karl: After being diagnosed I was on Prednisone and Imuran I also went through six months of Cytoxan Chemo. After the chemo I had a colon resection to remove the portion of colon damaged by the aneurysm. The resection leaked and I had to go on TPN (TPN = Total Parenteral Nutrition) for 5 months without eating or drinking to let it heal
Ed Moderator: Not sure what that means..
Tina: it means no food at all. Liquid nutrition
Karl: Basically enough nutrition to keep you alive
Dr. Eric: The patient receives all nutrients via infusion
Karl: A good way to lose weight
Dr. Eric: Karl, no it's a way to lose weight... not a GOOD way!
Tina: not the easiest though! you would never know it to look at you now Karl. You look like the picture of health
Dr. Eric: Karl, was there also mesenteric artery occlusion?
Karl: Also had a temporary drainage bag in my abdomen
Ed Moderator: So Karl you obviously fought back from that point to be able to run last year. How did you find the strength?
Karl: I needed to complete what I started and training actually helped keep my mind off things. I actually trained for the 2009 and 2010 marathons but was talked out of running by my Dr in 09 and was injured in 10
Ed Moderator: And you ran last year in the NYC Marathon and completed!!! Now, you're ready to tackle a half marathon.
Karl: I did the half in 2007 in under 2 hours
Ed Moderator: interesting because now I'll bet the timing isn't the goal...completion is the award, right? But of course timing is key too
Karl: I want to beat that this time. Need to beet 8:39 minute miles
Ed Moderator: Okay, amazing story, Karl. You're an inspiration to so many pan patients. So that was your story, Karl. And that brings you to preparing to run the half marathon in a few weeks.
Karl: The marathon that I completed in Nov was in 4 hours and 55 minutes. Next year I hope to beat 4 hours . I want to keep in shape and sponsoring a charity like Warriors for Tim keeps me motivated while helping a great cause
Tina: no one would ever know he had anything going on health wise. I see him twice a week and he never misses a beat
Ed Moderator: So let's shift the focus to Tina, now. And learn about your story. Then we'll bring the two together. Tina, tell us about you and your family. Tell us about Tim if you care to..
Tina: as I said earlier, Warriors for Tim was formed in memory of our 13 year old son Tim. He was a student, athlete and just a nice kid. He contracted H1N1 fall of 09
Ed Moderator: If I can hold you there for a moment... for those people who read the transcript. Tell us about H1N1. Many of us have heard of it...can you give some detail about it and Eric, you can join in too
Tina: A very nasty Flu that came out in the spring of 09. Most people just got sick but some younger people didn’t have the immunity that older people did. If you actually look up the statistics more young people died of H1N1 than older people. Not the way flu usually works
Ed Moderator: amazing. I didn't know that. How long was Tim sick, Tina?
Tina: also, according to the Doctors at CHOP the regular flu wasn't even around that year
Dr. Eric: It is similar to the virus that caused the world-wide outbreak in 1918 pandemic, which killed millions world-wide.
The outbreak in 2009 hit the very young and the very old more than the general population, because most of us had been exposed to similar viruses over the years. The reason the pandemic killed so many in 1918 was the other bacterial infections that patients got... just like what happened to Tim in 2009
Ed Moderator: CHOP? sorry, just need to define for readers. Thanks
Karl: Children’s Hospital Philadelphia
Tina: Tim was sick for 2 days before he went on life support due to double pneumonia. We didn't know it but he had an underlying MRSA infection which seemed to fuel the H1N1. He was playing football on Friday and on life support on Sunday. All of his major organs were affected as MRSA was blood born and carried the flu with it. He ended up on a machine called ECMO Basically a heart and lung bypass machine, used for temporary purposes mostly in with newborns. Everything recovered except his lungs. I think we are still in shock to some degree. His lungs never recovered so he was placed on the transplant list as he was able to communicate with us and every other organ was recovered
Ed Moderator: okay. so he was able to talk with you?
Tina: he couldn't talk but I learned to read lips and he could let us know what he was saying most of the time we waited just over 3 months for a transplant but with him being in the hospital with tubes going in him everywhere he caught a hospital infection. His donor came at a time that he was going to be dying within a matter of hours so he was very weak. As we were waiting for him to receive his donor we realized just how much of a long shot is would be for him to even receive a dono. my husband and I have always been donors we were just surprised to find out that so many people we afraid to become one
Ed Moderator: So he was on a national waiting list?
Tina: It is done regionally due to the viability of using the organs. We were with the Gift of Life. if an organ cannot be used regionally, then it is offered elsewhere.
Ed Moderator: must have been a horrible waiting time. My brother waited for a liver. I know that experience
Tina: Because of the severity of his case and his age he was high on the list but he had an unusual blood type B+. It was awful waiting, unlike anything else I have ever had to endure. In the end we were the lucky ones though as he received a donor. Eighteen people die each day without the gift of a donor So many people think that doctors will not save you or will harvest your organs while you are still alive. This perception is pushed by Hollywood.
Ed Moderator: that's one of the big misconceptions. Isn’t it? They read books like COMA that perpetuated that fear
Tina: for sure! I know very educated people who believe that nonsense. There are only a handful of situations that actually allow a person to be a donor anyway
Ed Moderator: So to your story, Tina...I'm sorry it didn't go well.
Tina: So the numbers are not in the recipients favor to begin with
Karl: I wonder if someone with PAN can be a donor?
Dr. Eric: Karl... yes with some restrictions# It depends on the severity of disease in the donor, and the organs that are affected. And that excludes their use, but liver, heart, corneas, and other tissues might be OK for donation
Tina: I just learned that in certain situations a person with cancer can donate. what is important is to get the word out to talk about it so that those questions can be answered. It really is best to be a donor and let the procurement team decide if they can use the organs
Ed Moderator: So Tina...in a way to cope with your grief you started this nonprofit called Warriors for Tim.
Tina: Yes but it was more than that. Tim has an older brother who was just 14 when all of this happened they traveled in the same circles and the teens just kind of started their own club. Tim's favorite color was orange and the kids all started wearing orange. it gave us the ear of a whole new generation. Before they knew to question being a donor. They all knew that Tim needed a donor.
Dr. Eric: I wondered where the name "Warriors" came from, but when I saw the pictures of the football team, I realized
Ed Moderator: I'll bet Tim was the kind of kid who would have started the same kind of movement if it had been one of his friends. he sounds like such a kid
Tina: He definitely was and the Warriors was double fold. He fought to be alive like a warrior and both his school and township teams were warriors. His doctors told me he shouldn't have made it 2 days. They are still in awe of his courage
Dr. Eric: Kids are a lot stronger than we give them credit... I've seen that many times
Ed Moderator: So it is accurate that you and your husband created this nonprofit officially. when did you create it?
Tina: We did and create it in Sept 2010
Karl: In less than 2 years Warriors For Tim has become very well known in our area and raised over $100,000
Tina: We are actually at about $160,000 now with funds for the Family House and Children's hospital
Ed Moderator: So Tina...where do these funds go?
Tina: The family House has received most of the funds as they just opened and we have a fitness center that we dedicated to Tim. It was not open when we needed it. We would have been thrilled to use it. We have also donated to a local family who just lost their 15 year old daughter suddenly
Ed Moderator: Now...how does Warriors for Tim also promote organ donation awareness?. are you connected to any other organ donation groups?
Tina: We have the opportunity to speak at local schools, ball fields etc. and we are connected to the Gift of Life and the Transplant team at CHOP
Ed Moderator: Tell us what you say to people. What is your message to them?
Tina: We volunteer to speak at their functions. When I speak to people I ask them to educate themselves and make an informed decision before they are faced with such a tragedy.
Ed Moderator: dispel the myths
Tina: The team that saves your life is a totally separate team from the ones who do the transplant. team isn't even called until you are clinically dead
Ed Moderator: question. How young can you be to be listed as a donor?
Tina: good question Ed, it can be put on your license
Ed Moderator: and how old can you be. Or is there age limit
Tina: and there is no age limit. parents make the decision for their children It is important to let your loved ones know what you wish
Ed Moderator: On this note....Dr. Eric......I would imagine that PAN and vasculitis patients are sometimes faced with this needing transplant
Dr. Eric: Yes, we have had several vasculitis patients who got kidney transplants
Tina: they will be making the choice.
Ed Moderator: I have to share this story that I heard from a rheumatologist two years ago. He knew of a patient whose kidneys stopped working - damaged. He needed a transplant. After a long, arduous time they finally got a donor. The transplant was done, but it only lasted a few weeks. Those kidneys also failed. It turned out the underlying cause was vasculitis and it wasn't diagnosed until the second failure. Those kind of stories are stunning to me.
Tina: that is really sad
Dr. Eric: yes, the vasculitis has to under control, or the new organ will fail... we've seen the same with Lupus patients... good diagnosis is vital
Ed Moderator: Is there a lesson in this somehow. If someone is having organ failure, is it more important to get a dx first.. maybe only with certain conditions
Tina: for sure. in some cases it is cut and dry in others not so much. Tim's was pretty clear what caused his lung failure
Ed Moderator: So, we're close to wrapping up. Let's connect the dots here..
Dr. Eric: Diagnosis is the most important aspect, but if you have to wait until it's too late for the patient, it's just an academic exercise... sometimes you do what's needed to save the patient, and treat the other diseases later
Ed Moderator: So now Karl...you are running and taking donations that will go to help Warriors
Karl: yes, the web site is www.crowdrise.com/WarriorsForTim
Ed Moderator: excellent, thanks. Surely your story will remind people about the need for organ donors Tina. And as we've said. Organ donation could be a necessity for patients with vasculitis
Tina: Thank you so much. I am hoping that when a donor is need for a PAN patient it is there for them
Dr. Eric: Is Warriors for Tim 501(c)?
Tina: Yes Dr. Eric we are a 501 c 3
Ed Moderator: Quick question dr. Eric....so if a pan patient wants to be a donor. Should he see his doctor?
Dr. Eric: Actually, the PAN pal should just agree to be a donor. The docs will sort it out at the time that the organs become available... Like Tina said, the transplant team isn't even called until after death has occurred. It will be determined at the time... as it is for all donors... the medical situation can change over time
Dr. Eric: That's great! I know a lot of donors need that for taxes
Karl: Dr Eric - I am privileged to be an inspiration to for PAN patients through running the marathons. The Raymond Family and Warriors For Tim is an inspiration to me. How can we get the word out about the www.crowdrise.com/ Warriors For Tim fundraiser ?
Ed Moderator: Tina, or Eric....so let's say you are a patient who is cleared to be a donor with some restrictions. how are those limitations communicated or recorded. I assume it goes in a database. Karl, I'm going to push it heavy through our PAN network. They are very generous
Tina: it is all assessed at time of clinical death each minute changes everything
Dr. Eric: Karl, I was thinking the same thing... how can we get coverage outside of the Philadelphia area?
Ed Moderator: Amazing things happen when these transcripts get circulated. They go viral and connect with people all over
Karl: I'm open to any ideas!
Dr. Eric: CHOP is near and dear to me... I have learned a lot of virology there many years ago
Ed Moderator: I will share the polished transcript with you Tina. You can post it on your site
Tina: thank you all so much. I always thought that Tim was going to change the world. Ed I will be happy to put it on our site
Ed Moderator: Well, Tina, I think we have something in common as you may know my mom died from PAN. The greatest irony is that what she needed then is what we have now.
Tina: I am so sorry about that Ed. Karl told me that. Medical science is funny
Ed Moderator: You got it Tina. The grief can be overwhelming. But as the saying goes. You either get busy dying or get busy living...better to channel into living
Tina: I prefer living. Much more happiness that way!
Ed Moderator: on that note. Thank you all and have e a great week.
Tina: Thank you!
Ed Moderator: Karl, Tina I’ll be in touch with transcript
Karl: Tina, thanks for sharing
Ed Moderator: take care, Eric. Are you off globetrotting?
Dr. Eric: You, too, Ed! And nice to chat with you, Karl and Tina. No, I'm home until March... then Sweden and England
Tina: Thank you Dr Eric
Karl: You to Dr Eric
Ed Moderator: Argghh. NO Bahamas> :-)) Take care - goodnight
Karl: Thanks Ed