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In October 2007, Edbassmaster, one of the comedy personalities of YouTube, donated a kidney to his sister. Many of his fans sent messages of support for him and his sister. On this program we meet with Ed and Maureen to talk about their experience.
In December 2007 there are 98,061 people on the transplant waiting list. In 2007, 10,847 living or deceased organ donors have given one or more organs to save the life of another person, or significantly improve their quality of life. 21,401 transplants have been performed.
In this program you will hear one person’s story of losing the last of her own kidney power following a series of surgeries to prevent kidney cancer from metastasizing. The eighth operation left her with no more functioning kidney. It cured her kidney cancer, but put her on dialysis.
The kidney is a pretty amazing organ. People with only 25% of one kidney can do well, and not even have to change their diet. So a person with two healthy kidneys has much more than necessary for good health – essentially, we are born with a backup just in case. We are used to thinking of the kidney as an organ that takes waste products out of the bloodstream, and makes urine which is then passed to the bladder for elimination. This is the lower part of the digestive process – we take in food and air, from which we derive all the goodness that fuels our bodies. The waste is carried away by kidney and bowel.
In fact, the kidney does this and more. Dialysis is only a crude approximation of this primary function of the kidney. Little by little we are understanding the other functions of the kidney, which dialysis does not do. While it’s great that dialysis exists, the only way for this person to truly feel better is to have a new (used) kidney.
People in need of lung or liver transplant don’t even have dialysis available to them – without a new lung or liver, they will die. Each year 10,000 people die while on the list, waiting for an organ.
Depending on the person’s blood type, it can take 1-5 years on the transplant list before a donor can be found. As you will hear from Maureen, dialysis is not pleasant, especially for people with zero kidney power. Cadaver donors are people who have expressed their willingness to give their kidney by signing up on their driving license, and who die in a way that the organ has not been damaged.
YOU can help – sign up on your driving license, and talk with your family and friends. You give away your old clothes when you no longer need them – why not also give the precious organs you no longer need to save a life, and help someone get well.
Remember too that not all transplants come from people who die. Even in your lifetime, you can give this incomparable gift – as Ed has done for Maureen. If you donate a piece of your liver, your liver will in fact grow back to its original size. If you donate a portion of your lung, your can save a life. If you are willing to consider it, go through the evaluation process and talk with the transplant team about your concerns. They will not allow a donor to do anything that will endanger the donor’s own health. “First do no harm” is the watchword in evaluating donors.
Our Guests
Edbassmaster lives in Philadelphia with his wife and two children. A standup comedian, he joined YouTube a year ago, and began making videos. He had just posted his 123rd video when we spoke with him. One of his videos, “Doggie Driving” will be shown on Fox TV this winter. You can view his videos at
http://www.youtube.com/user/edbassmaster
You can “subscribe” to his videos, and receive notification whenever there is a new one.
Some of the videos referenced or played as part of this program are:
Dog Drives Car!! http://www.youtube.com/watch?v=Qp5DkqAxvAI
Francis the Ex-Gangster http://www.youtube.com/watch?v=Bwjd9g09SmQ
Earl on the Dr Phil Show http://www.youtube.com/watch?v=2A1fJzJuMV8
Vinny Sings http://www.youtube.com/watch?v=K0wnyPW0ubE
Sanjaya…Rajeesh loves you http://www.youtube.com/watch?v=hwMkICttQAE
Tribute to Steve Irwin http://www.youtube.com/watch?v=R1w91s1dBT0
Keystone Cop http://www.youtube.com/watch?v=6ulR88fJLIA
Lisa Lavie, “Angel” in Full http://www.youtube.com/watch?v=ijUHJyg6n04
Oscar and Sir Richard on myfamilychannel http://www.youtube.com/watch?v=q6gyJCLBTUY
Maureen, Ed’s sister, is 26 years old. She has been blind since the age of 17, and has undergone more than 20 surgeries. She lives in Philadelphia, where she has worked as a massage therapist.
Maureen, her mother and another brother, have a condition called von Hippel-Lindau (VHL). This is a tiny misspelling in one gene that normally suppresses tumor formation. This increases a person’s risk of certain tumors of the retina, brain, spinal cord, kidney, pancreas, and adrenal glands. Left untreated, the kidney and pancreatic tumors will grow and become full-blown cancers. To keep her from getting metastatic kidney cancer, Maureen has undergone a series of eight “partial nephrectomies” – operations to remove the cancerous tumors before they could spread to other parts of the body.
Hers is a particularly aggressive case of VHL. Her own mother and brother have experienced fewer problems with VHL.
Maureen mentions having a tumor in her bladder. This was a pheochromocytoma, which occurred in her bladder, presenting some particular challenges in diagnosing and removing it, but she came through that episode safely.
She mentions having her eyes enucleated. Once the retina detaches, the eyeball is not getting sufficient nutrition and will begin to deteriorate. Eventually the pressure in the eyeball increases causing pain, and the eyeball itself may become unsightly. At this point, people often elect to have the eyeball removed, to take away the source of the pain. A prosthesis (false eye) is created to look just like the other eye, and moves naturally with the other eye, which brings the person back to a healthy appearance.
More about organ donation
Organ donors are badly needed. Won’t you let your death possibly help another? Sign that organ donor card at the driving license bureau! And be sure to let your family and friends know that you want to do this, so there will be no doubts if and when it becomes time to make those ultimate decisions.
You can also make an organ donation during your lifetime.
If a loved one needs a new organ, please consider it seriously. It’s a privilege to be an organ donor and make a dramatic difference in the life of someone you love. Even if you are not the right blood type, you might still be able to help. In some regions they accept “designated donations”. Joe wanted to give a kidney to his wife Sandy, but he was not the right blood type. With the help of their local organ donation center, they were able to organize a three-way donation – Joe’s kidney went to the person at the top of the list in his blood type category, and Sandy received the next cadaver organ available that was a match for her. All three people are doing great.
More about von Hippel-Lindau
Von Hippel-Lindau (VHL) is a genetic cancer risk factor, raising the probability that you will get one or more tumors in your lifetime in one or more of the following areas of the body: retina, brain, spinal cord, kidney, pancreas, and adrenal glands.
Depending which tumors grow, the symptoms will vary widely. Diagnosing a new case of VHL is quite difficult. If a family knows that there is some level of risk, it is important to communicate that information to other family members, and use that information to protect yourself and others by finding issues early, and treating them appropriately.
With early detection and careful management, people with VHL are living full and happy lives. Delayed diagnosis or inappropriate treatment can result in significant disability or death.
For information about VHL, see http://www.vhl.org, and especially the Handbook at http://www.vhl.org/handbook For the publication on compiling a Family Health Tree, see https://powerfulpatient.org/knowing-your-family-medical-history/
More about pheochromocytoma
See http://www/pheoparatroopers.org
More about rehabilitation services for the blind
Rehabilitation services for blind people are available in every state. If someone is losing their sight, they can obtain access to free audio library services (books are mailed to you) and coaching on doing the things you love to do with minor adaptations that make it possible to continue doing your favorite things.
The following site is helpful in locating such services:
http://www.blind.net
A guide dog can be wonderfully helpful if it fits your lifestyle. See http://en.wikipedia.org/wiki/Guide_dog for an overview and pointers to various guide dog training schools. Your local rehabilitation services can also refer you to the agency they use in your region.
This article, based on a radio interview with Joyce Graff at https://powerfulpatient.org, was published in the VHL Family Forum in winter 2008.
Edbassmaster and his sister Maureen
Ed and Maureen, clowning around at the park … as usual.
Edbassmaster is one of the comedy stars of YouTube, the video sharing community on the internet. He makes very clever comedy skits—short videos, some of which have been viewed millions of times. Nearly 2200 people subscribe to his videos.
Earlier in 2007 one of the members of our French discussion group posted a pointer in the online discussion to a video praising Ed for agreeing to donate a kidney to his sister Maureen, who has been dealing with VHL since her teenage years. In December, Joyce interviewed Ed and Maureen for her radio show, the Powerful Patient, on webtalkradio.net.
In December 2007, according to the United Network for Organ Sharing (UNOS), there are 98,000 people waiting for a transplant. In 2007 only 21,000 transplants were performed—one fifth of the number of people waiting on the list. That means that most people will wait for five years for a transplant.
If one of these people is someone you care about, how can you shorten that wait time? A living related donor has the best chance of giving a healthy organ to a loved one. Even if the blood type doesn’t match, there is the possibility of doing a “designated donation”—you give an organ to the person at the top of the list in your blood type group, and your loved one gets the next organ available in the correct blood type group.
Maureen began to have VHL issues at the age of 4, when she was diagnosed with VHL tumors in her eyes. She lost vision in one eye at the age of 4, and in the second eye at 17. She had her left eye removed last August at the age of 26. She has had multiple eye treatments, 3 brain surgeries and 8 partial nephrectomies, and a pheo in her bladder, so she has had 27 surgeries.
“I had one too!” quipped Ed. Ed stepped up readily as a kidney donor. “There wasn’t really a decision. When she needed one, I just knew I was going to do it. I knew that she would do it for me too. It wasn’t a hard decision. Everyone on my side – my wife and everyone—were all for it as well.
“She’s been through so many surgeries, along with my mother and brother, it has been hard to stand there and not be able to do anything. It has made me feel better to be able to contribute something to help with her pain and suffering.”
The transplant was done October 23. By mid-December, both Ed and Maureen were doing well, and feeling great. Maureen had spent seven months on dialysis, during which time she was quite sick the whole time. She had many problems with her blood pressure and severe itching. Like most people with VHL, she lost her kidney function abruptly.
Maureen had a very difficult time on dialysis. She was sick for the entire seven months of dialysis.
How did she feel after the transplant? “I felt so much better! I can’t even put into words how much better I felt.”
“I really didn’t feel that way,” interjected Ed. Maureen giggled.
“I was up and eating and walking and doing well,” Maureen said, “and he was still in bed across the hall.” The first day she was still recovering from the procedure, but by the third day she was feeling great. Her new kidney was working wonderfully, cleaning out all the toxins that had built up during her time on dialysis.
Ed too had relatively little discomfort. Certainly the first and second day he was recovering from the surgery, but on the third day they sent him home with pain medication, but he didn’t feel the need of any pain meds at home. “It’s really, really, worth it if anyone out there is considering donating a kidney. It felt so good to be able to help Maureen, it was well worth the couple of days of discomfort.”
The donor and the recipient each have their own surgeon and surgical team, each dedicated to the health and well-being of their own patient. The transplant teams always take very good care of the donor. It’s truly a team effort.
Ed has a number of fascinating characters, mostly based on real people he sees every day. He has been on YouTube for a year. Before that, he had done some stand-up comedy and impersonation. A couple of his videos have been on national television already. His video “Dog Drives Car!” will be on Fox this winter. It has been viewed nearly 2.5 million times on YouTube.
Doing comedy has become a family affair. “It helps us deal with the pain through laughter. With all these surgeries, I basically try to keep everybody’s spirits up, keep them laughing.”
“He keeps us laughing all the time,” says Maureen. “Before every surgery, we’re the only ones in the waiting area hysterical, laughing at Eddie. My Mom was going in for emergency brain surgery, and we were in the intensive care unit, all laughing so hard we actually got told we had to be quiet.”
“When my surgeon came in the day after I had my kidney taken out,” Ed reported, “my Mom was in the room. I winked at her and told her not to say anything. When he came in I started moaning. The look on his face was priceless. ‘What’s wrong?’ he asked me, ‘what’s the matter?’ and then in a normal tone of voice I said, ‘Nothing, I feel fine.’ He busted out laughing. It was so funny. It was fun to see a surgeon so nervously laughing. He didn’t know how to handle it—he had never seen anything like that before. That’s how we deal with it.”
Joyce mentioned that she had heard some families say that when they make weird jokes about their VHL experience, sometimes medical staff will say they don’t seem to be taking this as seriously as it is. “Believe me,” says Ed, “we understand completely how serious it is, we just don’t want to dwell there. We prefer to keep laughing.”
The “Dog Drives Car!” video was a spur-of-the-moment idea, shot in half an hour. Ed adopted a pug dog named Richard. One day Ed got the idea of the dog taking his human for a ride in the car, so he switched roles with his dog. In the video Richard the dog is driving the car, and Ed is in the back seat panting and jumping and hanging out the car window like a dog would do.
“I had my Dad put Richard on his lap and I sat in the back acting like the dog. The car next to us was driven by my Mom, and my cousin Eric filmed us. With a little bit of photography and editing, we almost pulled it off as the dog driving. It’s humorous—you’d have to see it. That got about 2.5 million views and close to 10,000 comments. 99% of the comments are people trying to break down the video, figuring that it’s not real and that we tried to pass it off as real. Obviously dogs can’t drive, but thousands of people think I was trying to pull that off and fool the public. I just did it for fun, and the majority of people understood that and got a kick out of it.”
So this was a whole family project. Ed manages to enroll the whole family in some of his projects. “I like to involve everybody—it’s fun. A lot of my family members, cousins, like to get involved in it, especially now that it’s gaining popularity. Each one of my videos is getting a minimum of 1000 views, so they’re getting seen by a lot of people. It gets people excited and interested and they want to be part of it. It’s fun—I love doing it.”
Maureen agreed that it is great to have a brother doing comic relief for the family. They all have a good sense of humor, which they get from their mother. “Ed is not only a very funny comedian, he is a great, great husband, a great father, and obviously a more than great brother to do what he did for me. He’s one of my best friends, definitely.”
“I can say the same,” Ed agreed. “We’re very close. We talk on the phone at least six times a day.”
“I feel very, very blessed to have a brother like him.”
There’s another brother as well, who has severe learning disabilities as well as VHL. “I like to call my mother and my brother VHL wannabees,” Maureen says, “because they have only had two surgeries. They definitely have it, but not as severe. It’s been good for me because my mother has been able to be there for me all the time, taking me to the hospital and helping me. She would never have been able to do that if she had had it as severely as I do. Everything happens for a reason.”
It sounds like the family is dealing with VHL in a wonderful way.
“Yes,” says Maureen, “that’s just who we are.”
“Yes, Joyce,” says Ed, “That’s how we do. You’ve just got to joke about it. This will probably get edited out, but this is an idea of how we deal with the disease and try to laugh it off. One day I called my Mom and I said, ‘Hey, Mom, I just heard on the radio that they found a new form of VHL and if affects women in their breast.’ And she said, O my God, get out of here!’ And I said, “Yeah, and it’s called von Nipple.’ And she lost it for about ten minutes. She just couldn’t stop laughing.
“That’s just an idea of how we deal with things around here. It’s terrible, but otherwise we would just mope about it and get depressed about it. And that wouldn’t be good for anyone. It helps us—it helps me, I know that.”
When you have a serious condition in the family, you have to find a way to incorporate that into your life. It is a part of your life. You can’t just keep pretending it’s not there. Humor is a wonderful way to be dealing with it.
Maureen’s advice to others with VHL: “Don’t let it affect you negatively, don’t let it affect who you are.”
“If anyone is thinking about donating a kidney,” says Ed, “it’s definitely well worth it. It’s a once-in-a-lifetime experience—you can only do it one time—and it’s definitely the right things to do. If you’re contemplating it, definitely go for it, and you’ll feel great about it afterwards.”
We hope to see lots more of Edbassmaster on YouTube and on television.
“It still amazes me,” says Maureen, “how many doctors know nothing about VHL. We need to fix that.” Ed hopes to be part of the solution, bringing more public attention on VHL.
