Thursday, July 14, 2011

Jaime Muñoz - National Jewish Health

Jaime Muñoz - National Jewish Health

Six years ago, Jaime Muñoz’s doctors in New Mexico told him he did not have long to live. Today, after a new diagnosis and a double-lung transplant in Denver, Jaime Muñoz, 38, can walk into National Jewish Health without oxygen therapy and with hope that he will be with his wife and children long into the future.

A Record-Breaking Triple at McCoy: PawSox and Gift of Life Saves Three Lives!


Gift of Life Bone Marrow Foundation - A Record-Breaking Triple at McCoy: PawSox and Gift of Life Saves Three Lives! - Gift of Life Bone Marrow Foundation

This is North Devon | Sore ankle is nothing to Mick

This is North Devon | Sore ankle is nothing to Mick

Since he had a heart transplant 18 years ago, Mick has been an inspirational example of what can be achieved.

THE SMALL matter of a sore ankle was not going to stop Mick Foster representing his country at the World Transplant Games.

Mick, of Holsworthy, shrugged off the injury to win four medals in Gothenburg as the Great Britain team finished top of the table.

Replacing Body Parts | NOVA scienceNOW | PBS Video

Replacing Body Parts | NOVA scienceNOW | PBS Video

This is absolutely fascinating. I have the video posted permanently on the right side of my blog but many have not seen it yet. Please take a few minutes to view this. It is a great learning and experience.

Watch the full episode. See more NOVA scienceNOW.

‪What is Bone Marrow Donation?‬‏ - YouTube

‪What is Bone Marrow Donation?‬‏ - YouTube

Monday, July 11, 2011

France ADOT "Thank You" campaign

A federation of associations that work throughout France to inform and raise awareness on organ, tissue and bone marrow donation

France ADOT "Thank You" campaign

Saturday, July 9, 2011

Organ Transplant and Skin Cancer | Organ Transplants

Organ Transplant and Skin Cancer | Organ Transplants

Charity Tillemann-Dick: Singing after a double lung transplant

Charity Tillemann-Dick: Singing after a double lung transplant | Video on

Thanks for the article Carolyn.

If you do not want to listen to the video but would rather read it, here it is.
You may not know this, but you are celebrating an anniversary with me. I'm not married, but one year ago today, I woke up from a month-long coma, following a double lung transplant. Crazy, I know. Insane. Thank you.
Six years before that, I was starting my career as an opera singer in Europe, when I was diagnosed idiopathic pulmonary hypertension -- also known as PH It happens when there's a thickening in the pulmonary veins, making the right side of the heart work overtime, and causing what I call the reverse-Grinch effect. My heart was three and a half sizes too big. Physical activity becomes very difficult for people with this condition. And usually after two to five years, you die. I went to see this specialist, and she was top-of-the-field and told me I had to stop singing. She said, "Those high notes are going to kill you." While she didn't have any medical evidence to back up her claim that there was a relationship between operatic arias and pulmonary hypertension, she was absolutely emphatic I was singing my own obituary. I was very limited by my condition, physically. But I was not limited when I sang. And as air came up from my lungs, through my vocal cords and passed my lips as sound, it was the closest thing I had ever come to transcendence. And just because of someone's hunch, I wasn't going to give it up.
Thankfully, I met Reda Girgis, who is dry as toast, but he and his team at Johns Hopkins didn't just want me to survive. They wanted me to live a meaningful life. This meant making trade-offs. I come from Colorado. It's a mile high, and I grew up there with my 10 brothers and sisters and two adoring parents. Well, the altitude exacerbated my symptoms. So I moved to Baltimore to be near my doctors and enrolled in conservatory nearby. I couldn't walk as much as I used to, so I opted for five-inch heels. And I gave up salt, I went vegan, and I started taking huge doses of -- sildenafil -- also known as Viagra.
My father and my grandfather were always looking for the newest thing in alternative or traditional therapies for PH, but after six months, I couldn't walk up a small hill, I couldn't climb a flight of stairs, I could barely stand up without feeling like I was going to faint. I had a heart catheterization, where they measure this internal arterial pulmonary pressure, which is supposed to be between 15 and 20. Mine was 146. I like to do things big. And it meant one thing: There is a big gun treatment for pulmonary hypertension called Flolan. And it's not just a drug, it's a way of life. doctors insert a catheter in your chest, which is attached to a pump that weighs about four and a half pounds. Every day, 24 hours, that pump is at your side, administering medicine directly to your heart. And it's not a particularly preferable medicine in many senses. This is a list of the side effects: If you eat too much salt, like a peanut butter and jelly sandwich, you'll probably end up in the ICU. If you go through a metal detector, you'll probably die. If you get a bubble in your medicine -- because you have to mix it every morning -- and it stays in there, you probably die. If you run out of medicine, you definitely die.
No one wants to go on Flolan. But when I needed it, it was a godsend. Within a few days, I could walk again. Within a few weeks, I was performing. And in a few months, I debuted at the Kennedy Center. The pump was a little bit problematic when performing, so I'd attach it to my inner thigh with the help of the girdle and an ACE bandage. Literally hundreds of elevator rides were spent with me alone stuffing the pump into my Spanx, hoping the doors wouldn't open unexpectedly. And the tubing coming out of my chest was a nightmare for costume designers. I graduated from graduate school in 2006, and I got a fellowship to go back to Europe. A few days after arriving, I met this wonderful, old conductor who started casting me in all of these roles. And before long, I was commuting between Budapest, Milan and Florence. Though I was attached to this ugly, unwanted, high-maintenance, mechanical pet, my life was kind of like the happy part in an opera -- very complicated, but in a good way.
Then in February of 2008, my grandfather passed away. He was a big figure in all of our lives, and we loved him very much. It certainly didn't prepare me for what came next. Seven weeks later, I got a call from my family. My father had been in a catastrophic car accident, and he died. At 24, my death would have been entirely expected. But his -- well the only way I can articulate how it felt was that it precipitated my medical decline. Against my doctors' and family's wishes, I needed to go back for the funeral. I had to say goodbye in some way, shape or form. But soon I was showing signs of right-heart failure, and I had to return to sea level, doing so knowing that I probably would never see my home again.
I canceled most of my engagements that summer, but I had one left in Tel Aviv, so I went. After one performance, I could barely drag myself from the stage to the taxicab. I sat down and felt the blood rush down from my face. And in the heat of the desert, I was freezing cold. My fingers started turning blue, and I was like, "What is going on here?" I heard my heart's valves snapping open and closed. The cab stopped, and I pulled my body from it feeling each ounce of weight as I walked to the elevator. I fell through my apartment door and crawled to the bathroom where I found my problem: I had forgotten to mix in the most important part of my medicine. I was dying. And if I didn't mix that stuff up fast, I would never leave that apartment alive. I started mixing, and I felt like everything was going to fall out through one hole or another, but I just kept on going. Finally, with the last bottle in and the last bubble out, I attached the pump to the tubing and lay there hoping it would kick in soon enough. If it didn't, I'd probably see my father sooner than I anticipated. Thankfully, in a few minutes, I saw the signature hive-like rash appear on my legs, which is a side effect of the medication, and I knew I'd be okay.
We're not big on fear in my family, but I was scared. I went back to the States, anticipating I'd return to Europe, but the heart catheterization showed that I wasn't going anywhere farther that a flight-for-life from Johns Hopkins Hospital. I performed here and there, but as my condition deteriorated so did my voice. My doctor wanted me to get on the list for a lung transplant; I didn't. I had two friends who had recently died months after having very challenging surgeries. I knew another young man, though, who had PH who died while waiting for one. I wanted to live. I thought stem cells were a good option, but they hadn't developed to a point where I could take advantage of them yet. I officially took a break from singing, and I went to the Cleveland Clinic to be reevaluated for the third time in five years, for transplant. I was sitting there kind of unenthusiastically talking with the head transplant surgeon, and I asked him if I needed a transplant, what I could do to prepare. He said, "Be happy. A happy patient is a healthy patient." It was like in one verbal swoop he had channeled my thoughts on life and medicine and Confucius. I still didn't want a transplant, but in a month, I was back in the hospital with some severely edemic kankles -- very attractive. And it was right-heart failure.
I finally decided it was time to take my doctor's advice. It was time for me to go to Cleveland and to start the agonizing wait for a match. But the next morning, while I was still in the hospital, I got a telephone call. It was my doctor in Cleveland, Marie Budev. And they had lungs. It was a match. They were from Texas. And everybody was really happy for me, but me. Because, despite their problems, I had spent my whole life training my lungs, and I was not particularly enthusiastic about giving them up. I flew to Cleveland. And my family rushed there in hopes that they would meet me and say what we knew might be our final goodbye. But organs don't wait. And I went into surgery before I could say goodbye. The last thing I remember was lying on a white blanket, telling my surgeon that I needed to see my mother again, and to please try and save my voice. I fell into this apocalyptic dreamworld.
During the thirteen-and-a-half hour surgery, I flatlined twice, 40 quarts of blood were infused into my body. And in my surgeon's 20-year career, he said it was among the most difficult transplants that he's ever performed. They left my chest open for two weeks. You could see my over-sized heart beating inside of it. I was on a dozen machines that were keeping my alive. An infection ravaged my skin. I had hoped my voice would be saved, but my doctors knew that the breathing tubes going down my throat might have already destroyed it. If they stayed in, there was no way I would ever sing again. So my doctor got the ENT -- the top guy at the clinic -- to come down and give me surgery to move the tubes around my voice box. He said it would kill me. So my own surgeon performed the procedure in a last-ditch attempt to save my voice.
Though my mom couldn't say goodbye to me before the surgery, she didn't leave my side in the months of recovery that followed. And if you want an example of perseverance, grit and strength in a beautiful, little package, it is her. One year ago to this very day, I woke up. I was 95 lbs. There were a dozen tubes coming in and out of my body. I couldn't walk, I couldn't talk, I couldn't eat, I couldn't move, I certainly couldn't sing, I couldn't even breathe, but when I looked up and I saw my mother, I couldn't help but smile.
Whether by a Mack truck or by heart failure or faulty lungs, death happens. But life isn't really just about avoiding death, is it? It's about living. Medical conditions don't negate the human condition. And when people are allowed to pursue their passions, doctors will find they have better, happier and healthier patients. My parents were totally stressed out about me going and auditioning and traveling and performing all over the place, but they knew that it was much better for me to do that than be preoccupied with my own mortality all of the time. And I'm so grateful they did.
This past summer when I was running and singing and dancing and playing with my nieces and my nephews and my brothers and my sisters and my mother and my grandmother in the Colorado Rockies, I couldn't help but think of that doctor who told me that I couldn't sing. And I wanted to tell her, and I want to tell you, we need to stop letting disease divorce us from our dreams. When we do, we will find that patients don't just survive, we thrive. And some of us might even sing.
(Applause) [Singing: French]
Thank you. (Applause) Thank you. And I'd like to thank my pianist, Monica Lee. (Applause) Thank you so much. Thank you.

Celebrate Life,

Friday, July 8, 2011

The stronger before, the stronger after


(The original date of this post was 11/01/2010 from  It is no secret that the stronger I am before surgery, the stronger I will be post surgery. To think of all the work, work outs that I have done trying to stay in shape. Working my lungs with cardiac exercises, the conditioning and the strength training. Now when I need to do these things the most is when I have the least energy. Yes, that does make sense due to the progression of this disease but it stinks. I could never let all that work go in vein so I started pulmonary therapy when I realized that I could no longer play volleyball. Playing volleyball with two oxygen tanks took a lot of coordination and strength. When the two tanks could not deliver my needs I knew it was time to quit (temporarily of course!) Ironically enough, as I think about it now, it was shortly afterward that I started using oxygen 24/7. So I guess I did get the best bang for my buck as far as oxygen goes. :)

I go to pulmonary rehab three times a week and I can only do 26 to 30 min of cardio but guess what? I do 26 to 30 min of cardio! I know am transitioning back to as much raw, healthy, nutritional foods. Life happened and I fell off the "raw foods" wagon. I am really just trying to get back to being vegetarian. I have been enjoying seafood. Some times I can do these things overnight and other times it is a transition. I have not given up my green smoothies though. These I enjoy almost daily. I feel that if I can eat mostly vegetables perhaps that will get my energy levels up some so that I can move around more. I have become too sedentary. I live my life avoiding oxygen deprivation and avoiding coughing.

Besides I have a few 5K's to run after my surgery. My nurse and I are running the Donor 5K in Philadelphia next year, I have a 5K in Puerto Rico in honor of my cousin. There are three more that I have planned with friends. I have a lot of training to do but first I need to upgrade my equipment.

Live in gratitude

Fear of loss is what creates loss. Love of possibilities is what drives the fulfillment of those possibilities.
What good is it to have something if you constantly live in fear of losing it? In some ways, that's worse than not having it at all.
Instead of living in fear, live in gratitude. Fill your heart with love and thankfulness for all that you now have, so that there is no space left for fear.
Fill your mind with thoughts of the very best of what is possible for your world. Fill your spirit with a bright, sparkling vision of how good you know life can be.
Sure, the superficial things will come and go, so don't let those things define you. Instead, treasure the values that transcend every moment and every circumstance.
The genuine person inside is much more powerful than your ego that always feels so threatened. Live in gratitude and let the real, authentic, courageous person you are, always come shining through.
-- Ralph Marston
Celebrate Life,

Thursday, July 7, 2011

Biking for organ donations - WLBT 3 - Jackson, MS:

Biking for organ donations - WLBT 3 - Jackson, MS:

Accepting an Organ Transplant

(The original date of this post was 10/30/2010 from 
My biggest struggle with being on the lung transplant list is that someone has to pass in order for me to get lungs. I have thought about this for months, perhaps years since my father had a lung transplant 9 years ago. No matter what, it is still a tough situation to process. I have met a few earth angels along the way that have given me ways to accept this so I should pony up, take the positive and run with it. The only thing is that this is very difficult. I have had to come to the computer four times already trying to write this entree. This is so difficult to put into words.

The best example I could use is that if I had met anyone with any of my cousin Teddy's or niece Patricia's organs it would have comforted me. Unfortunately too much time lapsed for them to give organs because of the way they passed. The comfort and joy that I believe I would feel if I knew my relatives would have given others a second chance in life is what helps me to accept this gift for myself. I was able to process these feelings better when they were for my father but it is very different to internalize for myself.

This is assuming that the organs I receive are from someone who has registered as an organ donor. Now imagine getting organs from someone who was never on the list. These dedicated employee's that work for UNOS make calls to families during the worse times of their lives. These people are grieving and making arrangements for their loved one's passing they are asked to save other people's lives through organ transplantation.

Ignite your passion 

Ability is about more than skill. Ability is about more than knowledge.
Though skill and knowledge and experience are important, there's something even more powerful that drives ability. It is passion.
If you do not have a strong desire, fueled by passion, it doesn't really matter how much skill you have. If you lack passion, it doesn't matter how much experience or knowledge you have.
When you are truly passionate, that brings your skills and knowledge to life. When you are truly passionate, even if you lack sufficient skills you will find a way to acquire them.
Passion compels and enables you to connect with whatever is necessary to express and fulfill that passion. Passion pushes you into action, and supplies the energy for perseverance.
What are the things that ignite your passion? It's well worth your time and effort to know exactly what they are.
 -- Ralph Marston
Celebrate Life,

Tuesday, July 5, 2011

Monday, July 4, 2011

The Film | The Power of Two

The Film | The Power of Two

Inspired by their 2007 memoir, “The Power Of Two” offers an intimate portrayal of the bond between half-Japanese twin sisters Anabel Stenzel and Isabel Stenzel Byrnes, their battle with the fatal genetic disease cystic fibrosis (CF) and miraculous survival through double lung transplants. Defying all odds, Ana and Isa have emerged as authors, athletes and global advocates for organ donation, and their connection to the CF and transplant communities provides rare insight into the struggles — and overlooked joys — of chronic illness.

Friday, July 1, 2011

To Remember Me - Donating Organs after Death

As you may already know my father is a lung transplant recipient and another transplant recipient gave him an article to read back in October of 2007.  I just came across it again and I wanted to share with you a poem that was in the article that was written by Robert Noel Test (1926-1994) entitled To Remember Me and it is about donating organs after death.

The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in hospital busily occupied with the living and the dying.
At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has stopped.

When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my deathbed. Let it be called the Bed of Life, and let my body be taken from it to help others lead fuller lives.

Give my sight to a man who has never seen a sunrise, a baby’s face or love in the eyes of a woman.

Give my heart to a person whose own heart has pain.

Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.

Give my kidneys to one who depends on a machine to exist from week to week.
Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.

Take my cells, if necessary, and let them grow so that , someday, a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her windows.

Burn what is left of me and scatter the ashes to the winds to help the flowers grow.

If you must bury something, let it be my faults, my weaknesses and all my prejudice against my fellow man.

Give my sins to the devil. Give my soul to God. If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you.

If you do all I have asked, I will live forever.

Celebrate Life,