Before an organ transplant, when you’re body is frail and you don’t know if you are going to live or die, your main goal is to stay alive long enough to get that transplant. Every moment it is about surviving long enough to witness the miracle of organ donation in your life and to come out the other side of the transplant alive. There is no way to prepare yourself for life after transplant, it just the transplant itself that matters.

Whether you are the one having the organ transplant or a caregiver/family member, you are blinded to what exists on the other side of that surgery. I liken it to living the first half of your life, the ages before 40, and then having your midlife party to wonder “now what”. I wouldn’t necessarily call it a mid-life crisis but I guess that’s what it is, really. Even when we are healthy, we don’t see past the age of youth (or life) until we are on the other side wondering what to do with ourselves.

My husband and I are both approaching 40 (currently 38 at the time of this post) and we are also on the other side of a transplant (8 years at the time of this post) so we have unique perspective on both areas of life and death. Alas, we never prepared for what the second half of our lives would bring – or what life would be like after his double-lung transplant.

After his transplant, he was full of life and wanted to try everything new. That lasted for about 6 months and then he was back at work and being, what society thought of as, “responsible”. We both were excited at first and the visions of travel and life experiences soon faded away. Our little bubble of the world before transplant morphed into the mundane life of just existing.

Now, don’t get me wrong at all. This is not a depressing post at all. It is not “woe is me” or “what was I thinking”. It is more about understanding the different levels to life. And, as one reaches 40, one starts thinking about the different levels of experiences in this world – and which ones to partake.

Being that we are both introverts (Hey – Billy Crystal is an introvert too!), we like the quiet life experiences such as nature, seeing new things and enjoying time together. We aren’t looking to jump out of any airplanes or travel the world in 80 days – but rather, we are looking to enjoy the 2nd life God has given us to enjoy every moment that is in our path.

What does that mean? Well, being 40 doesn’t mean you have to grow up and it doesn’t mean you have to be society’s idea of “responsible”. I’ll let you in on a little secret – I ride shopping carts while grocery shopping with my husband. Yes, I am that childish adult you see, without kids, hopping along and making my husband laugh. Why? Because that is me and that is enjoyable.

So, for the 2nd half of your journey, just enjoy every moment. Don’t look at what you have in material items or how many passport stamps you have as a symbol of living a good life. Enjoy every single thing you do and, if you don’t enjoy, either stop doing it or find a way to enjoy it.

Heck, I hate grocery shopping but I love riding shopping carts! Now it’s your turn to hop on that cart and enjoy the ride!

The post 2nd Chance at Life: The Life Quest appeared first on Angel Cove Transplant Blog.

I know. I had pledged to take a sabbatical from this blog. I thought there was nothing left to say. I felt as though I had no more to share with others about organ donation and transplant awareness. That was, until a few moments ago, when a friend shared a photo on Facebook of someone I never met, never knew and would never know. A love that went beyond the bonds of what some perceive to be a “normal relationship. A moment in time of unconditional love, hope and faith.

Here is what was shared with me (click picture for larger view):

Her name is Katie Kirkpatrick, 21 yrs old. Next to her is her fiancé, Nick, 23. (Pic1)

This picture was taken prior to their wedding January 11th, 2005.
Katie has terminal cancer and spends hours in chemotherapy.
Here Nick awaits while she finishes one of the sessions…(Pic2)

Even in pain and dealing with her organs shutting down, with the help of morphine,
Katie took care of every single part of the wedding planning.
Her dress had to be adjusted several times due to Katie ‘s constant weight loss. (Pic3)

An expected guest was her oxygen tank. Katie had to use it during the ceremony and reception.
The other couple in this picture is Nick’s parents, very emotional with the wedding and to see their
son marrying the girl he fell in love when he was an adolescent. (Pic4)

Katie , in a wheel chair listening to her husband and friends singing to her. (Pic5)

In the middle of the party, Katie had to rest for a bit and catch her breath.
The pain does not allow her to stand for long period of time. (Pic6)

Katie died 5 days after her wedding. To see a fragile woman dress as bride with a beautiful smile
makes you think… happiness is always there within reach, no matter how long it lasts…..
lets enjoy life and don’t live a complicated life. Life is too short.
Work as if it was your first day.
Forgive as soon as possible.
Love without boundaries…
Laugh without control
and never stop smiling.
Please pray for those suffering from cancer.
We all have close to our heart.
Keep this going.

Prayers are always answered.

Life is too short to argue and desperate.

These pictures sparked a part of me that I had long forgotten.

Greg and I were married in June 1999, after 4 years together. I moved my world from the East Coast to the Midwest, because I did not want to take him away from his doctors. He was born with Cystic Fibrosis – a “terminal” childhood illness that claimed his older sister when she was only 16 years old. A disease that, shortly after we were married, would try to claim his life a few times.

I’ve watched my best friend and husband go from 1 liter of oxygen at night up to 4 liters 24/7 and then to 24/7 life supporting ventilation. I’ve bathed him when he was sick, was his voice when a machine breathed for him and battled every moment with the doctors to not give up hope. After years of machines, he received his double lung transplant and will be celebrating his 8th transplant anniversary this year – without any hint of rejection or complications.

I married him, knowing there was a great chance I would be a widow by the time I was 30 years old. To me, there was no option. He is part of me and, although I don’t always agree with everything he does, he has a beautiful soul that would blind others if they truly had the opportunity to see it. He is my lover, my best friend and the man that I will spend eternity with no matter what comes our way.

So, the reason for my return is to help others realize that love can conquer all and nothing should ever stand in the way of the love you feel for another human being. Stand tall in that strength and rely on the love to guide you through both the good and bad. Let nothing stand in its way!

The post To Love Beyond Illness appeared first on Angel Cove Transplant Blog.

As of this posting, I will be on long-term sabbatical from the Angel Cove Transplant Blog.

Over the last year, I’ve flip-flopped back and forth on whether or not to keep this blog up and running. It’s one thing to write from the heart but an entirely different thing to write because you feel like you have to given someone something to read.

I don’t want to just fill these virtual pages with words to suit an ego or feel like I may be helping others. In all honesty, if I’m not writing from the heart then I’m not helping anyone – least of all my family and me.

On November 11, 2011, my husband will celebrate 7 blessed years with his “hand-me-down” lungs. It will be on that day that we celebrate the beauty that is life after an organ donor and his family gave my wonderful husband a second chance at his.

Life should be celebrated and it is time for us to put aside Angel Cove and work on build a life that can fill books instead of electronic pages.

My words will continue to live on through this blog as an archive and Angel Cove on Facebook and Twitter – those too as archives. The Angel Cove Transplant Awareness Shop will still continue to be open for business – gifts and t-shirts to help raise organ donation awareness – as well as 10% donated to the UW-Madison Hospitals transplant fund. So, please feel free to head over to my shop and continue to spread awareness.

So, I bid you a fond farewell – for now.

If, of course, you feel the need to follow me on a personal level, feel free to subscribe to my Facebook personal page, as I will never be totally gone.

Irish smiles and may your life be blessed with love, laughter, health and happiness.

The post My Long-Term Angel Cove Sabbatical appeared first on Angel Cove Transplant Blog.

Diving headfirst into the harshness of disease and the triumph of the miracle of life, double heart and kidney transplant survivor Bill Coon takes you along as he swims the choppy waters of his own life in his book Swim: A Memoir of Survival. In 1989, Bill Coon was born with a congenital heart defect. That year, he became the fourth infant heart transplant in the Midwest and the eighth in America. At the age of twenty, his transplanted heart began to fail. Due to a lifetime of taking medication, his kidneys failed as well. After he was diagnosed with both end-stage heart and kidney failure, Bill unknowingly began writing his first book on Sunday, July 5, 2009.

Title: Swim: A Memoir of Survival
Author: Bill Coon
ISBN-10: 0982902506
ISBN-13: 978-0982902509
Paperback: 270 pages
Publisher: Bizurich Media (September 13, 2010)
Language: English
Purchase at: Amazon

Shannon’s thoughts: Bill leaves nothing out in this book. When he is in pain, you are in pain. When he is strong, you are strong. Every emotion and feeling – no matter how raw – is captured through his journal entries as he battles a second time for his life with end-stage heart and kidney failure.

Swim is a very raw book that demonstrates the pain that illness can cause for the patient as well as for the family and caregivers. Through this pain, Bill begins to find his true self and the strength he always had to win the battle for his life. This review on his book sums it up best:

If Bill’s story of survival can’t convince you of the important of organ donation, nothing ever will. –WAOW-TV

Shannon’s rating: Excellent for anyone touched by organ donation and the miracle of organ transplantation. Please note though that Bill does use some strong language at times as he conveys his true emotions throughout his illness and transplantation process.

Have you had a chance to read Bill Coon’s book yet? What are your thoughts? Has it impacted the way you look at organ donors, organ donation and transplantation?

The post Swim: A Memoir of Survival (Book Review) appeared first on Angel Cove Transplant Blog.

When you’ve lived around someone with an illness as long as I have, you start to learn the subtle changes in that person that flag a small alarm in the back of your head. It can be a small change in behavior or the slight discoloration of skin. Sometimes it can even be a feeling that you get when you are around the person – like something is just “off”.

As I kissed my husband goodbye this morning, that alarm lightly sounded.

It’s amazing how a simple kiss can alert you to a change in another human being’s body. No, I’m not talking about the passion or “change-the-world” type of kiss. I’m just talking about a simple quick kiss on the lips that you get when you leave someone you love.

It was the smell that caught my attention. My husband had just coughed moments before he kissed me and I knew the smell immediately. It was the smell of Cystic Fibrosis.

Now remember, my husband is a miracle double-lung transplant recipient of almost 7 years now. He is healthy as a horse and can run circles around me. His lung function is great and there is absolutely no sign of a cold. Just a simple smell that reminded me of kissing him when he had Cystic Fibrosis infected lungs.

The smell is hard to describe but I am sure that those of you reading this – that are intimately involved with a person with Cystic Fibrosis – know that smell. Each smell is different but there is also a smell as the bacteria in the lungs give off their own distinct smell.

The subtle smell had me take a step back, look him square in the eyes and say: “You smell like CF.”

I think it was his response that caught me off guard. He smiled and said: “OK. I’ll call the transplant coordinator and get a prescription for Cipro.”

After my quizzical look, he smiled and told me that he had a slight increase in coughing over the last couple of months but nothing to worry him. Since he can’t smell (thank to nasal polyps), he didn’t know that aspect was present until I told him.

It was no shock – just a signal to my husband to get a “tune up” for his miracle lungs. You see, the lungs are clean and good but the bugs from the mucus in his nasal cavity (pseudomonas) can easily make their way down to the lungs. The smell is a signal that things need to be cleaned out and keep those bugs from spreading and damaging his miracle lungs.

One might find it offensive to tell someone they smell bad but it’s important to be open an honest with those we love when they have an illness. Sometimes they just don’t realize there is something wrong until the one they love says something.

Being together for 16 years, my husband and I have learned to be open and honest about such things. This honesty and alertness has saved his life more than once.

The post Increased Coughing and the CF Smell appeared first on Angel Cove Transplant Blog.

Would you give of yourself? When you think about giving all that you have, at what end would you help another living human being? The selfless act of becoming a living organ donor is not common enough nor is the act of continuing to raise organ donor awareness after the fact. But to some, the act of giving – through an organ transplant – doesn’t stop after healing from surgery. For some, it is only the beginning.

Ask me about my living kidney donation is a way to get a conversation going. Hopefully, God willing, the conversation will end with one more person signing up to be an organ donor. It is one thing to speak about something but an entirely different thing to be a living example of a miracle.

(Thank you to living kidney donor, Laura L., for this great design idea!)

The post Ask Me About My Living Kidney Donation appeared first on Angel Cove Transplant Blog.

Do you ever find yourself desperately wanting a change in your life? This need for change can be as simple as rearranging the furniture in your house or as complex as moving to an entirely new country. Change is the only constant in life and change is good. Well, that is only if you aren’t seeking change just for the sake of change.

Ever since my husband’s double lung organ transplant in 2004, we haven’t been able to sit idle. The peace and quiet in our lives is something we had only previous dreamed about during the years where he was constantly sick. In the life of someone with Cystic Fibrosis, every day is different – challenges, changes in health and even the smallest of successes. Then a miracle organ transplant comes along and the drama is gone – leaving a peace and freedom once longed.

We have been at that “peaceful” stage for almost 7 years now and in those years since his transplant, we have had a number of problems that we have imposed on ourselves. The constant of change was no longer part of our lives and we found ourselves living in a world of stagnation. Well, that’s the way we lived but it wasn’t until this weekend that we put all the puzzle pieces together and realized what we were doing.

Ultimately, we kept hurting ourselves but self-inducing change into our lives on a daily basis. Sure, you would think change is good – and it can be very good – but we started to change every single thing in our lives just for the sake of change. The change we had known when he was sick acted like a security blanket. Yes, it was a hard and sometimes horrible life but we had grown into a sense of comfort with that constant change.

So when the change was gone, we found ourselves buying things we couldn’t afford, changing our living circumstances, and doing things we normally would not do. In the end, we kept changing our lives – on a weekly basis – for the sake of change.

Sad, I know.

Today, we are healthy, still very much in love but we find ourselves frustrated with what we have done over the last 7 years. Sure, we have enjoyed life but not in a healthy way and have yet to follow through on all the promises we made to each other – when he would have his second chance at life. The experiences we want and the life we have yet to live now need be put on a back burner until we can dig ourselves out of a financial and mental hole.

Before the transplant, we had a richness of life that others envied. Today, we sit alone with our house we should have never bought, financial debt incurred by loads of “toys” and regrets of stupid changes we made in our lives – dreaming of a richer future – making the memories we once shared while in hospitals and on life support machines.

Beware change for the sake of change. If you are a transplant recipient or family member, enjoy the second life you have been given today and steer free from the fear of peace. Make memories for a lifetime and don’t buy into things that will just give you instant gratification today. Life is to be cherished – not changed.

The post Beware Change for the Sake of Change appeared first on Angel Cove Transplant Blog.

Upon my couch I had started to think about where this blog is going and where it has been. At once, the Angel Cove Transplant Blog served as a means to communicate with friends and family about my husband’s health prior to and after his miracle double-lung transplant. As we come upon the 7th year anniversary of his first transplant dry run, I am left pondering yet again how much this blog has lost the human feel – the beat of our own hearts.

Last year I was diagnosed with Fibromyalgia – after 12 long years of being very sick with countless symptoms of the syndrome. It was after Greg (my husband) started to truly recover from his bilateral transplant that my symptoms became worse and the debilitation of the Fibromyalgia started to settle in. It was also about that time that Greg’s life started to truly begin and my life started to dwindle.

That was until yesterday.

A while ago, I had gotten an email from a guy by the name of Bill Coon. Although I had read his name a couple of places before, I must admit that I never really took the time to get to know him or his story. As it happens, Bill took is upon himself to get to know me – through my work on my Angel Cove Organ Donation Awareness website – and he sent me a copy of his book, Swim : A Memoir of Survival. The inscription inside the book read simply: “Shannon – I hope you enjoy the book! I have been wanting to work with Angel Cove for quite some time now. –Bill Coon.”

Really? You’ve been wanting to work with me? All I did was create a website and blog to convey my passion for organ donation awareness to others. It was my hope that just one person would become an organ donor by reading my husband’s story or by seeing someone wear one of our organ donation awareness t-shirts. I never thought about becoming more than a wife with a voice and a passion.

The funny part is that this is not the first time I’ve had this reaction to Angel Cove. Even in my SEO consulting business, I have had other organ donation awareness online shops contact me for help in increasing their traffic and sales. These people often tell me: “I want to be like Angel Cove.” Imagine their shock when I admit that I’m Angel Cove. “Oh my God! I love your stuff and website! Really? You’re THE Angel Cove?” Why, yes, I am!

So this leads me back to the Bill Coon’s book. It wasn’t until I started reading it yesterday that I realized the path that my husband and I have been on and exactly how far we have come. We have our own survival story and, unfortunately, my voice and heart got lost behind my own illness.

That is not to say that I’m making any excuses about my Fibromyalgia or for letting this blog become quiet. I had some things to take care of before I could move on in my life. Of course, I am still working through those things but I am beginning to realize that we have so much more left of our journey and passion to share with others.

It may take some time to become strong again but, in time, this blog’s heartbeat will be strong once again.

Side note: I will be writing a review of this book once I’ve read it entirely – within the next week. Stay tuned!

The post The Heart of Angel Cove appeared first on Angel Cove Transplant Blog.

Organ donation has always been a very personal topic and many families would rather never think about a time when their loved one may die, let alone talk openly about whether they want to donate their organs or not. Unfortunately, many wait until the hospital’s organ procurement department ask them directly – just as their loved one is dying. For that reason, many hospitals have begun adopting an organ donation opt-out system rather than opt-in.

Opt-In vs. Opt-Out Organ Donation
The difference between opt-in and opt-out organ donation is that the former looks at consent to become an organ donor whereas the latter assumes you are an organ donor unless you (or your family) state otherwise. Many countries and individual states have agreed on the opt-in system to provide possible organ donors with making a more informed decision. The problem is that many people never think about organ donation and transplantation, let alone discuss it before their passing.

Due to the lack of communication, many countries and states have started to welcome an opt-out system of organ donation. Places, such as Ireland, have been recorded as having only one (1) organ donor per year. Through the new system, a person’s organs would automatically be harvested unless they specifically request for them not to be used in organ donation. Both hospitals and health professionals believe this new system will increase they rate of organ donation and save many lives without burdening the family left behind.

Although I am an organ donor and wife of a double lung transplant recipient, there are many moral and ethical implications of such an opt-out system. To state that a hospital has the authority to one’s body, to do with it as it pleases, may tend to make some believe that they are nothing but an object of possession. Others may see this as the first step to hospitals (or state governments) placing authority in the practice of living donors as well in the future.

What do you think? Should states and government be able to implement an opt-out system to organ donation? If so, are you an organ transplant recipient or on the waiting list for an organ transplant and feel such new regulations in organ donation may save your life? Do you think this crosses any ethical barriers or is perfectly ethical?

The post Is an Organ Donation Opt-Out System Ethical? appeared first on Angel Cove Transplant Blog.

It always amazes me the ingenuity and creativeness of people to raise awareness for organ donation and transplantation. Although Angel Cove carries hundreds of designs and thousands of organ donation awareness products, many people contact me for customized designs for their special events and fundraisers. And I couldn’t be happier!

Just recently a woman who was getting ready for her sons Bar Mitzvah contacted me. Her sister was waiting for an organ transplant (a second organ transplant) and she wanted to do something special to raise organ donation awareness. Her son came up with the idea of including organ donation awareness stamps on the event invitations. Ingenious!

The woman picked a design that she loved but wanted to coordinate the colors with those of her son’s event. Originally the colors had been orange and yellow and I was happy to change them to blue and white. That simple change help bridge the event together with organ donation awareness as hundreds of invitations were sent out.

The reason this is so special is because not only were the attendees going to receive an invitation with an organ donation awareness stamp on it, but also everyone that came in contact with that invitation with see the stamp and notes celebrate life. From the postman to the letter carrier to her friends and family, everyone with viewing range would have their attention grabbed by a predominant display of love and gratitude.

This is a testimony of the lengths friends and family will go through to help raise organ donation awareness. If you need a customized design for your event or loved one, please feel free to contact me to discuss options. I am more than happy to help in anyway I can.

Irish smiles,

The post Customized Organ Donation Awareness Gifts appeared first on Angel Cove Transplant Blog.

>> Please note that free buttons are no longer available due to the huge response to this blog post. Please contact Donate Life America for possible organ donation awareness products for your fundraising event. Thank you. <<

Many people know but Angel Cove donates hundreds of organ donation awareness pins every year. Most are given to the UW-Madison hospitals and clinics in order to help increase organ donation awareness through their organ transplant recipient packets. However, many are not aware that we donate many more packets to nonprofit organizations and fundraisers.

The organ donation awareness packets are simply an awareness business card for Angel Cove and mini pins with either the Angel Cove mascot or a green organ donation awareness ribbon with a red rose symbolizing the organ donors that have given their lives to help others. This is our little way of giving back to the community that has given us so much in return.

If you are interested in receiving free organ donation awareness packets for your nonprofit organization or organ transplant fund raising event, please contact me to learn more and see how we can help. Your organization or fundraiser needs to be 503(C) compliant or not-for-profit. Although we’d love to give free awareness buttons to everyone, we only have limited quantities to give on a yearly basis. For that reason, the free organ donation awareness pins will be given out on a first come, first serve basis.

Just because we’ve already received our miracle organ transplant does not mean that we are giving up the fight for others. Let us know if we can help you or your organization.

The post Free Organ Donation Awareness Buttons appeared first on Angel Cove Transplant Blog.