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eric goberman
Member
Username: Ericg1950

Post Number: 130
Registered: 05-2006
Posted on Wednesday, August 12, 2009 - 11:40 pm:   Edit Post Delete Post Print Post

OK This may sound a little odd.. but bear with me. It seems all the press we get for donor and transplant is:

One someone exceptional gets a transplant (Steve Jobs, NBA star, TV celeb etc)

When someone with a transplant does something exceptional (at least in someone's mind.. transplant patients can't do these things, I guess)

Or, when someone dies like Tony in Ohio who had his transplant for 31 years.. or a young guy or gal who dies too soon after a transplant.

The world really needs to know about the other 99% of donors and transplant patients. We're boring, not newsworthy, we get our parts and go back and live life for whatever time we are allotted. Ya, know, that;s sorta a big deal

I am the FIRST to preach: "OK Ya got a transplant.. what have you done for me lately ?" But going to back to our lives and families and contributing to society is what getting a transplant is all about. You break a leg, you get a cast and 8 weeks later you go back to whatever. I don't hear news stories about broken legged people who decided to go run a marathon..but I'm sure they do.

It's really too bad and very sad to me not that Tony died but that his life wasn't celebrated WHILE he was alive. From what I can tell, he was just a 'mensch' .. a nice normal guy, living a good life, doing what we all do. How terribly ironic that he lived 31 years with a transplanted heart..and we only celebrate his death.
Ht tx 2/17/2005
Col Pres NYC
eccoblue
Member
Username: Eccoblue

Post Number: 924
Registered: 05-2008
Posted on Thursday, August 13, 2009 - 12:39 am:   Edit Post Delete Post Print Post

Eric,

It's not odd at all, it's human nature, the way we are. Like you said, it's just like breaking a leg or any other health ailment. People consider most transplants a common thing now and unless a celebrity gets a new organ or something out of the ordinary happens, it isn't newsworthy.

It is sadly ironic that someone like Tony was only celebrated upon his death, but I'm sure that wasn't true for his family and friends. I'm sure they celebrated his life, especially if he was a special kind of guy that I think he was.

How can people celebrate someone on a daily, weekly, monthly or yearly basis who have received the Gift of Life? Personally, I prefer to be celebrated for just being myself without being treated differently because of my transplants. This has nothing to do with being an advocate for the need for donor awareness. I will always speak out about the need to Donate Life to whoever will listen, but I still want to be treated as normal and not be doted on.

I do think people should be aware of transplantation as much as they are aware of cancer or aids or whatever. It seems as though transplantation does not have the same awareness as other illnesses have, except for the uncommon things already mentioned. That is why my dad and I hoped his book, Not So Brave, would do if it found enough readers, bring awareness to people who may not be interested in reading just "another" illness narrative by being in a novel form from a different style and perspective. Sorry for the shameless plug!

Anyway, this should turn out to be an interesting thread and I hope to see posts with everyone sharing their thoughts. Thank you for "just thinking!"

Love to all,
Kelli

Heart and Liver Tx at Cedars-Sinai on 02/01/2007
eccoblue@gmail.com
http://www.amazon.com/gp/product/1442127031
http://rjaunsen.blogspot.com/
http://www.trioweb.org/communications/BookReviewofNotSoBrave.pdf
Fall seven times, stand up eight - Japanese proverb
Behold, I have refined thee, but not with silver; I have chosen thee in the furnace of affliction. Isaiah 48:10
BreathinSteven
Member
Username: Breathinsteven

Post Number: 1697
Registered: 11-2004
Posted on Thursday, August 13, 2009 - 03:06 am:   Edit Post Delete Post Print Post

Hey Kelli...

When I was with you, I realized how young you are and it might have caught me a little off-guard. It caught me a little off-guard because I "know" you primarily through what you write... Now, when I see some of the things you write, your wisdom catches me off-guard because I know your youth... Your wisdom shows again in this comment...

Good question, Eric... There are a number of answers - but it's not about the answers, it needs to be about what we can do about this... We're a very small voice in a very large and loud world.

We're also given a gift that truly gives us more than life. It gives us an appreciation of life, and an understanding of just how precious it truly is -- the rank & file of the world may never have the appreciation we have... Which is why we look in awe at another day, another week, another year and everyone else just sees another day, week and year...

Love, Steve
Steve
CF, Dbl-Lung Recip April 2000
www.ClimbingForKari.org
www.ReviveHope.com

http://www.youtube.com/SteveFerkau
Jeff
Member
Username: Jeff

Post Number: 1972
Registered: 07-2007
Posted on Thursday, August 13, 2009 - 09:44 am:   Edit Post Delete Post Print Post

Eric, I think many of us tx recipients don't make a big deal about our tx's. Some of us just want to move on and go about our daily lives. That being said, I am never afraid to tell someone that I had a tx and that my little sister donated a kidney to me. If the subject of health, hospitalization, etc. comes up, I usually bring it up, but otherwise I don't go around telling every stranger I meet. I can't say that I knew Tony in Ohio, but I am guessing he did the same thing; he just moved forward without making a spectacle out of his ordeal. What I do like, is many of my friends are always asking about my health AND my sister's health. That makes me feel good to know that there are some out there that really do care about us and what we went through. For those that aren't familiar with transplantation, most that I have dealt with are amazed. I get the impression that they think I would be "sick looking" or unable to do most things. Looking at me, you would think I was a completely normal healthy person (if you knew me, you'd know I certainly am not normal...ha ha). Eric, there are many things we can do to spread the word of organ donation and to tell people that we can live relatively normal lives. Be it a letter to the editor of a local newspaper, a blog, calling in to a talk radio show, joining benefit walks, etc. Some are better than others at this, and I am sure that I could do more. There are 4 of us in my family that have received a tx, that should be more than enough motivation for me to get the word out and I try to when and where I can. Thanks for bringing this up.

Steve.....your comments about Kelli's maturity come as no surprise to me. I am sure you have noticed, but it seems to me that people that have lived with illness their whole lives, seem to grow up quicker and not take things for granted as much.
Jeff W.
Forum Leader-Kidney
Kidney tx from sister Patty, IU Med Center
email: unclemud@gmail.com
Indiana, USA
Happy2Bhere
Member
Username: Happy2bhere

Post Number: 2784
Registered: 02-2008
Posted on Thursday, August 13, 2009 - 11:44 am:   Edit Post Delete Post Print Post

Eric,
I don't fully understand your way of thinking. Tony Huesman gave back in a big way post transplant. Please go back and read his biography. Huesman founded the Huesman Heart Foundation and served as its president. The foundation seeks to reduce heart disease by educating children. Tony's sister, Linda Huesman Lamb, also suffered from the same illness and received a new heart in 1983. A Scholarship was started on her behalf.

The pair were America's first brother and sister heart transplant recipients. Mrs Huesman Lamb died in 1991 at age 29.
Tony was a wonderful advocate for our cause. He can be seen here, shortly after his heart transplant in 1978, just 10 short years after the very first heart transplant in South Africa by Dr Christiaan Bardard on Dec 3rd 1967.

These are just a few of his Children's books that he composed......

Tony Huesman's worldwide recognition is very well deserved.

We in the organ transplant community are the very best way of spreading the word about the wonders of transplantation. "Seeing is Believing !!" Please take the time to get involved any way you possibly can.

Ol' Bob
Texas Bob
http://www.cafepress.com/Happy2Bhere_2
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php
eccoblue
Member
Username: Eccoblue

Post Number: 925
Registered: 05-2008
Posted on Thursday, August 13, 2009 - 12:51 pm:   Edit Post Delete Post Print Post

Come on you guys! I'm a 25 year old, old lady. I will admit that I did grow up with adults as friends instead of kids my own age, but when it comes to things not about life or nature/animal related I am pretty dumb!! Saying I'm wise for my age catches me off guard!
Love,
Kelli

Heart and Liver Tx at Cedars-Sinai on 02/01/2007
eccoblue@gmail.com
http://www.amazon.com/gp/product/1442127031
http://rjaunsen.blogspot.com/
http://www.trioweb.org/communications/BookReviewofNotSoBrave.pdf
Fall seven times, stand up eight - Japanese proverb
Behold, I have refined thee, but not with silver; I have chosen thee in the furnace of affliction. Isaiah 48:10
Happy2Bhere
Member
Username: Happy2bhere

Post Number: 2786
Registered: 02-2008
Posted on Thursday, August 13, 2009 - 01:08 pm:   Edit Post Delete Post Print Post

Kelli, All I can reply to you, is that you are a very amazing young lady with a wonderful zest for life. Never change !!

We love ya'

Ol' Bob
Texas Bob
http://www.cafepress.com/Happy2Bhere_2
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php
eric goberman
Member
Username: Ericg1950

Post Number: 132
Registered: 05-2006
Posted on Thursday, August 13, 2009 - 01:25 pm:   Edit Post Delete Post Print Post

Let me apologize.. I, in no way, wish to diminish the contributions made by Tony or anyone else. They are beyond reproach ! If anything, I am genuinely envious of their far reaching effects.

What I am critical of, is the 'News'. I wonder if the press coverage of the 'stars' somehow makes others somewhat wary.

Do they they think,
my organs aren't good enough ?
only the stars get transplants ?
if i got a transplant, how could I possibly achieve "that" (whatever extraordinary event the transplant patient accomplished).

I guess what I'm saying is.. it's mainstream.. but is it ? It is to us, it is to our family and friends, and pretty much any stranger we can corner and shove a donor card in their face (we don't but sometimes I would love to !)

I don't wear my new heart on my sleeve (but I do wear an intriguing T-Shirt now and again !) And, Yes, I do talk to folks when it comes up.. especially about donor info.

Maybe I'm just impatient. Waiting for cloned organs, more donors, who knows what's next.. so that organ transplant / replacement is thought of as mainstream.

I had some surgery in May. It was major.. but it's done so often these days that it was more like an 'oh by the way' than an event.

It'll be great day when there's enough parts to go around and this becomes .. "oh by the way !!"
Ht tx 2/17/2005
Col Pres NYC
Meagan
Member
Username: Newheart14

Post Number: 202
Registered: 01-2009
Posted on Thursday, August 13, 2009 - 01:31 pm:   Edit Post Delete Post Print Post

Kelli,

I think what everyone is saying is that you have a wisdom at age 25 that it takes many adults an entire lifetime to achieve and even then some adults never achieve this.

You are very special and we all love you!

Hugs, Meagan :-)
Heart and Liver Transplant - February 14, 2008
Toronto General Hospital,
Toronto, Canada
Karen R.
Member
Username: Relivkaren

Post Number: 3387
Registered: 07-2007
Posted on Friday, August 14, 2009 - 01:30 am:   Edit Post Delete Post Print Post

Kelli:

I think you are an old, old, old lady!! Hee!! Hee!! Just kidding! You are INCREDIBLE!!! I am with Bob - Never change!!!

I also agree with Steve that you are wise beyond your years. You have the most loving, giving spirit that just knows what others need. It's as if you were born with wisdom. You have a beautiful gift and you use it so well.

Lots of love!

Sorry - off topic, but I couldn't help it!! :-)

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Listed Feb 2008 - Waiting on double lung transplant at Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Happy2Bhere
Member
Username: Happy2bhere

Post Number: 2790
Registered: 02-2008
Posted on Friday, August 14, 2009 - 01:28 pm:   Edit Post Delete Post Print Post

Kelli,
This clip reminds me of your bright cheerful personality.
http://upchucky.com/flash-be-happy.html

Ol' Bob
Texas Bob
http://www.cafepress.com/Happy2Bhere_2
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php
Meagan
Member
Username: Newheart14

Post Number: 204
Registered: 01-2009
Posted on Friday, August 14, 2009 - 02:12 pm:   Edit Post Delete Post Print Post

Bob,

I love this site!

My little granddaughter Alyssa is in love with the "yellow people", her name for smileys. So every day I write her a story with moving "yellow" people in them and e-mail them to her. This site will give me lots of ideas. I sent her this one - she will love it!

I love the one with smiley's backside but I am not sending that one to Alyssa but I have sent it to everyone else I know and even posted it on my Facebook page.

Sorry if I have gone off track and messed up this thread.
Heart and Liver Transplant - February 14, 2008
Toronto General Hospital,
Toronto, Canada
eccoblue
Member
Username: Eccoblue

Post Number: 926
Registered: 05-2008
Posted on Friday, August 14, 2009 - 03:07 pm:   Edit Post Delete Post Print Post

Awww, you guys are so sweet! I love you all to pieces!!! I want to hug everyone!

Our problems don't stand a chance against laughter.


Heart and Liver Tx at Cedars-Sinai on 02/01/2007
eccoblue@gmail.com
http://www.amazon.com/gp/product/1442127031
http://rjaunsen.blogspot.com/
http://www.trioweb.org/communications/BookReviewofNotSoBrave.pdf
Fall seven times, stand up eight - Japanese proverb
Behold, I have refined thee, but not with silver; I have chosen thee in the furnace of affliction. Isaiah 48:10
eric goberman
Member
Username: Ericg1950

Post Number: 133
Registered: 05-2006
Posted on Friday, August 14, 2009 - 03:15 pm:   Edit Post Delete Post Print Post

My mistake, I started this post in order to get some of the more subtle goings on in my mind out. I was hoping to see how others felt about our status and future. The hijacking of the blog shows me the errors of my ways.

I will stick to less serious questions, hi's, bye's and "we;ll pray for you" s or simply not post at all.
Ht tx 2/17/2005
Col Pres NYC
Jeff
Member
Username: Jeff

Post Number: 1978
Registered: 07-2007
Posted on Friday, August 14, 2009 - 04:21 pm:   Edit Post Delete Post Print Post

Eric, I don't think anyone's intent was to "hijack" this blog. I think we are just pointing out that as everyday, average citizens we CAN live our lives post transplant, and also promote the importance of organ donation.

You are right about one thing for sure, many of us normal, average, everyday citizens don't draw the press as a Steve Jobs, Alonzo Mourning or Natalie Cole do. I don't know if that is our fault, or not spicy enough for the media to want to report it. I do know that the Indianapolis Star had a great article on an average citizen receiving a transplant not too long ago. Many of us also do a great many things post transplant, but don't seek out the media to let everyone know....perhaps that's just being humble.

I would hope that you would continue to contribute to this website and continue to blog. There have been many serious discussions throughout the years here, and yes, sometimes we do get off topic, but many of us like to have a bit of fun at times too. If you want to start a new topic for discussion or just have some random thoughts, please continue to do so.....we are all here to help and support each other. All the best to you!
Jeff W.
Forum Leader-Kidney
Kidney tx from sister Patty, IU Med Center
email: unclemud@gmail.com
Indiana, USA
Karen R.
Member
Username: Relivkaren

Post Number: 3390
Registered: 07-2007
Posted on Friday, August 14, 2009 - 05:35 pm:   Edit Post Delete Post Print Post

Eric:

I am sorry. I contributed to the "off topic" chaos. I do hope you continue to post. Your thoughts and opinions do matter to all of us. With that being said, you also have to allow those of us that aren't at a place in our lives to be thinking that deep to have our say too.

I am pre-transplant. I am holding on to every day of my life waiting for that precious "Call" to give me my second chance on life. I do celebrate each day. I do that by smiling, laughing, loving, and being a part of this great group. The hi's, bye's, we'll pray for you are important to me. Your thoughts are important to me. I didn't mean any disrespect by going off topic. I just wanted to have a little fun.

So...to post in a more serious way. I think that Tony was celebrated every day of his life. I think you are celebrated everyday of your life. I think all transplants recipients, donors, donor families, people with cancer, people with mental illness, people that have no health problems, and so on are celebrated everyday. They are celebrated by those that love them. Most people don't need the media to tell them that they are important. I agree that some do, but 99% of the people out there just need someone to love them. That's a huge celebration in my book. One day I will have the incredible experience of being a recipient of the precious gift of life. I don't know how I will feel for sure, but I have a pretty good idea that the first thing I am going to want to do is be with my family and friends - the people that I love and love me. I will never care if I am ever on TV or in a newspaper or magazine. I will carry on with my life just like you mentioned, but there will be changes. I will speak out about organ donation. I do that already. I will be a part of something bigger than myself and I will do everything I can to promote the giving of life to others.

I hope you continue to post. Those of us that got off topic were not trying to make you mad or make you go away. We just got a little silly. We can't help it. Life can be silly and it can be messy and chaotic. Life can be anything you want it to be - you just have to get out there and enjoy the ride.

God Bless!
Karen
Dx: BOOP - May 2006. Rediagnosed with Bronchiolitis Obliterans Nov. 2006
Listed Feb 2008 - Waiting on double lung transplant at Cleveland Clinic

Ohio, USA

Be kinder than necessary because everyone you meet is fighting some kind of battle.
Meagan
Member
Username: Newheart14

Post Number: 205
Registered: 01-2009
Posted on Friday, August 14, 2009 - 09:02 pm:   Edit Post Delete Post Print Post

Eric,

I am also guilty of going off topic and I apologize. I have a terrible habit of talking too much especially when it comes to my granddaughter but she is my favourite topic and visualizing her sweetness got me through some tough times.

Regarding your original topic:

As far as press coverage goes, I had a rare type of transplant, as did Kelli and Moonchild. I was the first and only person to have that type of transplant done at TGH. People kept saying to me that it would hit the news especially since it was done on Valentine's Day. What a headline that would have been "A new heart on Heart Day". However, I am very happy that it stayed quiet and did not hit the news. I would not have wanted to be in the public eye in that way, or have people lining up on my front lawn. In fact, I was so afraid that it would hit the news I even had nightmares that people were coming into the ICU and shooting pictures of me and posting them over the internet. I think the powerful drugs did a number on me to cause such "hallucinations".

Like Karen said, we are celebrated every day by the people we know. My family who mean the world to me, are so grateful I am alive, they still can't stop talking about my unique transplant.

I do my best to promote organ donor awareness in my own way, but I do it in my own quiet way. I do not want to become famous because of my transplant. I want people to sign their organ donor cards, and I want to tell every donor family out there how grateful I am for their selflessness and generosity during the terrible grief they had to endure in order to make that tough decision to donate the gift of life.

I am sorry if I appeared to be flippant. I do apologize again. I guess this thread was like a conversation between many people and it veered off course.
Heart and Liver Transplant - February 14, 2008
Toronto General Hospital,
Toronto, Canada
Happy2Bhere
Member
Username: Happy2bhere

Post Number: 2794
Registered: 02-2008
Posted on Saturday, August 15, 2009 - 12:10 am:   Edit Post Delete Post Print Post

I have nothing to apologize for. This thread kinda' veered off the normal path but continued with some very interesting comments about the original topic that Eric posted. It helped to keep this thread alive to veer off course for awhile.

Eric, you pointed out some very interesting topics for all of us to consider. I too think famous celebrities receive special attention post organ transplant but that's just the law of the jungle and the way the cookie crumbles, like it or not.

God Bless

Ol' Bob
Texas Bob
http://www.cafepress.com/Happy2Bhere_2
Heart Transplant
performed Jan 28th 1991
http://www.heartandcoeur.com/story/bob_story.php

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