Cinco De Mayo !!!!!

This day six years ago was one of the luckiest days of my life!

You see, on May 5, 2005 yep, 05/05/05  ( gotta be lucky) I received my kidney transplant.. To make it more coincidental my surgeons name was Dr. Foley! Those of you not around medical issues probably wouldn't understand the humor.The relation of Dr. Foley and "foley catheters " was not lost on me.

********** So ..... today I am 6 years old **********

I get to run, play , jump on the bed to my hearts content1 I'm a kid again!!!!

But none of this would be possible without the gracious Gift of Life from my donor Susie Paxton.  There were a myriad of coincidences that year.. My Donor Dad had removed dear Susie from life support on her birthday May 3,2005- and graciously gave me a true Gift on May 5, 2005. I lost my Daddy on June 3, 2005 and he was 30 days from his birthday on July 3,2005.  I wrote an anonymous letter to my donor family one year later and through a few letters I finally spoke with Ron Paxton who I now call  my Donor Dad.

Life throws us many curve balls, but it is true that when one door closes a window opens..  I discovered that Susie and me had many similarities with very different outcomes. I owe her and Donor Dad my life. For you see if not for the kidney transplant eventually the lung transplant and the rest of my health would have gone into a steady decline.

If you have a moment, please visit my "honor page"  and meet Susie... She is a true gift to all !

Cinco de Mayo-God Bless Susie

Yes I know I'm a day late. I have a great excuse believe me. I was celebrating the wonders of organ donation and how one person can change a life.
It was on May 3, 2005, that my Donor Dad, Ron Paxton had to make the most heart-wrenching decision of his life. He chose to remove his lovely and only daughter Susie from life support and donate her organs.
     May 3rd was also her birthday.....
I received one of Susie's kidneys on May 5th. 05-05-05 to be exact. While I celebrate  one of the best days of my life, my Donor Dad is quietly grieving over the loss of his loving daughter. Through letters and phone calls, we have discovered Susie & me had many parallels in our lives.
       We were six months apart in age.
        We both had serious heart problems as infants-Susies' was found early -mine was not. Regrettably during surgery the heart lung machine malfunctioned and she remained "Daddy's Little Girl" her entire life.
       Susie's Mother had lung issues that would have required a lung transplant had she chosen to.-I've had 2 lung transplants.
        Susie was an athlete and ran in the Special Olympics- I competed in Track & Field at the U.S. Transplant Games.

It is said, When God closes a door -He opens a window. 
        Donor Dad lost his little girl May 3rd
        I lost my Daddy on June 3rd and his birthday would have been July 3rd
I still miss my daddy every second of the day, but through the miracle of organ transplantation I am Blessed with one great Donor Dad.

Susie will forever be honored with the pendant I designed above. The "sisters" cameo is designed in the pocketbook style of wrapping, and the Swarovski crystals are in our birthstones. The left side is one emerald for Susie, while the right  side holds one rose as well as one emerald crystal signifying what she gave to me.

I worry over my Donor Dad each year on the 3rd of May and say a few extra prayers for him and Susie.
I celebrate her life and the life the two of them gave me on the 5th of May.

Happy Cinco de Mayo everyone!!

      

National Organ Donor Awareness Month

April is our month. Our nationally recognized month to promote organ donation/transplantation. Our one time to go above and beyond to make sure those who are still "waiting and dying" for a life saving organ get the chance we've had.  Or in my case the "many chances" I've had.
       I recently posted this on my Facebook page, Bette Luksha-Gammell wants to know. If you could go back to a crossroad in your life, would you go or would you take the same path knowing the outcome?
I posted this mainly to see what the responses would be. As I suspected the replying comments were from friends in the transplant community.  We all,  candidates & recipients have a common mental bond with this question. We seem to immediately apply questions such as this to the desicions we made on our health. The meaning in effect is that transplantation is our life. Our one true goal is to live. Not just to survive, but to Live.
        Along with this goal is the obligation to spread the word about organ donation. We must give back. Someone was spreading the word while we lay too sick to do so. They helped us to survive long enough to Live. Now, we must all join the fight to make sure those waiting get their chance at Life as well.
It is necessary to dispel the negative rumors still in circualtion regarding organ donation.
       As I write this, the current total for those waiting has hit 106,886! 
The total number of transplants in January 2010 was a mere 2,198.  Is it any wonder so many "die waiting"?
I could have been in this category three times. Yet, I was Blessed with a perfect match each and every time. Like many of you, transplantation changed my thought processes, my ideals and goals. At the age of 31 I could actually dream of a future. I got this wonderful spring in my step, this joy for life. The simple things that meant so much before, well their meaning has reached astronomical proportions. Facing death, a person learns what is important and to never take anything or anyone for granted.
Live like you were dying. We know the true depth of this statement. Enjoy and cherish each and every memory -good, bad and otherwise. For you might not have been here to even endure them.
     

      But most importantly-GIVE BACK. PAY IT FORWARD.. Give someone the chance to experience all the obstacles this life has to offer.  Promote organ donation/transplantation.  Sign an organ donor card and tell your family. One day you may wake to find a loved one needs that life saving donation. Please don't wait until that time to sign that card. Do it now... You won't regret it.

Share your life....... Share your decision.... Recycle yourself......

You never know where your Gift of Life may come from

http://abcnews.go.com/GMA/supermarket-customer-donates-kidney-favorite-cashier/story?id=10278738


This link takes you to the most wonderful story.  What an Easter surprise to hear of such unslefish giving this morning... Another life saved through organ donation..

Email from a good friend Tonya

Below is a copy of an email I received from a good friend. Please pray for this family as they send a loved one on to save others:



this is from another board I belong to...


I have copied it over to here for our family to call prayers up for the family..





Two of my nephew's very good friends and wrestling buddies were in a horrific traffic accident this past Tuesday. I did not post then as it seemed neither would survive but both are still clinging to life. The boys are brothers Will (17) and Cordell (15) last name are kept private per parents request.

Cordell has been on life support since the accident and the doctors were looking to take him off but the father felt his hand move and thought it very deliberate by the third time, most doubt it was anything but involuntary but we are still praying for a miracle.

Will came out of his coma but his reaction was so traumatic and his pain so great the doctors had to put him back into a medically induced coma.

This is a wrestling photo I have with my nephew in the front, Will is directly behind him, and Cordell is to the right.

The family is in a state that I cannot begin to describe (as well as us as friends) so all prayers to God our father for healing, comfort and peace will be greatly appreciated.

Thank you~ Penny

Cordell (the young man on the right) was taken of life support and has passed.



The family wanted to let others know that Cordell will go on to save others specifically, an 11 year old boy will be receiving his heart, a 38 year old man his lungs, and an infant part of his intestines. The doctors say that he could save 100 lives.

Dogs, Days, & Possible Depression?

You may not be aware but I moderate the comments that come through this blog. I moderate mainly because I  do not want any profane items showing up.
  That being said, yesterday I had comments to moderate for my previous blog "Today's gonna be a great day". I opened the comments and was unsure of how to respond or if I should.  The comment left was:
"Every dog has it's day", and this bothered me. I've thought quite a bit about my reaction and others if they had read them.  My Prednisone fogged brain immediately saw the negative. Thoughts that ran through my head were: What! Are you jealous?, How dare you?. The more I thought about it, the more I wanted to contact the person leaving the comments and ask if they would explain why they would leave such a comment.
     I've discussed this with a good friend and his response was the positive side. Yeah every dog has his day and you finally get to enjoy yours! I somewhat agreed, but why post it that way? Congratulations of a Gift of Life would sound more apporpriate.  During our discussion I had the epiphany that possibly this person was depressed, maybe waiting for a transplant. I explained my reasoning as this person was reaching out for a shoulder or someone to listen and say, I've been there too. Thus the true meaning behind my blog.
     First let me remind everyone reading, that the sole purpose of my blog is outreach. To  help the healthy understand what we endure in our quest for survival , but more importantly to be there for those candidates and recipients who need to hear it's ok to feel this way.  Please don't misunderstand  that because I sound positive now, this does not mean it's been a perfect day at the beach the last 20 years of my life.
It has not, by no means.  But and I state this emphatically, I have been there, I have conquered whatever  the medical field has managed to throw at me, and I am still positive and ready to tell everyone about it.
     So I would like to close by letting this person know that even though you left the comments, I hope you can let me know you are OK. More importantly if you need someone to listen while you let all the anguish out, I am here. If not me, I will happily put you in touch with others like me who care.

Morning is starting out great

I wanted to check my stores and email before getting ready for the Medieval Faire.
Well Comcast requested I change my port for my emails which caused ALL my messages to be sent to
Windows Mail. I like ONE email provider, not juggling 2.
Comcast assured me my messages would stay in Comcast.Not.
After sifting through them all I found one exciting email.
It was from a very nice Etsy artist telling me she had included my earrings in an Etsy Awareness Treasury!
I am psyched.
This is my first ever Treasury on Etsy, so my day went from frustrated to cloud Nine!

If you have a moment, please visit the Treasury and post a comment on the wonderful work all the artists have done. Awareness is for us all.

BTW...My design is the Sterling Silver Organ Donor Awareness Ribbon Earrings.

http://www.etsy.com/treasury_list.php?room_id=108005

You may need an Etsy account to post comments, it's free. If you prefer not to open one, viewing means alot too.

Thanks

Thoroughly disgusted with CBS

I just received this in an email from DonateLife Hollywood...


Can a single TV show actually save lives? "Three Rivers," a CBS prime-time series on donation and transplantation, did. Sadly, that remarkable fact was not enough to save itself.




As the donation and transplantation community mourns the premature shelving of "Three Rivers," we stand in awe of its achievements. A month ago, a San Antonio, Texas, family donated the corneas of a loved one who had passed away. They said yes because they wanted their family member to help others, just like on "Three Rivers."



Two weeks later, a family on the East Coast donated the organs of their teenage daughter because she had talked to them about donation after watching "Three Rivers" on a Sunday night.



On Thanksgiving weekend, a daughter in Louisiana gave consent for her mother to save three lives. She too was a fan of "Three Rivers," and the coordinator was impressed by how much the family knew about the donation process from watching the show.



For years, the organ and tissue donation community held its breath every time donation was used as a television storyline. Inaccurate and horrific scenarios about black markets and stolen organs made us initiate letter-writing campaigns; even worse, research showed it kept viewers from signing up to be donors.



Finally, one show got it right. "Three Rivers" viewers got something extra with their nightly fare of drama: They had a chance to learn the truth about donation and were challenged to talk about a topic families rarely wish to discuss - death and their wishes at end of life.


Please, take a moment and let CBS know what you think of this illogical decision to cut Three Rivers TV show.

Being thankful

As we go into Thanksgiving here in the U.S. I always think back to all I am thankful for.
Please take a moment in your busy holiday, look around at all the happiness, trials, and family,friends in your life. In one way or another you are BLESSED.
  I've spent a few Thanksgivings and other holidays in the hospital. If you're a candidate or a recipient you can relate to this. We don't like it, but it is a fact of our lives either way. We learn to grin and bear it so to speak.
If you are a transplant candidate:
 Be thankful there is medical technology offering you the possibility of a new life.
 Be thankful we have surgeons, physicians, and coordinators who have the knowledge and caring to learn more and help you achieve your dreams through transplantation.
 Be thankful there are families who love life enough to donate in their time of extreme loss.
 Be thankful there are organizations out there promoting organ donation and helping you receive your new chance.
Be thankful there are recipients to boost you up, keep you hoping, and helping you along the way. If they did it, you can too.
 Most of all, be thankful we have a  higher power, who  will listen calmly, without interrupting, let you cry your eyes out until you are exhausted. Then lift you up so you can continue your fight for survival.

If you are a recipient:
Be thankful for all the above, and NEVER forget what it took to get where you are.
Never lose sight of the most precious life you've been granted.
Remember your donor/s and their families. You are here celebrating another holiday thanks to them, while they have an empty seat at the Thanksgiving table.
Be thankful for EVERYTHING, good, bad, and otherwise. If not for the miracle of transplantation, you would not be around to enjoy any of lifes ups and downs.
Make a solemn vow to promote organ donation to at least one person a week. Remember someone was promoting transplantation when we were waiting. It's only fair to take care of those waiting behind us.


As everyone looks around the Thanksgiving table tomorrow, be thankful you are here.
Thanks to a donor, a donor family, a transplant center, your doctor and the wonderful coordintaors who keep us positive.

Have a Blessed and wonderful Thanksgiving everyone. Be safe, be positive.

A Blessed Weekend

   Well we are in the last day of National Donor Sabbath Weekend. I am also celebrating 7 years with my second lung transplant today. It was 7 years ago on a Friday morning when  my call came in. I had just returned from a trip to Shands in Gainesville and discussed my Advanced Directive, knowing I had minimal time left to live. The phone rang in the middle of the night.  You always get an ominous feeling when the phone rings at night. Something has happened, or a loved one is sick. 
     Somehow I knew this was my call. I was the one sick, but with Gods' blessing and Shands hospital this might change. I remember waking my parents who were visiting at the time and everyone seemed to launch into hyper-drive. Everyone that is, except me. I didn't have the energy, stamina or strength to try. As I watched my parents rush around to get ready for the 2.5 hour drive I began to have doubts. I knew my physical strength was gone, it'd been the longest 2 years of my life, and I wasn't sure I would make the surgery. I also didn't want to waste a precious lung on someone who might not make it, when the lung could go to someone with a better chance than me. As Mom came in to give me a hug (somehow she knew I was having doubts), I asked her if she thought I could make it. This was probably the first time but most definitely the last time my parents would see my resolve falter. I remember she looked at me with all the love in her eyes and said " You can make it through anything, you're strong".  Of course she'd say this, after all she's a mother. But , she was referring to my mental strength, while I was worried about my physical strength.
    I'd been through this before, but this time my endurance was nowhere near what it was in 1991. Chronic rejection is much worse than Pulmonary Hypertension could ever be. Chronic rejection  is tough to endure. It was the biggest test of life I have ever had to endure, and pray to never endure again. Though I know I will endure it at some point. I hope to make it as far in the future as humanly possible.
     While I was questioning myself, I remembered it was the start of National Donor Sabbath Weekend. Surely, this is a sign that this transplant was meant to be. With all my doubts I had to at least give it my best shot at success. So off to Gainesville we band of merry men started.
     The holding area was a beehive of activity. I was introduced to my surgeon Dr. Staples. Yes, this is his real name. I made the off the wall comment, " and you use staples right?" This was my way of releiving some tension. I then met his wife, so I now had Staples & Staples MD... Sounds kinda cool huh?  It was during the wait process I discovered he was concerned with doing my transplant because I had lost down to 90lbs.! Wow, and my scale said I was at 100 lbs. it had been difficult to keep weight on at this point, since I was using all my calories to breathe. I had long ago consciously made the choice between eating or breathing. breathing was mandatory- eating optional. Thankfully the decision was to go ahead with the transplant.
    So today, as they say 7 years later- the rest is history.

Remember : Be a Miracle in someone's life, Become an organ or tissue donor.

This weekend

Today  November 13-15,2009 begins National Donor Sabbath Weekend. Being a 3-time transplant recipient. All my online stores & the Christmas Bazaar at the Cultural Center will offer 10% donation of all sales Friday & Sunday, 100% on Saturday will be donated to The Florida Foundation for Lung Transplant Research. Please spread the word and join me in honoring my 3 organ donors and their families.

Surprises our spouses do.

I got a phone call at 7:30AM Wednesday morning from Eric of the Herald Tribune.
My wonderful husband called and told them my story and how I'd be celebrating a half century on Sunday.
We set up an interivew time of 10:00. OMG!!! I taught class Tuesday night , the house was a wreck, and I was just making breakfast.
I finished breakfast, did dishes,  swept and mopped floors, showered, and walked the boys. I was just walking from the back yard when he arrived at 10:00. Talk about a whirlwind.

This is one of the best weekends of my life. Friday I celebrate 18 years with the first lung transplant and Sunday I flash forward to the big 5-0..
Yes I'm damned proud of each and every grey hair and wrinkle. I've earned them many times over!

Below is the article from the Trib..

Have a great day






Ernst: One living reason to donate your organs




By Eric Ernst





Published: Friday, October 23, 2009 at 1:00 a.m.

Last Modified: Thursday, October 22, 2009 at 6:26 p.m.

When she was 18 and undergoing a Navy physical, Bette Luksha-Gammell got the shock of her life.



"You'll never have children, and I'm surprised you're still walking," a doctor said. He later told her parents she probably wouldn't live past 20.



Unknown to her, Gammell had pulmonary hypertension, and her lungs and parts of her heart were three times normal size.



Following that news, a gradual decline left Gammell hooked to an oxygen tank for too much of her days.



Eighteen years ago, doctors transplanted two lungs into Gammell and sewed up a hole in her heart. In 2000, after her body rejected those organs, she received a single lung transplant in 2002. Then, about four years ago, she received a transplanted kidney after hers was damaged by the medicines she took for her lungs.



She now lives in North Port with her husband, Larry. On Sunday, she'll celebrate her 50th birthday.



Gammell may have lived a life of struggle and pain, but she doesn't ask, "Why me?"



"Never question God," she says. "You might not like the answer."



Instead of wallowing in self-pity, Gammell adjusted her goals and went to work for Disney cruise lines and as a baggage handler (no kidding) for Continental Airlines.



"I'm one of those people, I have to be doing something. I can't sit at home and collect a check every month," she says. "I'd love to be back at work, but I know the risk I take."



Gammell settles for teaching a wire jewelry class at the Cultural Center of Charlotte County.



She's also an advocate and ambassador for organ transplants. At Disney, she started a support group called Second Chance. She records her daily struggles at www.survivinganorgantransplant.blogspot.com. She writes letters with suggestions for Medicare reform.



And she has traveled across the country to talk with potential recipients filled with doubts, fears and conflicting emotions.



At 9 p.m. Sundays, she watches a new CBS television series, "Three Rivers," which follows the lives of organ donors, recipients and surgeons at a fictitious hospital in Pittsburgh.



Gammell calls the show the first national platform for organ donations.



"It certainly starts a conversation," says Jennifer Krause, public affairs manager for LifeLink Foundation.



The foundation, which arranges organ donations from Tampa Bay through Fort Myers, reported 584 transplants in its coverage area last year. Another 437 donors provided tissue for such uses as bone grafts and heart valves.



Gammell sees donors as the real heroes. "I try to do something, each day, to honor donor families," she says. "At the most grief-filled time of their lives, they gave up someone they loved to give life to someone that someone else loves."



To recipients and donors, she offers, by her own example, a simple creed: "You have all these issues, but you have to stay positive. Being positive keeps you alive, whether you've had a transplant or you're healthy."



To become an organ donor, register online at www.donatelifeflorida.org.





Eric Ernst's column runs Wednesdays, Fridays and Sundays. Contact him at eric.ernst@heraldtribune



.com or (941) 486-3073.

Three Rivers Impact

A good friend of mine forwarded a newspaper article to me a few days ago. The article was a journalist making a brave attempt at tearing down the new CBS show "Three Rivers".
In her article she states that she thought the Dr's in the show looked overworked and constantly on the run, so she decided to ask a few friends of hers if this were true. She actually asked 2 yeah ONLY 2 friends in the transplant field. So this makes her an expert on the importance of promoting organ donation? Much less gives her the authority to criticize a much needed series, that shows what these medical professionals really do to save lives? Oh yeah, and what about those of us who've lived through it? Are dying as I write this hoping for a life saving transplant!
I have steamed over this article for the last 2 days, and wanted to post a link here for you to read. However, if I do post a link it only gives her more readership and credibility, and I apologize that I refuse to do.
If you've had a transplant or are waiting you know first hand how hard our teams work for us. I've witnessed it 3 times now.
I remember waking up in ICU after my first bi-lateral lung transplant in Pittsburgh. It seemed that everyday my surgeon was wheeling in another patient fresh from a transplant. My first words to him after I was extubated(removed from the dreaded respirator) were, "I thank God I was your first in all this". Yes he looked exhausted, yes he needed a shave, but his exhaustion was one of reward. He saved lives.
My 2nd lung transplant, I remember asking Dr. Baz (Shands Gainesville, FL) to please take a day off! The day he came to see me in jeans and a pullover sweater, I knew it was his day off and told him to get out and relax!
These teams take people like me, dying, oxygen sats of 48%. blue fingers, blue circles under my eyes, and make us whole again. I was given a life I never dreamed could happen to me, thanks to my overworked (yes they are), under appreciated, surgeon, physician, coordinator, and nurses on the transplant team. And you know the best part?
THEY STILL CONTINUE TO DO IT!


This journalist, instead of dissing a new show could have made a higher impact by promoting the "message" of the show. Organ transplantation/donation does not have the platform of Breast cancer awareness, diabetes, heart disease. I'm not trying to demean these in anyway. Thank goodness they do have a platform, however we 2-nd timers would like a platform too, to save those waiting.
Only by promoting the meaning of Three Rivers can the message get out and help ease pain and grieving for donor families (they are finally honored for the heroes they are), and those waiting (we can give them hope to keep going), and us recipients (it's up to us to carry that torch to make sure the candidates get that chance too). Too many shows put little tidbits in a story line about transplantation with no follow through. What happens to the recipient later? What about the struggles to pay for meds? And heaven forbid, what if they get sick! How to afford that with our wonderful Medicare system, or private insurance?
Plus, the pitfalls of going back to work. That's a story in itself.
Here we have a show with follow through...... It's about us, for us, and we can relate to it. No tidbits, just solid promotion.

If she had checked further this journalist would have found a wonderful story to tell. How CBS partnered with DonateLife Hollywood to make the stories as real as possible (we know there has to be drama). Also how Alex O'Loughlin became a DonateLife spokesperson because the cause is so great. This is the line she should have taken. Then she would have made a great journalist, not just mediocre.

My reply to my friend Merv (he has a transplant blog too, check him out) MervSheppard.blogspot.com, "And she thinks she's an expert on transplantation? I'm still spreading the word to watch the show, give it great ratings and keep it on the air! We'll show her!"

Jerry Dinnan

This morning I want to tell you about Jerry. I never got the chance to know him other than the volunteer work we did together at LifeLink, but that doesn't matter. You see, there is a special "kin-ship" between recipients and candidates for an organ transplant.

When I first met Jerry a few years ago we had volunteered to promote donor awareness in Sarasota. We both arrived wearing the same color Lifelink polo shirts and khaki pants as if we'd planned it. As the day progressed we discovered we lived a block away from each other! He was the light shining on the health fair. We joked, talked to others about becoming an organ donor, and wanted to hug all those who said they were already a donor.

The next time I saw Jerry was at a Donor Service of Remembrance held each November at the church he attends. Lifelink brought in donor families from the past/previous years for the donor and their families to be honored. It was at this service I realized deep inside how much I needed to thank a donor family and help some of these families understand how thankful all recipients are for what they have sacrificed.

This blog has taken me a few days to put together. Mainly because as a recipient I and many like me view all candidates & recipients as "family". We have scars, take the same meds, have the same side effects, etc. BUT mos of all we *strive to thrive* with all the daily obstacles, the medical obstacles, and honor our gift of life. When I hear of a candidate of recipient passing away, I not only grieve for the loss of their life and for their family. I grieve because a part of me goes with them. I know the daily struggle and strength each and everyone of us puts forth each second of every day to prove transplantation works. The loss is double. I've lost a friend, extended family member, and fellow kinsman who understands my thoughts without having to explain the medical aspects in detail. Or from the beginning.

Here is part of an email from Lifelink regarding Jerry.
You'll see why he is sorely missed.
I am very sad to inform you that LifeLink volunteer, Jerry Dinnan passed away last Thursday morning. For those of you who knew him you may recall, Jerry was a heart transplant recipient of nine years, was a passionate advocate for organ and tissue donation which few could rival. He was an active LifeLink volunteer, and led the good work of a support group - Transplant Recipients of Southwest Florida – in Ft. Myers. Jerry never turned down a chance to spread the important message of donation – and he touched countless lives by participating in every opportunity presented, including high school presentations, media interviews and other speaking opportunities.
Jerry was incredibly grateful for the gift of life he had been given by an organ donor, and he carried wonderful thoughts of his donor and donor family with him always. As a result, Jerry felt one of his most important roles was as facilitator of LifeLink Services of Remembrance, speaking from his heart to families from throughout West and Southwest Florida whose loved ones had become organ or tissue donors.
Even with his many responsibilities to the transplant community, Jerry found time to be an active member of his local church and a Hospice volunteer, ministering to families and individuals facing end of life issues. Jerry was a beloved husband to his wife, Debbie, for many years, and leaves behind four children, several grandchildren and many friends, who will all miss him dearly.

If you find a few spare minutes this Saturday morning (his services) please look up, smile and say hello to Jerry. He's earned his wings over and over...