22 Years Ago Today

Looking back it's hard to believe it's been 22 years !

The time was 12:08 AM and I was called to the phone. I heard a familiar voice ask, "How would you like to go out of town?"  My reply was well I am actually, I'm going to St Augustine for a few days to regenerate.
"NO, I mean how would you like to come   north, to Pittsburgh?"
Oh my Goodness ! My world stopped turning, I looked at my Mom and mouthed "transplant".

I called the Air Ambulance and started repacking my clothes. The Air Ambulance company called to say a plane would arrive in 4 hours. This will not do ! I had a 4 hour window to before the lungs could no longer be used ! They were paid extra to have a plane waiting in Alabama, but they were sending one from Texas. He assured me the the pilots would be in the air soon. Having worked dispatch for a major carrier, I knew this was not true.. I quickly advised him:  1. The pilots have to get there . 2. They have to do a pre-flight check and get fuel. 3. Check the weather  4. It was a 3 hour flight from Texas to Florida  AND 5. Another 2 hour flight to Pittsburgh.

Thoroughly disappointed I called my Coordinator back and told him the news. He said not to worry, UPMC had a small jet that had just cleared customs and was in Tampa. It was coming to get me. !!!  YAY!!!!
When I called the Air Ambulance back, he was angry. "What is the tail number?"  You don't need that information. "When is it arriving?"  Sooner than you can !  All red flags to me at the time. Little did I know those red flags would soon show themselves for the mean spirited creatures they were.

We went to the FBO  (fixed base operator) area of the airport. This is where private planes arrive. As we were sitting there, 3 customs officials strolled in. Red Flag alert !  I whispered "They better not be after my plane !" My plane was taxiin up and they walked outside. They received an anonymous tip that this plane had never cleared customs !  I was right ! The Doctor onboard as well as the pilot tried many times to explain the importance of getting off the ground NOW ! No -go , these idiots were playing with my life !  They would not release the plane until all the medical equipment was broken down and inspected for contraband.. Let's be serious !!  The Dr. offered to let one of them fly to Pittsburgh with us, and then take it all apart,and they would fly him back home. I needed those machines to live during the flight.. "NOPE"

I'd had enough. I asked for a quarter. "I'm calling the local news. It's a matter of life and death and this time it happens to be mine !"  I called the local station, told a brief story of what customs was attempting. I also stated that if I did not make this lung transplant my death would be on their heads !  It was no more than 5 minutes later I heard a supervisor over the radio " Who the hell called the news!" The officials looked at me and I smiled prettily and help up the phone receiver :)  "Get that damned plane out of here !"

And that my friends is how my new life began...  I came out fighting and still fight !!

October 22,1991

      It was on this day, 20 years ago I received a call that changed my life forever.

     The time was 11:00 PM. While not usually a night owl, I was awake. I was packing clothes for a much anticipated weekend trip to Orlando. Arrangements had already been made to have oxygen waiting at the hotel. I had been waiting for a lung transplant for 18 months.  Each passing day reminded me I was on borrowed time, after being given  12 months to live. I desperately needed time away from reality for awhile. Each day feeling myself get weaker and requiring more oxygen.

     I remember Mom calling me to the phone. It was my pre-transplant coordinator asking how I was feeling and if I wanted to make an out of town trip. My standard reply was, of course I'm leaving for Orlando. "Wouldn't you rather come to Pittsburgh?" " We have a pair of lungs for you." It was at this point I wanted to hope, drop to my knees and pray, but I knew to not get excited. I could get all the way there and it be a dry run. Meaning the lungs weren't viable after they got in to get them out of the donor.
     After hanging up the phone, I immediately called the Air Ambulance that was supposed to be on standby in Alabama only to find it was not in Alabama but in Texas. This simply would not do. After the pilots got in- the plane fueled and preflight done- the flight alone would be close to 2 -2 1/2 hours. This would put me over the time frame to receive a transplant. I only had a window of 4 hours to get the Pittsburgh, and be sitting for the go ahead from the retrieval team.  Thankfully UPMC had a plane sitting in Tampa that had just returned from taking a recipient back home. I called the original company to cancel and began to get suspicious, he did not need to know where my aircraft was coming from nor did he need the tail number of the plane.
        We arrived at the FBO ( private flight area) and began to wait. Suddenly 3 customs officials came walking in. I whispered they better not be after my damned plane!  They were! Seems they received an anonymous tip that this particular plane had not cleared customs after returning from the Virgin Islands. It had as it was sitting in Tampa. The trauma nurse and pilot both tried negotiating with customs to no avail. They were determined to break down ALL the machines I would need to keep me alive during the flight. The pilot offered to have one of them fly with us to Pittsburgh, tear everything apart upon landing and he would fly him home- we received a negative response to this suggestion too.
        I was slowly watching my chance at life slip through my fingers. I made a decision. I asked for a quarter. I went to the pay phone (yes there were still around) and called the local news station. I chose one that loves stories like this. I spoke with the news desk and mentioned it was a matter of life or death. When the gentleman asked who's I said mine! I told him customs would not release my air ambulance for me to receive a lung transplant and there was a slim chance I'd ever get a call again.  Within minutes, we heard over one of the customs officials radios "Who the hell called channel 4 !" They looked at us and I sweetly smiled, raising my hand and replied "Guilty"
     However it worked we were on our way! I must say that was the longest - most thought provoking flight of my life. Flying through the clouds and reflecting on my life. As we landed it was a rush to get me to the hospital. You see, I was supposed to be opened up and ready for new lungs at 5AM and we had just landed at 5AM.It was a mad dash in an ambulance!
 As we were awaiting for the official "go" I was sharing jokes with the anesthesiologist in the ER.

   Suddenly one of the physicians looked at me and asked " Are you ready?"  I replied " Is it a go ????" wide eyed and hopeful.. He smiled the most gorgeous smile ever - and said "It sure is"
And I was wheeled into the operating room on the biggest adventure of my life!

To Blog or Not ToBlog

I've recently heard from a few of you that I haven't blogged in awhile. Looking at my last post, I would have to agree. I want to thank you for being my reminder, and giving me something to truly think about these past few days.
I've discovered that lately when I don't feel well, I tend to retreat into myself as opposed to putting it out there in cyberspace. I mean, why put my misery off you right? Though it isn't really misery, we long-termers have learned to just keep going no matter what. There is always a "good day" right around the corner.

Before the days of Facebook and social media, I kept a journal. I was obsessively diligent in writing my daily thoughts and actions each night. This journaling literally saved my life, not only emotionally, but medically. Each time I open one particular journal (this one I keep handy) I am vividly reminded of that time 12 years ago. I remember what I endured medically, how I felt each day with my strength and life slowly ebbing away. But mostly I remember how I wrote about it, and how it made me stronger mentally to carry on.

Now, today we have blogging. So my decision is to write about my bad days as well as my good or remain quiet. My Reader's Digest (condensed) version is this:
The last few months have been a trial with new developments medically. I've had enough ct scans, and labs to keep me happy for another decade!  I trudge through all these new aches and pains with a vengeance.
However, inside is that nagging thought, "will this be one of those "bad years"?"  If you have severe medical issues you know what I mean. I live in dread of another winter like the one I endured in 2007/2008 which carried over to 2009. Actually I am still paying for that time too. These past months have brought about more "not so good days" than good days. I refuse to believe they are bad days yet, I haven't hit the worst day I've ever had on a scale of 1-10.

Through all this, my lung function is stable and remains the same. Plus my kidney function is great too. I am determined to keep these 2 organs in top condition as long as I possibly can, these are a cherished Gift. I am confident these other aches and pains are merely the aging process, and I will accept and conquer these like a champ. After all if not for 3 graciously generous families I would never have been given the chance to conquer the aging process .

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......

Today's gonna be a great day!

While this may be great lyrics for a song- The Blackeyed Peas just in case you haven't heard it on TV, I have gotten in the habit of telling myself this each and every morning. I am Blessed to wake up. I am Blessed to be out of the wheelchair. I am Blessed to be off oxygen. I am Blessed my kidneys work and no  more diet restrictions.
Let's face it... I'm Blessed.
Actually we are all Blessed to be alive and enjoying life's good moments and obstacles. It wasn't that long ago I was told (3 times) I was going to die. Those are words no one should have to hear, especially at 17, or 31, or 45 for that matter.
  I actually didn't hear it at 17, my parents did and told me later. So there wasn't much impact. I did know that my life was going to be shorter than most. So I justified it by telling my parents my philosophy:
"If I die old -no one remembers, BUT if I die young, no-one forgets."  This was merely a way for me to put this part of my life in perspective, and cover my nervousness.
 This death sentence was always pushed up each time I hit a new milestone. When I passed 20 it was pushed to 25, then to 30. I guess back then it was all the doctors had to go on. I remember mentioning to my Mom that turning 30 was difficult enough, geez do they have to put a death sentence on too?
   Of course there were hospital visits during all of this. After all, I was a boisterous young adult. Plus I was told to go out and live my life to the fullest. If I died, I was going to anyway. Good thought. I took all this in and did just that.
     Waiting for the first transplant didn't seem so bad. I had all this time to prepare for my impending departure. You might say I had consigned myself to the inevitable. NOW,the second was devastating. To say it was devastating is an understatement. To spend 9 years of total freedom, doing things I never dreamed of and then be told I had chronic rejection was enough. The disease and destruction was so fast I found myself wishing I still had Pulmonary Hypertension. After all, it was easier to deal with.  To be given soemthing so wonderful as breathing, set goals in life, achieve those goals and then .... You get the picture I'm sure.  Oxygen, wheelchairs, gasping for breath, total and utter defeating debilitation. This time was extremely difficult for  me to accept. I was NOT ready this time. Please don't take away what I've so recently learned to enjoy!
   This is the time when I began to find comfort in so many little things we take for granted. Sitting outside in the morning with a cup of coffee watching the breeze blow through the palms, a light rain on leaves, the calm of a glassy lake. I also began continual conversations with God. I've talked with God all my life, now we were best friends talking about everything. He convinced me to use my every ounce of energy and breath to get out of bed each morning. Take my meds. Eat-when I'd decided breathing was more important. God was my support system, my main support system. Most of my days were spent alone, so God was my only friend and He stopped by to visit all the time.  He taught me to look in the mirror every morning, see a face in pain, smile and say "It's gonna be a great day!"
 So with each new hip pain, knee pain, whatever new obstacle thrown in my path:  I still tell myself this every morning. It works.

By the way ...I still love the small wonders around me. Yes even the rain and cold.

HANDBOOK FOR 2010

Health:

1. Drink plenty of water.
2. Eat breakfast like a king, lunch like a prince and dinner like a beggar.
3. Eat more foods that grow on trees and plants and eat less food that is manufactured in plants.
4. Live with the 3 E's -- Energy, Enthusiasm and Empathy
5. Make time to pray.
6. Play more games.
7. Read more books than you did in 2009.  ( If only this were possible, I'd be financially broke)
8. Sit in silence for at least 10 minutes each day.
9. Sleep for 7 hours.
10. Take a 10-30 minute walk daily. And while you walk, smile.

Personality:

11. Don't compare your life to others. You have no idea what their journey is all about.
12. Don't have negative thoughts or things you cannot control. Instead invest your energy in the positive present moment.
13. Don't over-do. Keep your limits.
14. Don't take yourself so seriously. No one else does.
15. Don't waste your precious energy on gossip.
16. Dream more while you are awake than when you sleep.
17. Envy is a waste of time. You already have all you need.
18. Forget issues of the past. Don't remind your partner with His/her mistakes of the past.
That will ruin your present happiness.
19. Life is too short to waste time hating anyone. Don't hate others.
20. Make peace with your past so it won't spoil the present.
21. No one is in charge of your happiness except you.
22. Realize that life is a school and you are here to learn. Problems are simply part of the curriculum that appear & fades away like algebra class but the lessons you learn will last a lifetime.
23. Smile and laugh more.
24. You don't have to win every argument. Agree to disagree.....

Society:

25. Call your family often.
26. Each day give something good to others.
27. Forgive everyone for everything.
28. Spend time w/ people over the age of 70 & under the age of 6.
29. Try to make at least three people smile each day.
30. What other people think of you is none of your business.
31. Your job won't take care of you when you are sick. Your friends will. Stay in touch.

Life:

32. Do the right thing!
33. Get rid of anything that isn't useful, beautiful or joyful.
34. GOD heals everything.
35. However good or bad a situation is; it will change...
36. No matter how you feel, get up, dress up and show up.
37. The best is yet to come.
38. When you wake up in the morning, thank GOD that you are alive. ( most definitely !)
39. Your inner most is always happy. So, be happy.

Birthdays..How many do you have?

      Many of you may think this a strange question. As for me, not at all. As I sit here with an excruciatingly painful toothache I've pondered this question.
      On January 1st of this year a friend came by to celebrate her 50th birthday with us. I grilled chicken outside with shrimp scampi as an appetizer. And yes, we were able to grill outside on our one warm day before the unbelieveable cold hit Florida. As a joke I made a banner that read "Happy 21st Anniversary of your 29th Birthday". As we age we seem to try and forget the most important day of our lives. In fact it is really the only day that matters, for without it we would cease to exist.
     As for me, I celebrate 5 birthdays. Yes my biological birthday is very important, but so are my transplant birthdays of which there are 3, plus my donor Susie (the only one I know). Many prefer to call their transplant birthday their anniversary, which has little logic for me. After all wasn't I given the Gift of Life?
If not for those transplants I would not be alive writing this today. Those who've had an organ transplant, know the emotions that go hand in hand with being a recipient. This Gift of Life can turn the hardest person into emotional mush. I can say this with clarity, because I was afraid of nothing before my first transplant. If my car broke down on a dark road, I'd walk home (this was before cell phones). Now, no way would I do this  and so foolishly run the risk of my donor families hearing I took this chance with what I was given.
    I remember a newspaper article that ws done on me in 1991 post transplant. In this article I stated I intended to enjoy each and every wrinkle and grey hair I get. So far so good. I' getting them. I'm tolerating them. I'm not doing anything about them. I will age gracefully with all my scars, wrinkles and grey hair completely intact.
    Now that this is written I can decide which will be more excruciating. The toothache or the cost of the antibiotics to make it go away.. Either way I will feel the pain, believe me.

By the way... My friend dropped me a thank you card for her celebratory dinner. She thanked me for making her "29th Anniversary of her 21st Birthday" so much fun.. Guess she wanted to be younger still

26 Operations-13 kidneys

This was in todays newspaper. It is one inspiringly hopeful story!

26 operations, 13 kidneys: hope to few with little




By LAURAN NEERGAARD

AP Medical Writer





Published: Monday, December 14, 2009 at 3:17 a.m.

Last Modified: Monday, December 14, 2009 at 3:17 a.m.

WASHINGTON - Twenty-six operations put healthy kidneys into 13 desperately ill people: Doctors in the nation's capital just performed a record-setting kidney swap, part of a pioneering effort to expand transplants to patients who too often never qualify.
Read the entire story at:


http://www.heraldtribune.com/article/20091214/APW/912140514