It hardly seems that nineteen years have passed since one anonymous, caring family changed my life.
So many years have passed and I've experienced so many things I never thought possible, yet I remember this day as if it were yesterday......
It was just past midnight on October 23,1991 when my mother woke me for a phone call. I should have known by the excitement in her eyes who the caller was. It was my pre-transplant coordinator from the University of Pittsburgh Medical Center (UPMC) telling me there were lungs available and I was # 1 to receive. I also knew that I could get there, and it be a "no go" meaning the lungs deteriorated too much in transport or were too damaged to transplant.
It is because of this one day, I learned to have more patience than the normal person should need, and survival. The survival part will be explained to you soon.
I contacted my Air Ambulance company who had ben contracted to fly me to Pittsburgh from Jacksonville, Florida. They were under contract to have a plane waiting in Alabama for just such an emergency. They returned my call with the grim news that a plane would be arriving from Houston, TX. Now being an airline ops agent I knew this would not get me to UPMC in my allotted 4 hours. I mentioned that after the pilots got there, fueled, checked the weather, did a pre-flight and a 2 hour trip to JAX I would not make the 4 hour window necessary. I could feel my chances slowly slipping away. I mentioned I would call UPMC for the OK.
Upon calling and speaking with my coordinator he mentioned they had a plane sitting in Tampa that had just taken a patient back to the US Virgin Islands and it would be sent to me. Hurray!!!! I called the air ambulance back with the news and he was visibly upset. When he started asking when the arrival was and the tail number alarm bells began going off and I asked why he needed this info since he was no longer in the equasion. "Merely making sure all goes well for you." Yeah right. I advised him I was in aviation ops and all was fine but thanks anyway.
We headed out for the private section (FBO) of the airport to await my "chariot". While we were sitting in the lobby 3 customs agents walked in and glanced my way. "alarm bells again" I mentioned : "They better not be looking for my plane!" Well it turns out, they were. The plane landed and the medical staff came looking for me and customs reared it's ugly head. Seems they had a tip (did I mention those alarm bells from the air ambulance) that a medical plane was landing that had not cleared customs prior to arrival. The Captain told them he was in the US Virgin Islands, then West Palm Beach and finally Tampa before flying to JAX to get me. He even showed them the log book. Well those lovely customs officials demanded to take apart all the medical equipment onboard and inspect it. No way said the DR. onboard, 'These are needed to keep her alive prior to transplant." The pilot offered to let them fly to Pittsburgh -take apart all the equipment upon landing and then he would fly them back to JAX-no way.
I was slowly watching my chance at life slip away.... I made a snap decision and asked for a quarter. "Why?" I'm calling channel four news, they'll get my plane in the air. Without being noticed I walked to a pay phone and called the news station. I explained that customs was holding up a "life flight" air ambulance on a bogus tip. When I was asked why I was calling, my reponse was "This is truly a matter of life and death-and it happens to be MINE!" Within seconds a loud voice boomed over the customs walkie talkie "Who the hell called channel four!!!!" They all looked at me as I politely smiled and held up the phone receiver. walkie-talkie "Get that damned plane in the air!" Our plane was released (not without dirty looks) and I was finally on my way.
The medical staff onboard were fantastic. Any need was immediately seen to and I was told to relax and enjoy the trip. Flying through those clouds on a dark night felt like I was flying to a new life and new adventure. That feeling is still with me today. Each day is a new adventure to be enjoyed with absolute relish and abandon.
Due to the delays we got to Pittsburgh airport late. I was rushed to UPMC where the Dr's said they were cutting the time very close. I should have been on the table, old lungs out and waiting for my new ones by 5AM. I didn't arrive until 5AM.... As I lay on a gurney in the ER telling the staff jokes one of the Dr's. looked at me and said :"Well are you ready to go?" My eyes got as big as saucers, I smiled and asked, "So, it's a go?" "Yep, hurry up with that punch line before we put you under."
And thus my new life began.....
It was not all cakes and punch, don't let me kid you. After being taken off the respirator I had to be placed back on due to fluid build up in my lungs. That is a story in itself if anyone cares for a laugh. I know a nurse who certainly isn't laughing to this day. When I woke up and realized I was back on the respirator (the bane of my existence) it had to be the most depressing day of my life! "Why did I do this?" Alarms started going off! Staff rushing around and entering the cubicle next to me. The recipient next to me turned critical! Talk about an attitude adjustment. "I opened my eyes. looked to heaven, and said "Thank you God, I never meant to think that way!" "Just please don't let me have to be shocked with all these (49) staples in my chest".
I was extubated in a few days and transferred to the lung transplant wing. Whew.... Getting closer to home. I did suffer a severe rejection, but came out of it with my sat levels at 100% not to shabby for a girl who lived on 46% room air for most of her life. I was told that the new lungs were severely damaged in the accident, and I may have to be placed back on a respirator to wait for another "good" set of lungs. I thought,"no way-YOU don't now me very well."
Yes I have learned alot and organ transplantation has made me the character I am today. But would I trade one single minute good or bad? Not at all.
So today please take a moment, look up to the sky and thank my anonymous donor for giving me a life I never dreamed possible. She was only 34 and from Lancaster, PA.
And if you aren't an organ/tissue donor please consider it. Don't wait until it affects you or your family personally. There is a family out there just like yours watching the life slowly ebb out of a loved one with a terminal diagnosis.
Share your life....Share your decision... Become an Organ Donor
Showing posts with label life support. Show all posts
Showing posts with label life support. Show all posts
Saturday, October 23, 2010
Thursday, January 28, 2010
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.
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.
Wednesday, December 30, 2009
It's That Kind Of Day
Have you ever had a bad day and said that. "I'm having that kind of day." For a long time I changed it slightly and said "I'm having one of those lives."You know the kind. You can't seem to get ahead, you feel like the world is crashing in around you. And you seem to be the only one holding it up with your small, weak TWO hands.
Being one of the "chronic/terminal" humans in life, can make life seem daunting. Not only am I struggling against everyday obstacles like everyone else, I also have the medical struggle for survival. So many times I wish I only had to see one doctor one time in one year. Can you spell relief? Ever wonder what heaven on earth would feel like. For me, read the above sentence again.
This is where I talk about support systems. I had a truly magnificent support system with all three of my organ transplants. In fact, if not for my parents and family I might not have seen the first one. With the loss of my Daddy this support system seemed to crumble. I've learned mentally to handle times on end in the hospital alone. This includes holidays, birthdays, etc. I thank God I love to read and create. That and wear holes in the carpet or tile from walking the wing so much. I am a survivor.
We ALL need a champion pushing us on to newer heights and accomplishments. A sounding board. A confidante. That One True Friend. I've always been a loner, mainly because no one wants to see someone waste away and die on them. No ONE. Been there, experienced that, overcame the hurt and grew stronger.
Throughout my life I could always count my true friends on one hand. Most times on one finger. Anyone can have tons of friends or be popular. I'm referring to that One True Friend.
That special friend you seem to have an honest trust with. You can tell this friend anything, even your deepest darkest secrets and fears. You have such a strong trust and truthfulness between you, you know beyond a shadow of a doubt they will NOT betray that trust and tell. Nor will they ever leave your side, even if you inadvertently push them away. This friend is always there in the shadows, quietly waiting for when you need them.
This friendship should be cherished and honored for it is so rare to find. There will be times of hurt, but this friendship will endure even when you think it will not. This is the support system we all need. It is equal on both sides.
I have had this one true friend only once in my life. I miss our talks. Our debates. Mostly I miss someone who will listen to all my fears about my health and still be my champion. Someone who was there all the time no matter what.
Now however it is my time to quietly wait in the shadows until I am needed. Whenever that may be. Dear friend, I am here.
Being one of the "chronic/terminal" humans in life, can make life seem daunting. Not only am I struggling against everyday obstacles like everyone else, I also have the medical struggle for survival. So many times I wish I only had to see one doctor one time in one year. Can you spell relief? Ever wonder what heaven on earth would feel like. For me, read the above sentence again.
This is where I talk about support systems. I had a truly magnificent support system with all three of my organ transplants. In fact, if not for my parents and family I might not have seen the first one. With the loss of my Daddy this support system seemed to crumble. I've learned mentally to handle times on end in the hospital alone. This includes holidays, birthdays, etc. I thank God I love to read and create. That and wear holes in the carpet or tile from walking the wing so much. I am a survivor.
We ALL need a champion pushing us on to newer heights and accomplishments. A sounding board. A confidante. That One True Friend. I've always been a loner, mainly because no one wants to see someone waste away and die on them. No ONE. Been there, experienced that, overcame the hurt and grew stronger.
Throughout my life I could always count my true friends on one hand. Most times on one finger. Anyone can have tons of friends or be popular. I'm referring to that One True Friend.
That special friend you seem to have an honest trust with. You can tell this friend anything, even your deepest darkest secrets and fears. You have such a strong trust and truthfulness between you, you know beyond a shadow of a doubt they will NOT betray that trust and tell. Nor will they ever leave your side, even if you inadvertently push them away. This friend is always there in the shadows, quietly waiting for when you need them.
This friendship should be cherished and honored for it is so rare to find. There will be times of hurt, but this friendship will endure even when you think it will not. This is the support system we all need. It is equal on both sides.
I have had this one true friend only once in my life. I miss our talks. Our debates. Mostly I miss someone who will listen to all my fears about my health and still be my champion. Someone who was there all the time no matter what.
Now however it is my time to quietly wait in the shadows until I am needed. Whenever that may be. Dear friend, I am here.
Saturday, August 22, 2009
Things we think about pre-transplant
It seemed that my mind was in constant motion during my "wait" period.
It was at this time I discovered "wait" was a four letter word. Being on oxygen and at deaths door per se, thinking was all I could do. I had moved back in with my parents in Jacksonville mainly because I needed help, but I also needed a positive family influence to keep me going.
And my family exudes positiveness to the nth degree. I thank God constantly for blessing me with such a family.
I remember my Mom, God Bless her, would bring a cooler to my bedroom with a sandwich and drinks before she went to work. I was tied to an oxygen concentrator and the kitchen was too far to walk with no help. She also brought in all the crafts and books I wanted for the day.
Facing ones mortality at 28 years old is tough. It's tough for anyone, but I think more so when you're so young. You have to think about things you shouldn't have to worry about for another 40-50 years. How to disburse your estate..What estate? What could a person of 28 possibly have? ALOT, believe me. I bought a large Aluminum hurricane proof storage unit, had it delivered, tied down, electricity ran to it and my dad was going to put in an air conditioner. This held all my worldly possessions. The furniture I'd need to re-start my life post transplant among other items. I never contemplated that I wouldn't survive. It was just not an option. I planned for if I didn't, just in case. This unit still sits in Mom's backyard, now holding all her craft projects.
October 1, 1991
I'm thinking of making out a Living will at Dr. Chinoy's office. This is a really big dilemma for me, for in the living will I have to sign whether I want life support or not. If I end up in the hospital before the transplant, it will most likely be on life support (respirator). The only reason for this would be to keep my vital organs and lungs oxygenated while I wait for the transplant. If I state no life support, I can't get the respirator. BUT I don't want to be hospitalized indefinitely on a respirator.
If I do opt for the respirator, I'm afraid if I feel it's my time to go and ask for the plug to be pulled the courts/Dr. won't allow it to be done. Mainly because my mind will still be functional (I hope) and I'm asking to be freed. Not only this, I don't think my parents or family would have the strength to pull that plug. Especially if my mind is active and I'm alert.
If I am comatose it might be easier. I can only hope.
My last and most important wish would be: If I'm on life support for an extended period of time, and feel it's time to go Home that someone will have enough compassion for me to just turn the respirator off. I'm sure when it's time God will let me know.
When it happens, I pray someone will hold me in loving arms while freeing me from my medical bonds. My last breath will be whispering I love you to someone who's very special in my life.
I received my first lung transplant exactly 22 days later.
Facing your mortality is not easy, but it has to be done. We-none of us is immortal.
Talking it over with my parents did bring us closer, and we shared our wishes with each other regarding end of life.
My mom showed enormous courage in carrying out my Dad's wishes when it was his time. He did not want to be kept alive through force feeding.
In being selfish I can only say I'm glad it fell to her.
I celebrated my Daddy's freedom, but didn't have the strength to be the one to let him go.
I'll regret that forever.
How can I expect someone to have that strength for me, when I couldn't muster it for the most important man in my life?
It was at this time I discovered "wait" was a four letter word. Being on oxygen and at deaths door per se, thinking was all I could do. I had moved back in with my parents in Jacksonville mainly because I needed help, but I also needed a positive family influence to keep me going.
And my family exudes positiveness to the nth degree. I thank God constantly for blessing me with such a family.
I remember my Mom, God Bless her, would bring a cooler to my bedroom with a sandwich and drinks before she went to work. I was tied to an oxygen concentrator and the kitchen was too far to walk with no help. She also brought in all the crafts and books I wanted for the day.
Facing ones mortality at 28 years old is tough. It's tough for anyone, but I think more so when you're so young. You have to think about things you shouldn't have to worry about for another 40-50 years. How to disburse your estate..What estate? What could a person of 28 possibly have? ALOT, believe me. I bought a large Aluminum hurricane proof storage unit, had it delivered, tied down, electricity ran to it and my dad was going to put in an air conditioner. This held all my worldly possessions. The furniture I'd need to re-start my life post transplant among other items. I never contemplated that I wouldn't survive. It was just not an option. I planned for if I didn't, just in case. This unit still sits in Mom's backyard, now holding all her craft projects.
October 1, 1991
I'm thinking of making out a Living will at Dr. Chinoy's office. This is a really big dilemma for me, for in the living will I have to sign whether I want life support or not. If I end up in the hospital before the transplant, it will most likely be on life support (respirator). The only reason for this would be to keep my vital organs and lungs oxygenated while I wait for the transplant. If I state no life support, I can't get the respirator. BUT I don't want to be hospitalized indefinitely on a respirator.
If I do opt for the respirator, I'm afraid if I feel it's my time to go and ask for the plug to be pulled the courts/Dr. won't allow it to be done. Mainly because my mind will still be functional (I hope) and I'm asking to be freed. Not only this, I don't think my parents or family would have the strength to pull that plug. Especially if my mind is active and I'm alert.
If I am comatose it might be easier. I can only hope.
My last and most important wish would be: If I'm on life support for an extended period of time, and feel it's time to go Home that someone will have enough compassion for me to just turn the respirator off. I'm sure when it's time God will let me know.
When it happens, I pray someone will hold me in loving arms while freeing me from my medical bonds. My last breath will be whispering I love you to someone who's very special in my life.
I received my first lung transplant exactly 22 days later.
Facing your mortality is not easy, but it has to be done. We-none of us is immortal.
Talking it over with my parents did bring us closer, and we shared our wishes with each other regarding end of life.
My mom showed enormous courage in carrying out my Dad's wishes when it was his time. He did not want to be kept alive through force feeding.
In being selfish I can only say I'm glad it fell to her.
I celebrated my Daddy's freedom, but didn't have the strength to be the one to let him go.
I'll regret that forever.
How can I expect someone to have that strength for me, when I couldn't muster it for the most important man in my life?
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