Over the last few months, I've witnessed quite a bit of bitterness in the Social Networking Groups and Personal pages of friends. It has me worried. I keep seeing, "I don't want to die waiting". "I can't wait for my transplant so I can get off oxygen". " I need to be transplanted now!" More often than not, I see posts filled with bitterness and anger. Is this how we want to be remembered? Someone who was bitter to the end? Or do we want to be thought of with warmth and thoughts of she smiled to the end...
Think about it....
After working in the medical field for years and witnessing a variety of emotions from patients, I made a solemn vow that the bitterness would not over take me. I would have no regrets. One of the best things my transplant center did was stress...
1. You may not get transplanted.
2. You may not come out at 100%
3. You may come out and still be on oxygen.
4. Live your life NOW
I always kept this in the back of my subconscious.
If I didn't get my transplant, well I died trying and gave it my best- laughing to the end.
If I didn't come out at 100% or on oxygen- I would deal with it. It's better than where I was right?
I was also told to not spend what time I had left pinning all my hopes on a transplant. What was left of my life would fade away without me realizing it. I hope others take that to heart. Too many times we focus on this pain or that ache and not living life.
Life is meant to live- no matter your limitations.. Enjoy your family outings even if from a chair. You are there.. Your family is overjoyed you are there too.
Those birthdays are so important. Many parties show me celebrating with the birthday person on oxygen. I have a wedding photo while on oxygen. This is my life and my memories !
I cannot let anyone take those from me, or not experience them due to bitterness. Refuse to let it consume you.
Point to ponder... If you pin every hope and dream on a transplant- what happens if you don't come out 100% ?
Showing posts with label transplant. Show all posts
Showing posts with label transplant. Show all posts
Thursday, June 18, 2015
Tuesday, April 16, 2013
Journey Part One
The exercise has been going well. Sunday I opted for walking around the Sharks Tooth Festival instead of the treadmill. Granted the cinnamon glazed, strawberry topped funnel cake did nothing for my cause :) But was it ever good !
I'm also noticing a slight increase in my energy level too which is a Blessing. Oh! and I finally tackled the multi-station gym ! Not much, just 2 sets of upper body weights, and I came to another realization. I am weak. The time for getting serious has long been waiting.
I know the strength training is crucial. Especially since my transplant cocktail includes the dreaded Prednisone! (Holds fingers in the shape of a cross and gives a hiss) Prednisone has many medical uses, helping prevent organ rejection is a great reason to keep it around. The side effects of long term use are no walk in the park either though. It loves to slowly chip away at bones and muscle, so strength training is important. My doctor once said "one week missed exercising for me was similar to a healthy person missing 2 months " !! *groans & hangs head* I have a lot of catching up to do.
I still firmly believe that since Prednisone has been around since the dawn of time they could've made it taste better! Have you ever had that tiny pill stick to your tongue? Or worse, the roof of your mouth? OMG! Nothing gets rid of that taste!
Since my IV stopped Saturday my cough is slowly returning as I knew it would. My vicious circle of survival :) but now the vertigo has reared her wavy head too. This morning I sat on the bed as the room spun a few times and considered calling out "Auntie Em!" Toto!" I'll up my water intake and see if it helps. If not, at least I won't be dehydrated-but possibly feel like the Titanic. ;)
Errands today and orders to finish and water to drink, my day is planned. Hope yours is happy and productive too.
I'm also noticing a slight increase in my energy level too which is a Blessing. Oh! and I finally tackled the multi-station gym ! Not much, just 2 sets of upper body weights, and I came to another realization. I am weak. The time for getting serious has long been waiting.
I know the strength training is crucial. Especially since my transplant cocktail includes the dreaded Prednisone! (Holds fingers in the shape of a cross and gives a hiss) Prednisone has many medical uses, helping prevent organ rejection is a great reason to keep it around. The side effects of long term use are no walk in the park either though. It loves to slowly chip away at bones and muscle, so strength training is important. My doctor once said "one week missed exercising for me was similar to a healthy person missing 2 months " !! *groans & hangs head* I have a lot of catching up to do.
I still firmly believe that since Prednisone has been around since the dawn of time they could've made it taste better! Have you ever had that tiny pill stick to your tongue? Or worse, the roof of your mouth? OMG! Nothing gets rid of that taste!
Since my IV stopped Saturday my cough is slowly returning as I knew it would. My vicious circle of survival :) but now the vertigo has reared her wavy head too. This morning I sat on the bed as the room spun a few times and considered calling out "Auntie Em!" Toto!" I'll up my water intake and see if it helps. If not, at least I won't be dehydrated-but possibly feel like the Titanic. ;)
Errands today and orders to finish and water to drink, my day is planned. Hope yours is happy and productive too.
Thursday, May 20, 2010
The Blessing of Mini-me's
I had to replace the batteries in my spirometer this morning, and decided to stop for lunch on the way home. While sitting at the table quietly eating my roast beef sandwich, I noticed a family sitting to my left.
Their daughter was this adorable little cherub with blonde ringlets for hair. She was very involved with Mom, but dad and grandpa (I think) were totally immersed in eating. All at once this little cherub began to cry and grab her eyes, saying they hurt. My guess is she has an eye issue as Mom started searching for eye drops and trying to calm her down.
This is when I began to become a little irate with the father. Instead of talking to his daughter and soothing her worries he continued to eat! And he was the one sitting next to her. Mom got the eye drops and ushered mini-me into the ladies room to put them in, while Dad watched her leave and proceeded to grab the little ones fries and eat them! What a louse! Actually I was thinking much worse but that's the nicest name I could think of for the moment. Mom & daughter returned and once again the little one was smiling and chatting away. The only words I heard dad say were " you better eat your food". No smile. No show of affection at all for this little adorable creature.
This has become the basis of today's blog.
Do people truly realize what an unbelieveable blessing it is to have this miniature carbon copy of themselves?
Or is it just people like me, who never had that chance?
Do people realize what they've been given?
I was told when I was 17 that I could never have children. Not only would it be fatal for me, there was a 90% chance of the child being brain dead due to my lack of oxygen. Basically this has been a no brainer for me all my life, but that does not negate the emotional nor the mental impact of watching a carbon copy of yourself grow and succeed. Or for me the lack of.
I had a tubaligation at 18. The next part you'll read I have never discussed since the fatal day it happened.Twelve years later, while on the transplant list waiting for my first life saving/altering lung transplant we discovered that tubal failed. I was 5 weeks pregnant. I was on oxygen. I was living on 45% room air. I knew what had to be done, and I signed the papers, went into the hospital and it was done. Many may think me cold in this regard, but when you've lived most of your life being told this is how it is, that is just what you do. Another tubal was performed, but this time I sternly told the doctor: "You make sure this does not happen again, I will not endure this again physically but most of all emotionally and mentally!" One time was enough for me. Also while this was happening, another choice had to be made. Whether to have a wedding or a honeymoon. The wedding happened on a Saturday evening and on Monday morning I was admitted into the hospital. So, there was one day for a honeymoon.
Does my decision haunt me? Yes, sometimes it does. During heated arguments it was always thrown in my face that I never talked about it, just did it. Honestly there was nothing to talk about. If I did, it would have made it more difficult to do what had to be done. I could never be so selfish as to risk a childs life like that. In my opinion there are way too many out there no one wants, who I could love just as much if not more than a biological child. My doctor placed us on a list for a newborn adoption. Well, the day he called to tell me the good news that he had a pregnant mom who wanted to give us her baby, I had to tell him that I had been single for a week.. Once again... no child for me.
I was in my early thirties when it hit me, "Wow a parent is responsible for molding a childs personality, attitude, and goals." This hit me like an epiphany. I realized the impact a parent has. If it took me this long to realize it, how many others much younger wished it hit them sooner? I fully realize it's tough for parents in todays world. You have to be ever vigilant. But, I also know when both parents work together, nothing is impossible. I see it everyday with my nieces and the time both parents take with the kids. They should be honored for all both of them do. I am so proud they are MY family! I see well-mannered and well- adjusted kids. Yeah they're sometimes a hand full-but look at the gene pool they came from! LOL
So my words for today..... Hugs those Mini-me's until they cry for air! Tell them constantly you love them..and be ever vigilant in keeping them straight. There are those of us out there who wish we were in your shoes for a day!
Their daughter was this adorable little cherub with blonde ringlets for hair. She was very involved with Mom, but dad and grandpa (I think) were totally immersed in eating. All at once this little cherub began to cry and grab her eyes, saying they hurt. My guess is she has an eye issue as Mom started searching for eye drops and trying to calm her down.
This is when I began to become a little irate with the father. Instead of talking to his daughter and soothing her worries he continued to eat! And he was the one sitting next to her. Mom got the eye drops and ushered mini-me into the ladies room to put them in, while Dad watched her leave and proceeded to grab the little ones fries and eat them! What a louse! Actually I was thinking much worse but that's the nicest name I could think of for the moment. Mom & daughter returned and once again the little one was smiling and chatting away. The only words I heard dad say were " you better eat your food". No smile. No show of affection at all for this little adorable creature.
This has become the basis of today's blog.
Do people truly realize what an unbelieveable blessing it is to have this miniature carbon copy of themselves?
Or is it just people like me, who never had that chance?
Do people realize what they've been given?
I was told when I was 17 that I could never have children. Not only would it be fatal for me, there was a 90% chance of the child being brain dead due to my lack of oxygen. Basically this has been a no brainer for me all my life, but that does not negate the emotional nor the mental impact of watching a carbon copy of yourself grow and succeed. Or for me the lack of.
I had a tubaligation at 18. The next part you'll read I have never discussed since the fatal day it happened.Twelve years later, while on the transplant list waiting for my first life saving/altering lung transplant we discovered that tubal failed. I was 5 weeks pregnant. I was on oxygen. I was living on 45% room air. I knew what had to be done, and I signed the papers, went into the hospital and it was done. Many may think me cold in this regard, but when you've lived most of your life being told this is how it is, that is just what you do. Another tubal was performed, but this time I sternly told the doctor: "You make sure this does not happen again, I will not endure this again physically but most of all emotionally and mentally!" One time was enough for me. Also while this was happening, another choice had to be made. Whether to have a wedding or a honeymoon. The wedding happened on a Saturday evening and on Monday morning I was admitted into the hospital. So, there was one day for a honeymoon.
Does my decision haunt me? Yes, sometimes it does. During heated arguments it was always thrown in my face that I never talked about it, just did it. Honestly there was nothing to talk about. If I did, it would have made it more difficult to do what had to be done. I could never be so selfish as to risk a childs life like that. In my opinion there are way too many out there no one wants, who I could love just as much if not more than a biological child. My doctor placed us on a list for a newborn adoption. Well, the day he called to tell me the good news that he had a pregnant mom who wanted to give us her baby, I had to tell him that I had been single for a week.. Once again... no child for me.
I was in my early thirties when it hit me, "Wow a parent is responsible for molding a childs personality, attitude, and goals." This hit me like an epiphany. I realized the impact a parent has. If it took me this long to realize it, how many others much younger wished it hit them sooner? I fully realize it's tough for parents in todays world. You have to be ever vigilant. But, I also know when both parents work together, nothing is impossible. I see it everyday with my nieces and the time both parents take with the kids. They should be honored for all both of them do. I am so proud they are MY family! I see well-mannered and well- adjusted kids. Yeah they're sometimes a hand full-but look at the gene pool they came from! LOL
So my words for today..... Hugs those Mini-me's until they cry for air! Tell them constantly you love them..and be ever vigilant in keeping them straight. There are those of us out there who wish we were in your shoes for a day!
Wednesday, November 25, 2009
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.
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.
Thursday, July 16, 2009
Patches
She wakes each day with a smile, feeling Blessed.
The everyday routine means she’s still alive.
She smiles and feels as cleansed as the earth with each rain.
After all, God is laughing at our antics so hard he’s crying.
Each morning she checks her temperature, heart rate, blood
Pressure, and weight.
And then again in the evening as well.
This is her daily routine.
She tests her blood sugar, takes her insulin and Aranesp.
She also takes 2 hands full of pills each morning.
Then another handful before bed.
She faces the normal daily obstacles we all do.
And a few extra thrown in to test her character.
She cooks, cleans, mops floors, and walks her little dogs.
She calls her family and worries about her parents.
She misses her husband terribly when he’s away.
He is her soul mate, the one true love of her life.
Most of the day is spent on the phone with insurance companies,
Hospitals, and doctor offices. If she isn’t sick,
She’s trying to straighten out another bill.
She had to give up her dream to be a psychologist,
But she volunteers helping others get their meds free.
She writes newsletters to inform other patients, runs a small website to inform and encourage.
She lives life to the fullest she possibly can.
She truly knows just how short it really is.
If not for surgeries, she’d have no scars on her body.
But the ones she has, she wears with pride.
After all she had to die to get them.
1991. A scar down the center of her chest. Open heart surgery and
A bi-lateral lung transplant.
2002. The scar circling her left shoulder on her back.
A single lung transplant.
2004. A scar stretching from under her right arm to below
Her elbow. Vascular surgery for dialysis.
2005. The scar on her right side stretching from her navel to
Her groin. A right kidney transplant.
A broken heart at losing her Daddy.
2006. Two separate scars. On her left shoulder a small scar hides
A box. A pacemaker.
Six tiny points on her right thigh.
Ablation therapy for AV reentrant Tachycardia.
And 3 weeks later she competed in the US Transplant Games.
The 5K no less.
2008. A new scar tops the old scar on her right arm.
Removal of the vein for dialysis-a blood clot.
She can remember many holidays in the hospital.
But she understands.
This is the cross she is given to bear.
With each new diagnosis, she laughs and says
“Just another day at the office.”
She is a career recipient.
She doesn’t worry about wrinkles.
She is the extreme makeover.
Her mission in life;
To make sure all the other candidates after her
Get the same chance she has.
She jokingly says she understands how Frankenstein felt.
She is the Patchwork Sister.
She wakes each day with a smile, feeling Blessed.
The everyday routine means she’s still alive.
She smiles and feels as cleansed as the earth with each rain.
After all, God is laughing at our antics so hard he’s crying.
Each morning she checks her temperature, heart rate, blood
Pressure, and weight.
And then again in the evening as well.
This is her daily routine.
She tests her blood sugar, takes her insulin and Aranesp.
She also takes 2 hands full of pills each morning.
Then another handful before bed.
She faces the normal daily obstacles we all do.
And a few extra thrown in to test her character.
She cooks, cleans, mops floors, and walks her little dogs.
She calls her family and worries about her parents.
She misses her husband terribly when he’s away.
He is her soul mate, the one true love of her life.
Most of the day is spent on the phone with insurance companies,
Hospitals, and doctor offices. If she isn’t sick,
She’s trying to straighten out another bill.
She had to give up her dream to be a psychologist,
But she volunteers helping others get their meds free.
She writes newsletters to inform other patients, runs a small website to inform and encourage.
She lives life to the fullest she possibly can.
She truly knows just how short it really is.
If not for surgeries, she’d have no scars on her body.
But the ones she has, she wears with pride.
After all she had to die to get them.
1991. A scar down the center of her chest. Open heart surgery and
A bi-lateral lung transplant.
2002. The scar circling her left shoulder on her back.
A single lung transplant.
2004. A scar stretching from under her right arm to below
Her elbow. Vascular surgery for dialysis.
2005. The scar on her right side stretching from her navel to
Her groin. A right kidney transplant.
A broken heart at losing her Daddy.
2006. Two separate scars. On her left shoulder a small scar hides
A box. A pacemaker.
Six tiny points on her right thigh.
Ablation therapy for AV reentrant Tachycardia.
And 3 weeks later she competed in the US Transplant Games.
The 5K no less.
2008. A new scar tops the old scar on her right arm.
Removal of the vein for dialysis-a blood clot.
She can remember many holidays in the hospital.
But she understands.
This is the cross she is given to bear.
With each new diagnosis, she laughs and says
“Just another day at the office.”
She is a career recipient.
She doesn’t worry about wrinkles.
She is the extreme makeover.
Her mission in life;
To make sure all the other candidates after her
Get the same chance she has.
She jokingly says she understands how Frankenstein felt.
She is the Patchwork Sister.
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