After receiving disheartening news in December, I posted the news on Facebook.
It seemed ironic that I normally go to my clinic visits feeling uncertain, only to hear how well I'm doing. This time I was feeling great, and got a less than favorable prognosis.
Lung transplant dropped the chronic rejection bomb, while I discovered my paperwork also showed stage 2 kidney disease from kidney transplant.
After posting my thoughts on FB, I got many responses. Most encouraging my determination to do this on my terms.
However, I think one read it incorrectly. tge response was "I've been in stage 3 for years". Replying about a lung transplant
It was stage 2 kidney disease, scary in itself being a kidney recipient.
However a first time lung transplant has the possibility of being relisted. Me, having had 2 already my chance is next to nil for another.
I'm not being nit picky, merely to set the record straight. I remember my years of chronic rejection, and the fast downward spiral. I have no wish to go there again, though I knew it would one day happen I don't miss the nose wedgies and bloody noses from oxygen. My wheelchair has been in solitary confinement gathering dust .I have no desire to grant it visitation rights to my derrière.
Mostly, I do not miss the shortness of breath when talking. Being forced to decide between eating and breathing.
Or the realization that my life is slipping away. It is pure hell having an active mind in a daily weakening body.
Which is why I posted my life on my terms.
I am slowly rebuilding my endurance, no small feat with a negative reserve of energy. Let alone the breath.
I'm walking more and have taken to my bicycle in the hope of keeping my wheelchair in solitary confinement.
Showing posts with label survival. Show all posts
Showing posts with label survival. Show all posts
Saturday, January 4, 2014
Friday, August 27, 2010
What would you do?
While I realize that many wonder if they should have a transplant, I don't remember thinking this way.
After all, my first one was almost 19 years ago. I do remember making sure affairs were in order just in case. I also realized it was a 50/50 shot. I might NOT get that call in time. I spent more time relishing seeing the waves crash the shore at the beach, wind lightly swaying the palm trees, and rain.
I did however try to put my life into perspective.. Back in the middle ages a person had to be given the death sentence of "12 months to live" to be placed on a transplant list. I remember the shock the day I heard this, "But I'm feeling fine." I also remember waking on that fateful 365th day and wondering if it would be my last. I did not ponder if I should get a transplant.
When I was told that I would need a second lung and then a kidney, my thoughts were "Where do I sign up?" I had enjoyed a life I never imagined possible for 9 years with the first transplant. And back then the survival rate was 50% past one year and 3 years survivability... I AM STILL HERE... Thought that needed to be emphasized.
So my question to you is:
If you were told you needed an organ transplant or another organ transplant :
What would you do? And Why?
After all, my first one was almost 19 years ago. I do remember making sure affairs were in order just in case. I also realized it was a 50/50 shot. I might NOT get that call in time. I spent more time relishing seeing the waves crash the shore at the beach, wind lightly swaying the palm trees, and rain.
I did however try to put my life into perspective.. Back in the middle ages a person had to be given the death sentence of "12 months to live" to be placed on a transplant list. I remember the shock the day I heard this, "But I'm feeling fine." I also remember waking on that fateful 365th day and wondering if it would be my last. I did not ponder if I should get a transplant.
When I was told that I would need a second lung and then a kidney, my thoughts were "Where do I sign up?" I had enjoyed a life I never imagined possible for 9 years with the first transplant. And back then the survival rate was 50% past one year and 3 years survivability... I AM STILL HERE... Thought that needed to be emphasized.
So my question to you is:
If you were told you needed an organ transplant or another organ transplant :
What would you do? And Why?
Sunday, January 31, 2010
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.
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.
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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