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?
Saturday, August 22, 2009
Friday, August 14, 2009
Everything eventually comes flooding back
I've been remiss in posting mainly because my little dog DB has started with a terrible cough.
We tried the old remedy recommended by the veterinarian to no avail. To no avail right... Have you ever tried to give a dog Robitussin??? I hate the stuff so I can only imagine how this poor little 10 lb. dog feels. I even went the gamet of getting childrens flavored!
So after a week of the cough calming down, he got worse. Me being the worrier I am, after all this is one of my boys. I took him back to the vet.
With all our exercise, walking and looking slim the vet found a significant heart murmur.......
Not only a heart murmur, fluid was backing up into his lungs causing the cough. When I heard this a flood of teenage memories flooded my consciousness all at once
Then the vet handed me 2 packs of meds. One was a heart pill and the other was Lasix. OMG! I looked at the dosage of 12.5 mg and said : "Wow, I only took 25mgs at the most at my worst times and he's only 10 lbs.." I was then told DB was in crisis mode and we had to prevent the fluid from leaving his lungs and going into his heart.
Another flood... a major one... My sweet, little, holy terror was suffering from some of the complications I had endured for many years!
I then and there made a promise to God. I will spoil my little one even more, I will be protective, I will also give equal time to my other 2, and I will NOT lose my little Dibs.
Our walks are much slower now. This is difficult for me as thanks to Prednisone I run on Hyper mode constantly. We used to walk at around 2.5-3 mph. Now we meander and sniff every blade of grass and let the other brothers chase squirrels and lizards, and when he starts lagging behind and breathing heavy, he lets me know it's time for a ride in my arms.
Carrying him can be a major feat in itself while trying to control 2 other holy terrors!
A fellow crafter makes slings to carry babies with. She will be my next email. He will receive his very own custom designed carry all sling for walks.
Since the vet says this will only get worse, he deserves the best.
Memories like these hit us at the most unbelieveable times. We accept them, because they made us the survivors we are today. We learn from them, and they help us to help others facing the same crisis in their lives. I just never thought I would be helping my dog.
What are some of your memories???
Wednesday, August 5, 2009
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...
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...
Friday, July 31, 2009
Memories
I can still recall how my life transpired from 17- about 25. Before the ADA (Americans with Disabilities Act) anyone with a disability feared applying for a job. Even worse you were afraid to admit you had any form of medical issues. There were organizations that employed ONLY the disabled, so I tried one of those for a few months. It only took a few months long to realize:
1. I was not that disabled.
2. I would never achieve the few dreams I had left.
Sitting in a bare office, trying to tele-market light bulbs was not for me. It was great for those who truly needed it . Just not me. I guess this is why to this day I'm on the Do Not Call List.
I decided to try finding a job in my chosen field at that time: medical.
I went back to school and became a Medical Assistant, but symptoms began to show and it was difficult maintaining the low-pay, hectic office where I was at the time.
So I went back to work at the hospital and became a Pharmacy Technician. It was a slower pace, I was not in the public arena where germs ran rampant, and I had found my niche. For awhile.
I eventually took a job with the county health department which afforded me better benefits. It was at this point I began asking what the benefits were as opposed to negotiating a salary. I could always get a 2nd job to cover bills, BUT good health insurance coverage was mandatory.
It was also around this time I began to cough up blood. I think my cardiologist, David Chinoy MD (at the time) was going to have a coronary himself when I casually mentioned it during a visit.
I was quickly informed this was a major red flag!
From what I remember: the pressure gets so high in my heart and lungs that the arteries were bursting and I was coughing up fresh blood. He scared me to death when he mentioned I could eventually hemorrhage (?). I was also quickly becoming a CHF (congestive heart failure) patient with all the fluid build up happening in my heart. I still wonder to this day if he was doing this mainly to scare me into behaving. After all I was only in my early 20's and rebelling.
My rebellion is another story all in owns right, which I'll attempt on my next writing. Until then stay safe, stay healthy, and please don't be like I was -Listen to your doctor. After all it's your money you give them for your care.
1. I was not that disabled.
2. I would never achieve the few dreams I had left.
Sitting in a bare office, trying to tele-market light bulbs was not for me. It was great for those who truly needed it . Just not me. I guess this is why to this day I'm on the Do Not Call List.
I decided to try finding a job in my chosen field at that time: medical.
I went back to school and became a Medical Assistant, but symptoms began to show and it was difficult maintaining the low-pay, hectic office where I was at the time.
So I went back to work at the hospital and became a Pharmacy Technician. It was a slower pace, I was not in the public arena where germs ran rampant, and I had found my niche. For awhile.
I eventually took a job with the county health department which afforded me better benefits. It was at this point I began asking what the benefits were as opposed to negotiating a salary. I could always get a 2nd job to cover bills, BUT good health insurance coverage was mandatory.
It was also around this time I began to cough up blood. I think my cardiologist, David Chinoy MD (at the time) was going to have a coronary himself when I casually mentioned it during a visit.
I was quickly informed this was a major red flag!
From what I remember: the pressure gets so high in my heart and lungs that the arteries were bursting and I was coughing up fresh blood. He scared me to death when he mentioned I could eventually hemorrhage (?). I was also quickly becoming a CHF (congestive heart failure) patient with all the fluid build up happening in my heart. I still wonder to this day if he was doing this mainly to scare me into behaving. After all I was only in my early 20's and rebelling.
My rebellion is another story all in owns right, which I'll attempt on my next writing. Until then stay safe, stay healthy, and please don't be like I was -Listen to your doctor. After all it's your money you give them for your care.
Monday, July 27, 2009
Remembering Daddy
I've been absent from blogging for the past few days due to severe thunderstorms, but mainly because I was attempting to finish designing a Christmas ornament or Celebration.
My daddy passed away in 2005. Each year the funeral home holds a celebration on life around Christmas with each family placing an ornament on the tree in remembrance. Each year a new ornament is added along with ornaments from previous years.
This year is my turn to make the ornament.
This has taken much thought, mainly because :
1. I was Daddy's girl
2. I miss him more each and every day.
3. I wanted to honor him in the best way I knew how.
Here is the ornament I was finally able to finish....after much crying each time I tried to work on it.
Inside the card reads:
His favorite color-
Like his smiling eyes is blue
His heart-
Made of pure gold
His Faith- Unshakable
He placed everything in God's hands
His family-
Fragile and precious , like the finest crystal
The work on this piece- imperfect
Just like his "baby girl"
Loving husband, son, brother, uncle, grandpa, and even
a great...BUT
The most wonderful Daddy in the world
God truly broke the mold when he created you.
You are missed more with each passing day.
We Love you.
Just a reminder we all have to deal with difficult times. My daddy was there with me during my first 2 organ transplants. He was too ill to be with me for my kidney transplant. I made it through thoughts of previous transplants and him being with me, laughing. When I was discharged from the hospital to go home, he was admitted ( in a different city). I stressed if I would get to see him before he died and finally decided they could have my kidney-I HAD to see daddy again. He'd given me so much my entire life. I did see him in the nursing home a few weeks post transplant, he didn't know me. He died peacefuly in his sleep later that night. Immediately following his death I celebrated his life while others mourned his passing. My daddy was now free of hospitals, medicines, and being weak. Just as I've wanted to be my entire life. He was now whole again, enjoying that pair of wings he'd earned. Now is when I miss him, I mourn him, and I cry each time I think of his smiling face. His strength lives in me, I can survive. But oh how I wish I could have a daddy smile and hug.....
The story about "Pennies from heaven" is true. Each time I see a coin lying on the ground. I pick it up. Look to the clouds and say" Hi Daddy, I love you too."
Friday, July 24, 2009
Hearing the diagnosis for the first time
Wow! let me see this day was so long ago for me, but I can still remember parts of the day as if it were yesterday.
I was 17 and 2 months out of high school. (Yeah a lllooonnnnggg time ago) It was the end of July to be exact. I'd already started college in the summer, but decided I wanted to join the Navy. You know, follow in Dads footsteps. I wanted to be stationed aboard ship -a medical ship. I've always said I was born in the wrong era, I should've been a pirate. Swinging from the yard arm and brandishing a sword... That's me.
Anyway, back to the story, the recruiter told me women were not allowed aboard ship yet. (Yes I said it was a long time ago), however I did have enough college credits to join as a commissioned officer-plus my AFEEs test scores were high enough that I could be in Intelligence. WOW Intelligence! My vision did an about face and I now envisioned myself a spy. Black trench coat, dark RayBan sunglasses, stiletto heels, working under cover. What a life!
I only had to pass the physical........... Seven words, one sentence, that could have destroyed my life.
On physical day I was ready to sign on the dotted line. An X-ray showed an enlarged pulmonary artery. I was sent to a cardiologist to find out if I could make it through boot camp and join the Navy.
My Mom and an old long lost boyfriend met me at the cardiologists office. The words Mom and me heard still break my heart but are blurry. I had an Atrial Septal Defect (hole in the atrial chambers) in my heart and it was aggravating Pulmonary Hypertension. I was bluntly told I was lucky to have lived this long. Longer than predicted for those with this disease. The next words were "You'll be lucky to reach the age of 20, and you will NEVER have children."
Those grand visions I had of a great new life and world did a major crash and burn.
To make matters worse, after returning to the waiting room that long lost boyfriend pointed to a little girl and said "We'll have a girl just like you in a few years." Major crash and burn!
I rarely cried in front of my parents, but at this I completely lost it. I realize he had no idea, but it didn't stop the pain I felt. Being raised in a large family and feeling that children are our future and a Privilege- my world STOPPED.
The Navy still wanted me I found out, but there was no way to get me out of boot camp, so here I was: young, ready to change the world with no way to do it.
My parents were advised to get any necessary surgeries done before I was no longer on their insurance, but to also give me a little time to adjust to the news. We took a 2 month long vacation out west. Daddy customized their Chevy Van (yeah like the song). We had electricity, double bed, sinlge bed that also converted to a table, and headed out.
It was great for me except for visiting Pike's Peak. We went over the altitude I was told to stop at. I didn't know my daddy could drive so fast trying to get me down the mountain when I got sick. The result was a week long headache, saw The Grand Canyon from the van window, and learned a valuable lesson. Do what the doctor tells you to. Though I admit it took alot of tries and many gray hair on my parents heads for me to come to this comclusion.
I was 17 and 2 months out of high school. (Yeah a lllooonnnnggg time ago) It was the end of July to be exact. I'd already started college in the summer, but decided I wanted to join the Navy. You know, follow in Dads footsteps. I wanted to be stationed aboard ship -a medical ship. I've always said I was born in the wrong era, I should've been a pirate. Swinging from the yard arm and brandishing a sword... That's me.
Anyway, back to the story, the recruiter told me women were not allowed aboard ship yet. (Yes I said it was a long time ago), however I did have enough college credits to join as a commissioned officer-plus my AFEEs test scores were high enough that I could be in Intelligence. WOW Intelligence! My vision did an about face and I now envisioned myself a spy. Black trench coat, dark RayBan sunglasses, stiletto heels, working under cover. What a life!
I only had to pass the physical........... Seven words, one sentence, that could have destroyed my life.
On physical day I was ready to sign on the dotted line. An X-ray showed an enlarged pulmonary artery. I was sent to a cardiologist to find out if I could make it through boot camp and join the Navy.
My Mom and an old long lost boyfriend met me at the cardiologists office. The words Mom and me heard still break my heart but are blurry. I had an Atrial Septal Defect (hole in the atrial chambers) in my heart and it was aggravating Pulmonary Hypertension. I was bluntly told I was lucky to have lived this long. Longer than predicted for those with this disease. The next words were "You'll be lucky to reach the age of 20, and you will NEVER have children."
Those grand visions I had of a great new life and world did a major crash and burn.
To make matters worse, after returning to the waiting room that long lost boyfriend pointed to a little girl and said "We'll have a girl just like you in a few years." Major crash and burn!
I rarely cried in front of my parents, but at this I completely lost it. I realize he had no idea, but it didn't stop the pain I felt. Being raised in a large family and feeling that children are our future and a Privilege- my world STOPPED.
The Navy still wanted me I found out, but there was no way to get me out of boot camp, so here I was: young, ready to change the world with no way to do it.
My parents were advised to get any necessary surgeries done before I was no longer on their insurance, but to also give me a little time to adjust to the news. We took a 2 month long vacation out west. Daddy customized their Chevy Van (yeah like the song). We had electricity, double bed, sinlge bed that also converted to a table, and headed out.
It was great for me except for visiting Pike's Peak. We went over the altitude I was told to stop at. I didn't know my daddy could drive so fast trying to get me down the mountain when I got sick. The result was a week long headache, saw The Grand Canyon from the van window, and learned a valuable lesson. Do what the doctor tells you to. Though I admit it took alot of tries and many gray hair on my parents heads for me to come to this comclusion.
Wednesday, July 22, 2009
Welcoming a new day & ready to fight
Well I've done my morning routine medically speaking, walked our boys and now time to work on websites and web stores. I uploaded a link to my Etsy store, please give me feedback with any suggestions.
This morning I'm fuming about an article in the morning newspaper regarding our "NEW" healthcare reform. Apparently the "healthy" politicians don't think home health care is necessary anymore. Home health care is to be deleted from Medicare to help fund the new Universal healthcare for America. And just added into this healthcare plan is tax funding for abortions. I apologize in advance, but I've always felt that abortion is not a form of birth control. It has it's place, but not at the expense of the elderly and disabled.
I've written letters for the past 20 years about the lunacy of Medicare as it applies to the disabled. Now I have another reason to get on my soapbox today. I've fought for Medicare to help pay for home IV infusion supplies to no avail. Until the implementation of Part D (another joke) we had to pay for our IV meds as well. Now the only difference being the cost puts us in the coverage gap (black hole) and we pay full price anyway.
With regard to home health care, I prefer to do my own care without a nurse. I do my own dressing changes as well as IV infusion. I personally don't need anyone to take my blood pressure, heart rate, and temp another time since I already do it twice a day. And I certainly do NOT want to wait until they fit me into their schedule for the day. Add to all this: the only way Medicare will pay for home health care is if I am bed-ridden! Get real -another loophole for our government to not pay. Many who are disabled since childhood are NOT bed-ridden even though we need those IV's. Our IV site may be in a place where we cannot change the dressing, and we need assistance.
Regarding the retirees and disabled facing the end of their earthly time, then YES,YES,YES give them the comfort of home health care. Our healthy politicians must realize (and they will when finally facing their mortality) that shaky hands and weak legs MUST have assistance.
Try checking your blood sugar or giving yourself insulin when your so weak you can hardly hold the needle much less stick it in your stomach!
Another morning of writing emails, letters,and sending follow up faxes to my congressman and senators. I hope you will do the same. We need to stand together and show them we are a majority. If Universal healthcare is so great-let them join us in the program and drop the great healthcare plan they have now.
This morning I'm fuming about an article in the morning newspaper regarding our "NEW" healthcare reform. Apparently the "healthy" politicians don't think home health care is necessary anymore. Home health care is to be deleted from Medicare to help fund the new Universal healthcare for America. And just added into this healthcare plan is tax funding for abortions. I apologize in advance, but I've always felt that abortion is not a form of birth control. It has it's place, but not at the expense of the elderly and disabled.
I've written letters for the past 20 years about the lunacy of Medicare as it applies to the disabled. Now I have another reason to get on my soapbox today. I've fought for Medicare to help pay for home IV infusion supplies to no avail. Until the implementation of Part D (another joke) we had to pay for our IV meds as well. Now the only difference being the cost puts us in the coverage gap (black hole) and we pay full price anyway.
With regard to home health care, I prefer to do my own care without a nurse. I do my own dressing changes as well as IV infusion. I personally don't need anyone to take my blood pressure, heart rate, and temp another time since I already do it twice a day. And I certainly do NOT want to wait until they fit me into their schedule for the day. Add to all this: the only way Medicare will pay for home health care is if I am bed-ridden! Get real -another loophole for our government to not pay. Many who are disabled since childhood are NOT bed-ridden even though we need those IV's. Our IV site may be in a place where we cannot change the dressing, and we need assistance.
Regarding the retirees and disabled facing the end of their earthly time, then YES,YES,YES give them the comfort of home health care. Our healthy politicians must realize (and they will when finally facing their mortality) that shaky hands and weak legs MUST have assistance.
Try checking your blood sugar or giving yourself insulin when your so weak you can hardly hold the needle much less stick it in your stomach!
Another morning of writing emails, letters,and sending follow up faxes to my congressman and senators. I hope you will do the same. We need to stand together and show them we are a majority. If Universal healthcare is so great-let them join us in the program and drop the great healthcare plan they have now.
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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