I've recently posted a contest on my other blog I need a name -medieval or mythical for my little pendant. The best name given will win one of the pendants.
I'll be selling them at a Medieval Faire so this is why the medieval name.
I'd like to have something catchy that will attract both sexes. I seriously doubt a boy or man would buy nor wear a pendant titled: "Faerie Stones" even though I really like the name.
If you have a few moments please visit my blog and post your entry..you just might win..
Wednesday, January 27, 2010
Monday, January 25, 2010
Sunday, January 24, 2010
Morning is starting out great
I wanted to check my stores and email before getting ready for the Medieval Faire.
Well Comcast requested I change my port for my emails which caused ALL my messages to be sent to
Windows Mail. I like ONE email provider, not juggling 2.
Comcast assured me my messages would stay in Comcast.Not.
After sifting through them all I found one exciting email.
It was from a very nice Etsy artist telling me she had included my earrings in an Etsy Awareness Treasury!
I am psyched.
This is my first ever Treasury on Etsy, so my day went from frustrated to cloud Nine!
If you have a moment, please visit the Treasury and post a comment on the wonderful work all the artists have done. Awareness is for us all.
BTW...My design is the Sterling Silver Organ Donor Awareness Ribbon Earrings.
http://www.etsy.com/treasury_list.php?room_id=108005
You may need an Etsy account to post comments, it's free. If you prefer not to open one, viewing means alot too.
Thanks
Well Comcast requested I change my port for my emails which caused ALL my messages to be sent to
Windows Mail. I like ONE email provider, not juggling 2.
Comcast assured me my messages would stay in Comcast.Not.
After sifting through them all I found one exciting email.
It was from a very nice Etsy artist telling me she had included my earrings in an Etsy Awareness Treasury!
I am psyched.
This is my first ever Treasury on Etsy, so my day went from frustrated to cloud Nine!
If you have a moment, please visit the Treasury and post a comment on the wonderful work all the artists have done. Awareness is for us all.
BTW...My design is the Sterling Silver Organ Donor Awareness Ribbon Earrings.
http://www.etsy.com/treasury_list.php?room_id=108005
You may need an Etsy account to post comments, it's free. If you prefer not to open one, viewing means alot too.
Thanks
Monday, January 18, 2010
Hearts-broken and otherwise
Well this afternoon I get to wear a 24hour heart monitor. Yay :-(
This seems to be the thousandth time I've gotten one of these jewels and to date have shown nothing to be concerned about. I do have a fast heart rate at times. I mean who wouldn't after open heart surgery and a double lung transplant, a single left lung transplant, a kidney transplant, and a pacemaker implant. Oh and please take into consideration all those meds we love to take. Originally in 1991 after my first transplant I did have to take time and recover from the heart surgery. I had an atrial septal defect which had to be closed surgically at the same time as my lung transplant to be effective. I took Procardia for 6 months and then all was fine for quite a few years.
Then came time for the 2nd lung transplant and all the meds to curtail the chronic rejection. I was also very close to renal failure at the time. All this combined with the fact I was getting progressively weaker by the minute and wasting away wreaked havoc on my poor tired heart. I was once again placed on meds to control and slow my heart rate. Well, after the kidney transplant it was felt I didn't need to take the meds anymore so they were slowly weaned off. It took all of 6 months to prove how I needed them.
Being diabetic the first time my heart truly raced I was unsure if it was my blood sugar dropping or something else. I attritbute it to low blood sugar since I had the cold clammy sweat on the back of my neck, the horrible almost nauseaus feel in the pit of my stomeach, etc. We were at a Harley Davidson shop after enjoying a much needed bike ride. All at once I got these feelings and they were not abating. Seeing a small vending area with a few tables, I made a beeline for the coke machine and a table. I drank the coke and it didn't really help too much. By this time I was literally sweating bullets. I used evey napkin the little metal holder had on my table and then another table too. I was speechless at the amount of sweating since I rarely sweat. I was also sitting directly in front of the AC vent. Well, another coke later and a hot dog, I began to feel better, not like myself but better. So with that off we went on the bike and home. I never truly attributed this to my heart rate. Just a freak blood sugar occurrence. I now know better.
The next time was more vocal. I got up in the middle of the night to use the bathroom. I did as normal, walked into the bath, sat down, and promplty woke up on the floor. Not usual. We finally caught the culprit. Dr. Baz immediately set me up with Cardiology to find the reason . What they found was when my heart rate rose if they pressed on my neck it would slow down to normal. Well since I can't walk around with my hand on my neck except maybe in a vampire movie, we made arrangements for ablation. This ablation was for Ventricular tachycardia. It was for the lower chambers of my heart. Before this I also received a pacemaker, another story altogether, believe me.
After the ablation all was perfect. That is up until now. Now it appears my issue is with the Atrium, thus A-fib. I've been told this is more difficult to control with ablation, wow lucky me. Anyway as the story goes, last Thursday I was getting out of the recliner and my heart rate jumped from 51 beats per minute to 101. This may not seem like much to you but those darned butterflies that got trapped in my chest were beating like crazy to get out. Not to mention the slight nausea I had too. I immediately took one of my Metoprolol PRN tablets. I continued with preparing dinner, sweeping, etc. hoping my heart rate would slow down. Well it didn't. I decided to take another tablet before I went to bed around 10:00PM. I got a little sleep and woke in the middle of the night not wanting to get up. My heart rate felt slower and I didn't want to do anything to push it into hyper drive. I could feel it rise, then slow, rise, then slow as if it were trying to correct itself. I got up, took another tablet, checked the blood sugar-low again, ate some yogurt and settled into the recliner for a few hours. Friday morning it was at 85 but holding steady. I called the doctor and he decided on the heart monitor. After taking another tablet I am happy to say I've been at 51-55 heart beats per minute ever since. But I did have to take it easy for all of Friday. If this keeps happening it will seriously impede my exercise routine. After all, I'm scared to death to hop on the treadmill when I'm almost at target heart rate without trying!
Since this only happens about once a month I'm having trouble understanding why I need the monitor. I have a Pacemaker and it should show everything. At least I know it does when the nurse does a printout every 6 months. Why couldn't I just go into the office on Friday and them run a strip? I mean let's be serious if I only have this once a month, I've already had my turn, what's the monitor gonna show? I guess all this stems from the fact I really dread getting this darned thing. I'm allowed this feeling after all these years... Geez, I've earned it right... Oh well, resigned to the fact... Off I go to get wired...
BTW... As I told a good friend when we talked about this yesterday... This is NOT cunducive to a night of great sex nor will it make me feel that way either:-)
This seems to be the thousandth time I've gotten one of these jewels and to date have shown nothing to be concerned about. I do have a fast heart rate at times. I mean who wouldn't after open heart surgery and a double lung transplant, a single left lung transplant, a kidney transplant, and a pacemaker implant. Oh and please take into consideration all those meds we love to take. Originally in 1991 after my first transplant I did have to take time and recover from the heart surgery. I had an atrial septal defect which had to be closed surgically at the same time as my lung transplant to be effective. I took Procardia for 6 months and then all was fine for quite a few years.
Then came time for the 2nd lung transplant and all the meds to curtail the chronic rejection. I was also very close to renal failure at the time. All this combined with the fact I was getting progressively weaker by the minute and wasting away wreaked havoc on my poor tired heart. I was once again placed on meds to control and slow my heart rate. Well, after the kidney transplant it was felt I didn't need to take the meds anymore so they were slowly weaned off. It took all of 6 months to prove how I needed them.
Being diabetic the first time my heart truly raced I was unsure if it was my blood sugar dropping or something else. I attritbute it to low blood sugar since I had the cold clammy sweat on the back of my neck, the horrible almost nauseaus feel in the pit of my stomeach, etc. We were at a Harley Davidson shop after enjoying a much needed bike ride. All at once I got these feelings and they were not abating. Seeing a small vending area with a few tables, I made a beeline for the coke machine and a table. I drank the coke and it didn't really help too much. By this time I was literally sweating bullets. I used evey napkin the little metal holder had on my table and then another table too. I was speechless at the amount of sweating since I rarely sweat. I was also sitting directly in front of the AC vent. Well, another coke later and a hot dog, I began to feel better, not like myself but better. So with that off we went on the bike and home. I never truly attributed this to my heart rate. Just a freak blood sugar occurrence. I now know better.
The next time was more vocal. I got up in the middle of the night to use the bathroom. I did as normal, walked into the bath, sat down, and promplty woke up on the floor. Not usual. We finally caught the culprit. Dr. Baz immediately set me up with Cardiology to find the reason . What they found was when my heart rate rose if they pressed on my neck it would slow down to normal. Well since I can't walk around with my hand on my neck except maybe in a vampire movie, we made arrangements for ablation. This ablation was for Ventricular tachycardia. It was for the lower chambers of my heart. Before this I also received a pacemaker, another story altogether, believe me.
After the ablation all was perfect. That is up until now. Now it appears my issue is with the Atrium, thus A-fib. I've been told this is more difficult to control with ablation, wow lucky me. Anyway as the story goes, last Thursday I was getting out of the recliner and my heart rate jumped from 51 beats per minute to 101. This may not seem like much to you but those darned butterflies that got trapped in my chest were beating like crazy to get out. Not to mention the slight nausea I had too. I immediately took one of my Metoprolol PRN tablets. I continued with preparing dinner, sweeping, etc. hoping my heart rate would slow down. Well it didn't. I decided to take another tablet before I went to bed around 10:00PM. I got a little sleep and woke in the middle of the night not wanting to get up. My heart rate felt slower and I didn't want to do anything to push it into hyper drive. I could feel it rise, then slow, rise, then slow as if it were trying to correct itself. I got up, took another tablet, checked the blood sugar-low again, ate some yogurt and settled into the recliner for a few hours. Friday morning it was at 85 but holding steady. I called the doctor and he decided on the heart monitor. After taking another tablet I am happy to say I've been at 51-55 heart beats per minute ever since. But I did have to take it easy for all of Friday. If this keeps happening it will seriously impede my exercise routine. After all, I'm scared to death to hop on the treadmill when I'm almost at target heart rate without trying!
Since this only happens about once a month I'm having trouble understanding why I need the monitor. I have a Pacemaker and it should show everything. At least I know it does when the nurse does a printout every 6 months. Why couldn't I just go into the office on Friday and them run a strip? I mean let's be serious if I only have this once a month, I've already had my turn, what's the monitor gonna show? I guess all this stems from the fact I really dread getting this darned thing. I'm allowed this feeling after all these years... Geez, I've earned it right... Oh well, resigned to the fact... Off I go to get wired...
BTW... As I told a good friend when we talked about this yesterday... This is NOT cunducive to a night of great sex nor will it make me feel that way either:-)
Saturday, January 16, 2010
HANDBOOK FOR 2010
Health:
1. Drink plenty of water.
2. Eat breakfast like a king, lunch like a prince and dinner like a beggar.
3. Eat more foods that grow on trees and plants and eat less food that is manufactured in plants.
4. Live with the 3 E's -- Energy, Enthusiasm and Empathy
5. Make time to pray.
6. Play more games.
7. Read more books than you did in 2009. ( If only this were possible, I'd be financially broke)
8. Sit in silence for at least 10 minutes each day.
9. Sleep for 7 hours.
10. Take a 10-30 minute walk daily. And while you walk, smile.
Personality:
11. Don't compare your life to others. You have no idea what their journey is all about.
12. Don't have negative thoughts or things you cannot control. Instead invest your energy in the positive present moment.
13. Don't over-do. Keep your limits.
14. Don't take yourself so seriously. No one else does.
15. Don't waste your precious energy on gossip.
16. Dream more while you are awake than when you sleep.
17. Envy is a waste of time. You already have all you need.
18. Forget issues of the past. Don't remind your partner with His/her mistakes of the past.
That will ruin your present happiness.
19. Life is too short to waste time hating anyone. Don't hate others.
20. Make peace with your past so it won't spoil the present.
21. No one is in charge of your happiness except you.
22. Realize that life is a school and you are here to learn. Problems are simply part of the curriculum that appear & fades away like algebra class but the lessons you learn will last a lifetime.
23. Smile and laugh more.
24. You don't have to win every argument. Agree to disagree.....
Society:
25. Call your family often. 26. Each day give something good to others.
27. Forgive everyone for everything.
28. Spend time w/ people over the age of 70 & under the age of 6.
29. Try to make at least three people smile each day.
30. What other people think of you is none of your business.
31. Your job won't take care of you when you are sick. Your friends will. Stay in touch.
Life:
32. Do the right thing! 33. Get rid of anything that isn't useful, beautiful or joyful.
34. GOD heals everything.
35. However good or bad a situation is; it will change...
36. No matter how you feel, get up, dress up and show up.
37. The best is yet to come.
38. When you wake up in the morning, thank GOD that you are alive. ( most definitely !)
39. Your inner most is always happy. So, be happy.
Tuesday, January 12, 2010
Birthdays..How many do you have?
Many of you may think this a strange question. As for me, not at all. As I sit here with an excruciatingly painful toothache I've pondered this question.
On January 1st of this year a friend came by to celebrate her 50th birthday with us. I grilled chicken outside with shrimp scampi as an appetizer. And yes, we were able to grill outside on our one warm day before the unbelieveable cold hit Florida. As a joke I made a banner that read "Happy 21st Anniversary of your 29th Birthday". As we age we seem to try and forget the most important day of our lives. In fact it is really the only day that matters, for without it we would cease to exist.
As for me, I celebrate 5 birthdays. Yes my biological birthday is very important, but so are my transplant birthdays of which there are 3, plus my donor Susie (the only one I know). Many prefer to call their transplant birthday their anniversary, which has little logic for me. After all wasn't I given the Gift of Life?
If not for those transplants I would not be alive writing this today. Those who've had an organ transplant, know the emotions that go hand in hand with being a recipient. This Gift of Life can turn the hardest person into emotional mush. I can say this with clarity, because I was afraid of nothing before my first transplant. If my car broke down on a dark road, I'd walk home (this was before cell phones). Now, no way would I do this and so foolishly run the risk of my donor families hearing I took this chance with what I was given.
I remember a newspaper article that ws done on me in 1991 post transplant. In this article I stated I intended to enjoy each and every wrinkle and grey hair I get. So far so good. I' getting them. I'm tolerating them. I'm not doing anything about them. I will age gracefully with all my scars, wrinkles and grey hair completely intact.
Now that this is written I can decide which will be more excruciating. The toothache or the cost of the antibiotics to make it go away.. Either way I will feel the pain, believe me.
By the way... My friend dropped me a thank you card for her celebratory dinner. She thanked me for making her "29th Anniversary of her 21st Birthday" so much fun.. Guess she wanted to be younger still
On January 1st of this year a friend came by to celebrate her 50th birthday with us. I grilled chicken outside with shrimp scampi as an appetizer. And yes, we were able to grill outside on our one warm day before the unbelieveable cold hit Florida. As a joke I made a banner that read "Happy 21st Anniversary of your 29th Birthday". As we age we seem to try and forget the most important day of our lives. In fact it is really the only day that matters, for without it we would cease to exist.
As for me, I celebrate 5 birthdays. Yes my biological birthday is very important, but so are my transplant birthdays of which there are 3, plus my donor Susie (the only one I know). Many prefer to call their transplant birthday their anniversary, which has little logic for me. After all wasn't I given the Gift of Life?
If not for those transplants I would not be alive writing this today. Those who've had an organ transplant, know the emotions that go hand in hand with being a recipient. This Gift of Life can turn the hardest person into emotional mush. I can say this with clarity, because I was afraid of nothing before my first transplant. If my car broke down on a dark road, I'd walk home (this was before cell phones). Now, no way would I do this and so foolishly run the risk of my donor families hearing I took this chance with what I was given.
I remember a newspaper article that ws done on me in 1991 post transplant. In this article I stated I intended to enjoy each and every wrinkle and grey hair I get. So far so good. I' getting them. I'm tolerating them. I'm not doing anything about them. I will age gracefully with all my scars, wrinkles and grey hair completely intact.
Now that this is written I can decide which will be more excruciating. The toothache or the cost of the antibiotics to make it go away.. Either way I will feel the pain, believe me.
By the way... My friend dropped me a thank you card for her celebratory dinner. She thanked me for making her "29th Anniversary of her 21st Birthday" so much fun.. Guess she wanted to be younger still
Thursday, January 7, 2010
What Organ donation means to me
OK, so here I go.
After long thought, this is what organ donation means to me.
1.It means no more oxygen (at least for awhile)
2.No more meandering just to breathe, I CAN walk at a decent pace, and most of the time faster than others!
3. No more blue fingers, lips, or under my eyes.
4. No more Procrit shots weekly.
5. No more food lists.
6. I can have potassium & phosphorus in my foods now. (They're good for me again.)
7. Bright sunny days NO matter what the weather.
8. Helping inspire others facing the same health issues.
9. Walk my 4-legged boys twice a day.
10. Enjoy summertime, beaches, picnics,etc without struggling to breathe.
11. Wash my face. (those who know me, know why)
12. If I take a 2 hour shower it's because I want to, not because it takes that long trying to breathe to finish.
13. Celebrate another Christmas in Key West.
14. Spread the word about the importance of making sure everyone gets another chance like me.
15. No more swollen ankles
16. No more compression hose!
17. No more wheelchair !!!!!
18. No nebulizer.
19. Fantastic blood pressure.
20. Life, love, enthusiasm ,dreams, goals.
21. The undeniable proof that there are strangers in our lives who become our saving angels.
After long thought, this is what organ donation means to me.
1.It means no more oxygen (at least for awhile)
2.No more meandering just to breathe, I CAN walk at a decent pace, and most of the time faster than others!
3. No more blue fingers, lips, or under my eyes.
4. No more Procrit shots weekly.
5. No more food lists.
6. I can have potassium & phosphorus in my foods now. (They're good for me again.)
7. Bright sunny days NO matter what the weather.
8. Helping inspire others facing the same health issues.
9. Walk my 4-legged boys twice a day.
10. Enjoy summertime, beaches, picnics,etc without struggling to breathe.
11. Wash my face. (those who know me, know why)
12. If I take a 2 hour shower it's because I want to, not because it takes that long trying to breathe to finish.
13. Celebrate another Christmas in Key West.
14. Spread the word about the importance of making sure everyone gets another chance like me.
15. No more swollen ankles
16. No more compression hose!
17. No more wheelchair !!!!!
18. No nebulizer.
19. Fantastic blood pressure.
20. Life, love, enthusiasm ,dreams, goals.
21. The undeniable proof that there are strangers in our lives who become our saving angels.
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.
Wednesday, December 23, 2009
Tuesday, December 22, 2009
A New Approach to Organ Donation-The New York Times
Here is an extremely informative article on a new yet controversial procedure. Brain death vs Cardiac death
http://www.nytimes.com/2009/12/20/magazine/20organ-t.html?pagewanted=1&_r=2&emc=eta1
http://www.nytimes.com/2009/12/20/magazine/20organ-t.html?pagewanted=1&_r=2&emc=eta1
Wednesday, December 16, 2009
December 16,2009
As I was looking through old photos I came across the above photo from "my past life". As I looked at the picture I thought, "Who is this girl, or better yet Where did she go?" What you don't see in the photo, is the fun-loving, nary a care in the world kinda person. The business suits and heels kinda girl. The goal achieveing person in life. Somewhere soon after this photo I forgot how to dream. When your facing the end of your life, dreaming seems fruitless.
This made me think, of how outside influences change us into people old friends wouldn't recognize.
Of course they see the original person they knew inside, only we seem to have lost sight of that person.
This picture was before I was listed for my first transplant. I was living my life basically my way, working, being with friends from work, going to the beach, enjoying it. But, there were things those old friends never knew.... I was sleeping with oxygen every night, close to being on it 24/7. Work was only to keep health insurance and so exhausting I struggled to make it through each day. The chest pain from struggling to breathe throughout the day, was so bad I needed something for pain so I could sleep at night. I knew what was coming quickly in my future. My lungs were deteriorating and a transplant was getting close. Tragic moments like this make us grow up and mature far too quickly. We react in the only way we know how. Try to maintain a semblance of normalcy and acceptance so everyone else doesn't freak out over your situation. My friends from work were handling my health worse than I was and my concern was for them. One in particular, Vicki made the statement: "You know out of all of my friends I never thought God would take you first." Thankfully He decided I was/am still a work in progress and has allowed me to stay a little longer than predicted.
Looking at this picture I realize I miss the old life. I was confident, and energetic in all aspects of my life mentally. How do we find that person again? That one before health issues changed us into a mechanical version of ourselves? Am I afraid everyone around me would think I've finally lost it, if I started acting like "who I really am"? Probably some, most definitley others. My students wouldn't blink an eye, they've witnessed this side of me during class. My friend Debbie? no. She brought out my old side too many times when we were on a girls day out. I would love to bring out this person all the time, but how? It's been close to 20 years since I was per se "me" all the time.
"Me" somehow got lost in hospitals, doctor offices, hospitals (too many holidays spent there), medications, wheelchairs (trying to walk again), chronic rejection, surgeries,etc. The real me seems to come out as a defense when I'm concerned or fearful about my future. Sort of "let's live each minute as if it were our last" type of situation. Even though I try to live my life this way each day, I do it for my donors and their families. Now I have to remember how to do it for "me" as well. This way I honor them more than I already am.
I hope this has helped a few of you find your own "me" deep inside and is preparing to let it free. I am.
Monday, December 14, 2009
26 Operations-13 kidneys
This was in todays newspaper. It is one inspiringly hopeful story!
26 operations, 13 kidneys: hope to few with little
By LAURAN NEERGAARD
AP Medical Writer
Published: Monday, December 14, 2009 at 3:17 a.m.
Last Modified: Monday, December 14, 2009 at 3:17 a.m.
WASHINGTON - Twenty-six operations put healthy kidneys into 13 desperately ill people: Doctors in the nation's capital just performed a record-setting kidney swap, part of a pioneering effort to expand transplants to patients who too often never qualify.
Read the entire story at:
http://www.heraldtribune.com/article/20091214/APW/912140514
26 operations, 13 kidneys: hope to few with little
By LAURAN NEERGAARD
AP Medical Writer
Published: Monday, December 14, 2009 at 3:17 a.m.
Last Modified: Monday, December 14, 2009 at 3:17 a.m.
WASHINGTON - Twenty-six operations put healthy kidneys into 13 desperately ill people: Doctors in the nation's capital just performed a record-setting kidney swap, part of a pioneering effort to expand transplants to patients who too often never qualify.
Read the entire story at:
http://www.heraldtribune.com/article/20091214/APW/912140514
Saturday, December 5, 2009
Thoroughly disgusted with CBS
I just received this in an email from DonateLife Hollywood...
Can a single TV show actually save lives? "Three Rivers," a CBS prime-time series on donation and transplantation, did. Sadly, that remarkable fact was not enough to save itself.
As the donation and transplantation community mourns the premature shelving of "Three Rivers," we stand in awe of its achievements. A month ago, a San Antonio, Texas, family donated the corneas of a loved one who had passed away. They said yes because they wanted their family member to help others, just like on "Three Rivers."
Two weeks later, a family on the East Coast donated the organs of their teenage daughter because she had talked to them about donation after watching "Three Rivers" on a Sunday night.
On Thanksgiving weekend, a daughter in Louisiana gave consent for her mother to save three lives. She too was a fan of "Three Rivers," and the coordinator was impressed by how much the family knew about the donation process from watching the show.
For years, the organ and tissue donation community held its breath every time donation was used as a television storyline. Inaccurate and horrific scenarios about black markets and stolen organs made us initiate letter-writing campaigns; even worse, research showed it kept viewers from signing up to be donors.
Finally, one show got it right. "Three Rivers" viewers got something extra with their nightly fare of drama: They had a chance to learn the truth about donation and were challenged to talk about a topic families rarely wish to discuss - death and their wishes at end of life.
Please, take a moment and let CBS know what you think of this illogical decision to cut Three Rivers TV show.
Can a single TV show actually save lives? "Three Rivers," a CBS prime-time series on donation and transplantation, did. Sadly, that remarkable fact was not enough to save itself.
As the donation and transplantation community mourns the premature shelving of "Three Rivers," we stand in awe of its achievements. A month ago, a San Antonio, Texas, family donated the corneas of a loved one who had passed away. They said yes because they wanted their family member to help others, just like on "Three Rivers."
Two weeks later, a family on the East Coast donated the organs of their teenage daughter because she had talked to them about donation after watching "Three Rivers" on a Sunday night.
On Thanksgiving weekend, a daughter in Louisiana gave consent for her mother to save three lives. She too was a fan of "Three Rivers," and the coordinator was impressed by how much the family knew about the donation process from watching the show.
For years, the organ and tissue donation community held its breath every time donation was used as a television storyline. Inaccurate and horrific scenarios about black markets and stolen organs made us initiate letter-writing campaigns; even worse, research showed it kept viewers from signing up to be donors.
Finally, one show got it right. "Three Rivers" viewers got something extra with their nightly fare of drama: They had a chance to learn the truth about donation and were challenged to talk about a topic families rarely wish to discuss - death and their wishes at end of life.
Please, take a moment and let CBS know what you think of this illogical decision to cut Three Rivers TV show.
Tuesday, December 1, 2009
The Holiday season has officially begun
I'm finally home from Jacksonville and spending Thanksgiving with my family. I wanted to show everyone what I saw on Thursday morning two weeks ago.
I opened the front door to walk out and get the newspaper, when I felt a warm glow. The warm bath of golden sunlight seemed surreal in this area, and something I've never seen before. The entire driveway was a golden hue. Looking up to the east I saw the most wonderful sight. The sky was a gorgeous mix of golds and reds, with a heart warming glow in the clouds.This seemed more like a sunset not a sunrise. I looked to the south east and to another beautiful display. I hurriedly ran inside praying my camera was charged and it wouldn 't disappear in a "poof" before I got a photo.
Without thinking, sights such as this remind us non-verbally what no one can tell us. We are Blessed. If not for our organ donors and theier families, I would never have been granted such a glorious morning.
Yes my camera worked, and yes each time I see these 2 photos I remember that wonderfully warm feeling (warm fuzzies) I felt that day. May you be granted this chance, and memories too.
I opened the front door to walk out and get the newspaper, when I felt a warm glow. The warm bath of golden sunlight seemed surreal in this area, and something I've never seen before. The entire driveway was a golden hue. Looking up to the east I saw the most wonderful sight. The sky was a gorgeous mix of golds and reds, with a heart warming glow in the clouds.This seemed more like a sunset not a sunrise. I looked to the south east and to another beautiful display. I hurriedly ran inside praying my camera was charged and it wouldn 't disappear in a "poof" before I got a photo.
Without thinking, sights such as this remind us non-verbally what no one can tell us. We are Blessed. If not for our organ donors and theier families, I would never have been granted such a glorious morning.
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.
Sunday, November 15, 2009
A Blessed Weekend
Well we are in the last day of National Donor Sabbath Weekend. I am also celebrating 7 years with my second lung transplant today. It was 7 years ago on a Friday morning when my call came in. I had just returned from a trip to Shands in Gainesville and discussed my Advanced Directive, knowing I had minimal time left to live. The phone rang in the middle of the night. You always get an ominous feeling when the phone rings at night. Something has happened, or a loved one is sick.
Somehow I knew this was my call. I was the one sick, but with Gods' blessing and Shands hospital this might change. I remember waking my parents who were visiting at the time and everyone seemed to launch into hyper-drive. Everyone that is, except me. I didn't have the energy, stamina or strength to try. As I watched my parents rush around to get ready for the 2.5 hour drive I began to have doubts. I knew my physical strength was gone, it'd been the longest 2 years of my life, and I wasn't sure I would make the surgery. I also didn't want to waste a precious lung on someone who might not make it, when the lung could go to someone with a better chance than me. As Mom came in to give me a hug (somehow she knew I was having doubts), I asked her if she thought I could make it. This was probably the first time but most definitely the last time my parents would see my resolve falter. I remember she looked at me with all the love in her eyes and said " You can make it through anything, you're strong". Of course she'd say this, after all she's a mother. But , she was referring to my mental strength, while I was worried about my physical strength.
I'd been through this before, but this time my endurance was nowhere near what it was in 1991. Chronic rejection is much worse than Pulmonary Hypertension could ever be. Chronic rejection is tough to endure. It was the biggest test of life I have ever had to endure, and pray to never endure again. Though I know I will endure it at some point. I hope to make it as far in the future as humanly possible.
While I was questioning myself, I remembered it was the start of National Donor Sabbath Weekend. Surely, this is a sign that this transplant was meant to be. With all my doubts I had to at least give it my best shot at success. So off to Gainesville we band of merry men started.
The holding area was a beehive of activity. I was introduced to my surgeon Dr. Staples. Yes, this is his real name. I made the off the wall comment, " and you use staples right?" This was my way of releiving some tension. I then met his wife, so I now had Staples & Staples MD... Sounds kinda cool huh? It was during the wait process I discovered he was concerned with doing my transplant because I had lost down to 90lbs.! Wow, and my scale said I was at 100 lbs. it had been difficult to keep weight on at this point, since I was using all my calories to breathe. I had long ago consciously made the choice between eating or breathing. breathing was mandatory- eating optional. Thankfully the decision was to go ahead with the transplant.
So today, as they say 7 years later- the rest is history.
Remember : Be a Miracle in someone's life, Become an organ or tissue donor.
Somehow I knew this was my call. I was the one sick, but with Gods' blessing and Shands hospital this might change. I remember waking my parents who were visiting at the time and everyone seemed to launch into hyper-drive. Everyone that is, except me. I didn't have the energy, stamina or strength to try. As I watched my parents rush around to get ready for the 2.5 hour drive I began to have doubts. I knew my physical strength was gone, it'd been the longest 2 years of my life, and I wasn't sure I would make the surgery. I also didn't want to waste a precious lung on someone who might not make it, when the lung could go to someone with a better chance than me. As Mom came in to give me a hug (somehow she knew I was having doubts), I asked her if she thought I could make it. This was probably the first time but most definitely the last time my parents would see my resolve falter. I remember she looked at me with all the love in her eyes and said " You can make it through anything, you're strong". Of course she'd say this, after all she's a mother. But , she was referring to my mental strength, while I was worried about my physical strength.
I'd been through this before, but this time my endurance was nowhere near what it was in 1991. Chronic rejection is much worse than Pulmonary Hypertension could ever be. Chronic rejection is tough to endure. It was the biggest test of life I have ever had to endure, and pray to never endure again. Though I know I will endure it at some point. I hope to make it as far in the future as humanly possible.
While I was questioning myself, I remembered it was the start of National Donor Sabbath Weekend. Surely, this is a sign that this transplant was meant to be. With all my doubts I had to at least give it my best shot at success. So off to Gainesville we band of merry men started.
The holding area was a beehive of activity. I was introduced to my surgeon Dr. Staples. Yes, this is his real name. I made the off the wall comment, " and you use staples right?" This was my way of releiving some tension. I then met his wife, so I now had Staples & Staples MD... Sounds kinda cool huh? It was during the wait process I discovered he was concerned with doing my transplant because I had lost down to 90lbs.! Wow, and my scale said I was at 100 lbs. it had been difficult to keep weight on at this point, since I was using all my calories to breathe. I had long ago consciously made the choice between eating or breathing. breathing was mandatory- eating optional. Thankfully the decision was to go ahead with the transplant.
So today, as they say 7 years later- the rest is history.
Remember : Be a Miracle in someone's life, Become an organ or tissue donor.
Friday, November 13, 2009
This weekend
Today November 13-15,2009 begins National Donor Sabbath Weekend. Being a 3-time transplant recipient. All my online stores & the Christmas Bazaar at the Cultural Center will offer 10% donation of all sales Friday & Sunday, 100% on Saturday will be donated to The Florida Foundation for Lung Transplant Research. Please spread the word and join me in honoring my 3 organ donors and their families.
Tuesday, November 10, 2009
A little holiday help
I just received an email with a website that many of us could use in these economic times.
http://www.angelfoodministries.com/
You can enter you zip code to find the one closest to you.
I looked at it and found some really decent food buys. From what I can gather it's open to everyone.
I'm seriously checking out the Thanksgiving dinner package.. It would save me alot of shopping!
http://www.angelfoodministries.com/
You can enter you zip code to find the one closest to you.
I looked at it and found some really decent food buys. From what I can gather it's open to everyone.
I'm seriously checking out the Thanksgiving dinner package.. It would save me alot of shopping!
Sunday, November 8, 2009
Prograf vs Cyclosporine both a necessary evil
I was fondly remembering by experiences with both Prograf and Cyclosporine. In 1991 for my 1st transplant,lung transplant recipients were not given Prograf. Only kidney and liver reccipients and a few hearts. My Cyclosporine was a liquid dose that had to be mixed with a liquid. NOT water, the taste was horrendous.
Driving from Pittsburgh to Jacksonville, Fl provided a few laughs along the way. I wanted to see life again-not fly- so we drove. I had a Hickman IV because I was in a study (yes the importance of reseach) regarding Gancyclovir vs Acyclovir. I would give myself an IV for 90 days. Stopping at restaurant was the first of my revelations. I asked for a small glass (shot size) of either milk or juice. The look on the waitress's face was incredulous. Why would anyone want a small shot glass of milk or juice? When she brought it, the other patrons stared at me in horror as they watched me draw up a syringe of liquid from a bottle, put it in with the milk, stir it up and at the speed of light drink it. Looking at my parents I remember laughing and saying "What do they think I am, a drug addict? As if I'd do all this in public if I was." If they only knew how horrible Cyclosporine tasted...
At the hotel we had to change the dressing on my IV site. Upon leaving in the morning I again laughed realizing the maid would probably think whoever left this room was probably suffering from a gun shot would. We did leave alot of bloody gauze bandages behind in the trash. Put that with all the unit dose empty packs of meds, and I just know she knew it was a drug bust gone bad. Since this I've often wondered how others viewd the life of a transplant recipient.
Cyclosporine also had one rule. Do not take it straight. I found out why. I was at work and realized someone had taken my bottle of juice from the fridge for themselves. CARDINAL RULE : LEAVE ANOTHER PERSONS JUICE ALONE! You never know what they might need it for. My only option was to shoot it straight from th syringe. I counted to 10, held my breathe and pushed the plunger.
OMG!!! YUCK!!! Now I know why we're told to take it with other fluids. To this day it boggles my mind trying to figure out why they cannot make these meds taste better. they've been around forever.
I was told I couldn't have Prograf when I later asked because switching might cause cancer. Geez I was immunosuppressed anyway don't I still this chance? Yep, only mine has been pre-skin cancer. It was during chrinic rejection when I again asked this same question. After 30 days in Pittsburgh for thymo treatments I was told I was being put on Prograf. I asked, "but can't this cause cancer?" This time i was told yes, but at this point you're dying anyway" Well, I guess they're right on that one. Chronic rejection is a royal pain. Been there, done that, don't wanna again.
so now I'm on Prograf which helps control chronic rejection better than the cyclo. Lung transplant wise. Kidney transplant would rather put me back on the Cyclo. Thank you Dr. Baz.
Cyclosporine now comes in capsule form. One very large horse pill and one very small shetlad pony pill, 100mg and 25mg.
So if your dosage is 175mg you end up taking 4 pills. I remember I was told at one time that the pills smelled like horse sweat.
To which I sweetly replied, "How do you know what horse sweat smells like?" At last they didn't taste like it.Not that I'd know.
Prograf is the same. 1mg or 5mg, so I now take 3 tiny capsules twice a day. Amazing,Cyclosporine was 175mg twice a day and Prograf is 3mg twice a day. Wow those tiny little capsules pack one heckuva punch.
Driving from Pittsburgh to Jacksonville, Fl provided a few laughs along the way. I wanted to see life again-not fly- so we drove. I had a Hickman IV because I was in a study (yes the importance of reseach) regarding Gancyclovir vs Acyclovir. I would give myself an IV for 90 days. Stopping at restaurant was the first of my revelations. I asked for a small glass (shot size) of either milk or juice. The look on the waitress's face was incredulous. Why would anyone want a small shot glass of milk or juice? When she brought it, the other patrons stared at me in horror as they watched me draw up a syringe of liquid from a bottle, put it in with the milk, stir it up and at the speed of light drink it. Looking at my parents I remember laughing and saying "What do they think I am, a drug addict? As if I'd do all this in public if I was." If they only knew how horrible Cyclosporine tasted...
At the hotel we had to change the dressing on my IV site. Upon leaving in the morning I again laughed realizing the maid would probably think whoever left this room was probably suffering from a gun shot would. We did leave alot of bloody gauze bandages behind in the trash. Put that with all the unit dose empty packs of meds, and I just know she knew it was a drug bust gone bad. Since this I've often wondered how others viewd the life of a transplant recipient.
Cyclosporine also had one rule. Do not take it straight. I found out why. I was at work and realized someone had taken my bottle of juice from the fridge for themselves. CARDINAL RULE : LEAVE ANOTHER PERSONS JUICE ALONE! You never know what they might need it for. My only option was to shoot it straight from th syringe. I counted to 10, held my breathe and pushed the plunger.
OMG!!! YUCK!!! Now I know why we're told to take it with other fluids. To this day it boggles my mind trying to figure out why they cannot make these meds taste better. they've been around forever.
I was told I couldn't have Prograf when I later asked because switching might cause cancer. Geez I was immunosuppressed anyway don't I still this chance? Yep, only mine has been pre-skin cancer. It was during chrinic rejection when I again asked this same question. After 30 days in Pittsburgh for thymo treatments I was told I was being put on Prograf. I asked, "but can't this cause cancer?" This time i was told yes, but at this point you're dying anyway" Well, I guess they're right on that one. Chronic rejection is a royal pain. Been there, done that, don't wanna again.
so now I'm on Prograf which helps control chronic rejection better than the cyclo. Lung transplant wise. Kidney transplant would rather put me back on the Cyclo. Thank you Dr. Baz.
Cyclosporine now comes in capsule form. One very large horse pill and one very small shetlad pony pill, 100mg and 25mg.
So if your dosage is 175mg you end up taking 4 pills. I remember I was told at one time that the pills smelled like horse sweat.
To which I sweetly replied, "How do you know what horse sweat smells like?" At last they didn't taste like it.Not that I'd know.
Prograf is the same. 1mg or 5mg, so I now take 3 tiny capsules twice a day. Amazing,Cyclosporine was 175mg twice a day and Prograf is 3mg twice a day. Wow those tiny little capsules pack one heckuva punch.
Thursday, November 5, 2009
Doing great!
Well I'm doing great for a recipient. Not complaining. It only gets worse if we do.
The pain in my left side has lessened, leading us to believe it is fractured ribs from coughing.
I have a few new aches though. My right ankle wants to rebel on my walks. Couldn't it do this when I have to clean the house? I continue to walk, just a little slower until it goes away.
Insulin is doing great. The Endocrinologist is happy with the results-just not with me doing it and telling him later. It would be easier if doctors offices were easier to get in touch with, no answering machines and waiting 24-48 hours for a response. I miss the days of old fashioned doctors offices. You know, when I was a person not a patient and my phone calls mattered enough to not send me to a machine. I realize this can't happen with a transplant center, they have way too many sick patients to answer each and every call personally. Even though I must say that everytime I'm prepared to leave a message, Melissa answers the phone and throws me off track. She's such a wonderful coordinator.
The endo discovered I have alot of sinus drainage we need to take care of immediately. He asked me if I'd ever taken antibiotics. LMAO......! Me ? No-never. I told him Dr. Baz prefers Levacquin and he wrote a script for Zithromax. I knew what Melissa would do, so I just called her and she called in the Levacquin. We could save so much paper if we were listened to. But I also know that I'm a "scary" proposition for most physicians. Just not Shands Lung transplant. I'm just another recipient. Thank goodness for that.
Being alone for a few days me & the boys are gonna have a great time! I've got the dining table set up for "design time" and they get to relax. I'm taking a class on Medieval history so gonna work on that a little, make a few pendants, take more photos and then take a nap.
Hey, we all need our nap time..
The pain in my left side has lessened, leading us to believe it is fractured ribs from coughing.
I have a few new aches though. My right ankle wants to rebel on my walks. Couldn't it do this when I have to clean the house? I continue to walk, just a little slower until it goes away.
Insulin is doing great. The Endocrinologist is happy with the results-just not with me doing it and telling him later. It would be easier if doctors offices were easier to get in touch with, no answering machines and waiting 24-48 hours for a response. I miss the days of old fashioned doctors offices. You know, when I was a person not a patient and my phone calls mattered enough to not send me to a machine. I realize this can't happen with a transplant center, they have way too many sick patients to answer each and every call personally. Even though I must say that everytime I'm prepared to leave a message, Melissa answers the phone and throws me off track. She's such a wonderful coordinator.
The endo discovered I have alot of sinus drainage we need to take care of immediately. He asked me if I'd ever taken antibiotics. LMAO......! Me ? No-never. I told him Dr. Baz prefers Levacquin and he wrote a script for Zithromax. I knew what Melissa would do, so I just called her and she called in the Levacquin. We could save so much paper if we were listened to. But I also know that I'm a "scary" proposition for most physicians. Just not Shands Lung transplant. I'm just another recipient. Thank goodness for that.
Being alone for a few days me & the boys are gonna have a great time! I've got the dining table set up for "design time" and they get to relax. I'm taking a class on Medieval history so gonna work on that a little, make a few pendants, take more photos and then take a nap.
Hey, we all need our nap time..
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