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
Monday, December 14, 2009
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..
Tuesday, October 27, 2009
Insulin results
Sorry no post yesterday, Hubby surprised me with a trip to the beach. Motor home, boys and me all on the road for a day.The beach at Nokomis was beautiful. A sunny 87 degrees and a beautiful Gulf breeze.
My blood sugar has been doing great in my experiment. The first day it was kinda wonky ( a new word of mine) but still in range. As of yesterday it started to level off and stay where I wanted it :80-90 range.
Now I actually feel hungry as the insulin starts lowering the blood sugar. My weight has started to decrease as well... YAY!! I'm able to eat the type of foods I like and keep my blood sugar in range. I'm a healthy eater, love fish, chicken, veggies and fruit so this also helps keep everything ok.
We went out last Friday night for fish and Larry wanted to share a platter. I should have known better. It was a fried platter and I even commented that it had too much batter and not enough seafood. This should have been my first clue. Three hours later my blood sugar reading at bedtime was a whopping 175! This did not sit well with me. I decided there and then that I would take back control.
Along with the diet, I've incorporated more exercise. I now walk more in the morning as well as the evening. Our days are less humid and we're now getting the Gulf trade winds so walking is enjoyable instead of a chore. My lil guy DB loves it too. He's a big concern with the heart problem, so he's getting his heart walks too. This along with writing down my calories/fat content at each meal and a final tally for the day help me understand just where I need to tighten the belt so to speak.
I still have the pain in my left side, hopeful it's fractured ribs and not something more serious and today my right ankle is extremely painful. I've said many times I live with some sort of pain each day, now I guess it'll be a few pains each day. Still walked, still did laundry and cooking. If I'm going to be in pain, I intend to have a darn good reason for it.
My blood sugar has been doing great in my experiment. The first day it was kinda wonky ( a new word of mine) but still in range. As of yesterday it started to level off and stay where I wanted it :80-90 range.
Now I actually feel hungry as the insulin starts lowering the blood sugar. My weight has started to decrease as well... YAY!! I'm able to eat the type of foods I like and keep my blood sugar in range. I'm a healthy eater, love fish, chicken, veggies and fruit so this also helps keep everything ok.
We went out last Friday night for fish and Larry wanted to share a platter. I should have known better. It was a fried platter and I even commented that it had too much batter and not enough seafood. This should have been my first clue. Three hours later my blood sugar reading at bedtime was a whopping 175! This did not sit well with me. I decided there and then that I would take back control.
Along with the diet, I've incorporated more exercise. I now walk more in the morning as well as the evening. Our days are less humid and we're now getting the Gulf trade winds so walking is enjoyable instead of a chore. My lil guy DB loves it too. He's a big concern with the heart problem, so he's getting his heart walks too. This along with writing down my calories/fat content at each meal and a final tally for the day help me understand just where I need to tighten the belt so to speak.
I still have the pain in my left side, hopeful it's fractured ribs and not something more serious and today my right ankle is extremely painful. I've said many times I live with some sort of pain each day, now I guess it'll be a few pains each day. Still walked, still did laundry and cooking. If I'm going to be in pain, I intend to have a darn good reason for it.
Sunday, October 25, 2009
Ain't it nifty???
I've actually hit fifty! The big 5-0, book em Dano. Oh No 50!
Yep I made it. Not bad for a southern girl predicted to die before she was 20.
I'd always rationalized an early death to ease the burden on my parents. "If I die old, no one remembers but, if I die young -no one forgets". " Just think I'll never get wrinkles!" Well, now I have to rethink my rationalizations. I discovered that I'm proud of each and ever wrinkle. Each and every grey hair, well I've earned them all. To be honest I've probably caused and earned a few more than I show.
Turning 50 is usually a bench mark for most people. Many stress about "the over the hill" stigma.
HEY, I kinda like the idea that it's a slow downhill slalom from here... Collective word there---slow...
I decided to do like the "normal" folks and take better care of myself starting today. Larry walked the boys, left early and I race walked to catch up. We did a good 2.5 miles and a few extra tenths for good measure. I've had the feeling I was eating to please my insulin injections, so I'm trying to take it a lunch time now instead of in the morning. I seem to have a bad habit of dropping around 11:30. I end up eating even though I'm not really hungry. it's been this way for a few weeks, so I'm doing a little experimenting. Please, don't do this yourself because I am. I've been able to control my blood sugar without insulin for almost 8 years, so this is an old habit of mine. The start of insulin has also produced a few pounds on the scale, which is driving me nuts. I'm not sure how to lose it while on insulin. I'm afraid that if I reduce my portion size it will cause another blood sugar drop. And these I hate. If you've ever had one you know why.
The cold sweat on the back of your neck, shaky hands, etc... Not a great feeling. Plus the shock of seeing you blood sugar readings only make it worse as you try to grab food and stuff it in yout mouth. Remembering to not spike your blood sugar because you'll feel worse trying to get it back in range.
So, this morning instead of taking 15IU at 8:00AM, I'll take it later.
I ate my breakfast: pineapple, orange slices and a raisin bran muffin. I then set out on a brisk 2.5 mile walk, met up with Larry and my boys and continued on. After getting home I watered plants, (gotta keep those grape tomatoes going) then on to grocery shopping.
I used to take NPH insulin around lunch time because it caused to drastic a drop in the mornings for me, so this is my game plan again. At lunchtime 12noon my blood sugar was 100. I took 12IU of Levemir and went to lunch. I split a tuna sub with Larry so we'll see how it goes.
I also have an appointment with my endocrinologist next week so this is a good week to start my game plan. Probably a bad day as i have no idea what Larry, Debbie, & Larry (her Larry) have planed for tonight.
More tomorrow on how my theory is working.
Have a great day, I am and will... Stay safe....
IT'S A WONDERFUL LIFE AS LONG AS WE ARE ALIVE AND ABLE TO BE WITH FRIENDWS AND FAMILY.
Yep I made it. Not bad for a southern girl predicted to die before she was 20.
I'd always rationalized an early death to ease the burden on my parents. "If I die old, no one remembers but, if I die young -no one forgets". " Just think I'll never get wrinkles!" Well, now I have to rethink my rationalizations. I discovered that I'm proud of each and ever wrinkle. Each and every grey hair, well I've earned them all. To be honest I've probably caused and earned a few more than I show.
Turning 50 is usually a bench mark for most people. Many stress about "the over the hill" stigma.
HEY, I kinda like the idea that it's a slow downhill slalom from here... Collective word there---slow...
I decided to do like the "normal" folks and take better care of myself starting today. Larry walked the boys, left early and I race walked to catch up. We did a good 2.5 miles and a few extra tenths for good measure. I've had the feeling I was eating to please my insulin injections, so I'm trying to take it a lunch time now instead of in the morning. I seem to have a bad habit of dropping around 11:30. I end up eating even though I'm not really hungry. it's been this way for a few weeks, so I'm doing a little experimenting. Please, don't do this yourself because I am. I've been able to control my blood sugar without insulin for almost 8 years, so this is an old habit of mine. The start of insulin has also produced a few pounds on the scale, which is driving me nuts. I'm not sure how to lose it while on insulin. I'm afraid that if I reduce my portion size it will cause another blood sugar drop. And these I hate. If you've ever had one you know why.
The cold sweat on the back of your neck, shaky hands, etc... Not a great feeling. Plus the shock of seeing you blood sugar readings only make it worse as you try to grab food and stuff it in yout mouth. Remembering to not spike your blood sugar because you'll feel worse trying to get it back in range.
So, this morning instead of taking 15IU at 8:00AM, I'll take it later.
I ate my breakfast: pineapple, orange slices and a raisin bran muffin. I then set out on a brisk 2.5 mile walk, met up with Larry and my boys and continued on. After getting home I watered plants, (gotta keep those grape tomatoes going) then on to grocery shopping.
I used to take NPH insulin around lunch time because it caused to drastic a drop in the mornings for me, so this is my game plan again. At lunchtime 12noon my blood sugar was 100. I took 12IU of Levemir and went to lunch. I split a tuna sub with Larry so we'll see how it goes.
I also have an appointment with my endocrinologist next week so this is a good week to start my game plan. Probably a bad day as i have no idea what Larry, Debbie, & Larry (her Larry) have planed for tonight.
More tomorrow on how my theory is working.
Have a great day, I am and will... Stay safe....
IT'S A WONDERFUL LIFE AS LONG AS WE ARE ALIVE AND ABLE TO BE WITH FRIENDWS AND FAMILY.
Saturday, October 24, 2009
Surprises our spouses do.
I got a phone call at 7:30AM Wednesday morning from Eric of the Herald Tribune.
My wonderful husband called and told them my story and how I'd be celebrating a half century on Sunday.
We set up an interivew time of 10:00. OMG!!! I taught class Tuesday night , the house was a wreck, and I was just making breakfast.
I finished breakfast, did dishes, swept and mopped floors, showered, and walked the boys. I was just walking from the back yard when he arrived at 10:00. Talk about a whirlwind.
This is one of the best weekends of my life. Friday I celebrate 18 years with the first lung transplant and Sunday I flash forward to the big 5-0..
Yes I'm damned proud of each and every grey hair and wrinkle. I've earned them many times over!
Below is the article from the Trib..
Have a great day
Ernst: One living reason to donate your organs
By Eric Ernst
Published: Friday, October 23, 2009 at 1:00 a.m.
Last Modified: Thursday, October 22, 2009 at 6:26 p.m.
When she was 18 and undergoing a Navy physical, Bette Luksha-Gammell got the shock of her life.
"You'll never have children, and I'm surprised you're still walking," a doctor said. He later told her parents she probably wouldn't live past 20.
Unknown to her, Gammell had pulmonary hypertension, and her lungs and parts of her heart were three times normal size.
Following that news, a gradual decline left Gammell hooked to an oxygen tank for too much of her days.
Eighteen years ago, doctors transplanted two lungs into Gammell and sewed up a hole in her heart. In 2000, after her body rejected those organs, she received a single lung transplant in 2002. Then, about four years ago, she received a transplanted kidney after hers was damaged by the medicines she took for her lungs.
She now lives in North Port with her husband, Larry. On Sunday, she'll celebrate her 50th birthday.
Gammell may have lived a life of struggle and pain, but she doesn't ask, "Why me?"
"Never question God," she says. "You might not like the answer."
Instead of wallowing in self-pity, Gammell adjusted her goals and went to work for Disney cruise lines and as a baggage handler (no kidding) for Continental Airlines.
"I'm one of those people, I have to be doing something. I can't sit at home and collect a check every month," she says. "I'd love to be back at work, but I know the risk I take."
Gammell settles for teaching a wire jewelry class at the Cultural Center of Charlotte County.
She's also an advocate and ambassador for organ transplants. At Disney, she started a support group called Second Chance. She records her daily struggles at www.survivinganorgantransplant.blogspot.com. She writes letters with suggestions for Medicare reform.
And she has traveled across the country to talk with potential recipients filled with doubts, fears and conflicting emotions.
At 9 p.m. Sundays, she watches a new CBS television series, "Three Rivers," which follows the lives of organ donors, recipients and surgeons at a fictitious hospital in Pittsburgh.
Gammell calls the show the first national platform for organ donations.
"It certainly starts a conversation," says Jennifer Krause, public affairs manager for LifeLink Foundation.
The foundation, which arranges organ donations from Tampa Bay through Fort Myers, reported 584 transplants in its coverage area last year. Another 437 donors provided tissue for such uses as bone grafts and heart valves.
Gammell sees donors as the real heroes. "I try to do something, each day, to honor donor families," she says. "At the most grief-filled time of their lives, they gave up someone they loved to give life to someone that someone else loves."
To recipients and donors, she offers, by her own example, a simple creed: "You have all these issues, but you have to stay positive. Being positive keeps you alive, whether you've had a transplant or you're healthy."
To become an organ donor, register online at www.donatelifeflorida.org.
Eric Ernst's column runs Wednesdays, Fridays and Sundays. Contact him at eric.ernst@heraldtribune
.com or (941) 486-3073.
My wonderful husband called and told them my story and how I'd be celebrating a half century on Sunday.
We set up an interivew time of 10:00. OMG!!! I taught class Tuesday night , the house was a wreck, and I was just making breakfast.
I finished breakfast, did dishes, swept and mopped floors, showered, and walked the boys. I was just walking from the back yard when he arrived at 10:00. Talk about a whirlwind.
This is one of the best weekends of my life. Friday I celebrate 18 years with the first lung transplant and Sunday I flash forward to the big 5-0..
Yes I'm damned proud of each and every grey hair and wrinkle. I've earned them many times over!
Below is the article from the Trib..
Have a great day
Ernst: One living reason to donate your organs
By Eric Ernst
Published: Friday, October 23, 2009 at 1:00 a.m.
Last Modified: Thursday, October 22, 2009 at 6:26 p.m.
When she was 18 and undergoing a Navy physical, Bette Luksha-Gammell got the shock of her life.
"You'll never have children, and I'm surprised you're still walking," a doctor said. He later told her parents she probably wouldn't live past 20.
Unknown to her, Gammell had pulmonary hypertension, and her lungs and parts of her heart were three times normal size.
Following that news, a gradual decline left Gammell hooked to an oxygen tank for too much of her days.
Eighteen years ago, doctors transplanted two lungs into Gammell and sewed up a hole in her heart. In 2000, after her body rejected those organs, she received a single lung transplant in 2002. Then, about four years ago, she received a transplanted kidney after hers was damaged by the medicines she took for her lungs.
She now lives in North Port with her husband, Larry. On Sunday, she'll celebrate her 50th birthday.
Gammell may have lived a life of struggle and pain, but she doesn't ask, "Why me?"
"Never question God," she says. "You might not like the answer."
Instead of wallowing in self-pity, Gammell adjusted her goals and went to work for Disney cruise lines and as a baggage handler (no kidding) for Continental Airlines.
"I'm one of those people, I have to be doing something. I can't sit at home and collect a check every month," she says. "I'd love to be back at work, but I know the risk I take."
Gammell settles for teaching a wire jewelry class at the Cultural Center of Charlotte County.
She's also an advocate and ambassador for organ transplants. At Disney, she started a support group called Second Chance. She records her daily struggles at www.survivinganorgantransplant.blogspot.com. She writes letters with suggestions for Medicare reform.
And she has traveled across the country to talk with potential recipients filled with doubts, fears and conflicting emotions.
At 9 p.m. Sundays, she watches a new CBS television series, "Three Rivers," which follows the lives of organ donors, recipients and surgeons at a fictitious hospital in Pittsburgh.
Gammell calls the show the first national platform for organ donations.
"It certainly starts a conversation," says Jennifer Krause, public affairs manager for LifeLink Foundation.
The foundation, which arranges organ donations from Tampa Bay through Fort Myers, reported 584 transplants in its coverage area last year. Another 437 donors provided tissue for such uses as bone grafts and heart valves.
Gammell sees donors as the real heroes. "I try to do something, each day, to honor donor families," she says. "At the most grief-filled time of their lives, they gave up someone they loved to give life to someone that someone else loves."
To recipients and donors, she offers, by her own example, a simple creed: "You have all these issues, but you have to stay positive. Being positive keeps you alive, whether you've had a transplant or you're healthy."
To become an organ donor, register online at www.donatelifeflorida.org.
Eric Ernst's column runs Wednesdays, Fridays and Sundays. Contact him at eric.ernst@heraldtribune
.com or (941) 486-3073.
Tuesday, October 20, 2009
Daily obstacles
After Saturdays heart rate issues, I felt drained on Sunday. My heart rate was at 75 in the morning-not what I wanted or where it should be.But I'll take it. I took another pill as I as told to do and kept busy so my blood pressure would stay in a normal range.
I left for my morning walk feeling kinda blue funky. I hadn't realized that during the night a major cold front (yes in s. Florida) had moved in. It was rather chilly in shorts and a t-shirt!
I left for my morning walk feeling kinda blue funky. I hadn't realized that during the night a major cold front (yes in s. Florida) had moved in. It was rather chilly in shorts and a t-shirt!
Me & the boys walked faster! Poor lil Deebs with his bad heart was doing great with the drop in humidity and cooler weather. Glad he was. I started sneezing, coughing and thought"great all I need now". I now knew why I was feeling so funky.
When we finally got home, I decided it was time to take it easy and get over this fast. I've always been a firm believer that if I'm going to pay for advice and a physician I'm going to do what they say. Why pay out precious money if I'm not gonna follow through. After all a doctor can only take my health so far, the rest is up to me. WooHoo bon-bons, the couch, a good movie, and my boys! Well, skip the bon bons-I'm diabetic and hate taking insulin.
By Sunday evening, my heart rate was back to normal. Now the dilemma. Do I call Melissa (my coordinator) and tell her about the sneezing & coughing or see what transpires? Monday morning and I was feeling great, like my old self (as good as that can be). I decided to let it ride since I was no longer coughing and sneezing and my spirometry looked good too.
In case you're wondering, spirometry is a lung function test we recipients perform at home. It allows us to keep watch on our numbers and can help signal possible rejection (acute not chronic) in time to stop it. Spirometry can be uplifting or depressing. While in chronic rejection and waiting for my 2nd lung transplant watching the numbers steadily drop was such an emotional upheaval. The doctor finally told me to stop the spirometry-we knew what was happening and it was worse for me to see that I was actually dying than to know it mentally. At that point the adage "reality sucks" was true.
Monday also brought about major comcast issues with the internet adding this to a slow pc and I didn't accomplish much online. Even my 3 online stores suffered from lack of attention.
The PC is slow and the laptop wasn't charging...lovely day of obstacles. But, that's changed for a little --YYYYaaaayyyyyy. For some unknown reason the laptop decided to start charging, just as I was going to buy a new battery.. Thank You God!!!! You seem to take me to the brink and then just when I make a decision you show me a different route to take.
Well, feeling better today (Tuesday) I'm hitting the treadmill. Wearing my Dash for Donation 5K t-shirt from the 2006 US Transplant Games for encouragement I'm psyched. Then on to the drudgery of laundry, floors, dishes (already did those once today) and eventually relaxing with my boys (all 4 of them).
Saturday, October 17, 2009
Butterflies, Blocks and A Heart
The title may not make much sense, but it's how I've come to rationalize last night.
In 2006 I had Ablation therapy on my heart due to the inability of medication to control a rapid heart rate. Everything has been awesome! until last night.... For the last 3 years my heart rate has been in the low 50 range, something I never thought I'd see or experience.
About 9:30P.M. as I got out of my recliner to get ready for bed, I felt a bit of nauseau on standing up, followed by a cool sweat. My insulin sometimes makes me feel this way when it starts to work, sort of wheels churning in my abdomen. I checked my blood sugar and it was a nice 103 so this was not the problem, and it still continued.
I checked my blood pressure and heart rate.. my eyes popped out of my head! Heart rate of 120! No, this can't be ..So I checked it again, and again in another 15 minutes. It got to 100 beats per minute, but still not where it should be. I've always had the nagging fear that the Ablation could reverse itself and prayed I wouldn't be one of those unlucky ones. But I must say, this really set my mind reeling... We all know that when things like this happen we're told to keep calm and let it drop naturally. BUT HOW DO YOU STAY CALM WHEN YOU'RE WORRIED? I took one of my PRN tablets for heart rate and waited for a result. My PRN medication is 2 years old and this is the first time I've had to take it.
After 30 minutes, no results... I had to do the one thing I dread. Call my lung transplant coordinator on a Friday night and wake her and her kids up. I placed the call, she and my doctor both said since it was steady and not erratic just try and get some sleep, but take another pill in the morning to keep it low and correct the problem. Please tell me how to get sleep when it feels like a concrete block is on my chest and a thousand butterflies are fluttering around inside looking for a way out? After awhile it felt like those butterflies hired a few thugs who were using bats and clubs (anything available) and trying to beat their way out!. Ever have one of those headaches where you feel the pound each and every time your heart beats? That's the beating those thugs were giving me. Only at 116 beats a minute! Darn little buggers! One might think I was charging them rent or something, they way they were going at me!
I went from the recliner to the couch, to the recliner. Each and every time with 3 little 4-legged boys following me. I was seriously tired. (I thought dead tired or dog tired took it to far) Not enough sleep or rest makes for a terrible day to follow, especially for the chronically ill. Finally about 3AM the pounding stopped, guess the thugs came to an agreement with my chest. Anyway it was calm enough for me to try the bed again, not slower but calmer.
I dozed in and out of sleep until 6:30, no deep restful sleep tonight. Back in the recliner for my morning date withe the boys, take the blood pressure, read a little of my book. My heart rate was 75. WHEW..... I can't begin to explain the relief. Now to get it back to where it should be, and prevent the nightmare journey of 3 years ago when I walked into the Emergency room at Shands with a heart rate of 196.
One good thing about all this..... It made me forget about the pain in my left side. Possible fractured ribs from coughing... well at least until this morning when all was calm and it returned..
Now for hte morning walk and keep my heart as healthy as I possibly can.
In 2006 I had Ablation therapy on my heart due to the inability of medication to control a rapid heart rate. Everything has been awesome! until last night.... For the last 3 years my heart rate has been in the low 50 range, something I never thought I'd see or experience.
About 9:30P.M. as I got out of my recliner to get ready for bed, I felt a bit of nauseau on standing up, followed by a cool sweat. My insulin sometimes makes me feel this way when it starts to work, sort of wheels churning in my abdomen. I checked my blood sugar and it was a nice 103 so this was not the problem, and it still continued.
I checked my blood pressure and heart rate.. my eyes popped out of my head! Heart rate of 120! No, this can't be ..So I checked it again, and again in another 15 minutes. It got to 100 beats per minute, but still not where it should be. I've always had the nagging fear that the Ablation could reverse itself and prayed I wouldn't be one of those unlucky ones. But I must say, this really set my mind reeling... We all know that when things like this happen we're told to keep calm and let it drop naturally. BUT HOW DO YOU STAY CALM WHEN YOU'RE WORRIED? I took one of my PRN tablets for heart rate and waited for a result. My PRN medication is 2 years old and this is the first time I've had to take it.
After 30 minutes, no results... I had to do the one thing I dread. Call my lung transplant coordinator on a Friday night and wake her and her kids up. I placed the call, she and my doctor both said since it was steady and not erratic just try and get some sleep, but take another pill in the morning to keep it low and correct the problem. Please tell me how to get sleep when it feels like a concrete block is on my chest and a thousand butterflies are fluttering around inside looking for a way out? After awhile it felt like those butterflies hired a few thugs who were using bats and clubs (anything available) and trying to beat their way out!. Ever have one of those headaches where you feel the pound each and every time your heart beats? That's the beating those thugs were giving me. Only at 116 beats a minute! Darn little buggers! One might think I was charging them rent or something, they way they were going at me!
I went from the recliner to the couch, to the recliner. Each and every time with 3 little 4-legged boys following me. I was seriously tired. (I thought dead tired or dog tired took it to far) Not enough sleep or rest makes for a terrible day to follow, especially for the chronically ill. Finally about 3AM the pounding stopped, guess the thugs came to an agreement with my chest. Anyway it was calm enough for me to try the bed again, not slower but calmer.
I dozed in and out of sleep until 6:30, no deep restful sleep tonight. Back in the recliner for my morning date withe the boys, take the blood pressure, read a little of my book. My heart rate was 75. WHEW..... I can't begin to explain the relief. Now to get it back to where it should be, and prevent the nightmare journey of 3 years ago when I walked into the Emergency room at Shands with a heart rate of 196.
One good thing about all this..... It made me forget about the pain in my left side. Possible fractured ribs from coughing... well at least until this morning when all was calm and it returned..
Now for hte morning walk and keep my heart as healthy as I possibly can.
Sunday, October 11, 2009
Beliefs
I Believe...
A Birth Certificate shows we were born.
A Birth Certificate shows we were born.
A Death Certificate shows we died.
Pictures show we lived!
Have a seat...Relax. ..And read this slowly..
I Believe...
Just because two people argue,
Doesn't mean they don't love each other.
And just because they don't argue,
Doesn't mean they do love each other.
I Believe...
We don't have to change friends if We understand friends change.
I Believe...
No matter how good a friend is, they're going to hurt you every once
in a while, and you must forgive them for that..
in a while, and you must forgive them for that..
I Believe....
True friendship continues to grow, even overThe longest distance.
Same goes for true love.
I Believe....
You can do something in an instant That will give you heartache for life.
I Believe...
It's taking me a long timeTo become the person I want to be.
I Believe...
You should always leave loved ones with
Loving words.
Loving words.
It may be the last time you see them.
I Believe..
You can keep going long after you think you can't.
I Believe....
We are responsible for what we do, no matter how we feel.
I Believe...
Either you control your attitude or it controls you..
I Believe...
Heroes are the people who do what has to be done,When it needs to be done, regardless of consequences.
I Believe...
Money is a lousy way of keeping score..
I Believe...
My best friend and I can do anything or nothing,And have the best time.
I Believe...
Sometimes the people you expect to kick youWhen you're down will be the ones to help you get back up.
I Believe...
Sometimes when I'm angry, I have the right to be angry,But that doesn't give me the right to be cruel.
I Believe...
Maturity has more to do with what types of experiences you've had, and what you've learned from them, and less to doWith how many birthdays you've celebrated.
I Believe...
It isn't always enough to be forgiven by others;
Sometimes, you have to learn to forgive yourself.
I Believe...
No matter how bad your heart is broken,The world doesn't stop for your grief.
I Believe....
Our background and circumstances may have influenced who we are,But we are responsible for whom we become.
I Believe...
You shouldn't be so eager to find out a secret.
It could change your life forever.
I Believe....
Two people can look at the exact same thing and see something
totally different.
totally different.
I Believe...
Your life can be changed in a matter of hours by people who don't even know you.
I Believe...
Even when you think you have no more to give, when a friend cries out to you--
you will find the strength to help.
I Believe....
Credentials on the wall do not make you a decent human being.
I Believe...
The people you care about most in life are taken from
you too soon.
you too soon.
I Believe...
The happiest of people don't necessarily have the best
of everything;They just make the most of anything.
of everything;They just make the most of anything.
Sunday, October 4, 2009
Three Rivers Impact
A good friend of mine forwarded a newspaper article to me a few days ago. The article was a journalist making a brave attempt at tearing down the new CBS show "Three Rivers".
In her article she states that she thought the Dr's in the show looked overworked and constantly on the run, so she decided to ask a few friends of hers if this were true. She actually asked 2 yeah ONLY 2 friends in the transplant field. So this makes her an expert on the importance of promoting organ donation? Much less gives her the authority to criticize a much needed series, that shows what these medical professionals really do to save lives? Oh yeah, and what about those of us who've lived through it? Are dying as I write this hoping for a life saving transplant!
I have steamed over this article for the last 2 days, and wanted to post a link here for you to read. However, if I do post a link it only gives her more readership and credibility, and I apologize that I refuse to do.
If you've had a transplant or are waiting you know first hand how hard our teams work for us. I've witnessed it 3 times now.
I remember waking up in ICU after my first bi-lateral lung transplant in Pittsburgh. It seemed that everyday my surgeon was wheeling in another patient fresh from a transplant. My first words to him after I was extubated(removed from the dreaded respirator) were, "I thank God I was your first in all this". Yes he looked exhausted, yes he needed a shave, but his exhaustion was one of reward. He saved lives.
My 2nd lung transplant, I remember asking Dr. Baz (Shands Gainesville, FL) to please take a day off! The day he came to see me in jeans and a pullover sweater, I knew it was his day off and told him to get out and relax!
These teams take people like me, dying, oxygen sats of 48%. blue fingers, blue circles under my eyes, and make us whole again. I was given a life I never dreamed could happen to me, thanks to my overworked (yes they are), under appreciated, surgeon, physician, coordinator, and nurses on the transplant team. And you know the best part?
THEY STILL CONTINUE TO DO IT!
This journalist, instead of dissing a new show could have made a higher impact by promoting the "message" of the show. Organ transplantation/donation does not have the platform of Breast cancer awareness, diabetes, heart disease. I'm not trying to demean these in anyway. Thank goodness they do have a platform, however we 2-nd timers would like a platform too, to save those waiting.
Only by promoting the meaning of Three Rivers can the message get out and help ease pain and grieving for donor families (they are finally honored for the heroes they are), and those waiting (we can give them hope to keep going), and us recipients (it's up to us to carry that torch to make sure the candidates get that chance too). Too many shows put little tidbits in a story line about transplantation with no follow through. What happens to the recipient later? What about the struggles to pay for meds? And heaven forbid, what if they get sick! How to afford that with our wonderful Medicare system, or private insurance?
Plus, the pitfalls of going back to work. That's a story in itself.
Here we have a show with follow through...... It's about us, for us, and we can relate to it. No tidbits, just solid promotion.
If she had checked further this journalist would have found a wonderful story to tell. How CBS partnered with DonateLife Hollywood to make the stories as real as possible (we know there has to be drama). Also how Alex O'Loughlin became a DonateLife spokesperson because the cause is so great. This is the line she should have taken. Then she would have made a great journalist, not just mediocre.
My reply to my friend Merv (he has a transplant blog too, check him out) MervSheppard.blogspot.com, "And she thinks she's an expert on transplantation? I'm still spreading the word to watch the show, give it great ratings and keep it on the air! We'll show her!"
In her article she states that she thought the Dr's in the show looked overworked and constantly on the run, so she decided to ask a few friends of hers if this were true. She actually asked 2 yeah ONLY 2 friends in the transplant field. So this makes her an expert on the importance of promoting organ donation? Much less gives her the authority to criticize a much needed series, that shows what these medical professionals really do to save lives? Oh yeah, and what about those of us who've lived through it? Are dying as I write this hoping for a life saving transplant!
I have steamed over this article for the last 2 days, and wanted to post a link here for you to read. However, if I do post a link it only gives her more readership and credibility, and I apologize that I refuse to do.
If you've had a transplant or are waiting you know first hand how hard our teams work for us. I've witnessed it 3 times now.
I remember waking up in ICU after my first bi-lateral lung transplant in Pittsburgh. It seemed that everyday my surgeon was wheeling in another patient fresh from a transplant. My first words to him after I was extubated(removed from the dreaded respirator) were, "I thank God I was your first in all this". Yes he looked exhausted, yes he needed a shave, but his exhaustion was one of reward. He saved lives.
My 2nd lung transplant, I remember asking Dr. Baz (Shands Gainesville, FL) to please take a day off! The day he came to see me in jeans and a pullover sweater, I knew it was his day off and told him to get out and relax!
These teams take people like me, dying, oxygen sats of 48%. blue fingers, blue circles under my eyes, and make us whole again. I was given a life I never dreamed could happen to me, thanks to my overworked (yes they are), under appreciated, surgeon, physician, coordinator, and nurses on the transplant team. And you know the best part?
THEY STILL CONTINUE TO DO IT!
This journalist, instead of dissing a new show could have made a higher impact by promoting the "message" of the show. Organ transplantation/donation does not have the platform of Breast cancer awareness, diabetes, heart disease. I'm not trying to demean these in anyway. Thank goodness they do have a platform, however we 2-nd timers would like a platform too, to save those waiting.
Only by promoting the meaning of Three Rivers can the message get out and help ease pain and grieving for donor families (they are finally honored for the heroes they are), and those waiting (we can give them hope to keep going), and us recipients (it's up to us to carry that torch to make sure the candidates get that chance too). Too many shows put little tidbits in a story line about transplantation with no follow through. What happens to the recipient later? What about the struggles to pay for meds? And heaven forbid, what if they get sick! How to afford that with our wonderful Medicare system, or private insurance?
Plus, the pitfalls of going back to work. That's a story in itself.
Here we have a show with follow through...... It's about us, for us, and we can relate to it. No tidbits, just solid promotion.
If she had checked further this journalist would have found a wonderful story to tell. How CBS partnered with DonateLife Hollywood to make the stories as real as possible (we know there has to be drama). Also how Alex O'Loughlin became a DonateLife spokesperson because the cause is so great. This is the line she should have taken. Then she would have made a great journalist, not just mediocre.
My reply to my friend Merv (he has a transplant blog too, check him out) MervSheppard.blogspot.com, "And she thinks she's an expert on transplantation? I'm still spreading the word to watch the show, give it great ratings and keep it on the air! We'll show her!"
Sunday, September 27, 2009
12 Months
What is the value of 12 months?
It equals one year of your life, right? How about when you hear you have 12 months to live? WOW a major shock runs through your brain and body. What? Time is so short? There isn't time left to do what I need to get done. TIME becomes a 4-letter word.
Knowing for about 12 years I would eventually hear those words did nothing to prepare me for when it actually happened. Much the same as if telling you about it would make it real for you. YOU have to live it to know it fully.
While living in Fort Lauderdale in the late 1980's, I drove to Hollywood, FL from Fort Lauderdale for a Dr. visit. It was here that I heard :
"We need to get you on a transplant list, you have about 12 moths left to live."
I was very brave and professional about it, did not cry or break down. No. Not me.
Even though every cell in my body wanted to scream. I was alone, my family living miles away in Jacksonville. I was the gypsy who traveled and lived her life like there was no tomorrow.
Now there wasn't.
Leaving the Dr's office, everything around me seemed surreal. Nothing mattered except my over-active emotions. My head was held high, until I got in my car.
I stayed relatively calm until I got on I-95 driving north to Fort Lauderdale. Realization hit,
the dam broke and feelings came rushing in. "Why me?" "Why couldn't You just let me die in my sleep and make it easy?" Subconsciously my mind was filled to capacity. Background thoughts of making arrangements (God, I'm only 28!), what will this do to mom & Dad?
I found that fine line between emotions and anger. I looked up to the sky and once again cried inside "Why me?" I was raised to NEVER question God, I may not like the answer.
From the corner of my left eye I saw a huge tractor trailer getting way too close to my car, crossing the white line. My vision was all blue, his cab was so close. It seemed inches away.
Instinctively I laid on the horn and searched for a way out. We were on an overpass and my only other option was the guard rail and over the side. In a flashing thought "Oh No! You listened and it'll end quickly but painfully!" The moment passed, the truck recovered and there was no accident.
I pulled over to the nearest break down lane I could get to and literally broke down.
I looked to the sky and calmly said " God, I'll NEVER question you again." Once again Mom was right. I didn't like the answer and I got my first of many attitude adjustments from God.
My emotion charged day was now calmer, thanks to an event that took me away from it for a brief moment.
Unlocking my apartment door, I threw my purse on the table and called the one person who I could talk to, my sister. I called her at work and gave her the news. We cried together, and she asked if I wanted her to tell my parents. No, this is my responsibility and it isn't something to tell them over the phone. I'll make arrangements to take time from work and drive up to Jacksonville and tell the family.
This was on a Friday. Two of my sisters Bev and Frances were at my apartment Saturday morning to be with me. The weight of the world was momentarily lifted when I saw family.
They made sure I had a wonderful weekend before driving to Jacksonville on Sunday afternoon to give my parents the news that would change all our lives forever.
I believe this is where the guilt feelings started because I felt like I was always hurting someone because I was sick and dying. I was causing such utter grief to others, not the person I wanted to be.
It equals one year of your life, right? How about when you hear you have 12 months to live? WOW a major shock runs through your brain and body. What? Time is so short? There isn't time left to do what I need to get done. TIME becomes a 4-letter word.
Knowing for about 12 years I would eventually hear those words did nothing to prepare me for when it actually happened. Much the same as if telling you about it would make it real for you. YOU have to live it to know it fully.
While living in Fort Lauderdale in the late 1980's, I drove to Hollywood, FL from Fort Lauderdale for a Dr. visit. It was here that I heard :
"We need to get you on a transplant list, you have about 12 moths left to live."
I was very brave and professional about it, did not cry or break down. No. Not me.
Even though every cell in my body wanted to scream. I was alone, my family living miles away in Jacksonville. I was the gypsy who traveled and lived her life like there was no tomorrow.
Now there wasn't.
Leaving the Dr's office, everything around me seemed surreal. Nothing mattered except my over-active emotions. My head was held high, until I got in my car.
I stayed relatively calm until I got on I-95 driving north to Fort Lauderdale. Realization hit,
the dam broke and feelings came rushing in. "Why me?" "Why couldn't You just let me die in my sleep and make it easy?" Subconsciously my mind was filled to capacity. Background thoughts of making arrangements (God, I'm only 28!), what will this do to mom & Dad?
I found that fine line between emotions and anger. I looked up to the sky and once again cried inside "Why me?" I was raised to NEVER question God, I may not like the answer.
From the corner of my left eye I saw a huge tractor trailer getting way too close to my car, crossing the white line. My vision was all blue, his cab was so close. It seemed inches away.
Instinctively I laid on the horn and searched for a way out. We were on an overpass and my only other option was the guard rail and over the side. In a flashing thought "Oh No! You listened and it'll end quickly but painfully!" The moment passed, the truck recovered and there was no accident.
I pulled over to the nearest break down lane I could get to and literally broke down.
I looked to the sky and calmly said " God, I'll NEVER question you again." Once again Mom was right. I didn't like the answer and I got my first of many attitude adjustments from God.
My emotion charged day was now calmer, thanks to an event that took me away from it for a brief moment.
Unlocking my apartment door, I threw my purse on the table and called the one person who I could talk to, my sister. I called her at work and gave her the news. We cried together, and she asked if I wanted her to tell my parents. No, this is my responsibility and it isn't something to tell them over the phone. I'll make arrangements to take time from work and drive up to Jacksonville and tell the family.
This was on a Friday. Two of my sisters Bev and Frances were at my apartment Saturday morning to be with me. The weight of the world was momentarily lifted when I saw family.
They made sure I had a wonderful weekend before driving to Jacksonville on Sunday afternoon to give my parents the news that would change all our lives forever.
I believe this is where the guilt feelings started because I felt like I was always hurting someone because I was sick and dying. I was causing such utter grief to others, not the person I wanted to be.
Saturday, September 26, 2009
Silence is golden
I realized this morning I've been lax on my updates.
I plan to change this now. I try to remind myself to sit down and make an entry each day, but get so busy.
First off, our computer is slower than cold molasses running uphill in January! A wonderful phrase my Mom used to say to me on school mornings.. Wow, how we become our parents over time.
Silence from a recipient or a candidate can mean one of two things. They are doing great, or they are doing terribly. One always wonders if they should call and find out, but human nature hates bad news. I've heard this many times over my lifetime. Take it from me, JUST CALL. Many times, especially with lung problems, it's easier to answer a phone call than to try and make one.
Physchologically it seems so energy consuming when you can't breathe. Plus the positive side is it will make that persons day.
My mom used to answer all my calls and if I could talk I would, if not well she is the bestest secretary in the universe. Nobody gets past Mom.
My last few weeks have been busier than usual. Clinic visits... Yeah good news... Now if I can keep it that way. I finally had students sign up for classes, and have been preparing for them and ordering suplies. Trying desperately to get my blood sugar under control.
Yes I am a diabetic. Mainly caused by Prednisone and Prograf. But I have to take the meds so I deal with the diabetes. I am a control freak about my blood sugar. This is one area of my health I can control and not have to leave in the hands of others. Being a recipient there are many facets of our health we cannot control, so when there is something I can control: I prefer to. My cholesterol is another are I can take control of.
Will post more soon. If you're a candidate waiting for a transplant- hang in there -it really does get better.
If your a recipient- get out there and enjoy the chance you've been given!
I plan to change this now. I try to remind myself to sit down and make an entry each day, but get so busy.
First off, our computer is slower than cold molasses running uphill in January! A wonderful phrase my Mom used to say to me on school mornings.. Wow, how we become our parents over time.
Silence from a recipient or a candidate can mean one of two things. They are doing great, or they are doing terribly. One always wonders if they should call and find out, but human nature hates bad news. I've heard this many times over my lifetime. Take it from me, JUST CALL. Many times, especially with lung problems, it's easier to answer a phone call than to try and make one.
Physchologically it seems so energy consuming when you can't breathe. Plus the positive side is it will make that persons day.
My mom used to answer all my calls and if I could talk I would, if not well she is the bestest secretary in the universe. Nobody gets past Mom.
My last few weeks have been busier than usual. Clinic visits... Yeah good news... Now if I can keep it that way. I finally had students sign up for classes, and have been preparing for them and ordering suplies. Trying desperately to get my blood sugar under control.
Yes I am a diabetic. Mainly caused by Prednisone and Prograf. But I have to take the meds so I deal with the diabetes. I am a control freak about my blood sugar. This is one area of my health I can control and not have to leave in the hands of others. Being a recipient there are many facets of our health we cannot control, so when there is something I can control: I prefer to. My cholesterol is another are I can take control of.
Will post more soon. If you're a candidate waiting for a transplant- hang in there -it really does get better.
If your a recipient- get out there and enjoy the chance you've been given!
Saturday, September 5, 2009
Medicare &Part D plans---massive chaos
O.K. for today I need to get a little off track with my thoughts and vent, rant, whatever comes to mind about the anger I feel toward our government and how they run Medicare and Part D.
If you are an organ recipient you've felt some of my frustrations. My frustrations have been a monkey on my back for 29 years!
I've regularly sent so many letters to Congressmen, Senators, Governors and Presidents I know for a FACT they see my return address, grimace and recycle the letter unopened.
I had to wait the 6 months to receive Social Security Disability-twice-, waited the 2 years to get Medicare only to find out Medicare would not pay for my first double -lung transplant! Because it had to be performed simultaneously with open heart surgery. Medicare's loophole was the 2 surgeries had to be done separately. Gee my heart goes to our wonderful government politician who orchestrated that piece of legislation.
Now I'm falling into the issue (yet again) of prescription denials. Medicare Part B already covers a portion of Prograf and Cellcept-thankfully. If not, the cost alone would throw me into that BLACK HOLE of a coverage gap. Been there, done that, still trying to claw my way out financially from last year. (another thing to rant about). Now, however I'm having issues with Insulin. Yes insulin. This is my 3rd prescription denial in 2 weeks. I hope someone up there finally gets a clue that the "norm" does not apply to the chronically ill.
As many know long term use of Prednisone as well as Prograf can have the side effect of Diabetes. And after 18 years I feel I need something other than diet and exercise, control freak that I am when it comes to my health. My wonderful Endocrinologist has tried a few new products, and after much talking convinced me that the Pen was better for my use than the original vial and syringes. Me being the person I am , detest the thought of another syringe in my skin. After long term use of Procrit and giving the injections myself, feeling the burn and praying heavily for my kidney transplant, I count to 10 and then some trying to get up the nerve to give myself insulin.
Here's the clincher..... My Part D Provider approved the purchase of the pen needles. I had a few pen samples from my Dr., but they have DENIED the pen. So I'm now out the $30 I spent for the pen needles and constantly fighting the provider for the pen. My argument is:
They are both on the same tier, making them cost the same-so what's the big deal?
According to them you MUST give your self 3+ injections daily.. Yeah right, here comes the loophole. It's a long-acting 24 hour insulin. Who would be crazy enough to give themself more than one shot daily????? Yeah I use fast acting in between, are they going to deny this too?
I've asked these same questions in an appeal and to date have heard NOTHING.
I told family and friends years ago that Medicare and Social Security and NOT something you can depend on. Now you know too.
Time to write another letter to my Congressman announcing a new low for the disabled.
I think I'll fax this one instead..
If you are an organ recipient you've felt some of my frustrations. My frustrations have been a monkey on my back for 29 years!
I've regularly sent so many letters to Congressmen, Senators, Governors and Presidents I know for a FACT they see my return address, grimace and recycle the letter unopened.
I had to wait the 6 months to receive Social Security Disability-twice-, waited the 2 years to get Medicare only to find out Medicare would not pay for my first double -lung transplant! Because it had to be performed simultaneously with open heart surgery. Medicare's loophole was the 2 surgeries had to be done separately. Gee my heart goes to our wonderful government politician who orchestrated that piece of legislation.
Now I'm falling into the issue (yet again) of prescription denials. Medicare Part B already covers a portion of Prograf and Cellcept-thankfully. If not, the cost alone would throw me into that BLACK HOLE of a coverage gap. Been there, done that, still trying to claw my way out financially from last year. (another thing to rant about). Now, however I'm having issues with Insulin. Yes insulin. This is my 3rd prescription denial in 2 weeks. I hope someone up there finally gets a clue that the "norm" does not apply to the chronically ill.
As many know long term use of Prednisone as well as Prograf can have the side effect of Diabetes. And after 18 years I feel I need something other than diet and exercise, control freak that I am when it comes to my health. My wonderful Endocrinologist has tried a few new products, and after much talking convinced me that the Pen was better for my use than the original vial and syringes. Me being the person I am , detest the thought of another syringe in my skin. After long term use of Procrit and giving the injections myself, feeling the burn and praying heavily for my kidney transplant, I count to 10 and then some trying to get up the nerve to give myself insulin.
Here's the clincher..... My Part D Provider approved the purchase of the pen needles. I had a few pen samples from my Dr., but they have DENIED the pen. So I'm now out the $30 I spent for the pen needles and constantly fighting the provider for the pen. My argument is:
They are both on the same tier, making them cost the same-so what's the big deal?
According to them you MUST give your self 3+ injections daily.. Yeah right, here comes the loophole. It's a long-acting 24 hour insulin. Who would be crazy enough to give themself more than one shot daily????? Yeah I use fast acting in between, are they going to deny this too?
I've asked these same questions in an appeal and to date have heard NOTHING.
I told family and friends years ago that Medicare and Social Security and NOT something you can depend on. Now you know too.
Time to write another letter to my Congressman announcing a new low for the disabled.
I think I'll fax this one instead..
Saturday, August 22, 2009
Things we think about pre-transplant
It seemed that my mind was in constant motion during my "wait" period.
It was at this time I discovered "wait" was a four letter word. Being on oxygen and at deaths door per se, thinking was all I could do. I had moved back in with my parents in Jacksonville mainly because I needed help, but I also needed a positive family influence to keep me going.
And my family exudes positiveness to the nth degree. I thank God constantly for blessing me with such a family.
I remember my Mom, God Bless her, would bring a cooler to my bedroom with a sandwich and drinks before she went to work. I was tied to an oxygen concentrator and the kitchen was too far to walk with no help. She also brought in all the crafts and books I wanted for the day.
Facing ones mortality at 28 years old is tough. It's tough for anyone, but I think more so when you're so young. You have to think about things you shouldn't have to worry about for another 40-50 years. How to disburse your estate..What estate? What could a person of 28 possibly have? ALOT, believe me. I bought a large Aluminum hurricane proof storage unit, had it delivered, tied down, electricity ran to it and my dad was going to put in an air conditioner. This held all my worldly possessions. The furniture I'd need to re-start my life post transplant among other items. I never contemplated that I wouldn't survive. It was just not an option. I planned for if I didn't, just in case. This unit still sits in Mom's backyard, now holding all her craft projects.
October 1, 1991
I'm thinking of making out a Living will at Dr. Chinoy's office. This is a really big dilemma for me, for in the living will I have to sign whether I want life support or not. If I end up in the hospital before the transplant, it will most likely be on life support (respirator). The only reason for this would be to keep my vital organs and lungs oxygenated while I wait for the transplant. If I state no life support, I can't get the respirator. BUT I don't want to be hospitalized indefinitely on a respirator.
If I do opt for the respirator, I'm afraid if I feel it's my time to go and ask for the plug to be pulled the courts/Dr. won't allow it to be done. Mainly because my mind will still be functional (I hope) and I'm asking to be freed. Not only this, I don't think my parents or family would have the strength to pull that plug. Especially if my mind is active and I'm alert.
If I am comatose it might be easier. I can only hope.
My last and most important wish would be: If I'm on life support for an extended period of time, and feel it's time to go Home that someone will have enough compassion for me to just turn the respirator off. I'm sure when it's time God will let me know.
When it happens, I pray someone will hold me in loving arms while freeing me from my medical bonds. My last breath will be whispering I love you to someone who's very special in my life.
I received my first lung transplant exactly 22 days later.
Facing your mortality is not easy, but it has to be done. We-none of us is immortal.
Talking it over with my parents did bring us closer, and we shared our wishes with each other regarding end of life.
My mom showed enormous courage in carrying out my Dad's wishes when it was his time. He did not want to be kept alive through force feeding.
In being selfish I can only say I'm glad it fell to her.
I celebrated my Daddy's freedom, but didn't have the strength to be the one to let him go.
I'll regret that forever.
How can I expect someone to have that strength for me, when I couldn't muster it for the most important man in my life?
It was at this time I discovered "wait" was a four letter word. Being on oxygen and at deaths door per se, thinking was all I could do. I had moved back in with my parents in Jacksonville mainly because I needed help, but I also needed a positive family influence to keep me going.
And my family exudes positiveness to the nth degree. I thank God constantly for blessing me with such a family.
I remember my Mom, God Bless her, would bring a cooler to my bedroom with a sandwich and drinks before she went to work. I was tied to an oxygen concentrator and the kitchen was too far to walk with no help. She also brought in all the crafts and books I wanted for the day.
Facing ones mortality at 28 years old is tough. It's tough for anyone, but I think more so when you're so young. You have to think about things you shouldn't have to worry about for another 40-50 years. How to disburse your estate..What estate? What could a person of 28 possibly have? ALOT, believe me. I bought a large Aluminum hurricane proof storage unit, had it delivered, tied down, electricity ran to it and my dad was going to put in an air conditioner. This held all my worldly possessions. The furniture I'd need to re-start my life post transplant among other items. I never contemplated that I wouldn't survive. It was just not an option. I planned for if I didn't, just in case. This unit still sits in Mom's backyard, now holding all her craft projects.
October 1, 1991
I'm thinking of making out a Living will at Dr. Chinoy's office. This is a really big dilemma for me, for in the living will I have to sign whether I want life support or not. If I end up in the hospital before the transplant, it will most likely be on life support (respirator). The only reason for this would be to keep my vital organs and lungs oxygenated while I wait for the transplant. If I state no life support, I can't get the respirator. BUT I don't want to be hospitalized indefinitely on a respirator.
If I do opt for the respirator, I'm afraid if I feel it's my time to go and ask for the plug to be pulled the courts/Dr. won't allow it to be done. Mainly because my mind will still be functional (I hope) and I'm asking to be freed. Not only this, I don't think my parents or family would have the strength to pull that plug. Especially if my mind is active and I'm alert.
If I am comatose it might be easier. I can only hope.
My last and most important wish would be: If I'm on life support for an extended period of time, and feel it's time to go Home that someone will have enough compassion for me to just turn the respirator off. I'm sure when it's time God will let me know.
When it happens, I pray someone will hold me in loving arms while freeing me from my medical bonds. My last breath will be whispering I love you to someone who's very special in my life.
I received my first lung transplant exactly 22 days later.
Facing your mortality is not easy, but it has to be done. We-none of us is immortal.
Talking it over with my parents did bring us closer, and we shared our wishes with each other regarding end of life.
My mom showed enormous courage in carrying out my Dad's wishes when it was his time. He did not want to be kept alive through force feeding.
In being selfish I can only say I'm glad it fell to her.
I celebrated my Daddy's freedom, but didn't have the strength to be the one to let him go.
I'll regret that forever.
How can I expect someone to have that strength for me, when I couldn't muster it for the most important man in my life?
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