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.
Wednesday, November 25, 2009
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?
Friday, August 14, 2009
Everything eventually comes flooding back
I've been remiss in posting mainly because my little dog DB has started with a terrible cough.
We tried the old remedy recommended by the veterinarian to no avail. To no avail right... Have you ever tried to give a dog Robitussin??? I hate the stuff so I can only imagine how this poor little 10 lb. dog feels. I even went the gamet of getting childrens flavored!
So after a week of the cough calming down, he got worse. Me being the worrier I am, after all this is one of my boys. I took him back to the vet.
With all our exercise, walking and looking slim the vet found a significant heart murmur.......
Not only a heart murmur, fluid was backing up into his lungs causing the cough. When I heard this a flood of teenage memories flooded my consciousness all at once
Then the vet handed me 2 packs of meds. One was a heart pill and the other was Lasix. OMG! I looked at the dosage of 12.5 mg and said : "Wow, I only took 25mgs at the most at my worst times and he's only 10 lbs.." I was then told DB was in crisis mode and we had to prevent the fluid from leaving his lungs and going into his heart.
Another flood... a major one... My sweet, little, holy terror was suffering from some of the complications I had endured for many years!
I then and there made a promise to God. I will spoil my little one even more, I will be protective, I will also give equal time to my other 2, and I will NOT lose my little Dibs.
Our walks are much slower now. This is difficult for me as thanks to Prednisone I run on Hyper mode constantly. We used to walk at around 2.5-3 mph. Now we meander and sniff every blade of grass and let the other brothers chase squirrels and lizards, and when he starts lagging behind and breathing heavy, he lets me know it's time for a ride in my arms.
Carrying him can be a major feat in itself while trying to control 2 other holy terrors!
A fellow crafter makes slings to carry babies with. She will be my next email. He will receive his very own custom designed carry all sling for walks.
Since the vet says this will only get worse, he deserves the best.
Memories like these hit us at the most unbelieveable times. We accept them, because they made us the survivors we are today. We learn from them, and they help us to help others facing the same crisis in their lives. I just never thought I would be helping my dog.
What are some of your memories???
Wednesday, August 5, 2009
Jerry Dinnan
This morning I want to tell you about Jerry. I never got the chance to know him other than the volunteer work we did together at LifeLink, but that doesn't matter. You see, there is a special "kin-ship" between recipients and candidates for an organ transplant.
When I first met Jerry a few years ago we had volunteered to promote donor awareness in Sarasota. We both arrived wearing the same color Lifelink polo shirts and khaki pants as if we'd planned it. As the day progressed we discovered we lived a block away from each other! He was the light shining on the health fair. We joked, talked to others about becoming an organ donor, and wanted to hug all those who said they were already a donor.
The next time I saw Jerry was at a Donor Service of Remembrance held each November at the church he attends. Lifelink brought in donor families from the past/previous years for the donor and their families to be honored. It was at this service I realized deep inside how much I needed to thank a donor family and help some of these families understand how thankful all recipients are for what they have sacrificed.
This blog has taken me a few days to put together. Mainly because as a recipient I and many like me view all candidates & recipients as "family". We have scars, take the same meds, have the same side effects, etc. BUT mos of all we *strive to thrive* with all the daily obstacles, the medical obstacles, and honor our gift of life. When I hear of a candidate of recipient passing away, I not only grieve for the loss of their life and for their family. I grieve because a part of me goes with them. I know the daily struggle and strength each and everyone of us puts forth each second of every day to prove transplantation works. The loss is double. I've lost a friend, extended family member, and fellow kinsman who understands my thoughts without having to explain the medical aspects in detail. Or from the beginning.
Here is part of an email from Lifelink regarding Jerry.
You'll see why he is sorely missed.
I am very sad to inform you that LifeLink volunteer, Jerry Dinnan passed away last Thursday morning. For those of you who knew him you may recall, Jerry was a heart transplant recipient of nine years, was a passionate advocate for organ and tissue donation which few could rival. He was an active LifeLink volunteer, and led the good work of a support group - Transplant Recipients of Southwest Florida – in Ft. Myers. Jerry never turned down a chance to spread the important message of donation – and he touched countless lives by participating in every opportunity presented, including high school presentations, media interviews and other speaking opportunities.
Jerry was incredibly grateful for the gift of life he had been given by an organ donor, and he carried wonderful thoughts of his donor and donor family with him always. As a result, Jerry felt one of his most important roles was as facilitator of LifeLink Services of Remembrance, speaking from his heart to families from throughout West and Southwest Florida whose loved ones had become organ or tissue donors.
Even with his many responsibilities to the transplant community, Jerry found time to be an active member of his local church and a Hospice volunteer, ministering to families and individuals facing end of life issues. Jerry was a beloved husband to his wife, Debbie, for many years, and leaves behind four children, several grandchildren and many friends, who will all miss him dearly.
If you find a few spare minutes this Saturday morning (his services) please look up, smile and say hello to Jerry. He's earned his wings over and over...
When I first met Jerry a few years ago we had volunteered to promote donor awareness in Sarasota. We both arrived wearing the same color Lifelink polo shirts and khaki pants as if we'd planned it. As the day progressed we discovered we lived a block away from each other! He was the light shining on the health fair. We joked, talked to others about becoming an organ donor, and wanted to hug all those who said they were already a donor.
The next time I saw Jerry was at a Donor Service of Remembrance held each November at the church he attends. Lifelink brought in donor families from the past/previous years for the donor and their families to be honored. It was at this service I realized deep inside how much I needed to thank a donor family and help some of these families understand how thankful all recipients are for what they have sacrificed.
This blog has taken me a few days to put together. Mainly because as a recipient I and many like me view all candidates & recipients as "family". We have scars, take the same meds, have the same side effects, etc. BUT mos of all we *strive to thrive* with all the daily obstacles, the medical obstacles, and honor our gift of life. When I hear of a candidate of recipient passing away, I not only grieve for the loss of their life and for their family. I grieve because a part of me goes with them. I know the daily struggle and strength each and everyone of us puts forth each second of every day to prove transplantation works. The loss is double. I've lost a friend, extended family member, and fellow kinsman who understands my thoughts without having to explain the medical aspects in detail. Or from the beginning.
Here is part of an email from Lifelink regarding Jerry.
You'll see why he is sorely missed.
I am very sad to inform you that LifeLink volunteer, Jerry Dinnan passed away last Thursday morning. For those of you who knew him you may recall, Jerry was a heart transplant recipient of nine years, was a passionate advocate for organ and tissue donation which few could rival. He was an active LifeLink volunteer, and led the good work of a support group - Transplant Recipients of Southwest Florida – in Ft. Myers. Jerry never turned down a chance to spread the important message of donation – and he touched countless lives by participating in every opportunity presented, including high school presentations, media interviews and other speaking opportunities.
Jerry was incredibly grateful for the gift of life he had been given by an organ donor, and he carried wonderful thoughts of his donor and donor family with him always. As a result, Jerry felt one of his most important roles was as facilitator of LifeLink Services of Remembrance, speaking from his heart to families from throughout West and Southwest Florida whose loved ones had become organ or tissue donors.
Even with his many responsibilities to the transplant community, Jerry found time to be an active member of his local church and a Hospice volunteer, ministering to families and individuals facing end of life issues. Jerry was a beloved husband to his wife, Debbie, for many years, and leaves behind four children, several grandchildren and many friends, who will all miss him dearly.
If you find a few spare minutes this Saturday morning (his services) please look up, smile and say hello to Jerry. He's earned his wings over and over...
Friday, July 31, 2009
Memories
I can still recall how my life transpired from 17- about 25. Before the ADA (Americans with Disabilities Act) anyone with a disability feared applying for a job. Even worse you were afraid to admit you had any form of medical issues. There were organizations that employed ONLY the disabled, so I tried one of those for a few months. It only took a few months long to realize:
1. I was not that disabled.
2. I would never achieve the few dreams I had left.
Sitting in a bare office, trying to tele-market light bulbs was not for me. It was great for those who truly needed it . Just not me. I guess this is why to this day I'm on the Do Not Call List.
I decided to try finding a job in my chosen field at that time: medical.
I went back to school and became a Medical Assistant, but symptoms began to show and it was difficult maintaining the low-pay, hectic office where I was at the time.
So I went back to work at the hospital and became a Pharmacy Technician. It was a slower pace, I was not in the public arena where germs ran rampant, and I had found my niche. For awhile.
I eventually took a job with the county health department which afforded me better benefits. It was at this point I began asking what the benefits were as opposed to negotiating a salary. I could always get a 2nd job to cover bills, BUT good health insurance coverage was mandatory.
It was also around this time I began to cough up blood. I think my cardiologist, David Chinoy MD (at the time) was going to have a coronary himself when I casually mentioned it during a visit.
I was quickly informed this was a major red flag!
From what I remember: the pressure gets so high in my heart and lungs that the arteries were bursting and I was coughing up fresh blood. He scared me to death when he mentioned I could eventually hemorrhage (?). I was also quickly becoming a CHF (congestive heart failure) patient with all the fluid build up happening in my heart. I still wonder to this day if he was doing this mainly to scare me into behaving. After all I was only in my early 20's and rebelling.
My rebellion is another story all in owns right, which I'll attempt on my next writing. Until then stay safe, stay healthy, and please don't be like I was -Listen to your doctor. After all it's your money you give them for your care.
1. I was not that disabled.
2. I would never achieve the few dreams I had left.
Sitting in a bare office, trying to tele-market light bulbs was not for me. It was great for those who truly needed it . Just not me. I guess this is why to this day I'm on the Do Not Call List.
I decided to try finding a job in my chosen field at that time: medical.
I went back to school and became a Medical Assistant, but symptoms began to show and it was difficult maintaining the low-pay, hectic office where I was at the time.
So I went back to work at the hospital and became a Pharmacy Technician. It was a slower pace, I was not in the public arena where germs ran rampant, and I had found my niche. For awhile.
I eventually took a job with the county health department which afforded me better benefits. It was at this point I began asking what the benefits were as opposed to negotiating a salary. I could always get a 2nd job to cover bills, BUT good health insurance coverage was mandatory.
It was also around this time I began to cough up blood. I think my cardiologist, David Chinoy MD (at the time) was going to have a coronary himself when I casually mentioned it during a visit.
I was quickly informed this was a major red flag!
From what I remember: the pressure gets so high in my heart and lungs that the arteries were bursting and I was coughing up fresh blood. He scared me to death when he mentioned I could eventually hemorrhage (?). I was also quickly becoming a CHF (congestive heart failure) patient with all the fluid build up happening in my heart. I still wonder to this day if he was doing this mainly to scare me into behaving. After all I was only in my early 20's and rebelling.
My rebellion is another story all in owns right, which I'll attempt on my next writing. Until then stay safe, stay healthy, and please don't be like I was -Listen to your doctor. After all it's your money you give them for your care.
Monday, July 27, 2009
Remembering Daddy
I've been absent from blogging for the past few days due to severe thunderstorms, but mainly because I was attempting to finish designing a Christmas ornament or Celebration.
My daddy passed away in 2005. Each year the funeral home holds a celebration on life around Christmas with each family placing an ornament on the tree in remembrance. Each year a new ornament is added along with ornaments from previous years.
This year is my turn to make the ornament.
This has taken much thought, mainly because :
1. I was Daddy's girl
2. I miss him more each and every day.
3. I wanted to honor him in the best way I knew how.
Here is the ornament I was finally able to finish....after much crying each time I tried to work on it.
Inside the card reads:
His favorite color-
Like his smiling eyes is blue
His heart-
Made of pure gold
His Faith- Unshakable
He placed everything in God's hands
His family-
Fragile and precious , like the finest crystal
The work on this piece- imperfect
Just like his "baby girl"
Loving husband, son, brother, uncle, grandpa, and even
a great...BUT
The most wonderful Daddy in the world
God truly broke the mold when he created you.
You are missed more with each passing day.
We Love you.
Just a reminder we all have to deal with difficult times. My daddy was there with me during my first 2 organ transplants. He was too ill to be with me for my kidney transplant. I made it through thoughts of previous transplants and him being with me, laughing. When I was discharged from the hospital to go home, he was admitted ( in a different city). I stressed if I would get to see him before he died and finally decided they could have my kidney-I HAD to see daddy again. He'd given me so much my entire life. I did see him in the nursing home a few weeks post transplant, he didn't know me. He died peacefuly in his sleep later that night. Immediately following his death I celebrated his life while others mourned his passing. My daddy was now free of hospitals, medicines, and being weak. Just as I've wanted to be my entire life. He was now whole again, enjoying that pair of wings he'd earned. Now is when I miss him, I mourn him, and I cry each time I think of his smiling face. His strength lives in me, I can survive. But oh how I wish I could have a daddy smile and hug.....
The story about "Pennies from heaven" is true. Each time I see a coin lying on the ground. I pick it up. Look to the clouds and say" Hi Daddy, I love you too."
Friday, July 24, 2009
Hearing the diagnosis for the first time
Wow! let me see this day was so long ago for me, but I can still remember parts of the day as if it were yesterday.
I was 17 and 2 months out of high school. (Yeah a lllooonnnnggg time ago) It was the end of July to be exact. I'd already started college in the summer, but decided I wanted to join the Navy. You know, follow in Dads footsteps. I wanted to be stationed aboard ship -a medical ship. I've always said I was born in the wrong era, I should've been a pirate. Swinging from the yard arm and brandishing a sword... That's me.
Anyway, back to the story, the recruiter told me women were not allowed aboard ship yet. (Yes I said it was a long time ago), however I did have enough college credits to join as a commissioned officer-plus my AFEEs test scores were high enough that I could be in Intelligence. WOW Intelligence! My vision did an about face and I now envisioned myself a spy. Black trench coat, dark RayBan sunglasses, stiletto heels, working under cover. What a life!
I only had to pass the physical........... Seven words, one sentence, that could have destroyed my life.
On physical day I was ready to sign on the dotted line. An X-ray showed an enlarged pulmonary artery. I was sent to a cardiologist to find out if I could make it through boot camp and join the Navy.
My Mom and an old long lost boyfriend met me at the cardiologists office. The words Mom and me heard still break my heart but are blurry. I had an Atrial Septal Defect (hole in the atrial chambers) in my heart and it was aggravating Pulmonary Hypertension. I was bluntly told I was lucky to have lived this long. Longer than predicted for those with this disease. The next words were "You'll be lucky to reach the age of 20, and you will NEVER have children."
Those grand visions I had of a great new life and world did a major crash and burn.
To make matters worse, after returning to the waiting room that long lost boyfriend pointed to a little girl and said "We'll have a girl just like you in a few years." Major crash and burn!
I rarely cried in front of my parents, but at this I completely lost it. I realize he had no idea, but it didn't stop the pain I felt. Being raised in a large family and feeling that children are our future and a Privilege- my world STOPPED.
The Navy still wanted me I found out, but there was no way to get me out of boot camp, so here I was: young, ready to change the world with no way to do it.
My parents were advised to get any necessary surgeries done before I was no longer on their insurance, but to also give me a little time to adjust to the news. We took a 2 month long vacation out west. Daddy customized their Chevy Van (yeah like the song). We had electricity, double bed, sinlge bed that also converted to a table, and headed out.
It was great for me except for visiting Pike's Peak. We went over the altitude I was told to stop at. I didn't know my daddy could drive so fast trying to get me down the mountain when I got sick. The result was a week long headache, saw The Grand Canyon from the van window, and learned a valuable lesson. Do what the doctor tells you to. Though I admit it took alot of tries and many gray hair on my parents heads for me to come to this comclusion.
I was 17 and 2 months out of high school. (Yeah a lllooonnnnggg time ago) It was the end of July to be exact. I'd already started college in the summer, but decided I wanted to join the Navy. You know, follow in Dads footsteps. I wanted to be stationed aboard ship -a medical ship. I've always said I was born in the wrong era, I should've been a pirate. Swinging from the yard arm and brandishing a sword... That's me.
Anyway, back to the story, the recruiter told me women were not allowed aboard ship yet. (Yes I said it was a long time ago), however I did have enough college credits to join as a commissioned officer-plus my AFEEs test scores were high enough that I could be in Intelligence. WOW Intelligence! My vision did an about face and I now envisioned myself a spy. Black trench coat, dark RayBan sunglasses, stiletto heels, working under cover. What a life!
I only had to pass the physical........... Seven words, one sentence, that could have destroyed my life.
On physical day I was ready to sign on the dotted line. An X-ray showed an enlarged pulmonary artery. I was sent to a cardiologist to find out if I could make it through boot camp and join the Navy.
My Mom and an old long lost boyfriend met me at the cardiologists office. The words Mom and me heard still break my heart but are blurry. I had an Atrial Septal Defect (hole in the atrial chambers) in my heart and it was aggravating Pulmonary Hypertension. I was bluntly told I was lucky to have lived this long. Longer than predicted for those with this disease. The next words were "You'll be lucky to reach the age of 20, and you will NEVER have children."
Those grand visions I had of a great new life and world did a major crash and burn.
To make matters worse, after returning to the waiting room that long lost boyfriend pointed to a little girl and said "We'll have a girl just like you in a few years." Major crash and burn!
I rarely cried in front of my parents, but at this I completely lost it. I realize he had no idea, but it didn't stop the pain I felt. Being raised in a large family and feeling that children are our future and a Privilege- my world STOPPED.
The Navy still wanted me I found out, but there was no way to get me out of boot camp, so here I was: young, ready to change the world with no way to do it.
My parents were advised to get any necessary surgeries done before I was no longer on their insurance, but to also give me a little time to adjust to the news. We took a 2 month long vacation out west. Daddy customized their Chevy Van (yeah like the song). We had electricity, double bed, sinlge bed that also converted to a table, and headed out.
It was great for me except for visiting Pike's Peak. We went over the altitude I was told to stop at. I didn't know my daddy could drive so fast trying to get me down the mountain when I got sick. The result was a week long headache, saw The Grand Canyon from the van window, and learned a valuable lesson. Do what the doctor tells you to. Though I admit it took alot of tries and many gray hair on my parents heads for me to come to this comclusion.
Wednesday, July 22, 2009
Welcoming a new day & ready to fight
Well I've done my morning routine medically speaking, walked our boys and now time to work on websites and web stores. I uploaded a link to my Etsy store, please give me feedback with any suggestions.
This morning I'm fuming about an article in the morning newspaper regarding our "NEW" healthcare reform. Apparently the "healthy" politicians don't think home health care is necessary anymore. Home health care is to be deleted from Medicare to help fund the new Universal healthcare for America. And just added into this healthcare plan is tax funding for abortions. I apologize in advance, but I've always felt that abortion is not a form of birth control. It has it's place, but not at the expense of the elderly and disabled.
I've written letters for the past 20 years about the lunacy of Medicare as it applies to the disabled. Now I have another reason to get on my soapbox today. I've fought for Medicare to help pay for home IV infusion supplies to no avail. Until the implementation of Part D (another joke) we had to pay for our IV meds as well. Now the only difference being the cost puts us in the coverage gap (black hole) and we pay full price anyway.
With regard to home health care, I prefer to do my own care without a nurse. I do my own dressing changes as well as IV infusion. I personally don't need anyone to take my blood pressure, heart rate, and temp another time since I already do it twice a day. And I certainly do NOT want to wait until they fit me into their schedule for the day. Add to all this: the only way Medicare will pay for home health care is if I am bed-ridden! Get real -another loophole for our government to not pay. Many who are disabled since childhood are NOT bed-ridden even though we need those IV's. Our IV site may be in a place where we cannot change the dressing, and we need assistance.
Regarding the retirees and disabled facing the end of their earthly time, then YES,YES,YES give them the comfort of home health care. Our healthy politicians must realize (and they will when finally facing their mortality) that shaky hands and weak legs MUST have assistance.
Try checking your blood sugar or giving yourself insulin when your so weak you can hardly hold the needle much less stick it in your stomach!
Another morning of writing emails, letters,and sending follow up faxes to my congressman and senators. I hope you will do the same. We need to stand together and show them we are a majority. If Universal healthcare is so great-let them join us in the program and drop the great healthcare plan they have now.
This morning I'm fuming about an article in the morning newspaper regarding our "NEW" healthcare reform. Apparently the "healthy" politicians don't think home health care is necessary anymore. Home health care is to be deleted from Medicare to help fund the new Universal healthcare for America. And just added into this healthcare plan is tax funding for abortions. I apologize in advance, but I've always felt that abortion is not a form of birth control. It has it's place, but not at the expense of the elderly and disabled.
I've written letters for the past 20 years about the lunacy of Medicare as it applies to the disabled. Now I have another reason to get on my soapbox today. I've fought for Medicare to help pay for home IV infusion supplies to no avail. Until the implementation of Part D (another joke) we had to pay for our IV meds as well. Now the only difference being the cost puts us in the coverage gap (black hole) and we pay full price anyway.
With regard to home health care, I prefer to do my own care without a nurse. I do my own dressing changes as well as IV infusion. I personally don't need anyone to take my blood pressure, heart rate, and temp another time since I already do it twice a day. And I certainly do NOT want to wait until they fit me into their schedule for the day. Add to all this: the only way Medicare will pay for home health care is if I am bed-ridden! Get real -another loophole for our government to not pay. Many who are disabled since childhood are NOT bed-ridden even though we need those IV's. Our IV site may be in a place where we cannot change the dressing, and we need assistance.
Regarding the retirees and disabled facing the end of their earthly time, then YES,YES,YES give them the comfort of home health care. Our healthy politicians must realize (and they will when finally facing their mortality) that shaky hands and weak legs MUST have assistance.
Try checking your blood sugar or giving yourself insulin when your so weak you can hardly hold the needle much less stick it in your stomach!
Another morning of writing emails, letters,and sending follow up faxes to my congressman and senators. I hope you will do the same. We need to stand together and show them we are a majority. If Universal healthcare is so great-let them join us in the program and drop the great healthcare plan they have now.
Thursday, July 16, 2009
Patches
She wakes each day with a smile, feeling Blessed.
The everyday routine means she’s still alive.
She smiles and feels as cleansed as the earth with each rain.
After all, God is laughing at our antics so hard he’s crying.
Each morning she checks her temperature, heart rate, blood
Pressure, and weight.
And then again in the evening as well.
This is her daily routine.
She tests her blood sugar, takes her insulin and Aranesp.
She also takes 2 hands full of pills each morning.
Then another handful before bed.
She faces the normal daily obstacles we all do.
And a few extra thrown in to test her character.
She cooks, cleans, mops floors, and walks her little dogs.
She calls her family and worries about her parents.
She misses her husband terribly when he’s away.
He is her soul mate, the one true love of her life.
Most of the day is spent on the phone with insurance companies,
Hospitals, and doctor offices. If she isn’t sick,
She’s trying to straighten out another bill.
She had to give up her dream to be a psychologist,
But she volunteers helping others get their meds free.
She writes newsletters to inform other patients, runs a small website to inform and encourage.
She lives life to the fullest she possibly can.
She truly knows just how short it really is.
If not for surgeries, she’d have no scars on her body.
But the ones she has, she wears with pride.
After all she had to die to get them.
1991. A scar down the center of her chest. Open heart surgery and
A bi-lateral lung transplant.
2002. The scar circling her left shoulder on her back.
A single lung transplant.
2004. A scar stretching from under her right arm to below
Her elbow. Vascular surgery for dialysis.
2005. The scar on her right side stretching from her navel to
Her groin. A right kidney transplant.
A broken heart at losing her Daddy.
2006. Two separate scars. On her left shoulder a small scar hides
A box. A pacemaker.
Six tiny points on her right thigh.
Ablation therapy for AV reentrant Tachycardia.
And 3 weeks later she competed in the US Transplant Games.
The 5K no less.
2008. A new scar tops the old scar on her right arm.
Removal of the vein for dialysis-a blood clot.
She can remember many holidays in the hospital.
But she understands.
This is the cross she is given to bear.
With each new diagnosis, she laughs and says
“Just another day at the office.”
She is a career recipient.
She doesn’t worry about wrinkles.
She is the extreme makeover.
Her mission in life;
To make sure all the other candidates after her
Get the same chance she has.
She jokingly says she understands how Frankenstein felt.
She is the Patchwork Sister.
She wakes each day with a smile, feeling Blessed.
The everyday routine means she’s still alive.
She smiles and feels as cleansed as the earth with each rain.
After all, God is laughing at our antics so hard he’s crying.
Each morning she checks her temperature, heart rate, blood
Pressure, and weight.
And then again in the evening as well.
This is her daily routine.
She tests her blood sugar, takes her insulin and Aranesp.
She also takes 2 hands full of pills each morning.
Then another handful before bed.
She faces the normal daily obstacles we all do.
And a few extra thrown in to test her character.
She cooks, cleans, mops floors, and walks her little dogs.
She calls her family and worries about her parents.
She misses her husband terribly when he’s away.
He is her soul mate, the one true love of her life.
Most of the day is spent on the phone with insurance companies,
Hospitals, and doctor offices. If she isn’t sick,
She’s trying to straighten out another bill.
She had to give up her dream to be a psychologist,
But she volunteers helping others get their meds free.
She writes newsletters to inform other patients, runs a small website to inform and encourage.
She lives life to the fullest she possibly can.
She truly knows just how short it really is.
If not for surgeries, she’d have no scars on her body.
But the ones she has, she wears with pride.
After all she had to die to get them.
1991. A scar down the center of her chest. Open heart surgery and
A bi-lateral lung transplant.
2002. The scar circling her left shoulder on her back.
A single lung transplant.
2004. A scar stretching from under her right arm to below
Her elbow. Vascular surgery for dialysis.
2005. The scar on her right side stretching from her navel to
Her groin. A right kidney transplant.
A broken heart at losing her Daddy.
2006. Two separate scars. On her left shoulder a small scar hides
A box. A pacemaker.
Six tiny points on her right thigh.
Ablation therapy for AV reentrant Tachycardia.
And 3 weeks later she competed in the US Transplant Games.
The 5K no less.
2008. A new scar tops the old scar on her right arm.
Removal of the vein for dialysis-a blood clot.
She can remember many holidays in the hospital.
But she understands.
This is the cross she is given to bear.
With each new diagnosis, she laughs and says
“Just another day at the office.”
She is a career recipient.
She doesn’t worry about wrinkles.
She is the extreme makeover.
Her mission in life;
To make sure all the other candidates after her
Get the same chance she has.
She jokingly says she understands how Frankenstein felt.
She is the Patchwork Sister.
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