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..
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