While I realize that many wonder if they should have a transplant, I don't remember thinking this way.
After all, my first one was almost 19 years ago. I do remember making sure affairs were in order just in case. I also realized it was a 50/50 shot. I might NOT get that call in time. I spent more time relishing seeing the waves crash the shore at the beach, wind lightly swaying the palm trees, and rain.
I did however try to put my life into perspective.. Back in the middle ages a person had to be given the death sentence of "12 months to live" to be placed on a transplant list. I remember the shock the day I heard this, "But I'm feeling fine." I also remember waking on that fateful 365th day and wondering if it would be my last. I did not ponder if I should get a transplant.
When I was told that I would need a second lung and then a kidney, my thoughts were "Where do I sign up?" I had enjoyed a life I never imagined possible for 9 years with the first transplant. And back then the survival rate was 50% past one year and 3 years survivability... I AM STILL HERE... Thought that needed to be emphasized.
So my question to you is:
If you were told you needed an organ transplant or another organ transplant :
What would you do? And Why?
Friday, August 27, 2010
Wednesday, July 28, 2010
Medicare Part D and other unfair practices.
I guess you now know by the title I'm in a not so good place with the coverage the seniors and disabled are forced to accept. I received that wonderful notification that I was $120 away from "THE BLACK HOLE" coverage gap-purchasing only my daily meds required for survival. I've been extremely careful, trying to not tread those waters. After all, I'm still paying off all those wonderful meds from 2008!
As luck would have it, I started coughing again. This past Saturday it got a new complication. I was coughing up blood. Now this is a MAJOR red flag for me, since this was one of my original symptoms. So to say I was scared is an understatement. After calling my transplant coordinator, some cough suppressant with codeine was called into my local pharmacy. Imaging my surprise when I was told the cost was $125.00-because my Part D Provider CVS Caremark Silverscript does not cover cough suppressants. The pharmacist suggested a lesser expensive one and I was caught in the hurdle of ruining my coordinators day off. I called CVS Caremark when I got home and got the usual song and dance.. "Well if it were a Monday, we could push through an authorization/" BUT that takes 72 hrs- "Well yes". Completely unfair since they regularly change the formulary forcing all participants to switch meds-bother Doctors- JUST every other month or so. I've actually had to stop updating my formulary book I have received so many.
My luck ran true to form once again and I began a light temperature. The decision was made to call in the Big Guns... I was getting Levacquin 750 mg for 5 days. As I inwardly gritted my teeth ( remember the tooth incident?) thinking of how exorbitant the cost was going to be. Was I ever wrong... IT WAS WORSE!!! Five tablets cost me $140.23! Do you realize that is $28.05 per tablet. Oh and CVS well they saved me a whopping $38.76..
I know you'll say well you'll get a $250 rebate from the gov't when you hit the gap. So what! Look how much I have to spend to get out of the gap.
When things like this happen, I have to wonder is there anyone minding the raises our elected officials get? Is anyone up there controlling the cost of these meds? NOPE. Are they trying to cut physician payouts -forcing us to pay more- YEP. Are they not giving out that cost of living raise? NOPE
Are they helping other countries while we have scores of unemployed? Are they rebuilding other countries while Americans can't afford food?How they in good conscience send billions to help others and not help their own?
I mentioned to the lovely CSR from CVS who answered my call that I intended to climb back on my soapbox, and let others know what they are doing to their members. I have.
By the way, I also sent a letter to President Barack Obama- wonder if he'll answer...?
As luck would have it, I started coughing again. This past Saturday it got a new complication. I was coughing up blood. Now this is a MAJOR red flag for me, since this was one of my original symptoms. So to say I was scared is an understatement. After calling my transplant coordinator, some cough suppressant with codeine was called into my local pharmacy. Imaging my surprise when I was told the cost was $125.00-because my Part D Provider CVS Caremark Silverscript does not cover cough suppressants. The pharmacist suggested a lesser expensive one and I was caught in the hurdle of ruining my coordinators day off. I called CVS Caremark when I got home and got the usual song and dance.. "Well if it were a Monday, we could push through an authorization/" BUT that takes 72 hrs- "Well yes". Completely unfair since they regularly change the formulary forcing all participants to switch meds-bother Doctors- JUST every other month or so. I've actually had to stop updating my formulary book I have received so many.
My luck ran true to form once again and I began a light temperature. The decision was made to call in the Big Guns... I was getting Levacquin 750 mg for 5 days. As I inwardly gritted my teeth ( remember the tooth incident?) thinking of how exorbitant the cost was going to be. Was I ever wrong... IT WAS WORSE!!! Five tablets cost me $140.23! Do you realize that is $28.05 per tablet. Oh and CVS well they saved me a whopping $38.76..
I know you'll say well you'll get a $250 rebate from the gov't when you hit the gap. So what! Look how much I have to spend to get out of the gap.
When things like this happen, I have to wonder is there anyone minding the raises our elected officials get? Is anyone up there controlling the cost of these meds? NOPE. Are they trying to cut physician payouts -forcing us to pay more- YEP. Are they not giving out that cost of living raise? NOPE
Are they helping other countries while we have scores of unemployed? Are they rebuilding other countries while Americans can't afford food?How they in good conscience send billions to help others and not help their own?
I mentioned to the lovely CSR from CVS who answered my call that I intended to climb back on my soapbox, and let others know what they are doing to their members. I have.
By the way, I also sent a letter to President Barack Obama- wonder if he'll answer...?
Saturday, July 3, 2010
Happy Birthday Daddy! I Miss You
05/15/05Daddy-The Positive foundation
As I’ve grown older, I’ve learned many things. Most of them were instilled in me from my parents. We always remember the good times with fondness, however I recall that the bad ones made us stronger and closer as a family. We had a happy life but each of us kids knew we didn’t dare cross daddy. Retribution was swift and the punishment fit the offense. He wasn’t the type to “beat us” as kids say nowadays, oh no not our daddy. He knew that restriction was the worst thing you could do to a teen or child. I think it was the disappointment on his face that was the real punishment for me. I’d live with the thought that I’d let him down and it ate at me for days.
Memories are like a warm sunny day. We wrap ourselves in them, close our eyes and are transported back to that wonderful time. I can still remember being in a boat in the middle of the river with daddy, fishing and talking. He had me fishing from the age of 3 and our quiet time I remember the best. We would go on to have many quiet times in the future, but fishing together was the beginning of our foundation. I’m talking back in the 1960’s, the early years, and we had a small johnboat, so when it rained we held up an umbrella, laughed and waited for the rain to stop. Now that’s a warm, fuzzy picture I carry with me all the time. I remember a few years’ later mom & dad bought a real boat. When dad & me went fishing and I got tired, he always had life jackets set out like a mini cot in the bow of the boat for me. Even now I fall asleep when I hear the water lapping the sides of a boat. No matter what kind of day I have in a boat, thanks to dad it’s always a great one.
My mother was always the sensitive one, worrying like a mother hen over her children. When I got sick, and they thought I needed to go to the doctor or hospital it was daddywho came to talk to me. I knew it was from the two of them, but this is when I turned to daddy, when there was something medical I needed to talk about. As I got older I would talk to them both, but daddy I remember always holding my hand and calmly talking me through. Mom was the clean up crew. She’d hold me on her lap, rub my arm and calm me until I fell asleep. Another fond memory. One instance in particular, I remember, I had to miss Vacation Bible School because I started coughing up blood. At the time we had no idea what the cause was and wouldn’t find out until many years later. I was lying on the couch; everyone was keeping an eye on the baby of the family! Daddy came up to me, held me and started talking about going to the doctor. He thought it might be appendicitis. Even though I was maybe 5 or 6 he talked to me as if I were an adult and had a say in my care. This is a positive foundation that has stayed with me. He helped me see, calmly that something needed to be done and off we went to the doctor. He knew from my earlier years I had what could be called “white coat syndrome” and did all possible to avoid anyone in the medical field. As long as daddy was there I knew subconsciously I’d be ok. Now that he has so recently left us, I find myself wondering how I’m going to make it through the next procedure. I know in my heart he’s with me, he’s already let me know, but I really miss his presence, his smile, and his positive outlook. I draw on the strengths he instilled in me and the confidence he made sure I had in myself as a person when I feel I need him close.
My teen years were uneventful medically. I decided in the 11th grade I wanted to go into the medical field and started classes to decide which part. I enjoyed working at the hospital helping patients, it was so rewarding. It was in my senior year of school that I took the AFEES test for the armed forces, and signed up for Junior college. I graduated on June 3rd and was in college on the 8th. No need to waste time, I loved school and learning. In August of this same year I spoke to a recruiter. I had accumulated enough college credits and my score was high enough to go into the armed forces as a commissioned officer. Of course it would be the Navy that is the branch daddy was in during WWII. I wanted to go into Intelligence or Air Traffic control. In the late 70’s they didn’t allow females onboard ship, so that was out of the question, even if I decided to be a nurse. The more I considered it, the more appealing Intelligence seemed. I imagined myself in a long trench coat, sunglasses, secretly strolling around Europe. The hit show “Alias” had nothing on me. The show was probably written from my thoughts alone. I remember the day I went in for my entrance physical. As they say, “ It was a day that will live in infamy” My entire world came crumbling down in one simple step.
I made it through the physical until the chest x-ray. A problem was discovered with the pulmonary artery. Since my Afees scores were so high, they were sending me to a cardiologist for verification I could continue on to boot camp. I was concerned, but was taught not to worry unduly on things I can’t change. So I waited to hear the results before I came apart. My mom was with me for the visit. The cardiologist told us it was serious, and wouldn’t know more until a cardiac catheterization was done. Of course, I would not be able to join the Navy or have children. That is the exact way he told me, cold and seemingly uncaring. At 17, my entire world came apart. I was taken back to where my initial physical was done, they told me if there was anyway they could get me out of boot camp they would, but there was no way. So, through the clouds of gloom I walked out, and wondered what in the world I’d do next.
Through the next 13 years my parents were the rock I clung to when life’s obstacles got in the way. It was a time of trial, error, wheelchairs and oxygen, but they were with me through it all. They smiled, encouraged and kept me going. I don’t know how they did it. I never saw them worry, though now I know they did. How could they not, they were told I had a rare disease and probably wouldn’t live to see 20. Daddy always had a smile and a hug and always knew when I needed it most. They watched as I attempted college, moved out on my own, even moved away from the state. They let me experience it all and for that I am so thankful. I know they wanted to shelter me, and protect me from harm, they knew I was dying, but they found the strength to let me live my life no matter what. That is the best thing you can do for your children. Let them have their life, but be there to help pick up the pieces. No advice, no yelling, just positive reinforcement. There were a lot of pieces to pick up. I had the everyday obstacles to overcome as well as the medical ones too. Thank you mom and dad, if I had children I don’t know if I could be half the parents you’ve been.
When the doctor told me I had twelve months to live and needed to go on a transplant list I was living in Ft Lauderdale. My first phone call was to my oldest sister Beverly. I didn’t want to tell mom & dad over the phone and wanted to let someone in the family know for when I drove up to Jacksonville. Shortly after the phone call, she called back. She and another sister Frances were driving down the next day (Friday) to drive me back to Jax. My parents were not to be told I was coming up, they would wonder why I (the gypsy of the family) was not driving myself. They arrived and we had a lighthearted evening overshadowed with what I had to do, and started out the next day. To say we surprised my parents was an understatement. As soon as they saw me they knew I had news.
After the shock we began to plan. They knew my records were sent to University of Pittsburgh for consideration. I had to make arrangements with work, my apartment, etc. I would be moving back home at the age of 29. Not something I thought should happen, I always felt that being the last child they deserved their time alone when I turned 18 and made sure they got it. It was the least I could do for all they did for me over the years. Since daddy was close to retiring, he decided to take early retirement when my call came through and stay with me in Pittsburgh. The hospital recommended that one family member stay through the entire ordeal so the recipient would have someone they could talk to about it later if needed. Looking back on it now, I don’t know how Mom stayed behind and handled it all. She worked, came home and returned numerous phone calls, played receptionist to a constantly ringing phone and worried. She & daddy drove up for the initial surgery, but she flew back home, after I was out of intensive care. How she found the strength to leave amazes me to this day. She is one of the strongest women I know. Daddy had a different job. He watched me fight to make it. When I was in and out of a rejection coma and the doctor told him prayers were all that was keeping me here, he prayed, and stressed whether to tell mom. He decided not to tell her, and wait. His unshakable faith in God saw him through. In three days I was awake and my new lungs were functioning at 100%.
Even though I spent the time in the hospital, I remember the time fondly. The first time I had a bronch and was craving decent food daddy brought me the biggest order of pancakes and sausage I’d ever seen. Each day he brought me an orange-which we shared and some popcorn. During my second lung transplant, both parents stayed with me at transplant housing in Gainesville and the tradition of sharing an orange carried over. Dad would slice it and we’d all watch TV and eat it. The five weeks in Pittsburgh helped me see just how unshakable daddy’s faith really was. He was always positive no matter what and did all he could to make sure I stayed that way too. The nurses put 2 recliners in my room, one for me and one for daddy. Sometimes I think they liked him being there the best. They would laugh when they saw both of us, our feet propped up, sleeping in our chairs with the TV on. When I was released to come home, we decided to drive instead of fly. I was concerned since we were in the middle of flu season and I was immuno-compromised. The doctor said ok so long as we stopped regularly and I walked. They didn’t want any blood clots forming from inactivity. Mom flew up and it was like one of our vacations we took together all over again. Except with the extra stops for walking.
The next 8 years passed quickly. I had as much of a normal life as a transplant recipient can. Trips to UPMC, took early out from the airline, moved to Orlando to be on the opening team of Disney Cruise Line, things were moving right along. Unfortunately so was chronic rejection. I noticed I was having trouble walking and talking at the same time, a warning sign. What followed was a nightmare. The last thing a recipient wants to hear is those two little words –chronic rejection. It feels like a death sentence all over again. The wind is crushed from your sail in seconds. I had to plan again, and tell my parents again. I’d bought a house in Lakeland, so the next 3 years I remember vividly. Not so nice, but I held onto the positive foundation from daddy and read the book of Job a lot during this time. Bell South loved my long distance calls to my parents. I called just to hear their voice and lift me up. I needed to piggy back my emotions from them to keep me positive. They obliged and even made many trips to see me.
Much of this time they didn’t see what I had to endure to survive. I felt I’d hurt them enough and tried to keep as much of the horror as possible from them. I’d tell them about it after everything was ok. I endured iv’s, hospital visits, still trying to work full-time and go to college full-time as well as a pulmonary rehabilitation exercise program. I lost 60 pounds through it all, was diagnosed as steroid induced diabetic and wondered if I’d make it to another transplant. It was at this time I was listed with Gainesville. No other center wanted to do another transplant for me. This was the emotional chasm that almost destroyed me. Hearing all these centers tell me no, when they are supposed to save lives. My thesis in college reflected all my anger during this time and was directed to these centers. This was the only way I knew to release the negative emotion building up inside me. Shands at Gainesville restored my faith in the medical field and gave me a comfort zone stronger than any other hospital I’d been to.
I finally had to call my parents when I was rushed to the hospital and the doctor told me I needed to decide on whether to go on a respirator or die comfortably on morphine. I didn’t think it was that bad, but then again I wasn’t at Shands either. Mom and daddy were volunteering at the Lions Club making a spaghetti dinner, so I called a sister and asked if she’d let them know I needed to talk to them. The next day my room was filled with family. I needed to know they were all right with my decision, after so many years of fighting the thought of dying comfortably was so appealing. However, I couldn’t let daddy down. I heard him mention to mom that he still saw a spark of the fighter in me, and knew they were holding out for a miracle. I decided to go for the respirator, was moved to ICU and waited through the night. His miracle happened, I didn’t need the respirator and was sent home 2 days later. I immediately made a trip to Shands to discuss what I needed to put in an advanced directive. That night at 3:00 am they got another miracle. We were home and my call came through. We drove back to Gainesville and I got my single left lung transplant.
It was about seven months after this that dad began to show signs of Alzheimer’s. The thought that this man, who has given so much, should have to endure this was unthinkable. I’ve always called him “Mr. Volunteer” and credit my helping others like I do from watching him all my life. We watched him deteriorate for two years; it was so rapid we barely had time to adjust. It hit my mother the hardest. She had to watch each day as he struggled to walk, form sentences and the final days in the nursing home. She just couldn’t lift him anymore, being a small petite woman herself. I still saw the daddy I’ve always known. Living my life disabled taught me a lot, the first was that daddy was still a person and would be treated as such. It was my turn to give something back to him on my visits. I called regularly to keep mom upbeat, but the visits were for dad. In the last 6 months of his life, I had a few obstacles of my own. I was treated for rejection and was waiting for a kidney transplant, hoping for living donor. I was told the wait could be five years.
I couldn’t talk to dad about all this anymore, so I drew on what he’d given me all these years. I didn’t want to burden mom, she was under enough pressure. I did want her to know that I understood, and they were here with me even if not physically. I visited them for a week, what was to be my last precious moments with daddy. After I got home, two days later I got a call from the kidney transplant program, they had a kidney for me! I couldn’t believe it, it was only six months of waiting. I called mom, hoping she could find time to let everyone know. I got out of the hospital one week later on Thursday and daddy went in on that Friday. From the hospital he went to a nursing home. I got daily reports from my sisters and stressed if I’d be able to see him again. I was so freshly out of a transplant I couldn’t go visit him in a nursing home yet. I finally got the ok at 3 weeks out with a few restrictions and we drove up. We got there late Wednesday and he passed away 12 AM on Friday June 3,2005. I got to see him, but he was semi-comatose so I’ll never know if he knew I was there. I know I was and I still drew strength from the man that is my daddy.
I had to leave early on Friday for an appointment a shands. My kidney wasn’t functioning they way they hoped and they wanted to admit me. It was then that the loss of daddy hit me. He wasn’t here to tell me, it was going to be ok. If I were admitted how would I go to his funeral and say goodbye? The loss was so great I cannot describe it. I had to be strong so mom wouldn’t hear all this over the phone. I was also scared to death of having a kidney biopsy and the thought was more than I could endure. Mom knew this too. At the last minute, they discovered they couldn’t do the biopsy and I could go home. I called mom and we both said at the same time “thanks dad”, he was still watching out for me.
Even though my daddy has only been gone a little more than a week, I’ve learned that the best tribute I can give to this man for all he’s taught me is to keep him forever in my heart. When something bad happens I touch my heart and remember him, his strengths and when something good happens I touch my heart and say “thank you daddy”. I have a large jar of "pennies from heaven" too, and know that silver lining behind the clouds is Daddy telling me he's still there watching over me.
I miss him and need him more with each passing year.
I am posting this today July 3,2010 because today my daddy would have been 85 years old. We now believe it was not Alzheimers.
Through a breaking heart and tear filled eyes this is for the most wonderful daddy in the world.
I love you daddy... Happy Birthday..
As I’ve grown older, I’ve learned many things. Most of them were instilled in me from my parents. We always remember the good times with fondness, however I recall that the bad ones made us stronger and closer as a family. We had a happy life but each of us kids knew we didn’t dare cross daddy. Retribution was swift and the punishment fit the offense. He wasn’t the type to “beat us” as kids say nowadays, oh no not our daddy. He knew that restriction was the worst thing you could do to a teen or child. I think it was the disappointment on his face that was the real punishment for me. I’d live with the thought that I’d let him down and it ate at me for days.
Memories are like a warm sunny day. We wrap ourselves in them, close our eyes and are transported back to that wonderful time. I can still remember being in a boat in the middle of the river with daddy, fishing and talking. He had me fishing from the age of 3 and our quiet time I remember the best. We would go on to have many quiet times in the future, but fishing together was the beginning of our foundation. I’m talking back in the 1960’s, the early years, and we had a small johnboat, so when it rained we held up an umbrella, laughed and waited for the rain to stop. Now that’s a warm, fuzzy picture I carry with me all the time. I remember a few years’ later mom & dad bought a real boat. When dad & me went fishing and I got tired, he always had life jackets set out like a mini cot in the bow of the boat for me. Even now I fall asleep when I hear the water lapping the sides of a boat. No matter what kind of day I have in a boat, thanks to dad it’s always a great one.
My mother was always the sensitive one, worrying like a mother hen over her children. When I got sick, and they thought I needed to go to the doctor or hospital it was daddywho came to talk to me. I knew it was from the two of them, but this is when I turned to daddy, when there was something medical I needed to talk about. As I got older I would talk to them both, but daddy I remember always holding my hand and calmly talking me through. Mom was the clean up crew. She’d hold me on her lap, rub my arm and calm me until I fell asleep. Another fond memory. One instance in particular, I remember, I had to miss Vacation Bible School because I started coughing up blood. At the time we had no idea what the cause was and wouldn’t find out until many years later. I was lying on the couch; everyone was keeping an eye on the baby of the family! Daddy came up to me, held me and started talking about going to the doctor. He thought it might be appendicitis. Even though I was maybe 5 or 6 he talked to me as if I were an adult and had a say in my care. This is a positive foundation that has stayed with me. He helped me see, calmly that something needed to be done and off we went to the doctor. He knew from my earlier years I had what could be called “white coat syndrome” and did all possible to avoid anyone in the medical field. As long as daddy was there I knew subconsciously I’d be ok. Now that he has so recently left us, I find myself wondering how I’m going to make it through the next procedure. I know in my heart he’s with me, he’s already let me know, but I really miss his presence, his smile, and his positive outlook. I draw on the strengths he instilled in me and the confidence he made sure I had in myself as a person when I feel I need him close.
My teen years were uneventful medically. I decided in the 11th grade I wanted to go into the medical field and started classes to decide which part. I enjoyed working at the hospital helping patients, it was so rewarding. It was in my senior year of school that I took the AFEES test for the armed forces, and signed up for Junior college. I graduated on June 3rd and was in college on the 8th. No need to waste time, I loved school and learning. In August of this same year I spoke to a recruiter. I had accumulated enough college credits and my score was high enough to go into the armed forces as a commissioned officer. Of course it would be the Navy that is the branch daddy was in during WWII. I wanted to go into Intelligence or Air Traffic control. In the late 70’s they didn’t allow females onboard ship, so that was out of the question, even if I decided to be a nurse. The more I considered it, the more appealing Intelligence seemed. I imagined myself in a long trench coat, sunglasses, secretly strolling around Europe. The hit show “Alias” had nothing on me. The show was probably written from my thoughts alone. I remember the day I went in for my entrance physical. As they say, “ It was a day that will live in infamy” My entire world came crumbling down in one simple step.
I made it through the physical until the chest x-ray. A problem was discovered with the pulmonary artery. Since my Afees scores were so high, they were sending me to a cardiologist for verification I could continue on to boot camp. I was concerned, but was taught not to worry unduly on things I can’t change. So I waited to hear the results before I came apart. My mom was with me for the visit. The cardiologist told us it was serious, and wouldn’t know more until a cardiac catheterization was done. Of course, I would not be able to join the Navy or have children. That is the exact way he told me, cold and seemingly uncaring. At 17, my entire world came apart. I was taken back to where my initial physical was done, they told me if there was anyway they could get me out of boot camp they would, but there was no way. So, through the clouds of gloom I walked out, and wondered what in the world I’d do next.
Through the next 13 years my parents were the rock I clung to when life’s obstacles got in the way. It was a time of trial, error, wheelchairs and oxygen, but they were with me through it all. They smiled, encouraged and kept me going. I don’t know how they did it. I never saw them worry, though now I know they did. How could they not, they were told I had a rare disease and probably wouldn’t live to see 20. Daddy always had a smile and a hug and always knew when I needed it most. They watched as I attempted college, moved out on my own, even moved away from the state. They let me experience it all and for that I am so thankful. I know they wanted to shelter me, and protect me from harm, they knew I was dying, but they found the strength to let me live my life no matter what. That is the best thing you can do for your children. Let them have their life, but be there to help pick up the pieces. No advice, no yelling, just positive reinforcement. There were a lot of pieces to pick up. I had the everyday obstacles to overcome as well as the medical ones too. Thank you mom and dad, if I had children I don’t know if I could be half the parents you’ve been.
When the doctor told me I had twelve months to live and needed to go on a transplant list I was living in Ft Lauderdale. My first phone call was to my oldest sister Beverly. I didn’t want to tell mom & dad over the phone and wanted to let someone in the family know for when I drove up to Jacksonville. Shortly after the phone call, she called back. She and another sister Frances were driving down the next day (Friday) to drive me back to Jax. My parents were not to be told I was coming up, they would wonder why I (the gypsy of the family) was not driving myself. They arrived and we had a lighthearted evening overshadowed with what I had to do, and started out the next day. To say we surprised my parents was an understatement. As soon as they saw me they knew I had news.
After the shock we began to plan. They knew my records were sent to University of Pittsburgh for consideration. I had to make arrangements with work, my apartment, etc. I would be moving back home at the age of 29. Not something I thought should happen, I always felt that being the last child they deserved their time alone when I turned 18 and made sure they got it. It was the least I could do for all they did for me over the years. Since daddy was close to retiring, he decided to take early retirement when my call came through and stay with me in Pittsburgh. The hospital recommended that one family member stay through the entire ordeal so the recipient would have someone they could talk to about it later if needed. Looking back on it now, I don’t know how Mom stayed behind and handled it all. She worked, came home and returned numerous phone calls, played receptionist to a constantly ringing phone and worried. She & daddy drove up for the initial surgery, but she flew back home, after I was out of intensive care. How she found the strength to leave amazes me to this day. She is one of the strongest women I know. Daddy had a different job. He watched me fight to make it. When I was in and out of a rejection coma and the doctor told him prayers were all that was keeping me here, he prayed, and stressed whether to tell mom. He decided not to tell her, and wait. His unshakable faith in God saw him through. In three days I was awake and my new lungs were functioning at 100%.
Even though I spent the time in the hospital, I remember the time fondly. The first time I had a bronch and was craving decent food daddy brought me the biggest order of pancakes and sausage I’d ever seen. Each day he brought me an orange-which we shared and some popcorn. During my second lung transplant, both parents stayed with me at transplant housing in Gainesville and the tradition of sharing an orange carried over. Dad would slice it and we’d all watch TV and eat it. The five weeks in Pittsburgh helped me see just how unshakable daddy’s faith really was. He was always positive no matter what and did all he could to make sure I stayed that way too. The nurses put 2 recliners in my room, one for me and one for daddy. Sometimes I think they liked him being there the best. They would laugh when they saw both of us, our feet propped up, sleeping in our chairs with the TV on. When I was released to come home, we decided to drive instead of fly. I was concerned since we were in the middle of flu season and I was immuno-compromised. The doctor said ok so long as we stopped regularly and I walked. They didn’t want any blood clots forming from inactivity. Mom flew up and it was like one of our vacations we took together all over again. Except with the extra stops for walking.
The next 8 years passed quickly. I had as much of a normal life as a transplant recipient can. Trips to UPMC, took early out from the airline, moved to Orlando to be on the opening team of Disney Cruise Line, things were moving right along. Unfortunately so was chronic rejection. I noticed I was having trouble walking and talking at the same time, a warning sign. What followed was a nightmare. The last thing a recipient wants to hear is those two little words –chronic rejection. It feels like a death sentence all over again. The wind is crushed from your sail in seconds. I had to plan again, and tell my parents again. I’d bought a house in Lakeland, so the next 3 years I remember vividly. Not so nice, but I held onto the positive foundation from daddy and read the book of Job a lot during this time. Bell South loved my long distance calls to my parents. I called just to hear their voice and lift me up. I needed to piggy back my emotions from them to keep me positive. They obliged and even made many trips to see me.
Much of this time they didn’t see what I had to endure to survive. I felt I’d hurt them enough and tried to keep as much of the horror as possible from them. I’d tell them about it after everything was ok. I endured iv’s, hospital visits, still trying to work full-time and go to college full-time as well as a pulmonary rehabilitation exercise program. I lost 60 pounds through it all, was diagnosed as steroid induced diabetic and wondered if I’d make it to another transplant. It was at this time I was listed with Gainesville. No other center wanted to do another transplant for me. This was the emotional chasm that almost destroyed me. Hearing all these centers tell me no, when they are supposed to save lives. My thesis in college reflected all my anger during this time and was directed to these centers. This was the only way I knew to release the negative emotion building up inside me. Shands at Gainesville restored my faith in the medical field and gave me a comfort zone stronger than any other hospital I’d been to.
I finally had to call my parents when I was rushed to the hospital and the doctor told me I needed to decide on whether to go on a respirator or die comfortably on morphine. I didn’t think it was that bad, but then again I wasn’t at Shands either. Mom and daddy were volunteering at the Lions Club making a spaghetti dinner, so I called a sister and asked if she’d let them know I needed to talk to them. The next day my room was filled with family. I needed to know they were all right with my decision, after so many years of fighting the thought of dying comfortably was so appealing. However, I couldn’t let daddy down. I heard him mention to mom that he still saw a spark of the fighter in me, and knew they were holding out for a miracle. I decided to go for the respirator, was moved to ICU and waited through the night. His miracle happened, I didn’t need the respirator and was sent home 2 days later. I immediately made a trip to Shands to discuss what I needed to put in an advanced directive. That night at 3:00 am they got another miracle. We were home and my call came through. We drove back to Gainesville and I got my single left lung transplant.
It was about seven months after this that dad began to show signs of Alzheimer’s. The thought that this man, who has given so much, should have to endure this was unthinkable. I’ve always called him “Mr. Volunteer” and credit my helping others like I do from watching him all my life. We watched him deteriorate for two years; it was so rapid we barely had time to adjust. It hit my mother the hardest. She had to watch each day as he struggled to walk, form sentences and the final days in the nursing home. She just couldn’t lift him anymore, being a small petite woman herself. I still saw the daddy I’ve always known. Living my life disabled taught me a lot, the first was that daddy was still a person and would be treated as such. It was my turn to give something back to him on my visits. I called regularly to keep mom upbeat, but the visits were for dad. In the last 6 months of his life, I had a few obstacles of my own. I was treated for rejection and was waiting for a kidney transplant, hoping for living donor. I was told the wait could be five years.
I couldn’t talk to dad about all this anymore, so I drew on what he’d given me all these years. I didn’t want to burden mom, she was under enough pressure. I did want her to know that I understood, and they were here with me even if not physically. I visited them for a week, what was to be my last precious moments with daddy. After I got home, two days later I got a call from the kidney transplant program, they had a kidney for me! I couldn’t believe it, it was only six months of waiting. I called mom, hoping she could find time to let everyone know. I got out of the hospital one week later on Thursday and daddy went in on that Friday. From the hospital he went to a nursing home. I got daily reports from my sisters and stressed if I’d be able to see him again. I was so freshly out of a transplant I couldn’t go visit him in a nursing home yet. I finally got the ok at 3 weeks out with a few restrictions and we drove up. We got there late Wednesday and he passed away 12 AM on Friday June 3,2005. I got to see him, but he was semi-comatose so I’ll never know if he knew I was there. I know I was and I still drew strength from the man that is my daddy.
I had to leave early on Friday for an appointment a shands. My kidney wasn’t functioning they way they hoped and they wanted to admit me. It was then that the loss of daddy hit me. He wasn’t here to tell me, it was going to be ok. If I were admitted how would I go to his funeral and say goodbye? The loss was so great I cannot describe it. I had to be strong so mom wouldn’t hear all this over the phone. I was also scared to death of having a kidney biopsy and the thought was more than I could endure. Mom knew this too. At the last minute, they discovered they couldn’t do the biopsy and I could go home. I called mom and we both said at the same time “thanks dad”, he was still watching out for me.
Even though my daddy has only been gone a little more than a week, I’ve learned that the best tribute I can give to this man for all he’s taught me is to keep him forever in my heart. When something bad happens I touch my heart and remember him, his strengths and when something good happens I touch my heart and say “thank you daddy”. I have a large jar of "pennies from heaven" too, and know that silver lining behind the clouds is Daddy telling me he's still there watching over me.
I miss him and need him more with each passing year.
I am posting this today July 3,2010 because today my daddy would have been 85 years old. We now believe it was not Alzheimers.
Through a breaking heart and tear filled eyes this is for the most wonderful daddy in the world.
I love you daddy... Happy Birthday..
Wednesday, June 16, 2010
Lifes little inconsistencies
I've pondered a few different topics to post, and after this afternoon this seemed the craziest one -so here I go.
My pharmacy had put in for me to receive the Levemir insulin pen since I am currently covered in lovely shades of black & blue. (If they grew together I might have a nice tan eventually). This and two other facts:
1. I seem to have a terrible cas of "dropsy" when I hold the insulin bottle. My pharmacist is great with "just come on up and I'll have you another bottle ready". He seems to know my panic voice, each time.
2. I'm running out of places to inject that long needle (to me anyway) syringe. "Count to ten & push" Wait "Let's try fifteen"
Sunday I hit a bit of muscle and bled-plus the pain and itch were no fun either.
Well, he got the approval for the pens so I went to pick them up.It seems though my doctor forgot to order a prescription for the needles. So I had to return today.
Now here's the tricky part... My Part D provider approved the pens BUT not the needles.
Ok so how do they expect me to take insulin? Drink it?
I paid for the needles, not wanting to make another trip and left. I've tried the auto-refill and kept getting email notifications every other day for different prescriptions. Auto refill does not work for someone like me with so many Rx's and dropped off at different times.
I called my Part D Provider and the nice young lady couldn't understand why either. She kept naming of syringes they covered but no needles. I calmly stated those were syringes not the needles, do you know the difference? She suggested that Medicare Part B covered the needles as they were diabetic supplies. I replied no, their idea of supplies is a glucometer and test strips.
I asked why they would give me insulin pens and no needles? not sure.
Well, after 25 minutes on and off hold it was discovered that they do not cover the "nano" smallest and most comfortable pen needle on the market.
To make a long story short: When it is not them doing the daily injections-comfort and bruises do not matter.
My pharmacy had put in for me to receive the Levemir insulin pen since I am currently covered in lovely shades of black & blue. (If they grew together I might have a nice tan eventually). This and two other facts:
1. I seem to have a terrible cas of "dropsy" when I hold the insulin bottle. My pharmacist is great with "just come on up and I'll have you another bottle ready". He seems to know my panic voice, each time.
2. I'm running out of places to inject that long needle (to me anyway) syringe. "Count to ten & push" Wait "Let's try fifteen"
Sunday I hit a bit of muscle and bled-plus the pain and itch were no fun either.
Well, he got the approval for the pens so I went to pick them up.It seems though my doctor forgot to order a prescription for the needles. So I had to return today.
Now here's the tricky part... My Part D provider approved the pens BUT not the needles.
Ok so how do they expect me to take insulin? Drink it?
I paid for the needles, not wanting to make another trip and left. I've tried the auto-refill and kept getting email notifications every other day for different prescriptions. Auto refill does not work for someone like me with so many Rx's and dropped off at different times.
I called my Part D Provider and the nice young lady couldn't understand why either. She kept naming of syringes they covered but no needles. I calmly stated those were syringes not the needles, do you know the difference? She suggested that Medicare Part B covered the needles as they were diabetic supplies. I replied no, their idea of supplies is a glucometer and test strips.
I asked why they would give me insulin pens and no needles? not sure.
Well, after 25 minutes on and off hold it was discovered that they do not cover the "nano" smallest and most comfortable pen needle on the market.
To make a long story short: When it is not them doing the daily injections-comfort and bruises do not matter.
Wednesday, June 9, 2010
Shooting Stars Mag: Crystal Allure Giveaway: Transplant Awareness
Check out this link for a chance to win a Transplant Awareness Bracelet!
Shooting Stars Mag: Crystal Allure Giveaway: Transplant Awareness
Shooting Stars Mag: Crystal Allure Giveaway: Transplant Awareness
Friday, June 4, 2010
Awareness Ribbon Earrings Sterling SIlver Organ Donation : GemsCrystalsAndWire - ArtFire Jewelry
Awareness Ribbon Earrings Sterling SIlver Organ Donation : GemsCrystalsAndWire - ArtFire Jewelry
Sterling Silver earring posts attached to sterling silver awareness ribbons..
Delicately dangling Swarovski crystals in emerald green, to promote organ donation/transplantation.
I can recreate these earrings in the awareness of your choice.
Sterling Silver earring posts attached to sterling silver awareness ribbons..
Delicately dangling Swarovski crystals in emerald green, to promote organ donation/transplantation.
I can recreate these earrings in the awareness of your choice.
Thursday, May 27, 2010
Chronic Rejection
For some reason unknown to me, this topic has been on my mind lately. I certainly hope it is not a harbinger of the doom to come. I can honestly say I have endured chronic rejection with my first double lung transplant, and have NO desire to be tested in this way again. I decided to do a quick search on the topic, with respect to lungs, and found numerous medical updates on the net, literally filled with doom and gloom.
Clinical aspects aside, not one touched on what a patient actually feels at this time in their life.
Chronic rejection in a lung transplant feels like a death sentence-mentally, physically and yes emotionally. Many times I described it just like that.. Before I actually knew the true meaning of those words. I can still vividly remember the day I was told. I was at work when the call came in. Thankfully, someone saw my expression and stood behind my chair. If not there would have been the sight of me & the chair gliding across the room.. I fell into my chair speechless, mind totally blank unable to process the words. What now? I knew I was short of breath, but this? The feeling is similar to being first diagnosed. That helpless feeling of not knowing what to do. Knowing in my subconscious what was about to happen in my future-or lack of.
To be totally honest, I was woefully unprepared for the next few years of my life. Internet searches tell of the morbidity rate in chronic lung transplant rejection, so this was something else to add to my thoughts. At 40 years old, one rarely thinks of "final arrangements". This I had to do because it was the last thing I wanted my parents to worry about afterwards. They had watched me struggle and survive enough. I made plans for a month long visit to UPMC for treatment and a re-eval for possibly listing for another transplant. To say the least, chronic rejection treatments back then left alot to be desired. I remember having a death grip on the bed rails, screaming with pain in my knees, while the wonderful nurses ran for something to knock me out. And then just when we thought I'd crossed the hurdle- the serum sickness started... Oh what a joy... I'll leave that descruption to your imagination. Believe me, it was not pretty. I finally left UPMC in a wheelchair, my legs too weak due to the knew pain. I was also denied a relist, due to kidney function.
I geared up to find a center who would consider me for a relist along with all the other issues I was tackling. I found one. A wonderful center, and I still go there today. UF is MY comfort zone. Back to the story. My knees were so weak, if I sat on the floor-forget getting up. I had to crawl to a chair and using my arms lift myself up into the chair, in order to eventually stand. I actually got stuck in the bath tub...alone.. until I figured a way to gt myself out. It's funny now, but believe me, not when you're freezing and pruning at the same time. I fell in the balcony to my apartment and couldn't get up. I waited until someone came home from work, sunburnt and almost out of oxygen before I could get help. Sweeping floors was an all day affair, for one room only. I had a bar stool and my broom. I'd sweep 2 tiles and sit to catch my breath. Move the chair, sweep...you get the picture. Literally an all day affair. I had lost so much weight trying to breathe, a light wind almost blew me over. Thank goodness Mom was there at the time to catch me.
I would sit outside each morning watching the sunrise, drinking my cup of coffee and wonder how many of those beautiful scenes I'd enjoy. I told everyone that God was whispering through the palm trees, it wasn't the wind blowing. I reveled in all the scenes I could. This is what kept me going mentally.
UF kept me going physically. I had an exercise program that would make an olympian jealous. Well, you get the idea. I went to rehab 3 days a week, had (still have) a multi station gym and treadmill at home. On weekends I would walk the mall. I knew exactly where each bench was to sit down and catch my breath. Every clinic vist, every three months my physical progress was checked. I had to be able to leg press 80% of my body weight. When I finished I was actually lifting 10 pounds more than my body weight.
Psychologically, I was told to stop doing my spirometry at home. Watching those numbers drop daily is so defeating. I already knew what was happening. This was showing me the undeniable proof. Thanks to the transplant team at UF I've learned that if I can exercise when I'm dying and on oxygen, I can do it when I'm not.
I remember many times wondering why I ever had the first transplant at all. Surely my original symptoms were nothing like this. But those thoughts have to be stopped. My original disease had not progressed that far, soI couldn't realistically say this. Plus, I had enjoyed 9 years of life that I would never have had. I competed in the 1994 US Transplant Games, hiked El Yunque in Puerto Rico, and so many other wonderful things I would have only imagined if I had not taken the chance on a lung transplant. I went back to work, attained goals and dreams all through lung transplantation. I remember saying after my first transplant that I'd never have a second. How wrong I was. I would not trade one part of my life to go back and change my mind.Good, bad, ugly, or otherwise.
My biggest fear is that I will once again hear those life altering words: You have chronic rejection.
I know the outcome, but would rather spend my time not thinking about it and living my life.
To my friends facing chronic rejection: I feel your pain, I remember the emotions. I'm here for you.
And I'm praying for you to desperately get the chance. I'm also promoting organ donation and research to help us all.
Clinical aspects aside, not one touched on what a patient actually feels at this time in their life.
Chronic rejection in a lung transplant feels like a death sentence-mentally, physically and yes emotionally. Many times I described it just like that.. Before I actually knew the true meaning of those words. I can still vividly remember the day I was told. I was at work when the call came in. Thankfully, someone saw my expression and stood behind my chair. If not there would have been the sight of me & the chair gliding across the room.. I fell into my chair speechless, mind totally blank unable to process the words. What now? I knew I was short of breath, but this? The feeling is similar to being first diagnosed. That helpless feeling of not knowing what to do. Knowing in my subconscious what was about to happen in my future-or lack of.
To be totally honest, I was woefully unprepared for the next few years of my life. Internet searches tell of the morbidity rate in chronic lung transplant rejection, so this was something else to add to my thoughts. At 40 years old, one rarely thinks of "final arrangements". This I had to do because it was the last thing I wanted my parents to worry about afterwards. They had watched me struggle and survive enough. I made plans for a month long visit to UPMC for treatment and a re-eval for possibly listing for another transplant. To say the least, chronic rejection treatments back then left alot to be desired. I remember having a death grip on the bed rails, screaming with pain in my knees, while the wonderful nurses ran for something to knock me out. And then just when we thought I'd crossed the hurdle- the serum sickness started... Oh what a joy... I'll leave that descruption to your imagination. Believe me, it was not pretty. I finally left UPMC in a wheelchair, my legs too weak due to the knew pain. I was also denied a relist, due to kidney function.
I geared up to find a center who would consider me for a relist along with all the other issues I was tackling. I found one. A wonderful center, and I still go there today. UF is MY comfort zone. Back to the story. My knees were so weak, if I sat on the floor-forget getting up. I had to crawl to a chair and using my arms lift myself up into the chair, in order to eventually stand. I actually got stuck in the bath tub...alone.. until I figured a way to gt myself out. It's funny now, but believe me, not when you're freezing and pruning at the same time. I fell in the balcony to my apartment and couldn't get up. I waited until someone came home from work, sunburnt and almost out of oxygen before I could get help. Sweeping floors was an all day affair, for one room only. I had a bar stool and my broom. I'd sweep 2 tiles and sit to catch my breath. Move the chair, sweep...you get the picture. Literally an all day affair. I had lost so much weight trying to breathe, a light wind almost blew me over. Thank goodness Mom was there at the time to catch me.
I would sit outside each morning watching the sunrise, drinking my cup of coffee and wonder how many of those beautiful scenes I'd enjoy. I told everyone that God was whispering through the palm trees, it wasn't the wind blowing. I reveled in all the scenes I could. This is what kept me going mentally.
UF kept me going physically. I had an exercise program that would make an olympian jealous. Well, you get the idea. I went to rehab 3 days a week, had (still have) a multi station gym and treadmill at home. On weekends I would walk the mall. I knew exactly where each bench was to sit down and catch my breath. Every clinic vist, every three months my physical progress was checked. I had to be able to leg press 80% of my body weight. When I finished I was actually lifting 10 pounds more than my body weight.
Psychologically, I was told to stop doing my spirometry at home. Watching those numbers drop daily is so defeating. I already knew what was happening. This was showing me the undeniable proof. Thanks to the transplant team at UF I've learned that if I can exercise when I'm dying and on oxygen, I can do it when I'm not.
I remember many times wondering why I ever had the first transplant at all. Surely my original symptoms were nothing like this. But those thoughts have to be stopped. My original disease had not progressed that far, soI couldn't realistically say this. Plus, I had enjoyed 9 years of life that I would never have had. I competed in the 1994 US Transplant Games, hiked El Yunque in Puerto Rico, and so many other wonderful things I would have only imagined if I had not taken the chance on a lung transplant. I went back to work, attained goals and dreams all through lung transplantation. I remember saying after my first transplant that I'd never have a second. How wrong I was. I would not trade one part of my life to go back and change my mind.Good, bad, ugly, or otherwise.
My biggest fear is that I will once again hear those life altering words: You have chronic rejection.
I know the outcome, but would rather spend my time not thinking about it and living my life.
To my friends facing chronic rejection: I feel your pain, I remember the emotions. I'm here for you.
And I'm praying for you to desperately get the chance. I'm also promoting organ donation and research to help us all.
Thursday, May 20, 2010
The Blessing of Mini-me's
I had to replace the batteries in my spirometer this morning, and decided to stop for lunch on the way home. While sitting at the table quietly eating my roast beef sandwich, I noticed a family sitting to my left.
Their daughter was this adorable little cherub with blonde ringlets for hair. She was very involved with Mom, but dad and grandpa (I think) were totally immersed in eating. All at once this little cherub began to cry and grab her eyes, saying they hurt. My guess is she has an eye issue as Mom started searching for eye drops and trying to calm her down.
This is when I began to become a little irate with the father. Instead of talking to his daughter and soothing her worries he continued to eat! And he was the one sitting next to her. Mom got the eye drops and ushered mini-me into the ladies room to put them in, while Dad watched her leave and proceeded to grab the little ones fries and eat them! What a louse! Actually I was thinking much worse but that's the nicest name I could think of for the moment. Mom & daughter returned and once again the little one was smiling and chatting away. The only words I heard dad say were " you better eat your food". No smile. No show of affection at all for this little adorable creature.
This has become the basis of today's blog.
Do people truly realize what an unbelieveable blessing it is to have this miniature carbon copy of themselves?
Or is it just people like me, who never had that chance?
Do people realize what they've been given?
I was told when I was 17 that I could never have children. Not only would it be fatal for me, there was a 90% chance of the child being brain dead due to my lack of oxygen. Basically this has been a no brainer for me all my life, but that does not negate the emotional nor the mental impact of watching a carbon copy of yourself grow and succeed. Or for me the lack of.
I had a tubaligation at 18. The next part you'll read I have never discussed since the fatal day it happened.Twelve years later, while on the transplant list waiting for my first life saving/altering lung transplant we discovered that tubal failed. I was 5 weeks pregnant. I was on oxygen. I was living on 45% room air. I knew what had to be done, and I signed the papers, went into the hospital and it was done. Many may think me cold in this regard, but when you've lived most of your life being told this is how it is, that is just what you do. Another tubal was performed, but this time I sternly told the doctor: "You make sure this does not happen again, I will not endure this again physically but most of all emotionally and mentally!" One time was enough for me. Also while this was happening, another choice had to be made. Whether to have a wedding or a honeymoon. The wedding happened on a Saturday evening and on Monday morning I was admitted into the hospital. So, there was one day for a honeymoon.
Does my decision haunt me? Yes, sometimes it does. During heated arguments it was always thrown in my face that I never talked about it, just did it. Honestly there was nothing to talk about. If I did, it would have made it more difficult to do what had to be done. I could never be so selfish as to risk a childs life like that. In my opinion there are way too many out there no one wants, who I could love just as much if not more than a biological child. My doctor placed us on a list for a newborn adoption. Well, the day he called to tell me the good news that he had a pregnant mom who wanted to give us her baby, I had to tell him that I had been single for a week.. Once again... no child for me.
I was in my early thirties when it hit me, "Wow a parent is responsible for molding a childs personality, attitude, and goals." This hit me like an epiphany. I realized the impact a parent has. If it took me this long to realize it, how many others much younger wished it hit them sooner? I fully realize it's tough for parents in todays world. You have to be ever vigilant. But, I also know when both parents work together, nothing is impossible. I see it everyday with my nieces and the time both parents take with the kids. They should be honored for all both of them do. I am so proud they are MY family! I see well-mannered and well- adjusted kids. Yeah they're sometimes a hand full-but look at the gene pool they came from! LOL
So my words for today..... Hugs those Mini-me's until they cry for air! Tell them constantly you love them..and be ever vigilant in keeping them straight. There are those of us out there who wish we were in your shoes for a day!
Their daughter was this adorable little cherub with blonde ringlets for hair. She was very involved with Mom, but dad and grandpa (I think) were totally immersed in eating. All at once this little cherub began to cry and grab her eyes, saying they hurt. My guess is she has an eye issue as Mom started searching for eye drops and trying to calm her down.
This is when I began to become a little irate with the father. Instead of talking to his daughter and soothing her worries he continued to eat! And he was the one sitting next to her. Mom got the eye drops and ushered mini-me into the ladies room to put them in, while Dad watched her leave and proceeded to grab the little ones fries and eat them! What a louse! Actually I was thinking much worse but that's the nicest name I could think of for the moment. Mom & daughter returned and once again the little one was smiling and chatting away. The only words I heard dad say were " you better eat your food". No smile. No show of affection at all for this little adorable creature.
This has become the basis of today's blog.
Do people truly realize what an unbelieveable blessing it is to have this miniature carbon copy of themselves?
Or is it just people like me, who never had that chance?
Do people realize what they've been given?
I was told when I was 17 that I could never have children. Not only would it be fatal for me, there was a 90% chance of the child being brain dead due to my lack of oxygen. Basically this has been a no brainer for me all my life, but that does not negate the emotional nor the mental impact of watching a carbon copy of yourself grow and succeed. Or for me the lack of.
I had a tubaligation at 18. The next part you'll read I have never discussed since the fatal day it happened.Twelve years later, while on the transplant list waiting for my first life saving/altering lung transplant we discovered that tubal failed. I was 5 weeks pregnant. I was on oxygen. I was living on 45% room air. I knew what had to be done, and I signed the papers, went into the hospital and it was done. Many may think me cold in this regard, but when you've lived most of your life being told this is how it is, that is just what you do. Another tubal was performed, but this time I sternly told the doctor: "You make sure this does not happen again, I will not endure this again physically but most of all emotionally and mentally!" One time was enough for me. Also while this was happening, another choice had to be made. Whether to have a wedding or a honeymoon. The wedding happened on a Saturday evening and on Monday morning I was admitted into the hospital. So, there was one day for a honeymoon.
Does my decision haunt me? Yes, sometimes it does. During heated arguments it was always thrown in my face that I never talked about it, just did it. Honestly there was nothing to talk about. If I did, it would have made it more difficult to do what had to be done. I could never be so selfish as to risk a childs life like that. In my opinion there are way too many out there no one wants, who I could love just as much if not more than a biological child. My doctor placed us on a list for a newborn adoption. Well, the day he called to tell me the good news that he had a pregnant mom who wanted to give us her baby, I had to tell him that I had been single for a week.. Once again... no child for me.
I was in my early thirties when it hit me, "Wow a parent is responsible for molding a childs personality, attitude, and goals." This hit me like an epiphany. I realized the impact a parent has. If it took me this long to realize it, how many others much younger wished it hit them sooner? I fully realize it's tough for parents in todays world. You have to be ever vigilant. But, I also know when both parents work together, nothing is impossible. I see it everyday with my nieces and the time both parents take with the kids. They should be honored for all both of them do. I am so proud they are MY family! I see well-mannered and well- adjusted kids. Yeah they're sometimes a hand full-but look at the gene pool they came from! LOL
So my words for today..... Hugs those Mini-me's until they cry for air! Tell them constantly you love them..and be ever vigilant in keeping them straight. There are those of us out there who wish we were in your shoes for a day!
Tuesday, May 11, 2010
Whew!
I decided I have so many things going on in my little brain I need to download a few.
Mothers Day:
Well, it turned out pretty good. Since I have no children of the human variety, my 3 wonderful, furry, four-legged boys planned to make my day special. They each had taken on chores that normally I would be doing...
Mothers Day:
Well, it turned out pretty good. Since I have no children of the human variety, my 3 wonderful, furry, four-legged boys planned to make my day special. They each had taken on chores that normally I would be doing...
DB (DragonBeast-Ding Bat) decided he would do the dishes all day... Coming from a dog that tries to hide under the cushions to escape a bath, this was a big decision for him.
CC (Captain Chaos) had the chore of making the bed. Considering the fact he Is a Toy Fox Terrier, this was a major undertaking.
While Oz, dear "fruitcake" Oz, well his chore was to keep the floors swept. Since he is the one dragging all manner of items in from outside I guess this chore ws only fitting. However, Oz has a terrible scratch-turned-cut-turned gash on his right paw so he was excused from duty. Much to the chagrin of the other two I might add.
The day turned out nice so we went for motorcycle ride along the gulf coast. Decided to stop at Pop's Sunset Grill and have lunch sitting on the Intercoastal waterway. The beaches and Gulf were packed. Mooch (our resident dolphin) stood no chance of playing today, too many boats. After a quick lunch of scallops, shrimp & Grouper (did I mention I love seafood) we rode along Casey Key.
I spent the late afternoon taking photos of a few pieces I'd recently created so I could do my usual -edit, crop, yada,yada before they hit the net. I was having no luck whatsoever inside so decided to take my endeavors outside for a more natural light. It was at this point I was completely engrossed in taking a good photo when I heard the alarm sound! Oz is the resident alarm. If you ever hear him bark you'll know what I mean. I looked down, which I normally don't do, and sitting poised to strike at my right foot was a snake! not a black one (they're friendly and keep rats away) but a brownish color one. I gasped, CC (the resident protector) grabbed the snake in his mouth and started to shake it. I screamed! Now my concern is for my boy, what if this snake is poisonous and bites him. My boys would chase down an alligator thinking what fun to chase such a big lizard! CC drops the snake at my scream, which proceeds to slither under a plant pot.
We all go running in the house. The snake still has not been found. He either got scared to death (just like us) or went to visit the neighbor.
Well, Monday Oz went to the vet and now has a large bandage on his leg. Poor fella, it's driving him bonkers. He has antibiotics he takes twice a day, DB has heart meds & Lasix he takes daily. Pretty soon I'll need to have a pill minder for my boys just like the ones I have for me.
Thursday, May 6, 2010
Cinco de Mayo-God Bless Susie
Yes I know I'm a day late. I have a great excuse believe me. I was celebrating the wonders of organ donation and how one person can change a life.
It was on May 3, 2005, that my Donor Dad, Ron Paxton had to make the most heart-wrenching decision of his life. He chose to remove his lovely and only daughter Susie from life support and donate her organs.
May 3rd was also her birthday.....
I received one of Susie's kidneys on May 5th. 05-05-05 to be exact. While I celebrate one of the best days of my life, my Donor Dad is quietly grieving over the loss of his loving daughter. Through letters and phone calls, we have discovered Susie & me had many parallels in our lives.
We were six months apart in age.
We both had serious heart problems as infants-Susies' was found early -mine was not. Regrettably during surgery the heart lung machine malfunctioned and she remained "Daddy's Little Girl" her entire life.
Susie's Mother had lung issues that would have required a lung transplant had she chosen to.-I've had 2 lung transplants.
Susie was an athlete and ran in the Special Olympics- I competed in Track & Field at the U.S. Transplant Games.
It is said, When God closes a door -He opens a window.
Donor Dad lost his little girl May 3rd
I lost my Daddy on June 3rd and his birthday would have been July 3rd
I still miss my daddy every second of the day, but through the miracle of organ transplantation I am Blessed with one great Donor Dad.
Susie will forever be honored with the pendant I designed above. The "sisters" cameo is designed in the pocketbook style of wrapping, and the Swarovski crystals are in our birthstones. The left side is one emerald for Susie, while the right side holds one rose as well as one emerald crystal signifying what she gave to me.
I worry over my Donor Dad each year on the 3rd of May and say a few extra prayers for him and Susie.
I celebrate her life and the life the two of them gave me on the 5th of May.
Happy Cinco de Mayo everyone!!
Wednesday, April 28, 2010
Dreaded Dentist
Well I finally decided I better update the dental issue.. MY pocketbook is going to be in serious recovery mode.. It appears my tooth is cracked completely down the center.. UGH.. And as if that weren't enough the back moves independently from the front.. So it's loose..
The dentist gave me these options:
1. If he can remove the back without hitting the nerve or root, he can then do a root canal and cap the tooth.
2. If the tooth brings the root with it, I can have the teeth on either side prepped for a bridge.. Ruin 2 more teeth?
3. As in no. 2 I can opt for an implant.
Me, an implant?? never thought it would be a tooth???
Well the worst case scenario came topass. The dentist got the back piece off, and holding on for dear life was the root. The tooth had to be completely removed. If only the 2nd piece would have come out as easily as the first.
It took another hour to get the other half of my tooth out! it also took 8-10 stitches to close the gap.
Have you ever tried to tell a dentist that the stitching thread was tickling your nose it was so long-AND try not to move? I mean this man has a needle going for my gum..
I believe we are settling on the implant as he hates to ruin 2 other perfectly healthy teeth.
It will take about 8-10 months to complete, all of which I will be missing a much needed tooth.
At least maybe this way I can save a little of the $2900 I'll need for this little work of art..
The dentist gave me these options:
1. If he can remove the back without hitting the nerve or root, he can then do a root canal and cap the tooth.
2. If the tooth brings the root with it, I can have the teeth on either side prepped for a bridge.. Ruin 2 more teeth?
3. As in no. 2 I can opt for an implant.
Me, an implant?? never thought it would be a tooth???
Well the worst case scenario came topass. The dentist got the back piece off, and holding on for dear life was the root. The tooth had to be completely removed. If only the 2nd piece would have come out as easily as the first.
It took another hour to get the other half of my tooth out! it also took 8-10 stitches to close the gap.
Have you ever tried to tell a dentist that the stitching thread was tickling your nose it was so long-AND try not to move? I mean this man has a needle going for my gum..
I believe we are settling on the implant as he hates to ruin 2 other perfectly healthy teeth.
It will take about 8-10 months to complete, all of which I will be missing a much needed tooth.
At least maybe this way I can save a little of the $2900 I'll need for this little work of art..
Wednesday, April 21, 2010
All-nighter
Well I finally decided to get up after a long-long-sleepless night. My dilemma is due to a wonderful antibiotic called Levacquin. Levacquin is one of those "upper end" antibiotics, you know the kind. Designed to knock anything, and I mean anything out of you. I took only one, and trust me that is all anyone needs.
I was prepping for that dreaded dental work I have to endure later this morning..
I realized yesterday evening the pain in my back was also one of those lovely side effects, which would have provided a great excuse from housework. Sweeping the floors was utterly a chore this time. Upon my realizing this, I began hoping and praying the excruciating headache would not appear. Wrong. It did appear, just as I was falling asleep, and has lasted me through the night. You know the type. If only I could get my head in one comfortable position long enough to fall asleep, kind of headache. Well tonight there was no comfortable position, because along with the headache, a distant cousin the stiff neck also came along for the journey. I remember when I had to take Levacquin for almost a year, wondering when all the side effects would just go away...Far..Far...away. At one point I remember thinking (so sleep deprived), "Am I really awake, or dreaming I'm awake?" Either way I was so tired it really did'nt matter.
So, after wondering; Could my blood sugar be making my insides feel all goofy?, or Can it all be this darling little pill? I decided enough was enough, a body can only be uncomfortable for so long. I got up. So here I sit, straight as can be, not moving my head. It hurts less when upright, so the rest of the night it will be so.
Thankfully blood sugar is fine, so it must be the Levacquin. Darn. I am typing this as my coffee pot brews that wonderful life saving blood I so need today. Hopefully, even half-caff along with a Tylenol (yes I checked my temperature first) will alleviate this feeling that my head has been pile driven onto the cement a few too many times. On a more positive note: Maybe I can fall asleep in the dentists chair and not remember a thing... Here's hoping..
I was prepping for that dreaded dental work I have to endure later this morning..
I realized yesterday evening the pain in my back was also one of those lovely side effects, which would have provided a great excuse from housework. Sweeping the floors was utterly a chore this time. Upon my realizing this, I began hoping and praying the excruciating headache would not appear. Wrong. It did appear, just as I was falling asleep, and has lasted me through the night. You know the type. If only I could get my head in one comfortable position long enough to fall asleep, kind of headache. Well tonight there was no comfortable position, because along with the headache, a distant cousin the stiff neck also came along for the journey. I remember when I had to take Levacquin for almost a year, wondering when all the side effects would just go away...Far..Far...away. At one point I remember thinking (so sleep deprived), "Am I really awake, or dreaming I'm awake?" Either way I was so tired it really did'nt matter.
So, after wondering; Could my blood sugar be making my insides feel all goofy?, or Can it all be this darling little pill? I decided enough was enough, a body can only be uncomfortable for so long. I got up. So here I sit, straight as can be, not moving my head. It hurts less when upright, so the rest of the night it will be so.
Thankfully blood sugar is fine, so it must be the Levacquin. Darn. I am typing this as my coffee pot brews that wonderful life saving blood I so need today. Hopefully, even half-caff along with a Tylenol (yes I checked my temperature first) will alleviate this feeling that my head has been pile driven onto the cement a few too many times. On a more positive note: Maybe I can fall asleep in the dentists chair and not remember a thing... Here's hoping..
Monday, April 19, 2010
I was hacked!
It appears someone is having fun attemtping to hack into many of my accounts.
So far I've had to change innumerable passwords. Being on Prednisone and so many things going on at once I have trouble remembering them in the first place.
I received a mesage from Facebook that someone from Canada was trying to log into my account with a smart phone- Not so smart.
Now issues with Google and my blogs... Not to mention a few other places.
I guess some just have nothing better to do or nothing interesting in their lives..
well, hopefully all will calm down now.
I have been lax in posting also due to attempting to promote my business and other blog. But mainly due to severe-(and I mean severe) allergies as well as cracking a tooth which now need major repair...
Lovely---I hate going to the dentist... Transplant-no problem, Dentist-dread like the plague.
So far I've had to change innumerable passwords. Being on Prednisone and so many things going on at once I have trouble remembering them in the first place.
I received a mesage from Facebook that someone from Canada was trying to log into my account with a smart phone- Not so smart.
Now issues with Google and my blogs... Not to mention a few other places.
I guess some just have nothing better to do or nothing interesting in their lives..
well, hopefully all will calm down now.
I have been lax in posting also due to attempting to promote my business and other blog. But mainly due to severe-(and I mean severe) allergies as well as cracking a tooth which now need major repair...
Lovely---I hate going to the dentist... Transplant-no problem, Dentist-dread like the plague.
Thursday, April 8, 2010
National Organ Donor Awareness Month
April is our month. Our nationally recognized month to promote organ donation/transplantation. Our one time to go above and beyond to make sure those who are still "waiting and dying" for a life saving organ get the chance we've had. Or in my case the "many chances" I've had.
I recently posted this on my Facebook page, Bette Luksha-Gammell wants to know. If you could go back to a crossroad in your life, would you go or would you take the same path knowing the outcome?
I posted this mainly to see what the responses would be. As I suspected the replying comments were from friends in the transplant community. We all, candidates & recipients have a common mental bond with this question. We seem to immediately apply questions such as this to the desicions we made on our health. The meaning in effect is that transplantation is our life. Our one true goal is to live. Not just to survive, but to Live.
Along with this goal is the obligation to spread the word about organ donation. We must give back. Someone was spreading the word while we lay too sick to do so. They helped us to survive long enough to Live. Now, we must all join the fight to make sure those waiting get their chance at Life as well.
It is necessary to dispel the negative rumors still in circualtion regarding organ donation.
As I write this, the current total for those waiting has hit 106,886!
The total number of transplants in January 2010 was a mere 2,198. Is it any wonder so many "die waiting"?
I could have been in this category three times. Yet, I was Blessed with a perfect match each and every time. Like many of you, transplantation changed my thought processes, my ideals and goals. At the age of 31 I could actually dream of a future. I got this wonderful spring in my step, this joy for life. The simple things that meant so much before, well their meaning has reached astronomical proportions. Facing death, a person learns what is important and to never take anything or anyone for granted.
Live like you were dying. We know the true depth of this statement. Enjoy and cherish each and every memory -good, bad and otherwise. For you might not have been here to even endure them.
But most importantly-GIVE BACK. PAY IT FORWARD.. Give someone the chance to experience all the obstacles this life has to offer. Promote organ donation/transplantation. Sign an organ donor card and tell your family. One day you may wake to find a loved one needs that life saving donation. Please don't wait until that time to sign that card. Do it now... You won't regret it.
Share your life....... Share your decision.... Recycle yourself......
I recently posted this on my Facebook page, Bette Luksha-Gammell wants to know. If you could go back to a crossroad in your life, would you go or would you take the same path knowing the outcome?
I posted this mainly to see what the responses would be. As I suspected the replying comments were from friends in the transplant community. We all, candidates & recipients have a common mental bond with this question. We seem to immediately apply questions such as this to the desicions we made on our health. The meaning in effect is that transplantation is our life. Our one true goal is to live. Not just to survive, but to Live.
Along with this goal is the obligation to spread the word about organ donation. We must give back. Someone was spreading the word while we lay too sick to do so. They helped us to survive long enough to Live. Now, we must all join the fight to make sure those waiting get their chance at Life as well.
It is necessary to dispel the negative rumors still in circualtion regarding organ donation.
As I write this, the current total for those waiting has hit 106,886!
The total number of transplants in January 2010 was a mere 2,198. Is it any wonder so many "die waiting"?
I could have been in this category three times. Yet, I was Blessed with a perfect match each and every time. Like many of you, transplantation changed my thought processes, my ideals and goals. At the age of 31 I could actually dream of a future. I got this wonderful spring in my step, this joy for life. The simple things that meant so much before, well their meaning has reached astronomical proportions. Facing death, a person learns what is important and to never take anything or anyone for granted.
Live like you were dying. We know the true depth of this statement. Enjoy and cherish each and every memory -good, bad and otherwise. For you might not have been here to even endure them.
But most importantly-GIVE BACK. PAY IT FORWARD.. Give someone the chance to experience all the obstacles this life has to offer. Promote organ donation/transplantation. Sign an organ donor card and tell your family. One day you may wake to find a loved one needs that life saving donation. Please don't wait until that time to sign that card. Do it now... You won't regret it.
Share your life....... Share your decision.... Recycle yourself......
Sunday, April 4, 2010
You never know where your Gift of Life may come from
http://abcnews.go.com/GMA/supermarket-customer-donates-kidney-favorite-cashier/story?id=10278738
This link takes you to the most wonderful story. What an Easter surprise to hear of such unslefish giving this morning... Another life saved through organ donation..
This link takes you to the most wonderful story. What an Easter surprise to hear of such unslefish giving this morning... Another life saved through organ donation..
Friday, March 19, 2010
Busy days can turn blue.
Upon waking this morning I realized it was going to be a busy day. I took my three boys for a quick walk, being ever mindful of little DB. DB is my little Toy Fox Terrier with a huge Alpha complex.
Our veterinarian has been treating DB for a severe heart problem for a few months, and it was time for his yearly physical and shots.
We've already increased the Lasix to twice a day if needed, but definitely once a day at least. Well, to say the least DB felt like Top Dog being able to go for a ride alone, without his brothers hogging windows and seats. He normally loves our veterinarian Dr. Ebert. Today was no different, he accepted his shots like a trouper, but decided he wanted no part of the nail clipping.
After DB was brought back in the room with me, he hid under the chair.. As usual his limit had been met.
Dr. Ebert came in to tell me his labs were good and he was ok to go home. His parting comment broke my heart. "His heart sounds horrible."
Four words-one small sentence, and my world comes crashing in. I've mentioned that through his initial diagnosis and meds, I began remembering my "old" health issues too. I remember running to find a bathroom when the Lasix kicked in. so I can only imagine a small 10 lb. dog on 20mg of Lasix.. We all hate to face the fact of a possible loss in our lives, more so when it's a Beloved pet. But DB is no ordinary pet.. He is the most Independently dependent canine I have ever had the pleasure to share a home with.
He must be on your lap if you sit down, under a blanket to stay warm. Then he is in total doggy heaven.
As I write this he has tucked himself under my sweatshirt to get close and warm. And snoring.
When DB is held, he puts his head on your shoulder and you feel the love and warmth all this little animal has to give. He is without a doubt -my best friend. Not mans'-mine.
DB has offered me comfort through chronic rejection with my first lung transplant, my second single lung transplant, neighbors poisoning his mate (an Airdale Terrier), losing his friend Maggie (Shih Tzu) to cancer, a kidney transplant, a pacemaker, and the list goes on.
I will take the best possible care of my little Alpha Dog. He has already earned his wings, but I want to keep him firmly planted on earth as long as possible.
Our veterinarian has been treating DB for a severe heart problem for a few months, and it was time for his yearly physical and shots.
We've already increased the Lasix to twice a day if needed, but definitely once a day at least. Well, to say the least DB felt like Top Dog being able to go for a ride alone, without his brothers hogging windows and seats. He normally loves our veterinarian Dr. Ebert. Today was no different, he accepted his shots like a trouper, but decided he wanted no part of the nail clipping.
After DB was brought back in the room with me, he hid under the chair.. As usual his limit had been met.
Dr. Ebert came in to tell me his labs were good and he was ok to go home. His parting comment broke my heart. "His heart sounds horrible."
Four words-one small sentence, and my world comes crashing in. I've mentioned that through his initial diagnosis and meds, I began remembering my "old" health issues too. I remember running to find a bathroom when the Lasix kicked in. so I can only imagine a small 10 lb. dog on 20mg of Lasix.. We all hate to face the fact of a possible loss in our lives, more so when it's a Beloved pet. But DB is no ordinary pet.. He is the most Independently dependent canine I have ever had the pleasure to share a home with.
He must be on your lap if you sit down, under a blanket to stay warm. Then he is in total doggy heaven.
As I write this he has tucked himself under my sweatshirt to get close and warm. And snoring.
When DB is held, he puts his head on your shoulder and you feel the love and warmth all this little animal has to give. He is without a doubt -my best friend. Not mans'-mine.
DB has offered me comfort through chronic rejection with my first lung transplant, my second single lung transplant, neighbors poisoning his mate (an Airdale Terrier), losing his friend Maggie (Shih Tzu) to cancer, a kidney transplant, a pacemaker, and the list goes on.
I will take the best possible care of my little Alpha Dog. He has already earned his wings, but I want to keep him firmly planted on earth as long as possible.
Monday, March 15, 2010
Go Gators
Now I don't mean the Florida Gators at University of Florida. I mean the Florida Gators as in alligators.
For the last few weeks on my morning walks I've seen a family of turtles (4-5) sunning the bank at a small pond on the Sumter Greenway. They always manage to duck back into the water before I can snap a picture.
This morning was a little different. As we started out and rounded the corner from my street onto Sumter, I again greeted the turtles but slowly floating in this small pond was a small alligator. It was no more than 3-3.5 feet in length. I quickly grabbed my phone to snap a photo, but alas having had my Blackberry only 2 days I took longer than he wanted me to. He slid to the bottom. Hopefully, NOT to jump out and attempt to grab one of my boys. Then it would be a fight to the death. No one messes with my boys.
We continued on our walk so the turtles could come back out and have a peaceful afternoon. At the next drainage pond, I looked in the distance searching for the 4 footer that usually basks on this bank. He was there. Suddenly I heard a loud splash close by-signalling possibly another gator in the area. Seeing nothing I went back in an attempt to zoom in on the other gator in the distance for a photo. I took a few and as I was leaving glanced down to the drain opening and there it was. The other gator that made the splash. Nose pointing at me, definitely warning me to stay out of his pond. I snapped a few quick photos, tightened the boys leashes and we finished on our walk.
Nature makes my morning walks much more enjoyable to trudging on the treadmill. My dogs chasing everything makes the walk interesting. I've been concerned that our little area might find it difficult recovering the unusual cold winter we've had. Thousands of fish were killed and had to be removed from our waterways due to the 10 days of continual freezing lows. Our yard is normaly filled with lizards of every kind and variety, but none so far... disappointing indeed. My giant rain frog who is renting space in my rain barrel is still alive, but I think his wife has gone to a warmer climate.
These walks as well as all my little creatures make my day easier. It's a calming way to face the day with no stress. Release those endorphins and take a short walk-or just sit outside and enjoy nature. The effects can be amazing..
P.S... I am a UF Gator too... Born that way-and thanks to the great people at Shands reborn that way.
For the last few weeks on my morning walks I've seen a family of turtles (4-5) sunning the bank at a small pond on the Sumter Greenway. They always manage to duck back into the water before I can snap a picture.
This morning was a little different. As we started out and rounded the corner from my street onto Sumter, I again greeted the turtles but slowly floating in this small pond was a small alligator. It was no more than 3-3.5 feet in length. I quickly grabbed my phone to snap a photo, but alas having had my Blackberry only 2 days I took longer than he wanted me to. He slid to the bottom. Hopefully, NOT to jump out and attempt to grab one of my boys. Then it would be a fight to the death. No one messes with my boys.
We continued on our walk so the turtles could come back out and have a peaceful afternoon. At the next drainage pond, I looked in the distance searching for the 4 footer that usually basks on this bank. He was there. Suddenly I heard a loud splash close by-signalling possibly another gator in the area. Seeing nothing I went back in an attempt to zoom in on the other gator in the distance for a photo. I took a few and as I was leaving glanced down to the drain opening and there it was. The other gator that made the splash. Nose pointing at me, definitely warning me to stay out of his pond. I snapped a few quick photos, tightened the boys leashes and we finished on our walk.
Nature makes my morning walks much more enjoyable to trudging on the treadmill. My dogs chasing everything makes the walk interesting. I've been concerned that our little area might find it difficult recovering the unusual cold winter we've had. Thousands of fish were killed and had to be removed from our waterways due to the 10 days of continual freezing lows. Our yard is normaly filled with lizards of every kind and variety, but none so far... disappointing indeed. My giant rain frog who is renting space in my rain barrel is still alive, but I think his wife has gone to a warmer climate.
These walks as well as all my little creatures make my day easier. It's a calming way to face the day with no stress. Release those endorphins and take a short walk-or just sit outside and enjoy nature. The effects can be amazing..
P.S... I am a UF Gator too... Born that way-and thanks to the great people at Shands reborn that way.
Tuesday, March 2, 2010
Disappointing editorial in todays paper
I read the following editorial with increasing dismay this morning.
apparently all those promises of NO CUTS TO MEDICARE we were
promised were once again false campaign/ presidential promises.
While this may not affect many of you in other states, it has a huge impact on Florida.
Many retirees have chosen to make Floridas warmer climates their homes in later years.
With these cuts those reitrees who are not in perfect health and the disabled all which are
ineligible for a Medicare Supplement will be hit hardest.
Once again, those who can least afford it, will be the ones to be made to pay and struggle.
I have been in situations where I had to juggle finances to achieve the unthinkable.
Pulling my hair out, and wringing my hands in total despair was not my idea of fun.
Why should the disabled, organ transplant recipients, and seniors who have been denied a Medicare supplement once again be forced to choose between life and health care, prescriptions, etc.
And why, can someone tell me, why should a physician have to feel the brunt of watching their patients suffer due to financial difficulties and Medicare cuts?
More Medicare pressure
I have been a practicing internist in Venice for 10 years. I am writing concerning Medicare cuts in physician reimbursement, not to make readers feel sorry for doctors, but to let people know how these cuts will affect them.
Physician payments through Medicare are based on a formula called the sustainable growth rate. This has resulted in yearly cuts in physician reimbursements, which have been delayed by last-minute acts of Congress. These fixes, for the most part, have resulted in fees remaining the same while expenses continue to rise. This year, Congress put a two-month patch on the problem. It expired March 1 and physician reimbursement was cut by 21.6 percent.
What will happen as a result? Physicians will drop out of the Medicare program en masse or, if they're able, they will retire. Many will go out of business. Florida physicians will leave for areas with fewer Medicare patients, resulting in Medicare patients losing their doctors or paying them out of pocket. The doctors who remain will cut costs by cutting staff and services such as after-hours care. This will result in further pressure on emergency rooms. Doctors will also begin charging patients for things such as phone calls, prescription refills, etc.
Readers, tell your congressmen to fix the problem. If not, you'll have other chances, because reimbursement is supposed to be cut further to a total of 47 percent by 2012. But, by that time, there may not be any physicians left.
Eric Lough, M.D.
Nokomis, FL
apparently all those promises of NO CUTS TO MEDICARE we were
promised were once again false campaign/ presidential promises.
While this may not affect many of you in other states, it has a huge impact on Florida.
Many retirees have chosen to make Floridas warmer climates their homes in later years.
With these cuts those reitrees who are not in perfect health and the disabled all which are
ineligible for a Medicare Supplement will be hit hardest.
Once again, those who can least afford it, will be the ones to be made to pay and struggle.
I have been in situations where I had to juggle finances to achieve the unthinkable.
Pulling my hair out, and wringing my hands in total despair was not my idea of fun.
Why should the disabled, organ transplant recipients, and seniors who have been denied a Medicare supplement once again be forced to choose between life and health care, prescriptions, etc.
And why, can someone tell me, why should a physician have to feel the brunt of watching their patients suffer due to financial difficulties and Medicare cuts?
More Medicare pressure
I have been a practicing internist in Venice for 10 years. I am writing concerning Medicare cuts in physician reimbursement, not to make readers feel sorry for doctors, but to let people know how these cuts will affect them.
Physician payments through Medicare are based on a formula called the sustainable growth rate. This has resulted in yearly cuts in physician reimbursements, which have been delayed by last-minute acts of Congress. These fixes, for the most part, have resulted in fees remaining the same while expenses continue to rise. This year, Congress put a two-month patch on the problem. It expired March 1 and physician reimbursement was cut by 21.6 percent.
What will happen as a result? Physicians will drop out of the Medicare program en masse or, if they're able, they will retire. Many will go out of business. Florida physicians will leave for areas with fewer Medicare patients, resulting in Medicare patients losing their doctors or paying them out of pocket. The doctors who remain will cut costs by cutting staff and services such as after-hours care. This will result in further pressure on emergency rooms. Doctors will also begin charging patients for things such as phone calls, prescription refills, etc.
Readers, tell your congressmen to fix the problem. If not, you'll have other chances, because reimbursement is supposed to be cut further to a total of 47 percent by 2012. But, by that time, there may not be any physicians left.
Eric Lough, M.D.
Nokomis, FL
Monday, March 1, 2010
It's Monday
I should have known this morning was going to start out wrong when I looked out the window last night and commented on the gorgeous full moon.
While retrieving a fork from the dish drainer (Yes I hand wash my dishes) a glass bowl fell. I didn't realize until today how heavy glass can shatter into a million -yes million shards of tiny red glass.
Broken glass managed to make it into 4 rooms of the house. Ozzi hit the pet door -planning never to return and the other 2 boys shrunk back under the blankets where they were sleeping. As I was just finishing sweeping this cute little black nose peeked through the pet door-yes Oz it's ok to come back in. He hates loud noises..
For the walk... DB is annoyed because his leader leash broke yesterday and doesn't retract all the way inside the casing. I literally had to carry him 2 blocks and will probably again for todays walk. He's only 10 lbs and a toy fox terrier, so anything dragging is an anoyance.
I tried sending a msg via text on my phone and ATT is refusing text and wants to charge me multimedia- so a visit to the local store is on my list today. My honey do list is getting larger by the second.
What more is there to say? It's Monday... But the bright side is I get one hour of awesome TV with 24!
While retrieving a fork from the dish drainer (Yes I hand wash my dishes) a glass bowl fell. I didn't realize until today how heavy glass can shatter into a million -yes million shards of tiny red glass.
Broken glass managed to make it into 4 rooms of the house. Ozzi hit the pet door -planning never to return and the other 2 boys shrunk back under the blankets where they were sleeping. As I was just finishing sweeping this cute little black nose peeked through the pet door-yes Oz it's ok to come back in. He hates loud noises..
For the walk... DB is annoyed because his leader leash broke yesterday and doesn't retract all the way inside the casing. I literally had to carry him 2 blocks and will probably again for todays walk. He's only 10 lbs and a toy fox terrier, so anything dragging is an anoyance.
I tried sending a msg via text on my phone and ATT is refusing text and wants to charge me multimedia- so a visit to the local store is on my list today. My honey do list is getting larger by the second.
What more is there to say? It's Monday... But the bright side is I get one hour of awesome TV with 24!
Thursday, February 25, 2010
Please vote
Year of the River City-wide Photography Contest Jacksonville.com#SD#SD
Please go to this link and vote for the photo "Rosy LazyRiver" it was taken by a very dear friend and heart transplant recipient Lon Bullman.
I think it's the greatest photo on the list..
Thanks to all.
Please go to this link and vote for the photo "Rosy LazyRiver" it was taken by a very dear friend and heart transplant recipient Lon Bullman.
I think it's the greatest photo on the list..
Thanks to all.
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