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..

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.

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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.

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!

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...

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.

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!!

      

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..

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 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.

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......

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..

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.

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.

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

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!

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.

LabCorp continued

I've left a few online requests at LabCorp.com for someone to please contact me because I need to have an issue resolved... Nothing in a week.
Guess they don't respond via email either.

Anyway, since I am taking the Multaq I've reduced my Prograf from 3mg twice a day to 2 mg twice a day.
Might save a little money-until I find out how much the Multaq will cost me.
 I still feel my heart race for 10-15 seconds at a time, so I'll have to wait and see if it's really going to help me or not.
I have discovered that an elevated blood sugar will wreak havoc with my body along with the heart. So another reason for everyone to keep your blood sugar in control..
It took about 3 days to feel like really getting back to exercising after starting to take the Multaq, but now I'm bakc to my 2 miles in the morning with the boys, plus hitting the treadmill for another 30 minutes after dinner.
Next I hit the gym again.

Develop a photography program for children at transplant centers. | Pepsi Refresh Everything

Develop a photography program for children at transplant centers. Pepsi Refresh Everything




Please view this short video and vote. This would give much needed funds in helping organ transplant recipients while they wait for LIFE.

LabCorp-Monthly lab visits

Many can relate to the monthly bloodwork we have done to maintain our immunosuppressive levels.
Well I've had to try and calm down after my visit on Monday to LabCorp.
I always go online to make an appointment, since we my labs must be done on Mondays and a purple top
tube FedEx'd to shands.  The labs here are always packed on Mondays and Tuesdays, especially during season, the reason for my appointment.
  Was I glad I did! The place was mobbed.To my dismay there were all new technicians, and the lady at the front desk was clueless. If I didn't know better I swear she's probably pulled her hair out by now after all she handled. I was concerned since I have one good vein left and only one person I know can find it the first time.
   Well I got there at 8:05 for an 8:15 AM appointment and signed in. The receptionist made so many copies of my lab paperwork I cringed at the thought of the loss of  a rainforest.  And she gave me 3 copies back of the same piece of paper.! I finally got in the lab, the tech. looked at the paperwork with a strange look. I immediately thought, "here I go again" having to explain in detail what the paperwork says and that I take a tube with me for Fed Ex.  The tech looked at me and said, "But we do this test here." "Well, maybe but you do if differently than my transplant center." I pointed out that the second piece of paperwork stated I would take a purple top tube with me. She responded that she had to call her supervisor. "I want to speak with her when you get her on the phone, and I have to get on the road to another appointment."   She got the supervisor "Nan" on the phone, who asked me if I was having other bloodwork done. When I replied yes, she said well then I'll allow it.. YOU'LL allow it? I've been doing this same procedure for the last 8 years.
     The issue was that if the Tacrolimus was the only blood draw I was having she was going to refuse. Labcorp would get no money for drawing the blood. No mattter what my paperwork said.
I asked what happens if my levels are off and I need to get the Tacrolimus re-tested in a week? No answer..
In talking with the tech she mentioned that Lab Corp regularly moves their techs areound so they don't get too comfortable with the patients. I advised her that this is inadequate patient care. The regular techs would have seen my appointment and if there were any issues it would have been handled before I even got there.

   I finally got out of there at 8:55. A quick appointment  which should have been easy took  50 minutes!
I was also given a phone number for this Nan and advised to have her fax me an approval letter for the next visit... Yeah right.... Nan has not answered her phone since yesterday nor has an answering machine.

At this point I've renamed LabCorp to LabCrap.

The heart will have its way...

     I realized that I forgot to update my blog as to my heart rate issue and the heart monitor.
Well to  make a long story short I went to the Cardiologist, he wasn't there, so I asked the pacemaker nurse
why I needed a heart monitor since I had a pacemaker recording every beat my heart makes?
The response I received was that a heart monitor records everything in real time.. Doesn't the pacemaker?
Well, yes. I then asked that since this only happens about once a month, and I just had my monthly occurrence what would the monitor record?  Nothing was the answer.. So she ran a copy of my pacemaker and I came home.
   Wednesday morning I received a phone call from the office and the doctor wanted me to come in earlier and speak with him...  Uh oh..in trouble now...:(
     I recently went to the doctor and we had a nice chat about my options. I now have Atrial Fibrilation where I had a type of Ventricular Tachycardia before. The ablation worked last time because it is not as invasive and difficult as the a-fib.. Lucky me again.. I had the option of taking meds as needed when the A-fib started like I was doing, taking a daily med to keep my heart calm (yeah right), or trying for ablation.
since ablation for A-Fib is more difficult and does not work as often I'm not ready for this right yet.
     I've chosen to take Multaq at a half dose to keep my heart calm and prevent the A-Fib from happening.
I wanted to do something because the longer a person stays in A-fib the more likely they are to have a blood clot or a stroke. Count  me out on this score. I have enough to deal with, without dealing with this too.
Feeling a thousand butterflies beating to get out of my chest is bad enough, but to worry about blood pooling in my heart and a stroke... Not this girl..
    Sometimes I truly wonder if I would have been better off receiveing a heart and double lung transplant like I was originally listed to receive.. I am positive my doctors (all of them) will have reasons to veto this train of thought.

Email from a good friend Tonya

Below is a copy of an email I received from a good friend. Please pray for this family as they send a loved one on to save others:



this is from another board I belong to...


I have copied it over to here for our family to call prayers up for the family..





Two of my nephew's very good friends and wrestling buddies were in a horrific traffic accident this past Tuesday. I did not post then as it seemed neither would survive but both are still clinging to life. The boys are brothers Will (17) and Cordell (15) last name are kept private per parents request.

Cordell has been on life support since the accident and the doctors were looking to take him off but the father felt his hand move and thought it very deliberate by the third time, most doubt it was anything but involuntary but we are still praying for a miracle.

Will came out of his coma but his reaction was so traumatic and his pain so great the doctors had to put him back into a medically induced coma.

This is a wrestling photo I have with my nephew in the front, Will is directly behind him, and Cordell is to the right.

The family is in a state that I cannot begin to describe (as well as us as friends) so all prayers to God our father for healing, comfort and peace will be greatly appreciated.

Thank you~ Penny

Cordell (the young man on the right) was taken of life support and has passed.



The family wanted to let others know that Cordell will go on to save others specifically, an 11 year old boy will be receiving his heart, a 38 year old man his lungs, and an infant part of his intestines. The doctors say that he could save 100 lives.

Dogs, Days, & Possible Depression?

You may not be aware but I moderate the comments that come through this blog. I moderate mainly because I  do not want any profane items showing up.
  That being said, yesterday I had comments to moderate for my previous blog "Today's gonna be a great day". I opened the comments and was unsure of how to respond or if I should.  The comment left was:
"Every dog has it's day", and this bothered me. I've thought quite a bit about my reaction and others if they had read them.  My Prednisone fogged brain immediately saw the negative. Thoughts that ran through my head were: What! Are you jealous?, How dare you?. The more I thought about it, the more I wanted to contact the person leaving the comments and ask if they would explain why they would leave such a comment.
     I've discussed this with a good friend and his response was the positive side. Yeah every dog has his day and you finally get to enjoy yours! I somewhat agreed, but why post it that way? Congratulations of a Gift of Life would sound more apporpriate.  During our discussion I had the epiphany that possibly this person was depressed, maybe waiting for a transplant. I explained my reasoning as this person was reaching out for a shoulder or someone to listen and say, I've been there too. Thus the true meaning behind my blog.
     First let me remind everyone reading, that the sole purpose of my blog is outreach. To  help the healthy understand what we endure in our quest for survival , but more importantly to be there for those candidates and recipients who need to hear it's ok to feel this way.  Please don't misunderstand  that because I sound positive now, this does not mean it's been a perfect day at the beach the last 20 years of my life.
It has not, by no means.  But and I state this emphatically, I have been there, I have conquered whatever  the medical field has managed to throw at me, and I am still positive and ready to tell everyone about it.
     So I would like to close by letting this person know that even though you left the comments, I hope you can let me know you are OK. More importantly if you need someone to listen while you let all the anguish out, I am here. If not me, I will happily put you in touch with others like me who care.

Today's gonna be a great day!

While this may be great lyrics for a song- The Blackeyed Peas just in case you haven't heard it on TV, I have gotten in the habit of telling myself this each and every morning. I am Blessed to wake up. I am Blessed to be out of the wheelchair. I am Blessed to be off oxygen. I am Blessed my kidneys work and no  more diet restrictions.
Let's face it... I'm Blessed.
Actually we are all Blessed to be alive and enjoying life's good moments and obstacles. It wasn't that long ago I was told (3 times) I was going to die. Those are words no one should have to hear, especially at 17, or 31, or 45 for that matter.
  I actually didn't hear it at 17, my parents did and told me later. So there wasn't much impact. I did know that my life was going to be shorter than most. So I justified it by telling my parents my philosophy:
"If I die old -no one remembers, BUT if I die young, no-one forgets."  This was merely a way for me to put this part of my life in perspective, and cover my nervousness.
 This death sentence was always pushed up each time I hit a new milestone. When I passed 20 it was pushed to 25, then to 30. I guess back then it was all the doctors had to go on. I remember mentioning to my Mom that turning 30 was difficult enough, geez do they have to put a death sentence on too?
   Of course there were hospital visits during all of this. After all, I was a boisterous young adult. Plus I was told to go out and live my life to the fullest. If I died, I was going to anyway. Good thought. I took all this in and did just that.
     Waiting for the first transplant didn't seem so bad. I had all this time to prepare for my impending departure. You might say I had consigned myself to the inevitable. NOW,the second was devastating. To say it was devastating is an understatement. To spend 9 years of total freedom, doing things I never dreamed of and then be told I had chronic rejection was enough. The disease and destruction was so fast I found myself wishing I still had Pulmonary Hypertension. After all, it was easier to deal with.  To be given soemthing so wonderful as breathing, set goals in life, achieve those goals and then .... You get the picture I'm sure.  Oxygen, wheelchairs, gasping for breath, total and utter defeating debilitation. This time was extremely difficult for  me to accept. I was NOT ready this time. Please don't take away what I've so recently learned to enjoy!
   This is the time when I began to find comfort in so many little things we take for granted. Sitting outside in the morning with a cup of coffee watching the breeze blow through the palms, a light rain on leaves, the calm of a glassy lake. I also began continual conversations with God. I've talked with God all my life, now we were best friends talking about everything. He convinced me to use my every ounce of energy and breath to get out of bed each morning. Take my meds. Eat-when I'd decided breathing was more important. God was my support system, my main support system. Most of my days were spent alone, so God was my only friend and He stopped by to visit all the time.  He taught me to look in the mirror every morning, see a face in pain, smile and say "It's gonna be a great day!"
 So with each new hip pain, knee pain, whatever new obstacle thrown in my path:  I still tell myself this every morning. It works.

By the way ...I still love the small wonders around me. Yes even the rain and cold.

Contest! I need a name!

I've recently posted a contest on my other blog I need a name -medieval or mythical for my little pendant. The best name given will win one of the pendants.
I'll be selling them at a Medieval Faire so this is why the medieval name.
I'd like to have something catchy that will attract both sexes. I seriously doubt a boy or man would buy nor wear a pendant titled: "Faerie Stones" even though I really like the name.

If you have a few moments please visit my blog and post your entry..you just might win..

Selma Times-Journal | Giving the gift to keep another alive

This is one awe inspiring story




Selma Times-Journal Giving the gift to keep another alive

Morning is starting out great

I wanted to check my stores and email before getting ready for the Medieval Faire.
Well Comcast requested I change my port for my emails which caused ALL my messages to be sent to
Windows Mail. I like ONE email provider, not juggling 2.
Comcast assured me my messages would stay in Comcast.Not.
After sifting through them all I found one exciting email.
It was from a very nice Etsy artist telling me she had included my earrings in an Etsy Awareness Treasury!
I am psyched.
This is my first ever Treasury on Etsy, so my day went from frustrated to cloud Nine!

If you have a moment, please visit the Treasury and post a comment on the wonderful work all the artists have done. Awareness is for us all.

BTW...My design is the Sterling Silver Organ Donor Awareness Ribbon Earrings.

http://www.etsy.com/treasury_list.php?room_id=108005

You may need an Etsy account to post comments, it's free. If you prefer not to open one, viewing means alot too.

Thanks

Hearts-broken and otherwise

    Well this afternoon I get to wear a 24hour heart monitor. Yay :-(
This seems to be the thousandth time I've gotten one of these jewels and to date have shown nothing to be concerned about.  I do have a fast heart rate at times. I mean who wouldn't after open heart surgery and a double lung transplant, a single left lung transplant, a kidney transplant, and a pacemaker implant. Oh and please take into consideration all those meds we love to take. Originally in 1991 after my first transplant I did have to take time and recover from the heart surgery. I had an atrial septal defect which had to be closed surgically at the same time as my lung transplant to be effective. I took Procardia for 6 months and then all was fine for quite a few years.
    Then came time for the 2nd lung transplant and all the meds to curtail the chronic rejection. I was also very close to renal failure at the time. All this combined  with the fact I was getting progressively weaker by the minute and wasting away wreaked havoc on my poor tired heart. I was once again placed on meds to control and slow my heart rate. Well, after the kidney transplant it was felt I didn't need to take the meds anymore so they were slowly weaned off. It took all of 6 months to prove how I needed them.
   Being diabetic the first time my heart truly raced I was unsure if it was my blood sugar dropping or something else. I attritbute it to low blood sugar since I had the cold clammy sweat on the back of my neck, the horrible almost nauseaus feel in the pit of my stomeach, etc. We were at a Harley Davidson shop after enjoying a much needed bike ride. All at once I got these feelings and they were not abating. Seeing a small vending area with a few tables, I made a beeline for the coke machine and a table. I drank the coke and it didn't really help too much. By this time I was literally sweating bullets. I used evey napkin the little metal holder had on  my table and then another table too. I was speechless at the amount of sweating since I rarely sweat. I was also sitting directly in front of the AC vent. Well, another coke later and a hot dog, I began to feel better, not like myself but better. So with that off we went on the bike and home. I never truly attributed this to my heart rate. Just a freak blood sugar occurrence. I now know better.
   The next time was more vocal. I got up in the middle of the night to use the bathroom. I did as normal, walked into the bath, sat down, and promplty woke up on the floor. Not usual. We finally caught the culprit. Dr. Baz immediately set me up with Cardiology to find the reason . What they found was when my heart rate rose if they pressed on my neck it would slow down to normal. Well since I can't walk around with my hand on my neck except maybe in a vampire movie, we made arrangements for ablation.  This ablation was for Ventricular tachycardia. It was for the lower chambers of my heart. Before this I also received a pacemaker, another story altogether, believe me.
      After the ablation all was perfect. That is up until now. Now it appears my issue is with the Atrium, thus A-fib. I've been told this is more difficult to control with ablation, wow lucky me. Anyway as the story goes, last Thursday I was getting out of the recliner and my heart rate jumped from 51 beats per minute to 101. This may not seem like much to you but those darned butterflies that got trapped in my chest were beating like crazy to get out. Not to mention the slight nausea I had too. I immediately took one of my Metoprolol PRN tablets. I continued with preparing dinner, sweeping, etc. hoping my heart rate would slow down. Well it didn't. I decided to take another tablet before I went to bed around 10:00PM. I got a little sleep and woke in the middle of the night not wanting to get up. My heart rate felt slower and I didn't want to do anything to push it into hyper drive. I could feel it rise, then slow, rise, then slow as if it were trying to correct itself. I got up, took another tablet, checked the blood sugar-low again, ate some yogurt and settled into the recliner for a few hours. Friday morning it was at 85 but holding steady. I called the doctor and he decided on the heart monitor. After taking another tablet I am happy to say I've been at 51-55 heart beats per minute ever since. But I did have to take it easy for all of Friday. If this keeps happening it will seriously impede my exercise routine. After all, I'm scared to death to hop on the treadmill when I'm almost at target heart rate without trying!
      Since this only happens about once a month I'm having trouble understanding why I need the monitor. I have a Pacemaker and it should show everything. At least I know it does when the nurse does a printout every 6 months. Why couldn't I just go into the office on Friday and them run a strip? I mean let's be serious if I only have this once a month, I've already had my turn, what's the monitor gonna show?  I guess all this stems from the fact I really dread getting this darned thing. I'm allowed this feeling after all these years... Geez, I've earned it right... Oh well, resigned to the fact... Off I go to get wired...
BTW... As I told a good friend when we talked about this yesterday... This is NOT cunducive to a night of great sex nor will it make me feel that way either:-)

HANDBOOK FOR 2010

Health:

1. Drink plenty of water.
2. Eat breakfast like a king, lunch like a prince and dinner like a beggar.
3. Eat more foods that grow on trees and plants and eat less food that is manufactured in plants.
4. Live with the 3 E's -- Energy, Enthusiasm and Empathy
5. Make time to pray.
6. Play more games.
7. Read more books than you did in 2009.  ( If only this were possible, I'd be financially broke)
8. Sit in silence for at least 10 minutes each day.
9. Sleep for 7 hours.
10. Take a 10-30 minute walk daily. And while you walk, smile.

Personality:

11. Don't compare your life to others. You have no idea what their journey is all about.
12. Don't have negative thoughts or things you cannot control. Instead invest your energy in the positive present moment.
13. Don't over-do. Keep your limits.
14. Don't take yourself so seriously. No one else does.
15. Don't waste your precious energy on gossip.
16. Dream more while you are awake than when you sleep.
17. Envy is a waste of time. You already have all you need.
18. Forget issues of the past. Don't remind your partner with His/her mistakes of the past.
That will ruin your present happiness.
19. Life is too short to waste time hating anyone. Don't hate others.
20. Make peace with your past so it won't spoil the present.
21. No one is in charge of your happiness except you.
22. Realize that life is a school and you are here to learn. Problems are simply part of the curriculum that appear & fades away like algebra class but the lessons you learn will last a lifetime.
23. Smile and laugh more.
24. You don't have to win every argument. Agree to disagree.....

Society:

25. Call your family often.
26. Each day give something good to others.
27. Forgive everyone for everything.
28. Spend time w/ people over the age of 70 & under the age of 6.
29. Try to make at least three people smile each day.
30. What other people think of you is none of your business.
31. Your job won't take care of you when you are sick. Your friends will. Stay in touch.

Life:

32. Do the right thing!
33. Get rid of anything that isn't useful, beautiful or joyful.
34. GOD heals everything.
35. However good or bad a situation is; it will change...
36. No matter how you feel, get up, dress up and show up.
37. The best is yet to come.
38. When you wake up in the morning, thank GOD that you are alive. ( most definitely !)
39. Your inner most is always happy. So, be happy.

Birthdays..How many do you have?

      Many of you may think this a strange question. As for me, not at all. As I sit here with an excruciatingly painful toothache I've pondered this question.
      On January 1st of this year a friend came by to celebrate her 50th birthday with us. I grilled chicken outside with shrimp scampi as an appetizer. And yes, we were able to grill outside on our one warm day before the unbelieveable cold hit Florida. As a joke I made a banner that read "Happy 21st Anniversary of your 29th Birthday". As we age we seem to try and forget the most important day of our lives. In fact it is really the only day that matters, for without it we would cease to exist.
     As for me, I celebrate 5 birthdays. Yes my biological birthday is very important, but so are my transplant birthdays of which there are 3, plus my donor Susie (the only one I know). Many prefer to call their transplant birthday their anniversary, which has little logic for me. After all wasn't I given the Gift of Life?
If not for those transplants I would not be alive writing this today. Those who've had an organ transplant, know the emotions that go hand in hand with being a recipient. This Gift of Life can turn the hardest person into emotional mush. I can say this with clarity, because I was afraid of nothing before my first transplant. If my car broke down on a dark road, I'd walk home (this was before cell phones). Now, no way would I do this  and so foolishly run the risk of my donor families hearing I took this chance with what I was given.
    I remember a newspaper article that ws done on me in 1991 post transplant. In this article I stated I intended to enjoy each and every wrinkle and grey hair I get. So far so good. I' getting them. I'm tolerating them. I'm not doing anything about them. I will age gracefully with all my scars, wrinkles and grey hair completely intact.
    Now that this is written I can decide which will be more excruciating. The toothache or the cost of the antibiotics to make it go away.. Either way I will feel the pain, believe me.

By the way... My friend dropped me a thank you card for her celebratory dinner. She thanked me for making her "29th Anniversary of her 21st Birthday" so much fun.. Guess she wanted to be younger still

What Organ donation means to me

OK, so here I go.


After long thought, this is what organ donation means to me.

1.It means no more oxygen (at least for awhile)

2.No more meandering just to breathe, I CAN walk at a decent pace, and most of the time faster than others!

3. No more blue fingers, lips, or under my eyes.

4. No more Procrit shots weekly.

5. No more food lists.

6. I can have potassium & phosphorus in my foods now. (They're good for me again.)

7. Bright sunny days NO matter what the weather.

8. Helping inspire others facing the same health issues.

9. Walk my 4-legged boys twice a day.

10. Enjoy summertime, beaches, picnics,etc without struggling to breathe.

11. Wash my face. (those who know me, know why)

12. If I take a 2 hour shower it's because I want to, not because it takes that long trying to breathe to finish.

13. Celebrate another Christmas in Key West.

14. Spread the word about the importance of making sure everyone gets another chance like me.

15. No more swollen ankles

16. No more compression hose!

17. No more wheelchair !!!!!

18. No nebulizer.

19. Fantastic blood pressure.

20. Life, love, enthusiasm ,dreams, goals.

21. The undeniable proof that there are strangers in our lives who become our saving angels.

It's That Kind Of Day

Have you ever had a bad day and said that. "I'm having that kind of day." For a long time I changed it slightly and said "I'm having one of those lives."You know the kind. You can't seem to get ahead, you feel like the world is crashing in around you. And you seem to be the only one holding it up with your small, weak TWO hands.
Being one of the "chronic/terminal" humans in life, can make life seem daunting. Not only am I struggling against everyday obstacles like everyone else, I also have the medical struggle for survival. So many times I wish I only had to see one doctor one time in one year. Can you spell relief? Ever wonder what heaven on earth would feel like. For me, read the above sentence again.
This is where I talk about support systems. I had a truly magnificent support system with all three of my organ transplants. In fact, if not for my parents and family I might not have seen the first one. With the loss of my Daddy this support system seemed to crumble. I've learned mentally to handle times on end in the hospital alone. This includes holidays, birthdays, etc. I thank God I love to read and create. That and wear holes in the carpet or tile from walking the wing so much. I am a survivor.
 We ALL need a champion pushing us on to newer heights and accomplishments. A sounding board. A confidante. That One True Friend. I've always been a loner, mainly because no one wants to see someone waste away and die on them. No ONE. Been there, experienced that, overcame the hurt and grew stronger.
Throughout my life I could always count my true friends on one hand. Most times on one finger. Anyone can have tons of friends or be popular. I'm referring to that One True Friend.
That special friend you seem to have an honest trust with. You can tell this friend anything, even your deepest darkest secrets and fears. You have such a strong trust and truthfulness between you, you know beyond a shadow of a doubt they will NOT betray that trust and tell. Nor will they ever leave your side, even if you inadvertently push them away. This friend is always there in the shadows, quietly waiting for when you need them.
This friendship should be cherished and honored for it is so rare to find. There will be times of hurt, but this friendship will endure even when you think it will not. This is the support system we all need. It is equal on both sides.
I have had this one true friend only once in my life. I miss our talks. Our debates. Mostly I miss someone who will listen to all my fears about my health and still be my champion. Someone who was there all the time no matter what.
Now however it is my time to quietly wait in the shadows until I am needed. Whenever that may be. Dear friend, I am here.

Petition to Enable Treatment Treatment of Cystic Fibrosis in Japan Petition

Petition to Enable Treatment Treatment of Cystic Fibrosis in Japan Petition

A New Approach to Organ Donation-The New York Times

Here is an extremely informative article on a new yet controversial procedure. Brain death vs Cardiac death


http://www.nytimes.com/2009/12/20/magazine/20organ-t.html?pagewanted=1&_r=2&emc=eta1

December 16,2009

As I was looking through old photos I came across the above photo from "my past life". As I looked at the picture I thought, "Who is this girl, or better yet Where did she go?" What you don't see in the photo, is the fun-loving, nary a care in the world kinda person. The business suits and heels kinda girl. The goal achieveing person in life. Somewhere soon after this photo I forgot how to dream. When your facing the end of your life, dreaming seems fruitless.

This made me think, of how outside influences change us into people old friends wouldn't recognize.

Of course they see the original person they knew inside, only we seem to have lost sight of that person.

    This picture was before I was listed for my first transplant. I was living my life basically my way, working, being with friends from work, going to the beach, enjoying it. But, there were things those old friends never knew.... I was sleeping with oxygen every night, close to being  on  it 24/7. Work was only to keep health insurance and so exhausting I struggled to make it through each day. The chest pain from struggling to breathe throughout the day, was so bad I needed something for pain so I could sleep at night. I knew what was coming quickly in my future. My lungs were deteriorating and a transplant was getting close. Tragic moments like this make us grow up and mature far too quickly.  We react in the only way we know how. Try to maintain a semblance of normalcy and acceptance so everyone else doesn't freak out over your situation. My friends from work were handling my health worse than I was and my concern was for them. One in particular, Vicki made the statement: "You know out of all of my friends I never thought God would take you first." Thankfully He decided I was/am still a work in progress and has allowed me to stay a little longer than predicted.

     Looking at this picture I realize I  miss the old life. I was confident, and energetic in all aspects of my life mentally. How do we find that person again? That one before health issues changed us into a mechanical version of ourselves?  Am I afraid everyone around me would think I've finally lost it, if I started acting like "who I really am"? Probably some, most definitley others. My students wouldn't blink an eye, they've witnessed this side of me during class. My friend Debbie? no. She brought out my old side too many times when we were on a girls day out. I would love to bring out this person all the time, but how? It's been close to 20 years since I was per se "me" all the time.

     "Me" somehow got lost in hospitals, doctor offices, hospitals (too many holidays spent there), medications, wheelchairs (trying to walk again), chronic rejection, surgeries,etc. The real me seems to come out as a defense when I'm concerned or fearful about my future. Sort of "let's live each minute as if it were our last" type of situation. Even though I try to live my life this way each day, I do it for my donors and their families. Now I have to remember how to do it for "me" as well. This way I honor them more than I already am.

   I hope this has helped a few of you find your own "me" deep inside and is preparing to let it free. I am.

26 Operations-13 kidneys

This was in todays newspaper. It is one inspiringly hopeful story!

26 operations, 13 kidneys: hope to few with little




By LAURAN NEERGAARD

AP Medical Writer





Published: Monday, December 14, 2009 at 3:17 a.m.

Last Modified: Monday, December 14, 2009 at 3:17 a.m.

WASHINGTON - Twenty-six operations put healthy kidneys into 13 desperately ill people: Doctors in the nation's capital just performed a record-setting kidney swap, part of a pioneering effort to expand transplants to patients who too often never qualify.
Read the entire story at:


http://www.heraldtribune.com/article/20091214/APW/912140514

Thoroughly disgusted with CBS

I just received this in an email from DonateLife Hollywood...


Can a single TV show actually save lives? "Three Rivers," a CBS prime-time series on donation and transplantation, did. Sadly, that remarkable fact was not enough to save itself.




As the donation and transplantation community mourns the premature shelving of "Three Rivers," we stand in awe of its achievements. A month ago, a San Antonio, Texas, family donated the corneas of a loved one who had passed away. They said yes because they wanted their family member to help others, just like on "Three Rivers."



Two weeks later, a family on the East Coast donated the organs of their teenage daughter because she had talked to them about donation after watching "Three Rivers" on a Sunday night.



On Thanksgiving weekend, a daughter in Louisiana gave consent for her mother to save three lives. She too was a fan of "Three Rivers," and the coordinator was impressed by how much the family knew about the donation process from watching the show.



For years, the organ and tissue donation community held its breath every time donation was used as a television storyline. Inaccurate and horrific scenarios about black markets and stolen organs made us initiate letter-writing campaigns; even worse, research showed it kept viewers from signing up to be donors.



Finally, one show got it right. "Three Rivers" viewers got something extra with their nightly fare of drama: They had a chance to learn the truth about donation and were challenged to talk about a topic families rarely wish to discuss - death and their wishes at end of life.


Please, take a moment and let CBS know what you think of this illogical decision to cut Three Rivers TV show.

The Holiday season has officially begun

      I'm finally home from Jacksonville and spending Thanksgiving with my family. I wanted to show everyone what I saw on Thursday morning two weeks ago.
    I opened the front door to walk out and get the newspaper, when I felt a warm glow. The warm bath of golden sunlight seemed surreal in this area, and something I've never seen before. The entire driveway was a golden hue. Looking up to the east I saw the most wonderful sight. The sky was a gorgeous mix of golds and reds, with a heart warming glow in the clouds.This seemed more like a sunset not a sunrise. I looked to the south east and to another beautiful display. I hurriedly ran inside praying my camera was charged and it wouldn 't disappear in a "poof" before I got a photo.
    Without thinking, sights such as this remind us non-verbally what no one can  tell us.  We are Blessed. If not for our organ donors and theier families, I would never have been granted such a glorious morning.

Yes my camera worked, and yes each time I see these 2 photos I remember that wonderfully warm feeling (warm fuzzies) I felt that day. May you be granted this chance, and memories too.

Being thankful

As we go into Thanksgiving here in the U.S. I always think back to all I am thankful for.
Please take a moment in your busy holiday, look around at all the happiness, trials, and family,friends in your life. In one way or another you are BLESSED.
  I've spent a few Thanksgivings and other holidays in the hospital. If you're a candidate or a recipient you can relate to this. We don't like it, but it is a fact of our lives either way. We learn to grin and bear it so to speak.
If you are a transplant candidate:
 Be thankful there is medical technology offering you the possibility of a new life.
 Be thankful we have surgeons, physicians, and coordinators who have the knowledge and caring to learn more and help you achieve your dreams through transplantation.
 Be thankful there are families who love life enough to donate in their time of extreme loss.
 Be thankful there are organizations out there promoting organ donation and helping you receive your new chance.
Be thankful there are recipients to boost you up, keep you hoping, and helping you along the way. If they did it, you can too.
 Most of all, be thankful we have a  higher power, who  will listen calmly, without interrupting, let you cry your eyes out until you are exhausted. Then lift you up so you can continue your fight for survival.

If you are a recipient:
Be thankful for all the above, and NEVER forget what it took to get where you are.
Never lose sight of the most precious life you've been granted.
Remember your donor/s and their families. You are here celebrating another holiday thanks to them, while they have an empty seat at the Thanksgiving table.
Be thankful for EVERYTHING, good, bad, and otherwise. If not for the miracle of transplantation, you would not be around to enjoy any of lifes ups and downs.
Make a solemn vow to promote organ donation to at least one person a week. Remember someone was promoting transplantation when we were waiting. It's only fair to take care of those waiting behind us.


As everyone looks around the Thanksgiving table tomorrow, be thankful you are here.
Thanks to a donor, a donor family, a transplant center, your doctor and the wonderful coordintaors who keep us positive.

Have a Blessed and wonderful Thanksgiving everyone. Be safe, be positive.

A Blessed Weekend

   Well we are in the last day of National Donor Sabbath Weekend. I am also celebrating 7 years with my second lung transplant today. It was 7 years ago on a Friday morning when  my call came in. I had just returned from a trip to Shands in Gainesville and discussed my Advanced Directive, knowing I had minimal time left to live. The phone rang in the middle of the night.  You always get an ominous feeling when the phone rings at night. Something has happened, or a loved one is sick. 
     Somehow I knew this was my call. I was the one sick, but with Gods' blessing and Shands hospital this might change. I remember waking my parents who were visiting at the time and everyone seemed to launch into hyper-drive. Everyone that is, except me. I didn't have the energy, stamina or strength to try. As I watched my parents rush around to get ready for the 2.5 hour drive I began to have doubts. I knew my physical strength was gone, it'd been the longest 2 years of my life, and I wasn't sure I would make the surgery. I also didn't want to waste a precious lung on someone who might not make it, when the lung could go to someone with a better chance than me. As Mom came in to give me a hug (somehow she knew I was having doubts), I asked her if she thought I could make it. This was probably the first time but most definitely the last time my parents would see my resolve falter. I remember she looked at me with all the love in her eyes and said " You can make it through anything, you're strong".  Of course she'd say this, after all she's a mother. But , she was referring to my mental strength, while I was worried about my physical strength.
    I'd been through this before, but this time my endurance was nowhere near what it was in 1991. Chronic rejection is much worse than Pulmonary Hypertension could ever be. Chronic rejection  is tough to endure. It was the biggest test of life I have ever had to endure, and pray to never endure again. Though I know I will endure it at some point. I hope to make it as far in the future as humanly possible.
     While I was questioning myself, I remembered it was the start of National Donor Sabbath Weekend. Surely, this is a sign that this transplant was meant to be. With all my doubts I had to at least give it my best shot at success. So off to Gainesville we band of merry men started.
     The holding area was a beehive of activity. I was introduced to my surgeon Dr. Staples. Yes, this is his real name. I made the off the wall comment, " and you use staples right?" This was my way of releiving some tension. I then met his wife, so I now had Staples & Staples MD... Sounds kinda cool huh?  It was during the wait process I discovered he was concerned with doing my transplant because I had lost down to 90lbs.! Wow, and my scale said I was at 100 lbs. it had been difficult to keep weight on at this point, since I was using all my calories to breathe. I had long ago consciously made the choice between eating or breathing. breathing was mandatory- eating optional. Thankfully the decision was to go ahead with the transplant.
    So today, as they say 7 years later- the rest is history.

Remember : Be a Miracle in someone's life, Become an organ or tissue donor.

This weekend

Today  November 13-15,2009 begins National Donor Sabbath Weekend. Being a 3-time transplant recipient. All my online stores & the Christmas Bazaar at the Cultural Center will offer 10% donation of all sales Friday & Sunday, 100% on Saturday will be donated to The Florida Foundation for Lung Transplant Research. Please spread the word and join me in honoring my 3 organ donors and their families.

A little holiday help

I just received an email with a website that many of us could use in these economic times.
http://www.angelfoodministries.com/

You can enter you zip code to find the one closest to you.


I looked at it and found some really decent food buys. From what I can gather it's open to everyone.

I'm seriously checking out the Thanksgiving dinner package.. It would save me alot of shopping!

Prograf vs Cyclosporine both a necessary evil

     I was fondly remembering by experiences with both Prograf and Cyclosporine. In 1991 for my 1st transplant,lung transplant recipients were not given Prograf. Only kidney and liver reccipients and a few hearts.  My Cyclosporine was a liquid dose that had to be mixed with a liquid. NOT water, the taste was horrendous.
    Driving from Pittsburgh to Jacksonville, Fl provided a few laughs along the way. I wanted to see life again-not fly- so we drove.  I had a Hickman IV because I was in a study (yes the importance of reseach) regarding Gancyclovir vs Acyclovir. I would give myself an IV for 90 days. Stopping at  restaurant was the first of my revelations. I asked for a small glass (shot size) of either milk or juice. The look on the waitress's face was incredulous. Why would anyone want a small shot glass of milk or juice? When she brought it, the other patrons stared at me in horror as they watched me draw up a syringe of liquid from a bottle, put it in with the milk, stir it up and at the speed of light drink it. Looking at my parents I remember laughing and saying "What do they think I am, a drug addict? As if I'd do all this in public if I was." If they only knew how horrible Cyclosporine tasted...
      At the hotel we had to change the dressing on my IV site. Upon leaving in the morning I again laughed realizing the maid would probably think whoever left this room was probably suffering from a gun shot would. We did leave alot of bloody gauze bandages behind in the trash. Put that with all the unit dose empty packs of meds, and I just know she knew it was a drug bust gone bad. Since this I've often wondered how others viewd the life of a transplant recipient.
     Cyclosporine also had one rule. Do not take it straight. I found out why. I was at work and realized someone had taken my bottle of juice from the fridge for themselves. CARDINAL RULE : LEAVE ANOTHER PERSONS JUICE ALONE! You never know what they might need it for. My only option was to shoot it straight from th syringe. I counted to 10, held my breathe and pushed the plunger.
OMG!!! YUCK!!!  Now I know why we're told to take it with other fluids. To this day it boggles my mind trying to figure out why they cannot make these meds taste better. they've been around forever.
      I was told I couldn't have Prograf when I later asked because switching might cause cancer. Geez I was immunosuppressed anyway don't I still this chance? Yep, only mine has been pre-skin cancer. It was during chrinic rejection when I again asked this same question. After 30 days in Pittsburgh for thymo treatments I was told I was being put on Prograf. I asked, "but can't  this cause cancer?" This time i was told yes, but at this point you're dying anyway" Well, I guess they're right on that one. Chronic rejection is a royal pain. Been there, done that, don't wanna again.
    so now I'm on Prograf which helps  control chronic rejection better than the cyclo. Lung transplant wise. Kidney transplant would rather put me back on the Cyclo. Thank you Dr. Baz.
      Cyclosporine now comes in capsule form. One very large horse pill and one very small shetlad pony pill, 100mg and 25mg.
So if your dosage is 175mg you end up taking 4 pills. I remember I was told at one time that the pills smelled like horse sweat.
To which I sweetly replied, "How do  you know what horse sweat smells like?" At last they didn't taste like it.Not that I'd know. 
  Prograf is the same. 1mg or 5mg, so I now take 3 tiny capsules twice a day. Amazing,Cyclosporine was 175mg twice a day and Prograf is 3mg twice a day. Wow those tiny little capsules pack one heckuva punch.

Doing great!

Well I'm doing great for a recipient. Not complaining. It only gets worse if we do.
The pain in my left side has lessened, leading us to believe it is fractured ribs from coughing.
I have a few new aches though. My right ankle wants to rebel on my walks. Couldn't it do this when I have to clean the house?  I continue to walk, just a little slower until it goes away.
   Insulin is doing great. The Endocrinologist is happy with the results-just not with me doing it and telling him later. It would be easier if doctors offices were easier to get in touch with, no answering machines and waiting 24-48 hours for a response. I miss the days of  old fashioned doctors offices. You know, when I was a person not a patient and my phone calls mattered enough to not send me to a machine. I realize this can't happen with a transplant center, they have way too many sick patients to answer each and every call personally. Even though I must say that everytime I'm prepared to leave a message, Melissa answers the phone and throws me off track. She's such a wonderful coordinator.
   The endo discovered  I have alot of sinus drainage we need to take care of immediately. He asked me if I'd ever taken antibiotics. LMAO......! Me ? No-never.  I told him Dr. Baz prefers Levacquin and he wrote a script for Zithromax. I knew what Melissa would do, so I just called her and she called in the Levacquin. We could save so much paper if we were listened to. But I also know that I'm a "scary" proposition for most physicians. Just not Shands Lung transplant. I'm just another recipient. Thank goodness for that.
    Being alone for a few days me & the boys are gonna have a great time! I've got the dining table set up for "design time" and they get to relax. I'm taking a class on Medieval history so gonna work on that a little, make a few pendants, take more photos and then take a nap.
     Hey, we all need our nap time..