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..

Insulin results

Sorry no post yesterday, Hubby surprised me with a trip to the beach. Motor home, boys and me all on the road for a day.The beach at Nokomis was beautiful. A sunny 87 degrees and a beautiful Gulf breeze.
My blood sugar has been doing great in my experiment. The first day it was kinda wonky ( a  new word of mine) but still in range. As of yesterday it started to level off and stay where I wanted it :80-90 range.
   Now I actually feel hungry as the insulin starts lowering the blood sugar. My weight has started to decrease as well... YAY!! I'm able to eat the type of foods I like and keep my blood sugar in range.   I'm a healthy eater, love fish, chicken, veggies and fruit so this also helps keep everything ok. 
   We went out last Friday night for fish and Larry wanted to share a platter. I should  have known better. It was a fried platter and I even commented that it had too much batter and not enough seafood. This should have been my first clue. Three hours later my blood sugar reading at bedtime was a whopping 175!  This did not sit well with me. I decided there and then that I would take back control.

      Along with the diet, I've incorporated more exercise. I now walk more in the morning as well as the evening. Our days are less humid and we're now getting the Gulf trade winds so walking is enjoyable instead of a chore. My lil guy DB loves it too. He's a big concern with the heart problem, so he's getting his heart walks too. This along with writing down my calories/fat content at each meal and a final tally for the day help me understand just where I need to tighten the belt so to speak.

  I still have the pain in my left side, hopeful it's fractured ribs and not something more serious and today my right ankle is extremely painful.  I've said many times I live with some sort of pain each day, now I guess it'll be a few pains each day. Still walked, still did laundry and cooking. If I'm going to be in pain, I intend to have a darn good reason for it.

Ain't it nifty???

I've actually hit fifty! The big 5-0, book em Dano.  Oh No  50!
Yep I made it. Not bad for a southern girl predicted to die before she was 20.
I'd always rationalized an early death to ease the burden on my parents. "If I die old, no one remembers but, if I die young -no one forgets". " Just think I'll never get wrinkles!"  Well, now I have to rethink my rationalizations.  I discovered that I'm proud of each and ever wrinkle. Each and every grey hair, well I've earned them all. To be honest I've probably caused and earned a few more than I show.
Turning 50 is usually a bench mark for most people. Many stress about "the over the hill" stigma.
HEY, I kinda like the idea that it's a slow downhill slalom from here... Collective word there---slow...
    I decided to do like the "normal" folks and take better care of myself starting today. Larry walked the boys, left early and I race walked to catch up. We did a good 2.5 miles and a few extra tenths for good measure. I've had the feeling I was eating to please my insulin injections, so I'm trying to take it a lunch time now instead of in the morning. I seem to have a bad habit of dropping around 11:30. I end up eating even though I'm not really hungry. it's been this way for a few weeks, so I'm doing a little experimenting. Please, don't do this yourself because I am. I've been able to control my blood sugar without insulin for almost 8 years, so this is an old habit of mine. The start of insulin has also produced a few pounds on the scale, which is driving me nuts. I'm not sure how to lose it while on insulin. I'm afraid that if I reduce my portion size it will cause another blood sugar drop. And these I hate. If you've ever had one you know why.
The cold sweat on the back of your neck, shaky hands, etc... Not a great feeling. Plus the shock of seeing you blood sugar readings only make it worse as you try to grab food and stuff it in yout mouth. Remembering to not spike your blood sugar because you'll feel worse trying to get it back in range.
 So, this morning instead of taking 15IU at 8:00AM, I'll take it later.
I ate my breakfast: pineapple, orange slices and a raisin bran muffin. I then set out on a brisk 2.5 mile walk, met up with Larry and my boys and continued on. After getting home I watered plants, (gotta keep those grape tomatoes going) then on to grocery shopping.
     I used to take NPH insulin around lunch time because it caused to drastic a drop in the mornings for me, so this is my game plan again.  At lunchtime 12noon my blood sugar was 100. I took 12IU of Levemir and went to lunch. I split a tuna sub with Larry so we'll see how it goes. 
   I also have an appointment with my endocrinologist next week so this is a good week to start my game plan. Probably a bad day as i have no idea what Larry, Debbie, & Larry (her Larry) have planed for tonight.

    More tomorrow on how my theory is working.


Have a great day, I am and will... Stay safe....
IT'S A WONDERFUL LIFE AS LONG AS WE ARE ALIVE AND ABLE TO BE WITH FRIENDWS AND FAMILY.

Surprises our spouses do.

I got a phone call at 7:30AM Wednesday morning from Eric of the Herald Tribune.
My wonderful husband called and told them my story and how I'd be celebrating a half century on Sunday.
We set up an interivew time of 10:00. OMG!!! I taught class Tuesday night , the house was a wreck, and I was just making breakfast.
I finished breakfast, did dishes,  swept and mopped floors, showered, and walked the boys. I was just walking from the back yard when he arrived at 10:00. Talk about a whirlwind.

This is one of the best weekends of my life. Friday I celebrate 18 years with the first lung transplant and Sunday I flash forward to the big 5-0..
Yes I'm damned proud of each and every grey hair and wrinkle. I've earned them many times over!

Below is the article from the Trib..

Have a great day






Ernst: One living reason to donate your organs




By Eric Ernst





Published: Friday, October 23, 2009 at 1:00 a.m.

Last Modified: Thursday, October 22, 2009 at 6:26 p.m.

When she was 18 and undergoing a Navy physical, Bette Luksha-Gammell got the shock of her life.



"You'll never have children, and I'm surprised you're still walking," a doctor said. He later told her parents she probably wouldn't live past 20.



Unknown to her, Gammell had pulmonary hypertension, and her lungs and parts of her heart were three times normal size.



Following that news, a gradual decline left Gammell hooked to an oxygen tank for too much of her days.



Eighteen years ago, doctors transplanted two lungs into Gammell and sewed up a hole in her heart. In 2000, after her body rejected those organs, she received a single lung transplant in 2002. Then, about four years ago, she received a transplanted kidney after hers was damaged by the medicines she took for her lungs.



She now lives in North Port with her husband, Larry. On Sunday, she'll celebrate her 50th birthday.



Gammell may have lived a life of struggle and pain, but she doesn't ask, "Why me?"



"Never question God," she says. "You might not like the answer."



Instead of wallowing in self-pity, Gammell adjusted her goals and went to work for Disney cruise lines and as a baggage handler (no kidding) for Continental Airlines.



"I'm one of those people, I have to be doing something. I can't sit at home and collect a check every month," she says. "I'd love to be back at work, but I know the risk I take."



Gammell settles for teaching a wire jewelry class at the Cultural Center of Charlotte County.



She's also an advocate and ambassador for organ transplants. At Disney, she started a support group called Second Chance. She records her daily struggles at www.survivinganorgantransplant.blogspot.com. She writes letters with suggestions for Medicare reform.



And she has traveled across the country to talk with potential recipients filled with doubts, fears and conflicting emotions.



At 9 p.m. Sundays, she watches a new CBS television series, "Three Rivers," which follows the lives of organ donors, recipients and surgeons at a fictitious hospital in Pittsburgh.



Gammell calls the show the first national platform for organ donations.



"It certainly starts a conversation," says Jennifer Krause, public affairs manager for LifeLink Foundation.



The foundation, which arranges organ donations from Tampa Bay through Fort Myers, reported 584 transplants in its coverage area last year. Another 437 donors provided tissue for such uses as bone grafts and heart valves.



Gammell sees donors as the real heroes. "I try to do something, each day, to honor donor families," she says. "At the most grief-filled time of their lives, they gave up someone they loved to give life to someone that someone else loves."



To recipients and donors, she offers, by her own example, a simple creed: "You have all these issues, but you have to stay positive. Being positive keeps you alive, whether you've had a transplant or you're healthy."



To become an organ donor, register online at www.donatelifeflorida.org.





Eric Ernst's column runs Wednesdays, Fridays and Sundays. Contact him at eric.ernst@heraldtribune



.com or (941) 486-3073.

Daily obstacles

After Saturdays heart rate issues, I felt drained on Sunday. My heart rate was at 75 in the morning-not what I wanted or where it should be.But I'll take it. I took another pill as I as told to do and kept busy so my blood pressure would stay in a normal range.
I left for my morning walk feeling kinda blue funky. I hadn't realized that during the night a major cold front (yes in s. Florida) had moved in. It was rather chilly in shorts and a t-shirt!

Me & the boys walked faster! Poor lil Deebs with his bad heart was doing great with the drop in humidity and cooler weather. Glad he was. I started sneezing, coughing and thought"great all I need now". I now knew why I was feeling so funky.

When we finally got home, I decided it was time to take it easy and get over this fast. I've always been a firm believer that if I'm going to pay for advice and a physician I'm going to do what they say. Why pay out precious money if I'm not gonna follow through. After all a doctor can only take my health so far, the rest is up to me. WooHoo bon-bons, the couch, a good movie, and my boys! Well, skip the bon bons-I'm diabetic and hate taking insulin.

By Sunday evening, my heart rate was back to normal. Now the dilemma. Do I call Melissa (my coordinator) and tell her about the sneezing & coughing or see what transpires? Monday morning and I was feeling great, like my old self (as good as that can be). I decided to let it ride since I was no longer coughing and sneezing and my spirometry looked good too.

In case you're wondering, spirometry is a lung function test we recipients perform at home. It allows us to keep watch on our numbers and can help signal possible rejection (acute not chronic) in time to stop it. Spirometry can be uplifting or depressing. While in chronic rejection and waiting for my 2nd lung transplant watching the numbers steadily drop was such an emotional upheaval. The doctor finally told me to stop the spirometry-we knew what was happening and it was worse for me to see that I was actually dying than to know it mentally. At that point the adage "reality sucks" was true.

Monday also brought about major comcast issues with the internet adding this to a slow pc and I didn't accomplish much online. Even my 3 online stores suffered from lack of attention.

The PC is slow and the laptop wasn't charging...lovely day of obstacles. But, that's changed for a little --YYYYaaaayyyyyy. For some unknown reason the laptop decided to start charging, just as I was going to buy a new battery.. Thank You God!!!! You seem to take me to the brink and then just when I make a decision you show me a different route to take.

Well, feeling better today (Tuesday) I'm hitting the treadmill. Wearing my Dash for Donation 5K t-shirt from the 2006 US Transplant Games for encouragement I'm psyched. Then on to the drudgery of laundry, floors, dishes (already did those once today) and eventually relaxing with my boys (all 4 of them).

Butterflies, Blocks and A Heart

The title may not make much sense, but it's how I've come to rationalize last night.
In 2006 I had Ablation therapy on my heart due to the inability of medication to control a rapid heart rate. Everything has been awesome! until last night.... For the last 3 years my heart rate has been in the low 50 range, something I never thought I'd see or experience.
About 9:30P.M. as I got out of my recliner to get ready for bed, I felt a bit of nauseau on standing up, followed by a cool sweat. My insulin sometimes makes me feel this way when it starts to work, sort of wheels churning in my abdomen. I checked my blood sugar and it was a nice 103 so this was not the problem, and it still continued.
I checked my blood pressure and heart rate.. my eyes popped out of my head! Heart rate of 120! No, this can't be ..So I checked it again, and again in another 15 minutes. It got to 100 beats per minute, but still not where it should be. I've always had the nagging fear that the Ablation could reverse itself and prayed I wouldn't be one of those unlucky ones. But I must say, this really set my mind reeling... We all know that when things like this happen we're told to keep calm and let it drop naturally. BUT HOW DO YOU STAY CALM WHEN YOU'RE WORRIED? I took one of my PRN tablets for heart rate and waited for a result. My PRN medication is 2 years old and this is the first time I've had to take it.
After 30 minutes, no results... I had to do the one thing I dread. Call my lung transplant coordinator on a Friday night and wake her and her kids up. I placed the call, she and my doctor both said since it was steady and not erratic just try and get some sleep, but take another pill in the morning to keep it low and correct the problem. Please tell me how to get sleep when it feels like a concrete block is on my chest and a thousand butterflies are fluttering around inside looking for a way out? After awhile it felt like those butterflies hired a few thugs who were using bats and clubs (anything available) and trying to beat their way out!. Ever have one of those headaches where you feel the pound each and every time your heart beats? That's the beating those thugs were giving me. Only at 116 beats a minute! Darn little buggers! One might think I was charging them rent or something, they way they were going at me!
I went from the recliner to the couch, to the recliner. Each and every time with 3 little 4-legged boys following me. I was seriously tired. (I thought dead tired or dog tired took it to far) Not enough sleep or rest makes for a terrible day to follow, especially for the chronically ill. Finally about 3AM the pounding stopped, guess the thugs came to an agreement with my chest. Anyway it was calm enough for me to try the bed again, not slower but calmer.
I dozed in and out of sleep until 6:30, no deep restful sleep tonight. Back in the recliner for my morning date withe the boys, take the blood pressure, read a little of my book. My heart rate was 75. WHEW..... I can't begin to explain the relief. Now to get it back to where it should be, and prevent the nightmare journey of 3 years ago when I walked into the Emergency room at Shands with a heart rate of 196.

One good thing about all this..... It made me forget about the pain in my left side. Possible fractured ribs from coughing... well at least until this morning when all was calm and it returned..

Now for hte morning walk and keep my heart as healthy as I possibly can.

Beliefs

I Believe...

A Birth Certificate shows we were born.

A Death Certificate shows we died.

Pictures show we lived!

Have a seat...Relax. ..And read this slowly..

I Believe...

Just because two people argue,

Doesn't mean they don't love each other.

And just because they don't argue,

Doesn't mean they do love each other.

I Believe...

We don't have to change friends if We understand friends change.

I Believe...

No matter how good a friend is, they're going to hurt you every once
in a while, and you must forgive them for that..

I Believe....

True friendship continues to grow, even overThe longest distance.

Same goes for true love.

I Believe....

You can do something in an instant That will give you heartache for life.

I Believe...

It's taking me a long timeTo become the person I want to be.

I Believe...

You should always leave loved ones with
Loving words.

It may be the last time you see them.

I Believe..

You can keep going long after you think you can't.

I Believe....

We are responsible for what we do, no matter how we feel.

I Believe...

Either you control your attitude or it controls you..

I Believe...

Heroes are the people who do what has to be done,When it needs to be done, regardless of consequences.

I Believe...

Money is a lousy way of keeping score..

I Believe...

My best friend and I can do anything or nothing,And have the best time.

I Believe...

Sometimes the people you expect to kick youWhen you're down will be the ones to help you get back up.

I Believe...

Sometimes when I'm angry, I have the right to be angry,But that doesn't give me the right to be cruel.

I Believe...

Maturity has more to do with what types of experiences you've had, and what you've learned from them, and less to doWith how many birthdays you've celebrated.

I Believe...

It isn't always enough to be forgiven by others;

Sometimes, you have to learn to forgive yourself.

I Believe...

No matter how bad your heart is broken,The world doesn't stop for your grief.

I Believe....

Our background and circumstances may have influenced who we are,But we are responsible for whom we become.

I Believe...

You shouldn't be so eager to find out a secret.

It could change your life forever.

I Believe....

Two people can look at the exact same thing and see something
totally different.

I Believe...

Your life can be changed in a matter of hours by people who don't even know you.

I Believe...

Even when you think you have no more to give, when a friend cries out to you--

you will find the strength to help.

I Believe....

Credentials on the wall do not make you a decent human being.

I Believe...

The people you care about most in life are taken from
you too soon.

I Believe...

The happiest of people don't necessarily have the best
of everything;They just make the most of anything.

Three Rivers Impact

A good friend of mine forwarded a newspaper article to me a few days ago. The article was a journalist making a brave attempt at tearing down the new CBS show "Three Rivers".
In her article she states that she thought the Dr's in the show looked overworked and constantly on the run, so she decided to ask a few friends of hers if this were true. She actually asked 2 yeah ONLY 2 friends in the transplant field. So this makes her an expert on the importance of promoting organ donation? Much less gives her the authority to criticize a much needed series, that shows what these medical professionals really do to save lives? Oh yeah, and what about those of us who've lived through it? Are dying as I write this hoping for a life saving transplant!
I have steamed over this article for the last 2 days, and wanted to post a link here for you to read. However, if I do post a link it only gives her more readership and credibility, and I apologize that I refuse to do.
If you've had a transplant or are waiting you know first hand how hard our teams work for us. I've witnessed it 3 times now.
I remember waking up in ICU after my first bi-lateral lung transplant in Pittsburgh. It seemed that everyday my surgeon was wheeling in another patient fresh from a transplant. My first words to him after I was extubated(removed from the dreaded respirator) were, "I thank God I was your first in all this". Yes he looked exhausted, yes he needed a shave, but his exhaustion was one of reward. He saved lives.
My 2nd lung transplant, I remember asking Dr. Baz (Shands Gainesville, FL) to please take a day off! The day he came to see me in jeans and a pullover sweater, I knew it was his day off and told him to get out and relax!
These teams take people like me, dying, oxygen sats of 48%. blue fingers, blue circles under my eyes, and make us whole again. I was given a life I never dreamed could happen to me, thanks to my overworked (yes they are), under appreciated, surgeon, physician, coordinator, and nurses on the transplant team. And you know the best part?
THEY STILL CONTINUE TO DO IT!


This journalist, instead of dissing a new show could have made a higher impact by promoting the "message" of the show. Organ transplantation/donation does not have the platform of Breast cancer awareness, diabetes, heart disease. I'm not trying to demean these in anyway. Thank goodness they do have a platform, however we 2-nd timers would like a platform too, to save those waiting.
Only by promoting the meaning of Three Rivers can the message get out and help ease pain and grieving for donor families (they are finally honored for the heroes they are), and those waiting (we can give them hope to keep going), and us recipients (it's up to us to carry that torch to make sure the candidates get that chance too). Too many shows put little tidbits in a story line about transplantation with no follow through. What happens to the recipient later? What about the struggles to pay for meds? And heaven forbid, what if they get sick! How to afford that with our wonderful Medicare system, or private insurance?
Plus, the pitfalls of going back to work. That's a story in itself.
Here we have a show with follow through...... It's about us, for us, and we can relate to it. No tidbits, just solid promotion.

If she had checked further this journalist would have found a wonderful story to tell. How CBS partnered with DonateLife Hollywood to make the stories as real as possible (we know there has to be drama). Also how Alex O'Loughlin became a DonateLife spokesperson because the cause is so great. This is the line she should have taken. Then she would have made a great journalist, not just mediocre.

My reply to my friend Merv (he has a transplant blog too, check him out) MervSheppard.blogspot.com, "And she thinks she's an expert on transplantation? I'm still spreading the word to watch the show, give it great ratings and keep it on the air! We'll show her!"

12 Months

What is the value of 12 months?
It equals one year of your life, right? How about when you hear you have 12 months to live? WOW a major shock runs through your brain and body. What? Time is so short? There isn't time left to do what I need to get done. TIME becomes a 4-letter word.
Knowing for about 12 years I would eventually hear those words did nothing to prepare me for when it actually happened. Much the same as if telling you about it would make it real for you. YOU have to live it to know it fully.
While living in Fort Lauderdale in the late 1980's, I drove to Hollywood, FL from Fort Lauderdale for a Dr. visit. It was here that I heard :
"We need to get you on a transplant list, you have about 12 moths left to live."
I was very brave and professional about it, did not cry or break down. No. Not me.
Even though every cell in my body wanted to scream. I was alone, my family living miles away in Jacksonville. I was the gypsy who traveled and lived her life like there was no tomorrow.
Now there wasn't.
Leaving the Dr's office, everything around me seemed surreal. Nothing mattered except my over-active emotions. My head was held high, until I got in my car.
I stayed relatively calm until I got on I-95 driving north to Fort Lauderdale. Realization hit,
the dam broke and feelings came rushing in. "Why me?" "Why couldn't You just let me die in my sleep and make it easy?" Subconsciously my mind was filled to capacity. Background thoughts of making arrangements (God, I'm only 28!), what will this do to mom & Dad?
I found that fine line between emotions and anger. I looked up to the sky and once again cried inside "Why me?" I was raised to NEVER question God, I may not like the answer.
From the corner of my left eye I saw a huge tractor trailer getting way too close to my car, crossing the white line. My vision was all blue, his cab was so close. It seemed inches away.
Instinctively I laid on the horn and searched for a way out. We were on an overpass and my only other option was the guard rail and over the side. In a flashing thought "Oh No! You listened and it'll end quickly but painfully!" The moment passed, the truck recovered and there was no accident.
I pulled over to the nearest break down lane I could get to and literally broke down.
I looked to the sky and calmly said " God, I'll NEVER question you again." Once again Mom was right. I didn't like the answer and I got my first of many attitude adjustments from God.
My emotion charged day was now calmer, thanks to an event that took me away from it for a brief moment.
Unlocking my apartment door, I threw my purse on the table and called the one person who I could talk to, my sister. I called her at work and gave her the news. We cried together, and she asked if I wanted her to tell my parents. No, this is my responsibility and it isn't something to tell them over the phone. I'll make arrangements to take time from work and drive up to Jacksonville and tell the family.
This was on a Friday. Two of my sisters Bev and Frances were at my apartment Saturday morning to be with me. The weight of the world was momentarily lifted when I saw family.
They made sure I had a wonderful weekend before driving to Jacksonville on Sunday afternoon to give my parents the news that would change all our lives forever.
I believe this is where the guilt feelings started because I felt like I was always hurting someone because I was sick and dying. I was causing such utter grief to others, not the person I wanted to be.

Silence is golden

I realized this morning I've been lax on my updates.
I plan to change this now. I try to remind myself to sit down and make an entry each day, but get so busy.
First off, our computer is slower than cold molasses running uphill in January! A wonderful phrase my Mom used to say to me on school mornings.. Wow, how we become our parents over time.
Silence from a recipient or a candidate can mean one of two things. They are doing great, or they are doing terribly. One always wonders if they should call and find out, but human nature hates bad news. I've heard this many times over my lifetime. Take it from me, JUST CALL. Many times, especially with lung problems, it's easier to answer a phone call than to try and make one.
Physchologically it seems so energy consuming when you can't breathe. Plus the positive side is it will make that persons day.

My mom used to answer all my calls and if I could talk I would, if not well she is the bestest secretary in the universe. Nobody gets past Mom.

My last few weeks have been busier than usual. Clinic visits... Yeah good news... Now if I can keep it that way. I finally had students sign up for classes, and have been preparing for them and ordering suplies. Trying desperately to get my blood sugar under control.

Yes I am a diabetic. Mainly caused by Prednisone and Prograf. But I have to take the meds so I deal with the diabetes. I am a control freak about my blood sugar. This is one area of my health I can control and not have to leave in the hands of others. Being a recipient there are many facets of our health we cannot control, so when there is something I can control: I prefer to. My cholesterol is another are I can take control of.

Will post more soon. If you're a candidate waiting for a transplant- hang in there -it really does get better.
If your a recipient- get out there and enjoy the chance you've been given!

Medicare &Part D plans---massive chaos

O.K. for today I need to get a little off track with my thoughts and vent, rant, whatever comes to mind about the anger I feel toward our government and how they run Medicare and Part D.
If you are an organ recipient you've felt some of my frustrations. My frustrations have been a monkey on my back for 29 years!
I've regularly sent so many letters to Congressmen, Senators, Governors and Presidents I know for a FACT they see my return address, grimace and recycle the letter unopened.
I had to wait the 6 months to receive Social Security Disability-twice-, waited the 2 years to get Medicare only to find out Medicare would not pay for my first double -lung transplant! Because it had to be performed simultaneously with open heart surgery. Medicare's loophole was the 2 surgeries had to be done separately. Gee my heart goes to our wonderful government politician who orchestrated that piece of legislation.
Now I'm falling into the issue (yet again) of prescription denials. Medicare Part B already covers a portion of Prograf and Cellcept-thankfully. If not, the cost alone would throw me into that BLACK HOLE of a coverage gap. Been there, done that, still trying to claw my way out financially from last year. (another thing to rant about). Now, however I'm having issues with Insulin. Yes insulin. This is my 3rd prescription denial in 2 weeks. I hope someone up there finally gets a clue that the "norm" does not apply to the chronically ill.
As many know long term use of Prednisone as well as Prograf can have the side effect of Diabetes. And after 18 years I feel I need something other than diet and exercise, control freak that I am when it comes to my health. My wonderful Endocrinologist has tried a few new products, and after much talking convinced me that the Pen was better for my use than the original vial and syringes. Me being the person I am , detest the thought of another syringe in my skin. After long term use of Procrit and giving the injections myself, feeling the burn and praying heavily for my kidney transplant, I count to 10 and then some trying to get up the nerve to give myself insulin.

Here's the clincher..... My Part D Provider approved the purchase of the pen needles. I had a few pen samples from my Dr., but they have DENIED the pen. So I'm now out the $30 I spent for the pen needles and constantly fighting the provider for the pen. My argument is:
They are both on the same tier, making them cost the same-so what's the big deal?
According to them you MUST give your self 3+ injections daily.. Yeah right, here comes the loophole. It's a long-acting 24 hour insulin. Who would be crazy enough to give themself more than one shot daily????? Yeah I use fast acting in between, are they going to deny this too?
I've asked these same questions in an appeal and to date have heard NOTHING.

I told family and friends years ago that Medicare and Social Security and NOT something you can depend on. Now you know too.

Time to write another letter to my Congressman announcing a new low for the disabled.
I think I'll fax this one instead..

Things we think about pre-transplant

It seemed that my mind was in constant motion during my "wait" period.
It was at this time I discovered "wait" was a four letter word. Being on oxygen and at deaths door per se, thinking was all I could do. I had moved back in with my parents in Jacksonville mainly because I needed help, but I also needed a positive family influence to keep me going.
And my family exudes positiveness to the nth degree. I thank God constantly for blessing me with such a family.

I remember my Mom, God Bless her, would bring a cooler to my bedroom with a sandwich and drinks before she went to work. I was tied to an oxygen concentrator and the kitchen was too far to walk with no help. She also brought in all the crafts and books I wanted for the day.

Facing ones mortality at 28 years old is tough. It's tough for anyone, but I think more so when you're so young. You have to think about things you shouldn't have to worry about for another 40-50 years. How to disburse your estate..What estate? What could a person of 28 possibly have? ALOT, believe me. I bought a large Aluminum hurricane proof storage unit, had it delivered, tied down, electricity ran to it and my dad was going to put in an air conditioner. This held all my worldly possessions. The furniture I'd need to re-start my life post transplant among other items. I never contemplated that I wouldn't survive. It was just not an option. I planned for if I didn't, just in case. This unit still sits in Mom's backyard, now holding all her craft projects.

October 1, 1991
I'm thinking of making out a Living will at Dr. Chinoy's office. This is a really big dilemma for me, for in the living will I have to sign whether I want life support or not. If I end up in the hospital before the transplant, it will most likely be on life support (respirator). The only reason for this would be to keep my vital organs and lungs oxygenated while I wait for the transplant. If I state no life support, I can't get the respirator. BUT I don't want to be hospitalized indefinitely on a respirator.
If I do opt for the respirator, I'm afraid if I feel it's my time to go and ask for the plug to be pulled the courts/Dr. won't allow it to be done. Mainly because my mind will still be functional (I hope) and I'm asking to be freed. Not only this, I don't think my parents or family would have the strength to pull that plug. Especially if my mind is active and I'm alert.
If I am comatose it might be easier. I can only hope.

My last and most important wish would be: If I'm on life support for an extended period of time, and feel it's time to go Home that someone will have enough compassion for me to just turn the respirator off. I'm sure when it's time God will let me know.

When it happens, I pray someone will hold me in loving arms while freeing me from my medical bonds. My last breath will be whispering I love you to someone who's very special in my life.

I received my first lung transplant exactly 22 days later.
Facing your mortality is not easy, but it has to be done. We-none of us is immortal.
Talking it over with my parents did bring us closer, and we shared our wishes with each other regarding end of life.
My mom showed enormous courage in carrying out my Dad's wishes when it was his time. He did not want to be kept alive through force feeding.
In being selfish I can only say I'm glad it fell to her.
I celebrated my Daddy's freedom, but didn't have the strength to be the one to let him go.
I'll regret that forever.
How can I expect someone to have that strength for me, when I couldn't muster it for the most important man in my life?

Everything eventually comes flooding back

I've been remiss in posting mainly because my little dog DB has started with a terrible cough.

We tried the old remedy recommended by the veterinarian to no avail. To no avail right... Have you ever tried to give a dog Robitussin??? I hate the stuff so I can only imagine how this poor little 10 lb. dog feels. I even went the gamet of getting childrens flavored!

So after a week of the cough calming down, he got worse. Me being the worrier I am, after all this is one of my boys. I took him back to the vet.

With all our exercise, walking and looking slim the vet found a significant heart murmur.......

Not only a heart murmur, fluid was backing up into his lungs causing the cough. When I heard this a flood of teenage memories flooded my consciousness all at once

Then the vet handed me 2 packs of meds. One was a heart pill and the other was Lasix. OMG! I looked at the dosage of 12.5 mg and said : "Wow, I only took 25mgs at the most at my worst times and he's only 10 lbs.." I was then told DB was in crisis mode and we had to prevent the fluid from leaving his lungs and going into his heart.

Another flood... a major one... My sweet, little, holy terror was suffering from some of the complications I had endured for many years!

I then and there made a promise to God. I will spoil my little one even more, I will be protective, I will also give equal time to my other 2, and I will NOT lose my little Dibs.

Our walks are much slower now. This is difficult for me as thanks to Prednisone I run on Hyper mode constantly. We used to walk at around 2.5-3 mph. Now we meander and sniff every blade of grass and let the other brothers chase squirrels and lizards, and when he starts lagging behind and breathing heavy, he lets me know it's time for a ride in my arms.

Carrying him can be a major feat in itself while trying to control 2 other holy terrors!

A fellow crafter makes slings to carry babies with. She will be my next email. He will receive his very own custom designed carry all sling for walks.

Since the vet says this will only get worse, he deserves the best.

Memories like these hit us at the most unbelieveable times. We accept them, because they made us the survivors we are today. We learn from them, and they help us to help others facing the same crisis in their lives. I just never thought I would be helping my dog.

What are some of your memories???

Jerry Dinnan

This morning I want to tell you about Jerry. I never got the chance to know him other than the volunteer work we did together at LifeLink, but that doesn't matter. You see, there is a special "kin-ship" between recipients and candidates for an organ transplant.

When I first met Jerry a few years ago we had volunteered to promote donor awareness in Sarasota. We both arrived wearing the same color Lifelink polo shirts and khaki pants as if we'd planned it. As the day progressed we discovered we lived a block away from each other! He was the light shining on the health fair. We joked, talked to others about becoming an organ donor, and wanted to hug all those who said they were already a donor.

The next time I saw Jerry was at a Donor Service of Remembrance held each November at the church he attends. Lifelink brought in donor families from the past/previous years for the donor and their families to be honored. It was at this service I realized deep inside how much I needed to thank a donor family and help some of these families understand how thankful all recipients are for what they have sacrificed.

This blog has taken me a few days to put together. Mainly because as a recipient I and many like me view all candidates & recipients as "family". We have scars, take the same meds, have the same side effects, etc. BUT mos of all we *strive to thrive* with all the daily obstacles, the medical obstacles, and honor our gift of life. When I hear of a candidate of recipient passing away, I not only grieve for the loss of their life and for their family. I grieve because a part of me goes with them. I know the daily struggle and strength each and everyone of us puts forth each second of every day to prove transplantation works. The loss is double. I've lost a friend, extended family member, and fellow kinsman who understands my thoughts without having to explain the medical aspects in detail. Or from the beginning.

Here is part of an email from Lifelink regarding Jerry.
You'll see why he is sorely missed.
I am very sad to inform you that LifeLink volunteer, Jerry Dinnan passed away last Thursday morning. For those of you who knew him you may recall, Jerry was a heart transplant recipient of nine years, was a passionate advocate for organ and tissue donation which few could rival. He was an active LifeLink volunteer, and led the good work of a support group - Transplant Recipients of Southwest Florida – in Ft. Myers. Jerry never turned down a chance to spread the important message of donation – and he touched countless lives by participating in every opportunity presented, including high school presentations, media interviews and other speaking opportunities.
Jerry was incredibly grateful for the gift of life he had been given by an organ donor, and he carried wonderful thoughts of his donor and donor family with him always. As a result, Jerry felt one of his most important roles was as facilitator of LifeLink Services of Remembrance, speaking from his heart to families from throughout West and Southwest Florida whose loved ones had become organ or tissue donors.
Even with his many responsibilities to the transplant community, Jerry found time to be an active member of his local church and a Hospice volunteer, ministering to families and individuals facing end of life issues. Jerry was a beloved husband to his wife, Debbie, for many years, and leaves behind four children, several grandchildren and many friends, who will all miss him dearly.

If you find a few spare minutes this Saturday morning (his services) please look up, smile and say hello to Jerry. He's earned his wings over and over...