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.