Changing Outlook

     Today, driving home from yet another doctors appointment, I thought about my outlook on my life.  Many of you know, I choose to not always "update" or post about what my daily life is about on Social Media.   This is a conscious choice.
In the last 5 years, I've been more instrospective and not having anything to say on certain topics.  I realized that hearing my lung transplant team tell me there was nothing more they could do for me (5 years now), hit me mentally harder than I thought. Yes, I'm determined to prove them wrong, but it does take a toll on one hearing that kind of news.  A person never gets used to it.

     Why post about my daily struggles ? Because no one really needs any more to bring them down. Many choose to allow too much negativity in their daily lives already.
I see no need to be Social about my pain, and anything else that goes along with my many surgeries.
I would rather bear this Cross I've been handed with dignity, and allow you my friends to lift me emotionally throughout the day. That is what friends do, right ?

Plus my Momma always said, if you have nothing nice to say...... in the days of social media- keep scrolling. 

     I find that instead of letting my life get me down, I try to find joy in the simple things- EVERY day.
While I was waiting for my 2nd lung transplant & on oxygen (again), my day started with sitting outside on the step, with a cup of coffee welcoming the sunrise. I could have hit FaceBook with "I didn't sleep again !" or "I'm so tired and exhausted "  instead I find that positive ray of sunshine to brighten my day.

When Nelson drops his tennis ball while I'm eating, I get up and play a few minutes of fetch. My food can wait. Time with Nelson cannot. He's happy, it warms my heart and makes me smile.

My morning is best spent sitting in a lounger outside watching him wait for squirrely or chase lizards.  The simple things can bring so much positive into our lives.

 A simple touch from Larry, or one of his practical jokes warms my heart. It means more than any store bought item he could ever give me. It reinforces our life together, & gives me that much needed boost to keep fighting.

Laughter and smiles- that's the key. So let's stop the name calling, finger pointing, and hatred- life can be negative enough, right?

Closing for the day- Nelson is unhappily on the couch alone & needs loving..

Finally News I can Smile About !

As I mentioned in a previous blog post, I've been bleeding internally since 2013, in 2014 we found it was from my right lung. Yeah the bad one from my 1st transplant 24 years ago..
I guess after all this time, it has a right to protest the captivity :)

While my transplant team also sent me home in 2014 with the statement, there's really nothing more we can do, and I accepted it to a degree, I also decided this was my fight.  That being said after 3 long years of becoming thoroughly exhausted from that long 3.5 hour one way drive to Shands and waking at 2AM to do the drive......  My PFTs  have risen !!!  My lung function is better, not where I'd love it to be,but better. We lungers will happily take any good news we can get..I watched as  my lung function has steadily declined over the past years but three months ago it stabilized...   Insert brief hope here :)

This visit they are up a bit ! I'm feeling better, not where I would like to be , but enough to get housework, yard work, etc done at my own pace without massive fatigue and continual naps.
Ozzi may not be happy with me skipping an afternoon nap here and there, but I will certainly  make it up to him somehow.

I have stopped all nebulizers. The excruciating ear pain causing the worst case scenario of vertigo imaginable brought on that decision.  It will also save me close to $400 a month. I know I will go back on it sometime soon,, just not now. I also recognize that the summer months June, July & August are my "magical" months.. You know, the ones where I end up in the hospital and have to claw my way out. I am preparing for those months, and this year am determined they will be my friend- no hospital.After all, what is 3 measley months out of 12 anyway?

We transplant patients don't "bounce back" like healthy folks, mine took 3 years..

All my other issues are still with me, but this I had to shout. I have worked hard for this glimmer and I intend to celebrate !

Oh, and the best yet ! Kidney and Lung Transplant told me, they didn't know what I was doing- just KEEP DOING IT ...


Be someone's Miracle- Become and Organ and Tissue Donor

Is There Ever A Normal?

     In June when my husband looked at me and oh so seriously stated, "Well it is that time of year for you." I wanted to dig out my cast iron skillet and go "Southern" on that mans head. period. I believe my look, said it all though.

    True to form, I had an appointment with my Lung Transplant clinic on July1, and was promptly admitted. Though I still wonder why. Yes, I was coughing terribly. Yes,  my PFT's were down. But seriously folks, It's that time of year. I have always given myself IVs . I mean who has time to wait for a nurse twice a day? This is my life, and I choose to do them myself.

     One of the new Transplant Docs has a wonderful way of making his patients feel secure and safe. Just like Dr. Baz used to. I was feeling so horrible, I fell for it- hook, line and sinker. I agreed to be admitted, start antibiotics and have a bronchoscopy in the morning. I was put on the overflow wing the 8th floor. At first I was hesitant, until I realized these were all the nurses I had when on 11 in the old building ! It was like old home week, we talked, chatted and laughed- well until Dr. Salgado popped in and said I was being moved to 5. Deep depression sets in... My feeling of safeness slowly dissipates..  My nurse Eron, accessed my port and I did not even feel it! That is a huge Hooray for me.

    For those of you who have never had a port, it feels like a small nickel size circle under the skin on one side of your chest.  This is accessed with a special needle, and many make it feel like they are trying to pin you to the chair when inserting the needle.  It never comes out- so my other veins (which are non-existent) get saved.  The only down side is, when they change the needle there is no new place to go into. Yep, the needle goes into the same slightly sore spot your old needle just left.

   Needless to say, I was only in for one day. I could not wait to leave ! A letter to hospital Administration is in the works. This was the most traumatic experience I can remember. I was discharged with A-fib on July 2 and to this day still  have it. This may not seem like much to you, but I had been A-fib free for close to one year and we were decreasing my meds. The stress caused by 2 nurses on 5 started this.Suffice it to say, trauma nurses should not be lung transplant nurses. They should not be required to leave the room of a trauma patient and decompress to care for a transplant patient on the mend.

    Enough on that subject. The situation we have fought for 6 years has happened. The "pus" and infection from my right lung has now started settling in my left lung. They should have yanked that trouble causing PITA  when I asked years ago !  So now my natural progression will more than likely speed up. I have faced this before, and will again.. Only this time there will be no new transplant - the only light at the end of the tunnel will be final freedom of pain.

     So I came home with IV antibiotics, nebulizer again twice a day (which will be continuous) and alot of prayers. My IV was finished on Friday. Yay for a decent shower!  So now I am hopeful the A-fib will correct itself. I have gone from 12.5 mg of Metoprolol twice a day to 50mg twice a day.  I can barely stay awake as this slows not only my heart rate( which it hasn't as of yet) but the rest of my body as well. Naps are no longer around 1PM, but 11Am  lasting until about 5PM. So basically, I have no life except for auditioning for the role of Sleeping Beauty :)  This medication also creates nausea and what feels like an intestinal flu but is in reality a side effect. Yes, it is too high a dose for me. I guess the next option will be to shock my heart back into a normal rhythm... They better start convincing now for say 2017 right?

     I'm ever anxious to get my body and life back on track and start living again. No this is not a complaint, just stating a mere fact. I have a Bucket List to experience with Ozzi after all- who has recently had a tumor removed from his nose. We are quite a pair in our old age ain't we?

How Would You Like To Be Remembered ?

      Over the last few months, I've witnessed quite a bit of bitterness in the Social Networking Groups and Personal pages of friends. It has me worried. I keep seeing, "I don't want to die waiting". "I can't wait for my transplant so I can get off oxygen". " I need to be transplanted now!"  More often than not, I see posts filled with bitterness and anger. Is this how we want to be remembered?  Someone who was bitter to the end?  Or do we want to be thought of with warmth and thoughts of she smiled to the end...

Think about it....

After working in the medical field for years and witnessing a variety of emotions from patients, I made a solemn vow that the bitterness would not over take me. I would have no regrets.  One of the best things my transplant center did was stress...
1. You may not get transplanted.
2. You may not come out at 100%
3. You may come out and still be on oxygen.
4. Live your life NOW

I always kept this in the back of my subconscious.

If I didn't get my transplant, well I died trying and gave it my best- laughing to the end.
If I didn't come out at 100% or on oxygen- I would deal with it. It's better than where I was right?

I was also told to not spend what time I had left pinning all my hopes on a transplant. What was left of my life would fade away without me realizing it. I hope others take that to heart.  Too many times we focus on this pain or that ache and not living life.
Life is meant to live- no matter your limitations.. Enjoy your family outings even if from a chair. You are there.. Your family is overjoyed you are there too.
Those birthdays are so important. Many parties show me celebrating with the birthday person on oxygen. I have a wedding photo while on oxygen. This is my life and my memories !

I cannot let anyone take those from me, or not experience them due to bitterness. Refuse to let it consume you.

Point to ponder... If you pin every hope and dream on a transplant- what happens if you don't come out 100% ?

My New Life 10/23/1991

The rest of the story on that fateful night is:

My Air Ambulance arrived in Pittsburgh with a very worried Doctor onboard. The customs officials had taken so much of the precious time I needed to make my "transplant window", that we landed at the airport at the exact time I was supposed to be on the table -open - and ready for new lungs..
More delays  ....

I still hear the ambulance wail as we made our way to the hospital.

In the ER the Anesthesiologist and a Transplant Coordiantor were waiting for me.  I found out that the surgeons were "harvesting" the organs in another city. Yes, back then they used the term harvesting, I know it's different now. More politically correct, but this is my story and this is how it happened.
As I lay on the stretcher we chatted away about non-essential topics. We then went into telling jokes.
I spied the curtain moving, the Anesthesiologist changed facial expressions and looked down at me.
"Ready to go?"  Excitedly, "Is it a go?" "It's a go, they're on their way back" " Let's get this show on the road !"  "Well, you have to tell me the punch line before I can put you under ?"

And that is how I went into a life saving lung transplant.  Telling jokes..  If we cannot laugh through our troubles - we will cry hysterically until we destroy ourselves.

Many have been astonished that I did not ask for "Last Rites" just in case. Honestly, the thought never occured to  me. I'd had 18 months to  think, and get my life right with God. I felt this was all in His hands as he guided the surgeons, nurses and finally gave that torch to me. I thought and still do think, that I am in a win-win situation.. If I was allowed to live, I had more time with family, friends and making memories. If I did not live, I was going home, no more oxygen, struggling to breathe, fatigue, I would be whole again ! Who could argue with those odds?

The next thing I remember is waking up on October 25th.. and that is an adventure in itself...

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.