Acceptance -OR How To Survive In This Crazy World

      Over the last few months I've read many posts on Social Media about others health issues, life struggles, etc.  It pains me to "feel" the heartache I sense coming through their words. I met a sweet lady, newly to the possible transplanted community recently, she stated she just finished reading my blog and wasn't sure if she could go through all I have.
     First, let me say ....  Not everyone will go through all I have. With the advances in medicine today, many will soar through their health issues with flying colors. I have met some of these new trail blazers and they warm my heart. Those of us with more than 15 years behind us (24 here) were the trail blazers of our day too. We helped spark that debate of, "What makes them thrive?"  How does patient A live for 20 years with a transplant, while patient B rejects within 2 years?

     I believe it can be summed up into two words: Acceptance and Overcome
Let's look at acceptance.
I accepted in 1977, I may not live to see 20 years old... I overcame it.
I accepted that in late 1989, I was given 12 months to live... Back then a physician had to give you this "death sentence" for  you to be listed for a transplant.. I overcame it. On that 365th day I woke to a sense of , "is this my last"  then I thought NO it will not be.
I accepted when my transplant team told me, this could be the last few years of my life- go enjoy it.
I cried over things I  may never see again: the wind in the Palm Trees, the ocean, etc. BUT I overcame it by NOT falling into a mind trap of doing this everyday.  I gave my "crying time" a priority of one hour once a month. The rest was devoted to my life. Each month I took my "woe is me" box from the shelf, opened it, had a good cry, closed it- and continued my life.

Just before Y2K, I was told I had chronic rejection. I was floored. Back then, it was a death sentence to us all. I cried for a few hours, then hit the Internet.. I researched, I read, and I researched more. My team gave me a game plan of what needed to be done. I accepted it. This game plan was my light at the end of the tunnel. It was rough.. It took all the strength and will power I had in me. BUT I DID IT! I learned I am stronger than I ever imagined, and more importantly I learned how to draw on that strength. We stopped the rejection... but...

I was refused a 2nd transplant....

I did not get depressed- I went into action. I contacted EVERY lung transplant center in the nation - and some were not so nice to me either. I found one who would evaluate me !  My new center saw a determination in me that my first one did not. I did everything that was asked of me.Limited breathing capacity, on oxygen (again), and knowing I would need a new kidney after my lungs were re-transplanted. Each time I was rushed in to the hospital, my Dr would give me a game plan of what needed to be done, I would reply "OK" . He knew beyond a shadow of a doubt, I was in 150%. I never asked how I would feel, if it would hurt, just "when can we start".
I overcame... I got my new lung, and stayed on a respirator for an additional week to give my kidneys a rest.
My next Acceptance was needing a kidney transplant.  I did all they asked- except - accept that I would need dialysis. I researched...  I had 3 pages of food to avoid that I created. Orange highlights had Potassium, Pink had phosphorus and green had both. I severely restricted my diet- never got dialysis... I overcame.. The thought of a 16 gauge needle in my arm gave me all the determination I needed.
If you have read most of my blog, you will remember that last year 2014 was not a good year for me. My right lung from the original transplant is becoming a little bothersome. My transplant team basically sent me home with the statement, there is nothing more we can do.  I took this as being sent home to die. That is NOT being depressed. That is a call to action!  Within 3 months I was back to my original strength, walking twice a day, swimming, and enjoying life within my boundaries. I asked one of my team if they had any idea of how long I had. I secretly wanted to prove them wrong :)  He replied with anyone else I would estimate- you- we have no idea. That made my day !

I accepted this too... And I am overcoming it.

I have recently lost another beloved pet.. My Toy Fox Terrier CC (Capt Chaos) has left me. The loss of both "boys" has been hard. Dibs was due to an enlarged heart and CC to kidney failure. Both of which I can relate to.  I still have my Ozzi with me. Though we have a deal- he will live forever as long as he is the only dog. You see, he thinks it's good being the king :)

This is not to say my life is all peaches and roses. I have a new regimen I follow to keep my right lung from affecting my left. I know I can still exercise, Dr. Baz taught me that when I was dying for a lung transplant. I can surely do it now. As my right lung wastes away, I can make sure the rest of me stays as healthy as possible. I will not give in ! That is not in my chemical, physical, or mental make up. It is not a fun journey at times, but it is still my journey to live. I intend to make it a grand adventure !

I have stated many times in my life, I CANNOT AFFORD THE LUXURY OF A NEGATIVE THOUGHT.   This is more true than you will ever know, and has kept me from depression.

So... Accept and Overcome.. No matter what you face in life.. If you are diagnosed with Diabetes, Heart disease, or any other ailment- Accept it Now. So you can Overcome it and triumph ! For to not accept can only lead to more health issues down the road.

I would like to take a moment and thank Maher Baz MD for all he taught me through his time as my transplant physician. It is the inner strength, he showed me I had, that I now draw on. I think back to his teaching during the wait for my 2nd lung transplant and the quiet confidence I felt he had for me to overcome. I will always attribute my life and how I choose to overcome my obstacles to him.

To Blog or Not ToBlog

I've recently heard from a few of you that I haven't blogged in awhile. Looking at my last post, I would have to agree. I want to thank you for being my reminder, and giving me something to truly think about these past few days.
I've discovered that lately when I don't feel well, I tend to retreat into myself as opposed to putting it out there in cyberspace. I mean, why put my misery off you right? Though it isn't really misery, we long-termers have learned to just keep going no matter what. There is always a "good day" right around the corner.

Before the days of Facebook and social media, I kept a journal. I was obsessively diligent in writing my daily thoughts and actions each night. This journaling literally saved my life, not only emotionally, but medically. Each time I open one particular journal (this one I keep handy) I am vividly reminded of that time 12 years ago. I remember what I endured medically, how I felt each day with my strength and life slowly ebbing away. But mostly I remember how I wrote about it, and how it made me stronger mentally to carry on.

Now, today we have blogging. So my decision is to write about my bad days as well as my good or remain quiet. My Reader's Digest (condensed) version is this:
The last few months have been a trial with new developments medically. I've had enough ct scans, and labs to keep me happy for another decade!  I trudge through all these new aches and pains with a vengeance.
However, inside is that nagging thought, "will this be one of those "bad years"?"  If you have severe medical issues you know what I mean. I live in dread of another winter like the one I endured in 2007/2008 which carried over to 2009. Actually I am still paying for that time too. These past months have brought about more "not so good days" than good days. I refuse to believe they are bad days yet, I haven't hit the worst day I've ever had on a scale of 1-10.

Through all this, my lung function is stable and remains the same. Plus my kidney function is great too. I am determined to keep these 2 organs in top condition as long as I possibly can, these are a cherished Gift. I am confident these other aches and pains are merely the aging process, and I will accept and conquer these like a champ. After all if not for 3 graciously generous families I would never have been given the chance to conquer the aging process .

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.

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!