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..