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 .

Dilemmas and Bucket Loads

       Many of us feel overwhelmed in our daily lives at one point or another. I am no different. I've been facing a small dilemma of whether to blog about  issues I'm facing or keep quiet.  On one hand, if I blog I hope it does not change the mind of someone who is awaiting that precious Gift Of Life- an organ transplant. However. on the other hand it just may strike a chord  in someone facing a similar issue and help them feel they are not alone.

      I've been a little absent not only here but also on my FaceBook fan page, mainly due to the fact that my energy level for quite some time has seemed non-existent.  Of course, I did have to treat the lower left corner of my lip for pre- skin cancer, which in itself was no fun. A person never truly realizes how much actually touches your lips until it burns at the point of contact.. Oh and brushing your  teeth- well that was a major feat of gymnastics!. I'm an avid brusher, so I decided to bite the bullet and deal with the pain until I could get the toothpaste washed off.

  On a good note, I am still off Insulin.. YAY!!! My blood sugars are in range and I've even had a few lows. My HgbA1c  was 5.3 at my last visit so the endocrinologist is ecstatic. Why I stressed over telling him I was off insulin amazes me.

 I have however been having alot of pain. At first this was attributed to muscle and joint pain-but we now suspect that my Thyroid may have something to do with it also. I felt extremely stylish with an ace bandage wrapped around my ankle for 4 days! They found my thyroid to be enlarged and with cysts all over it via a sonogram. After the official reading we'll make a game plan. Adding to that, me the person who greets each day with a devilish grin and "hits the ground running" has lost her "get up and go" . Oh,I still greet each day with a devilish grin, but the energy level seems to be on vacation. This is completely not my style, so I am conducting an extensive search to find which tropical island my energy fairy has gone to. No more Pina coladas on the beach- honey time to come home!

    And this week has brought on a new development.  Remember how good it feels to stretch when you wake up?  Oh..me to...  Since Monday each morning I stretch it triggers my a-fib rapid heart rate.. No fun and it totally ruins that wonderful stretchy feeling.. I'm now taking extra meds for this-lucky me.. Just more to add to those little boxes to remind myself. I promised my cardiologist I'd call him if these "episodes" became more frequent than say.. 1-2 times a month. Think this falls into that category? I've had ablation for one form now I guess my heart is lonely and making itself known..

     I also know that these transplants won't last forever-but- this is not that time- trust me.  ( evil grin)

Have you heard about Rock Scar Love Designs?

     While surfing through FaceBook I found this great page celebrating organ transplant recipients with the coolest T-shirts for us ever!   You can find it at Rock Scar Love  .

This is a company founded by a transplant recipient- for all recipients to celebrate their scars and all that goes with them.  Now you  may think it wrong for someone to make money off our scars- but I wholeheartedly applaud this venture, mainly because it fills a void in promoting awareness. We can actually wear ladies tank tops or t-shirts with great sayings, plus more items to purchase.

She is active in the transplant community as well. I've ordered my shirts and will wear them proudly. After all, as you've heard me say before "I had to die to get these battle scars".

This I "borrowed" from their page:

Mission

ock Scar Love is a modern, trend setting clothing company focused on helping individuals with physical, mental and emotional scars to embrace the lessons they represent  We believe that scars are sexy and when embraced they can only change lives for the positive. We look to provide sexy scar owners a way to tell their story and inspire others to live passionate lives.

Our corporate slogan of “You choose” is the heart of human existence … do our lives define us or do we define our lives? Each human is given struggles in life.  Our experiences are our loads to bear…our defining moments.  Do they define us or do we define them? We can all choose to either use our experiences to empower us and make us amazing individuals, or to use them as an excuse for why we can’t do something. Everyone has the capability to choose to live every day, every hour and every moment with passion; to change the aspects of their lives that make them unhappy.  RockScar Love Designs challenges fans to take their life struggles and use them as a stepping stone to greatness.

Tshirt, women’s tanks, burnout tees or accessories…we have a way for you to rock your scar with love!

There is currently a giveaway  on their page for a great tank top. Please check it out and enter! giveaway

Caustic or Costic???

Like my new word?

Caustic is what this medicine is doing to my lip.

Costic is when I saw the price I paid vs the retail price.

I will never understand why pharmaceutical companies can't make small tubes of medication as opposed to larger ones that end up being thrown away. I mean geez, I have a 2mm spot on my lip that I use a Q-tip to put this medication on for 2 weeks tops. And the smallest they make is 30gram tubes. Do they expect us to use it all over or what?

Well, this is the second day and my lip looks pinkish and severely chapped. I am having withdrawal symptoms from Chapstick.  You can't use it while using this medication. I can us Vaseline -but my tubes are so lonely there on the shelf and Vaseline doesn't last as long either.

I've had an additional situation and not sure if it's separate or aggravated by this medicine.

My heart has been racing like the wind since yesterday. Got it calmed down yesterday evening only to have it start again this morning. I'm sure all will calm down eventually.
I got alot of sleep last night and feel much better.

So, to take my walks I need a bandaid on the area (feat of the impossible) and a hat. I tried a hat yesterday and for the life of me couldn't figure out how it will protect my lip with the Florida sun. No matter how I situated the hat it just did not shadow my face. It was a big straw hat -totally me- with rhinestone dolphins and jewels all over the brim.. My beach day hat. I opted for my baseball cap and walked with my head down.. I'm sure the neighbors thought I was insane or something.

Today we have to wait for it to cool off. Little DB would never make it in this 90 degree heat. I usually carry him most of the way at night-but he does much better if we wait.

We'll see how this crusty lip looks in the morning!

Upheavals and Understanding

    While it's been awhile since my last post, I have thought about finding a moment to sit and blog.
Update:
 I'm still off Insulin. Will let my doctor know at my appointment this month.
 I got the INR machine to test my own anti-coagulant level. It's fast and simple, just like checking my blood sugar. But it does save driving to Venice to the Doctor to have it done.

My Dermatologist did a biopsy on the lower left side of my lip last week. I've had chronic chapped lips for eons and joke that Chapstick and Carmex should send me a profit sharing check. Well, after a severe bout of stomach virus with a high temperature, my lip looked terrible. Plus it happened at appointment time. She didn't like it nor did she like the fact that it hasn't healed in 2 years.
  I am not ashamed to say, I almost passed out in her office. My stomach still had fully recovered and I was queasy anyway. You know it takes us transplants much longer to get back to "normal" than the healthy. So I waited a week and got the results yesterday.

It came back as pre-cancerous and she called in a cream prescription. After talking to her nurse and my pharmacist I am dreading using this cream.  She said it would make the area look like road rash. NOT a good visual in my eyes. I was joking with the pharmacist and he stated that was a nice way to describe what it'll do. His closing comment mentioned raw meat... Great ! just what I want others to see  when they look at me.
I asked him how I am supposed to eat with my lip like that?  "Smoothies" I suggest Smoothie King on 41.
Now we were joking through all this-but I know he was serious.

This brings up alot of questions living in Florida. Can I still take my morning and afternoon walks? Sure - put a large bandaid over the affected area. Have you honestly tried to put much less keep a bandaid  on the lower left corner of YOUR lip?The dermatologist put one there after the biopsy and it stayed all of 30 minutes. It was worse than trying to drink water after leaving the dentist! I was also told I need to wear a hat on my walks. Hmmmm.

I asked why can't it be cut out and forget it? The pharmacist replied "But you don't want this scar on your lip".  "Well, it would add to my Pirate persona -plus just think I'd be a hit at the Medieval Fair and not need make up~!"  He thinks I'm insane anyway, so we both got a good laugh.

I just had another thought . How do I apply it? I can't use my finger-it'll get road rash too right?

Oh the joys of life are fruitful and many!

This I too will conquer!

Cinco De Mayo !!!!!

This day six years ago was one of the luckiest days of my life!

You see, on May 5, 2005 yep, 05/05/05  ( gotta be lucky) I received my kidney transplant.. To make it more coincidental my surgeons name was Dr. Foley! Those of you not around medical issues probably wouldn't understand the humor.The relation of Dr. Foley and "foley catheters " was not lost on me.

********** So ..... today I am 6 years old **********

I get to run, play , jump on the bed to my hearts content1 I'm a kid again!!!!

But none of this would be possible without the gracious Gift of Life from my donor Susie Paxton.  There were a myriad of coincidences that year.. My Donor Dad had removed dear Susie from life support on her birthday May 3,2005- and graciously gave me a true Gift on May 5, 2005. I lost my Daddy on June 3, 2005 and he was 30 days from his birthday on July 3,2005.  I wrote an anonymous letter to my donor family one year later and through a few letters I finally spoke with Ron Paxton who I now call  my Donor Dad.

Life throws us many curve balls, but it is true that when one door closes a window opens..  I discovered that Susie and me had many similarities with very different outcomes. I owe her and Donor Dad my life. For you see if not for the kidney transplant eventually the lung transplant and the rest of my health would have gone into a steady decline.

If you have a moment, please visit my "honor page"  and meet Susie... She is a true gift to all !

Insulin - Day how many?

It seems to have gone by so fast and yet I'm still insulin free. Yes, I have exercised more (YAY) and yes I am watching what I eat. However, I no longer have that constant stress of  worrying about my blood sugar dropping unexpectedly. The churning feeling is gone and I actually was able to feel & hear hunger rumbling in my stomach! Yes I waited until I was actually hungry to make sure I could still feel it :)

This past week has had me watching my health in other areas as well. My INR test for coumadin last Thursday showed an astoundingly thin blood level for me.. #7-no wonder I have bruises everywhere! Scared the Dr's office so bad I was told "Don't get cut-don't get a scratch" I mean come on, I have 3 dogs.. Where do they think the bruises came from???  Today it read at 1.4 which is great-but to them too low. They want it between 2-3 and my lung transplant team want it 1-2.. Gonna let them hash it out.. Just another pull to deal with between physicians.

With the heavy tree pollen content around here I've also had a drop in my home spiromerty. I called and the decision was to take 40mg Prednisone (the bane of my existence) for 4 days ... There goes the blood sugar control.. It may put me back on insulin for the duration to keep it stable.

So far today I haven't needed it-but do have the Novolog sitting on ready just in case.

Will find out the blood sugar at dinnertime..If  you hear a loud screaming "NOooooooo" it's only me..

Insulin -Day One

So yesterday I chose to not take any insulin and work on modifying my eating and exercise habits.

I was pleasantly surprised to find that my blood sugar readings were within range except at bedtime. This is where I'd had some yogurt as a snack so the reading was what it would have been on insulin too.
This morning I wasn't in the 70's to low 80's but at 92.  Lunch was 101..  so I'm attempting day 2 now.

I have developed a slight headache which I'm not sure is related or not. I may start taking the insulin again depending on how my numbers look. I've also ramped up my exercise program and water consumption. Both of which will benefit me in the long run.

Please understand this is not something that you should undertake because it's currently working for me. I have merely gone back to the severe controls that used to work for me before and gave up all the food I started eating and shouldn't have.

Should my blood sugar readings rise...I will be first in line for that shot. For the moment it's nice to have hunger pangs and not insulin entering my blood stream to work.

Insulin

I haven't posted in along while mainly due to a few health issues, but I didn't want to post them here and make anyone worry it might happen to them too. When I don't feel well  I normally go into seclusion so my body can regenerate and recuperate.

Todays posting has been on my mind for quite sometime now and this I need to get out there.

As many of you  know I voluntarily started using Insulin (long-acting) last year because I could read the writing on the wall. My blood sugar levels were rising and knowing that Prograf and Prednisone were the culprits I wanted to correct it before it got bad.
I started with 15 units a day and have finally settled at 8 IU.Well that's what my Doctor has me on. I've been using 6IU for the last 4 months. I am still having morning low readings and sometimes waking in the night with severe lows.
The one thing bothering me at the moment though, is the churning in my stomach all hours of the night. If you're on insulin you know this is when the time release is "releasing" the insulin into your system. Three times last night it woke  me up. As usual I lay there waiting for symptoms of low blood sugar to appear and when they didn't I knew it was  time release at the wrong time. This is happening alot lately and I would really like to get a full nights sleep without waking- waiting-then trying to go back to sleep after being on full alert.

I remember I had a radically self-motivated strict diet prior to insulin. I am considering going back to that diet.  One big issue I have with insulin is it gives me too much freedom. Freedom to eat things things I shouldn't; sweets, potatoes, bread-you know all those carbohydrates that love to raise our blood sugar. It also creates the mind set that I have insulin why exercise? It'll only lower my blood sugar and I'll have to eat to bring it back up. What a vicious cycle this insulin creates.

So we sit back, eat what we shouldn't and are afraid to exercise... Sorry, not why I got these 3 organ transplants. This is NOT honoring my donors and their families.

How do they do that?

Ever wondered how they transport a human heart for transplantation keeping it pumping?

Tonight on ABC World News Tonight at 7PM EST they will explain it all..

You might want to program your VCR or plan to watch it.

October 23,1991

       It hardly seems that nineteen years have passed since one anonymous, caring family changed my life.
So many years have passed and I've experienced so many things I never thought possible, yet I remember this day as if it were yesterday......
       It was just past midnight on October 23,1991 when my mother woke me for a phone call. I should have known by the excitement in her eyes who the caller was. It was my pre-transplant coordinator from the University of Pittsburgh Medical Center (UPMC) telling me there were lungs available and I was # 1 to receive. I also knew that I could get there, and it be a "no go" meaning the lungs deteriorated too much in transport or were too damaged to transplant.
     It is because of this one day, I learned to  have more patience than the normal person should need, and survival. The survival part will be explained to you soon.
      I contacted my Air Ambulance company who had ben contracted to fly me to Pittsburgh from Jacksonville, Florida. They were under contract to have a plane waiting in Alabama for just such an emergency. They returned my call with the grim news that a plane would be arriving from Houston, TX. Now being an airline ops agent I knew this would not get me to UPMC in my allotted 4 hours.  I mentioned that after the pilots got there, fueled, checked the weather, did a pre-flight and a 2 hour trip to JAX I would not make the 4 hour window necessary. I could feel my chances slowly slipping away. I mentioned I would call UPMC for the OK.
      Upon calling and speaking with my coordinator he mentioned they had a plane sitting in Tampa that had just taken a patient back to the US Virgin Islands and it would be sent to me. Hurray!!!! I called the air ambulance back with the news and he was visibly upset. When he started asking when the arrival was and the tail number alarm bells began going off and I asked why he needed this info since he was no longer in the equasion. "Merely making sure all goes well for you." Yeah right. I advised him I was in aviation ops and all was fine but thanks anyway.
       We headed out for the private section (FBO) of the airport to await my "chariot". While we were sitting in the lobby 3 customs agents walked in and glanced my way. "alarm bells again" I mentioned : "They better not be looking for my plane!" Well it turns out, they were.  The plane landed and the medical staff came looking for me and customs reared it's ugly head. Seems they had a tip (did I mention those alarm bells from the air ambulance) that a medical plane was landing that had not cleared customs prior to arrival. The Captain told them he was in the US Virgin Islands, then West Palm Beach and finally Tampa before flying to JAX to get me. He even showed them the log book. Well those lovely customs officials demanded to take apart all the medical equipment onboard and inspect it. No way said the DR. onboard, 'These are needed to keep her alive prior to transplant." The pilot offered to let them fly to Pittsburgh -take apart all the equipment upon landing and then he would fly them back to JAX-no way.
         I was slowly watching my chance at life slip away.... I made a snap decision and asked for a quarter. "Why?" I'm calling channel four news, they'll get my plane in the air. Without being noticed I walked to a pay phone and called the news station. I explained that customs was holding up a "life flight" air ambulance on a bogus tip. When I was asked why I was calling, my reponse was "This is truly a matter of life and death-and it happens to be MINE!"  Within seconds a loud voice boomed over the customs walkie talkie "Who the hell called channel four!!!!" They all looked at me as I politely smiled and held up the phone receiver. walkie-talkie "Get that damned plane in the air!" Our plane was released (not without dirty looks) and I was finally on my way.
         The medical staff onboard were fantastic. Any need was immediately seen to and I was told to relax and enjoy the trip. Flying through those clouds on a dark night felt like I was flying to a new life and new adventure. That feeling is still with me today. Each day is a new adventure to be enjoyed with absolute relish and abandon.
         Due to the delays we got to Pittsburgh airport late. I was rushed to UPMC where the Dr's said they were cutting the time very close. I should have been on the table, old lungs out and waiting for my new ones by 5AM. I didn't arrive until 5AM.... As I lay on a gurney in the ER telling the staff jokes one of the Dr's. looked at me and said :"Well are you ready to go?" My eyes got as big as saucers, I smiled and asked, "So, it's a go?" "Yep, hurry up with that punch line before we put you under."

And thus my new life began.....

        It was not all cakes and punch, don't let me kid you. After being taken off the respirator I had to be placed back on due to fluid build up in my lungs. That is a story in itself if anyone cares for a laugh. I know a nurse who certainly isn't laughing to this day. When I woke up and realized I was back on the respirator (the bane of my existence) it had to be the most depressing day of my life! "Why did I do this?" Alarms started going off! Staff rushing around and entering the cubicle next  to me. The recipient next to me turned critical! Talk about an attitude adjustment. "I opened my eyes. looked to heaven, and said "Thank you God, I never meant to think that way!" "Just please don't let me have to be shocked with all these (49) staples in my chest".

     I was extubated in a few days and transferred to the lung transplant wing. Whew.... Getting closer to home.  I did suffer a severe rejection, but came out of it with my sat levels at 100% not to shabby for a girl who lived on 46% room air for most of her life. I was told that the new lungs were severely damaged in the accident, and I may have to be placed back on a respirator to wait for another "good" set of lungs. I thought,"no way-YOU don't now me very well."

       Yes I have learned alot and organ transplantation has made me the character I am today. But would I trade one single minute good or bad? Not at all.
So today please take a moment, look up to the sky and thank my anonymous donor for giving me a life I never dreamed possible. She was only 34 and from Lancaster, PA.
And if you aren't an organ/tissue donor please consider it. Don't wait until it affects you or your family personally. There is a family out there just like yours watching the life slowly ebb out of a loved one with a terminal diagnosis.


Share your life....Share your decision... Become an Organ Donor

Live your Life as if you were a pencil.

A PENCIL MAKER TOLD THE PENCIL 5 IMPORTANT LESSONS JUST BEFORE PUTTING IT IN THE BOX :





1.) EVERYTHING YOU DO WILL ALWAYS LEAVE A MARK.



2.) YOU CAN ALWAYS CORRECT THE MISTAKES YOU MAKE.



3.) WHAT IS IMPORTANT IS WHAT IS INSIDE OF YOU.



4.) IN LIFE, YOU WILL UNDERGO PAINFUL SHARPENINGS,

WHICH WILL ONLY MAKE YOU BETTER.



5.) TO BE THE BEST PENCIL, YOU MUST ALLOW YOURSELF TO BE HELD AND GUIDED BY THE HAND THAT HOLDS YOU.





We all need to be constantly sharpened. This parable may encourage you to know that you are a special person, with unique God-given talents and abilities. Only you can fulfill the purpose which you were born to accomplish. Never allow yourself to get discouraged and think that your life is insignificant and cannot be changed and, like the pencil, always remember that the most important part of who you are, is what's inside of you.

Fleming Health Care Repeal Update

As manyo f you know I stay pretty active with what out government has in store for us..
I received this email today and since it's written to understand I wanted to share it with everyone.
If this upsets you, WRITE a letter-write alot of letters. Make phone calls!

We the disabled deserve better than this..We will be paying out more money we do not have, with no way to earn more. The future looks grim for the disabled. Is it the goal to herd us back into seclusion and out of public eye. Maybe our government would rather the seniors as well as us-be placed in governemnent run homes and take away our last bit of dignity.




FLEMING HEALTH CARE REPEAL UPDATE


Health Care Reform is Paid for by Cuts to Medicare







The enormous health care bill signed into law will be largely paid for by cuts to services many seniors depend on. Here is just a sampling of the Medicare cuts, totaling more than $500 billion, to come:

In 2010:



Medicare will cut reimbursements to inpatient psychiatric hospitals.

In 2011:



Medicare cuts to home health agencies begin.

Wealthier seniors ($85K/$170K) begin paying higher Part D premiums.

Medicare cuts begin to ambulance services, ambulatory surgery centers, diagnostic labs, and durable medical equipment.

Seniors are prohibited from purchasing power wheelchairs unless they first rent for 13 months.

New Medicare cuts to long term care hospitals begin.

New Medicare cuts to hospitals and cuts to nursing homes begin (FY12)

Medicare Advantage cuts begin. Participating seniors will face premium increases, benefit cuts, or both.

In 2012:



Medicare reimbursements for dialysis treatments are cut.

Medicare cuts to hospice begin.

In 2013:



Medicare reimbursements to hospitals that serve low-income seniors will be cut.

WHAT THIS MEANS FOR YOU: When providers get paid less by Medicare for services seniors depend on, many may be forced to decrease their services or close some of their locations just to make ends meet. This means that seniors may experience a decrease in their access to essential care, which is already a problem for many in rural districts. The cuts to Medicare Advantage may cause many of these insurance providers to stop offering plans to seniors, forcing seniors back into traditional Medicare.



THE DOCTOR'S DIAGNOSIS: Senior should not have to bear the cost of health care reform. Instead, we need common-sense health reform that will lead to quality, affordable health care, without breaking the bank, or cutting services to seniors. We need to repeal the bill.



As this process unfolds, I will continue to work to represent you, bring common-sense to this debate, and work to repeal this unpopular law.



Sincerely,





JOHN FLEMING, M.D.

Member of Congress



P.S. If you’d like more information, please take a minute to visit my newly redesigned website at www.fleming.house.gov or follow me on Facebook at www.facebook.com/repjohnfleming or on Twitter at www.twitter.com/repfleming

What would you do?

    While I realize that many wonder if they should have a transplant, I don't remember thinking this way.
After all, my first one was almost 19 years ago. I do remember making sure affairs were in order just in case. I also realized it was a 50/50 shot. I might NOT get that call in time.  I spent more time relishing seeing the waves crash the shore at the beach, wind lightly swaying the palm trees, and rain.
      I did however try to put my life into perspective.. Back in the middle ages a person had to be given the death sentence of "12 months to live" to be placed on a transplant list. I remember the shock the day I heard this, "But I'm feeling fine." I also remember waking on that fateful 365th day and wondering if it would be my last.  I did not ponder if I should get a transplant. 
      When I was told that I would need a second lung and then a kidney, my thoughts were "Where do I sign up?" I had enjoyed a life I never imagined possible for 9 years with the first transplant. And back then the survival rate was 50% past one year and 3 years survivability... I AM STILL HERE... Thought that needed to be emphasized.


So my question to you is:

If you were told you needed an organ transplant or another organ transplant :
What would you do? And Why?

Medicare Part D and other unfair practices.

 I guess you now know by the title I'm in a not so good place with the coverage the seniors and disabled are forced to accept. I received that wonderful notification that I was $120 away from "THE BLACK HOLE"  coverage gap-purchasing only my daily meds required for survival.  I've been extremely careful, trying to not tread those waters. After all, I'm still paying off all those wonderful meds from 2008!
     As luck would have it, I started coughing again. This past Saturday it got a new complication. I was coughing up blood. Now this is a MAJOR red flag for me, since this was one of my original symptoms. So to say I was scared is an understatement. After calling my transplant coordinator, some cough suppressant with codeine was called into  my local pharmacy. Imaging my surprise when I was told the cost was $125.00-because my Part D Provider  CVS Caremark Silverscript does not cover cough suppressants. The pharmacist suggested a lesser expensive one and I was caught in the hurdle of ruining my coordinators day off. I called CVS Caremark when I got home and got the usual song and dance.. "Well if it were a Monday, we could push through an authorization/" BUT that takes 72 hrs- "Well yes".  Completely unfair since they regularly change the formulary forcing all participants to switch meds-bother Doctors- JUST every other month or so. I've actually had to stop updating my formulary book I have received so many.
       My luck ran true to form once again and I began a light temperature. The decision was made to call in the Big Guns... I was getting Levacquin 750 mg for 5 days. As I inwardly gritted my teeth ( remember the tooth incident?) thinking of how exorbitant the cost was going to be.  Was I ever wrong... IT WAS WORSE!!!  Five tablets cost me $140.23! Do you realize that is $28.05 per tablet.  Oh and CVS well they saved me a whopping $38.76.. 
       I know you'll say well you'll get a $250 rebate from the gov't when you hit the gap. So what! Look how much I have to spend to get out of the gap.
     When things like this happen, I have to wonder is there anyone minding the raises our elected officials get?  Is anyone up there controlling the cost of these meds? NOPE.  Are they trying to cut physician payouts -forcing us to pay more- YEP. Are they not giving out that cost of living raise? NOPE
Are they helping other countries while we have scores of unemployed? Are they rebuilding other countries while Americans can't afford food?How they in good conscience send billions to help others and not help their own?
     I mentioned to the lovely CSR from CVS who answered my call that I intended to climb back on my soapbox, and let others know what they are doing to their members. I have.
By the way, I also sent a letter to President Barack Obama- wonder if he'll answer...?

Happy Birthday Daddy! I Miss You

05/15/05Daddy-The Positive foundation






As I’ve grown older, I’ve learned many things. Most of them were instilled in me from my parents. We always remember the good times with fondness, however I recall that the bad ones made us stronger and closer as a family. We had a happy life but each of us kids knew we didn’t dare cross daddy. Retribution was swift and the punishment fit the offense. He wasn’t the type to “beat us” as kids say nowadays, oh no not our daddy. He knew that restriction was the worst thing you could do to a teen or child. I think it was the disappointment on his face that was the real punishment for me. I’d live with the thought that I’d let him down and it ate at me for days.

Memories are like a warm sunny day. We wrap ourselves in them, close our eyes and are transported back to that wonderful time. I can still remember being in a boat in the middle of the river with daddy, fishing and talking. He had me fishing from the age of 3 and our quiet time I remember the best. We would go on to have many quiet times in the future, but fishing together was the beginning of our foundation. I’m talking back in the 1960’s, the early years, and we had a small johnboat, so when it rained we held up an umbrella, laughed and waited for the rain to stop. Now that’s a warm, fuzzy picture I carry with me all the time. I remember a few years’ later mom & dad bought a real boat. When dad & me went fishing and I got tired, he always had life jackets set out like a mini cot in the bow of the boat for me. Even now I fall asleep when I hear the water lapping the sides of a boat. No matter what kind of day I have in a boat, thanks to dad it’s always a great one.

My mother was always the sensitive one, worrying like a mother hen over her children. When I got sick, and they thought I needed to go to the doctor or hospital it was daddywho came to talk to me. I knew it was from the two of them, but this is when I turned to daddy, when there was something medical I needed to talk about. As I got older I would talk to them both, but daddy I remember always holding my hand and calmly talking me through. Mom was the clean up crew. She’d hold me on her lap, rub my arm and calm me until I fell asleep. Another fond memory. One instance in particular, I remember, I had to miss Vacation Bible School because I started coughing up blood. At the time we had no idea what the cause was and wouldn’t find out until many years later. I was lying on the couch; everyone was keeping an eye on the baby of the family! Daddy came up to me, held me and started talking about going to the doctor. He thought it might be appendicitis. Even though I was maybe 5 or 6 he talked to me as if I were an adult and had a say in my care. This is a positive foundation that has stayed with me. He helped me see, calmly that something needed to be done and off we went to the doctor. He knew from my earlier years I had what could be called “white coat syndrome” and did all possible to avoid anyone in the medical field. As long as daddy was there I knew subconsciously I’d be ok. Now that he has so recently left us, I find myself wondering how I’m going to make it through the next procedure. I know in my heart he’s with me, he’s already let me know, but I really miss his presence, his smile, and his positive outlook. I draw on the strengths he instilled in me and the confidence he made sure I had in myself as a person when I feel I need him close.

My teen years were uneventful medically. I decided in the 11th grade I wanted to go into the medical field and started classes to decide which part. I enjoyed working at the hospital helping patients, it was so rewarding. It was in my senior year of school that I took the AFEES test for the armed forces, and signed up for Junior college. I graduated on June 3rd and was in college on the 8th. No need to waste time, I loved school and learning. In August of this same year I spoke to a recruiter. I had accumulated enough college credits and my score was high enough to go into the armed forces as a commissioned officer. Of course it would be the Navy that is the branch daddy was in during WWII. I wanted to go into Intelligence or Air Traffic control. In the late 70’s they didn’t allow females onboard ship, so that was out of the question, even if I decided to be a nurse. The more I considered it, the more appealing Intelligence seemed. I imagined myself in a long trench coat, sunglasses, secretly strolling around Europe. The hit show “Alias” had nothing on me. The show was probably written from my thoughts alone. I remember the day I went in for my entrance physical. As they say, “ It was a day that will live in infamy” My entire world came crumbling down in one simple step.

I made it through the physical until the chest x-ray. A problem was discovered with the pulmonary artery. Since my Afees scores were so high, they were sending me to a cardiologist for verification I could continue on to boot camp. I was concerned, but was taught not to worry unduly on things I can’t change. So I waited to hear the results before I came apart. My mom was with me for the visit. The cardiologist told us it was serious, and wouldn’t know more until a cardiac catheterization was done. Of course, I would not be able to join the Navy or have children. That is the exact way he told me, cold and seemingly uncaring. At 17, my entire world came apart. I was taken back to where my initial physical was done, they told me if there was anyway they could get me out of boot camp they would, but there was no way. So, through the clouds of gloom I walked out, and wondered what in the world I’d do next.

Through the next 13 years my parents were the rock I clung to when life’s obstacles got in the way. It was a time of trial, error, wheelchairs and oxygen, but they were with me through it all. They smiled, encouraged and kept me going. I don’t know how they did it. I never saw them worry, though now I know they did. How could they not, they were told I had a rare disease and probably wouldn’t live to see 20. Daddy always had a smile and a hug and always knew when I needed it most. They watched as I attempted college, moved out on my own, even moved away from the state. They let me experience it all and for that I am so thankful. I know they wanted to shelter me, and protect me from harm, they knew I was dying, but they found the strength to let me live my life no matter what. That is the best thing you can do for your children. Let them have their life, but be there to help pick up the pieces. No advice, no yelling, just positive reinforcement. There were a lot of pieces to pick up. I had the everyday obstacles to overcome as well as the medical ones too. Thank you mom and dad, if I had children I don’t know if I could be half the parents you’ve been.

When the doctor told me I had twelve months to live and needed to go on a transplant list I was living in Ft Lauderdale. My first phone call was to my oldest sister Beverly. I didn’t want to tell mom & dad over the phone and wanted to let someone in the family know for when I drove up to Jacksonville. Shortly after the phone call, she called back. She and another sister Frances were driving down the next day (Friday) to drive me back to Jax. My parents were not to be told I was coming up, they would wonder why I (the gypsy of the family) was not driving myself. They arrived and we had a lighthearted evening overshadowed with what I had to do, and started out the next day. To say we surprised my parents was an understatement. As soon as they saw me they knew I had news.

After the shock we began to plan. They knew my records were sent to University of Pittsburgh for consideration. I had to make arrangements with work, my apartment, etc. I would be moving back home at the age of 29. Not something I thought should happen, I always felt that being the last child they deserved their time alone when I turned 18 and made sure they got it. It was the least I could do for all they did for me over the years. Since daddy was close to retiring, he decided to take early retirement when my call came through and stay with me in Pittsburgh. The hospital recommended that one family member stay through the entire ordeal so the recipient would have someone they could talk to about it later if needed. Looking back on it now, I don’t know how Mom stayed behind and handled it all. She worked, came home and returned numerous phone calls, played receptionist to a constantly ringing phone and worried. She & daddy drove up for the initial surgery, but she flew back home, after I was out of intensive care. How she found the strength to leave amazes me to this day. She is one of the strongest women I know. Daddy had a different job. He watched me fight to make it. When I was in and out of a rejection coma and the doctor told him prayers were all that was keeping me here, he prayed, and stressed whether to tell mom. He decided not to tell her, and wait. His unshakable faith in God saw him through. In three days I was awake and my new lungs were functioning at 100%.

Even though I spent the time in the hospital, I remember the time fondly. The first time I had a bronch and was craving decent food daddy brought me the biggest order of pancakes and sausage I’d ever seen. Each day he brought me an orange-which we shared and some popcorn. During my second lung transplant, both parents stayed with me at transplant housing in Gainesville and the tradition of sharing an orange carried over. Dad would slice it and we’d all watch TV and eat it. The five weeks in Pittsburgh helped me see just how unshakable daddy’s faith really was. He was always positive no matter what and did all he could to make sure I stayed that way too. The nurses put 2 recliners in my room, one for me and one for daddy. Sometimes I think they liked him being there the best. They would laugh when they saw both of us, our feet propped up, sleeping in our chairs with the TV on. When I was released to come home, we decided to drive instead of fly. I was concerned since we were in the middle of flu season and I was immuno-compromised. The doctor said ok so long as we stopped regularly and I walked. They didn’t want any blood clots forming from inactivity. Mom flew up and it was like one of our vacations we took together all over again. Except with the extra stops for walking.

The next 8 years passed quickly. I had as much of a normal life as a transplant recipient can. Trips to UPMC, took early out from the airline, moved to Orlando to be on the opening team of Disney Cruise Line, things were moving right along. Unfortunately so was chronic rejection. I noticed I was having trouble walking and talking at the same time, a warning sign. What followed was a nightmare. The last thing a recipient wants to hear is those two little words –chronic rejection. It feels like a death sentence all over again. The wind is crushed from your sail in seconds. I had to plan again, and tell my parents again. I’d bought a house in Lakeland, so the next 3 years I remember vividly. Not so nice, but I held onto the positive foundation from daddy and read the book of Job a lot during this time. Bell South loved my long distance calls to my parents. I called just to hear their voice and lift me up. I needed to piggy back my emotions from them to keep me positive. They obliged and even made many trips to see me.

Much of this time they didn’t see what I had to endure to survive. I felt I’d hurt them enough and tried to keep as much of the horror as possible from them. I’d tell them about it after everything was ok. I endured iv’s, hospital visits, still trying to work full-time and go to college full-time as well as a pulmonary rehabilitation exercise program. I lost 60 pounds through it all, was diagnosed as steroid induced diabetic and wondered if I’d make it to another transplant. It was at this time I was listed with Gainesville. No other center wanted to do another transplant for me. This was the emotional chasm that almost destroyed me. Hearing all these centers tell me no, when they are supposed to save lives. My thesis in college reflected all my anger during this time and was directed to these centers. This was the only way I knew to release the negative emotion building up  inside me. Shands at Gainesville restored my faith in the medical field and gave me a comfort zone stronger than any other hospital I’d been to.

I finally had to call my parents when I was rushed to the hospital and the doctor told me I needed to decide on whether to go on a respirator or die comfortably on morphine. I didn’t think it was that bad, but then again I wasn’t at Shands either. Mom and daddy were volunteering at the Lions Club making a spaghetti dinner, so I called a sister and asked if she’d let them know I needed to talk to them. The next day my room was filled with family. I needed to know they were all right with my decision, after so many years of fighting the thought of dying comfortably was so appealing. However, I couldn’t let daddy down. I heard him mention to mom that he still saw a spark of the fighter in me, and knew they were holding out for a miracle. I decided to go for the respirator, was moved to ICU and waited through the night. His miracle happened, I didn’t need the respirator and was sent home 2 days later. I immediately made a trip to Shands to discuss what I needed to put in an advanced directive. That night at 3:00 am they got another miracle. We were home and my call came through. We drove back to Gainesville and I got my single left lung transplant.

It was about seven months after this that dad began to show signs of Alzheimer’s. The thought that this man, who has given so much, should have to endure this was unthinkable. I’ve always called him “Mr. Volunteer” and credit my helping others like I do from watching him all my life. We watched him deteriorate for two years; it was so rapid we barely had time to adjust. It hit my mother the hardest. She had to watch each day as he struggled to walk, form sentences and the final days in the nursing home. She just couldn’t lift him anymore, being a small petite woman herself. I still saw the daddy I’ve always known. Living my life disabled taught me a lot, the first was that daddy was still a person and would be treated as such. It was my turn to give something back to him on my visits. I called regularly to keep mom upbeat, but the visits were for dad. In the last 6 months of his life, I had a few obstacles of my own. I was treated for rejection and was waiting for a kidney transplant, hoping for living donor. I was told the wait could be five years.

I couldn’t talk to dad about all this anymore, so I drew on what he’d given me all these years. I didn’t want to burden mom, she was under enough pressure. I did want her to know that I understood, and they were here with me even if not physically. I visited them for a week, what was to be my last precious moments with daddy. After I got home, two days later I got a call from the kidney transplant program, they had a kidney for me! I couldn’t believe it, it was only six months of waiting. I called mom, hoping she could find time to let everyone know. I got out of the hospital one week later on Thursday and daddy went in on that Friday. From the hospital he went to a nursing home. I got daily reports from my sisters and stressed if I’d be able to see him again. I was so freshly out of a transplant I couldn’t go visit him in a nursing home yet. I finally got the ok at 3 weeks out with a few restrictions and we drove up. We got there late Wednesday and he passed away 12 AM on Friday June 3,2005. I got to see him, but he was semi-comatose so I’ll never know if he knew I was there. I know I was and I still drew strength from the man that is my daddy.

I had to leave early on Friday for an appointment a shands. My kidney wasn’t functioning they way they hoped and they wanted to admit me. It was then that the loss of daddy hit me. He wasn’t here to tell me, it was going to be ok. If I were admitted how would I go to his funeral and say goodbye? The loss was so great I cannot describe it. I had to be strong so mom wouldn’t hear all this over the phone. I was also scared to death of having a kidney biopsy and the thought was more than I could endure. Mom knew this too. At the last minute, they discovered they couldn’t do the biopsy and I could go home. I called mom and we both said at the same time “thanks dad”, he was still watching out for me.

Even though my daddy has only been gone a little more than a week, I’ve learned that the best tribute I can give to this man for all he’s taught me is to keep him forever in my heart. When something bad happens I touch my heart and remember him, his strengths and when something good happens I touch my heart and say “thank you daddy”.  I have a large jar of "pennies from heaven" too, and know that silver lining behind the clouds is Daddy telling me he's still there watching over me.

I miss him and need him more with each passing year.

I am posting this today July 3,2010 because today my daddy would have been 85 years old. We now believe it was not Alzheimers.

Through a breaking heart and tear filled eyes this is for the most wonderful daddy in the world.
I love you daddy... Happy Birthday..

Lifes little inconsistencies

  I've pondered a few different topics to post, and after this afternoon this seemed the craziest one -so here I go.
My pharmacy had put in for me to receive the Levemir insulin pen since I am currently covered in lovely shades of black & blue. (If they grew together I might have a nice tan eventually). This and two other facts:
1.  I seem to have a terrible cas of "dropsy" when I hold the insulin bottle. My pharmacist is great with "just come on up and I'll have you another bottle ready". He seems to know my panic voice, each time.
2.  I'm running out of places to inject that long needle (to me anyway) syringe. "Count to ten & push" Wait "Let's try fifteen"
Sunday I hit a bit of muscle and bled-plus the pain and itch were no fun either.

Well, he got the approval for the pens so I went to pick them up.It seems though my doctor forgot to order a prescription for the needles. So I had to return today.
Now here's the tricky part... My Part D provider approved the pens BUT not the needles.
Ok so how do they expect me to take insulin? Drink it?
I paid for the needles, not wanting to make another trip and left. I've tried the auto-refill and kept getting email notifications every other day for different prescriptions. Auto refill does not work for someone like me with so many Rx's and dropped off at different times.

 I called my Part D Provider and the nice young lady couldn't understand why either. She kept naming of syringes they covered but no needles. I calmly stated those were syringes not the needles, do you know the difference? She suggested that Medicare Part B covered the needles as they were diabetic supplies. I replied no, their idea of supplies is a glucometer and test strips.
I asked why they would give me insulin pens and no needles? not sure.

Well, after 25 minutes on and off hold it was discovered that they do not cover the "nano" smallest and most comfortable pen needle on the market.

To make a long story short:  When it is not them doing the daily injections-comfort and bruises do not matter.

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Chronic Rejection

        For some reason unknown to me, this topic has been on my mind lately. I certainly hope it is not a harbinger of the doom to come. I can honestly say I have endured chronic rejection with my first double lung transplant, and have NO desire to be tested in this way again. I decided to do a quick search on the topic, with respect to lungs, and found numerous medical updates on the net, literally filled with doom and gloom.
Clinical aspects aside, not one touched on what a patient actually feels at this time in their life.
        Chronic rejection in a lung transplant feels like a death sentence-mentally, physically and yes emotionally. Many times I described it just like that.. Before I actually knew the true meaning of those words. I can still vividly remember the day I was told. I was at work when the call came in. Thankfully, someone saw my expression and stood behind my chair. If not there would have been the sight of me & the chair gliding across the room.. I fell into my chair speechless, mind totally blank unable to process the words. What now? I knew I was short of breath, but this? The feeling is similar to being first diagnosed. That helpless feeling of not knowing what to do. Knowing in my subconscious what was about to happen in my future-or lack of.
          To be totally honest, I was woefully unprepared for the next few years of my life. Internet searches tell of the morbidity rate in chronic lung transplant rejection, so this was something else to add to my thoughts. At 40 years old, one rarely thinks of "final arrangements". This I had to do because it was the last thing I wanted my parents to worry about afterwards. They had watched me struggle and survive enough. I made plans for a month long visit to UPMC for treatment and a re-eval for possibly listing for another transplant.  To say the least, chronic rejection treatments back then left alot to be desired.  I remember having a death grip on the bed rails, screaming with pain in my knees, while the wonderful nurses ran for something to knock me out. And then just when we thought I'd crossed the hurdle- the serum sickness started... Oh what a joy... I'll leave that descruption to your imagination. Believe me, it was not pretty.  I finally left UPMC in a wheelchair, my legs too weak due to the knew pain. I was also denied a relist, due to kidney function.
           I geared up to find a center who would consider me for a relist along with all the other issues I was tackling. I found one. A wonderful center, and I still go there today. UF is MY comfort zone. Back to the story.  My knees were so weak, if I sat on the floor-forget getting up. I had to crawl to a chair and using my arms lift myself up into the chair, in order to eventually stand. I actually got stuck in the bath tub...alone.. until I figured a way to gt myself out. It's funny now, but believe me, not when you're freezing  and pruning at the same time.  I fell in the balcony to my apartment and couldn't get up. I waited until someone came home from work, sunburnt and almost out of oxygen before I could get help. Sweeping floors was an all day affair, for one room only. I had a bar stool and my broom. I'd sweep 2 tiles and sit to catch my breath. Move the chair, sweep...you get the picture. Literally an all day affair. I had lost so much weight trying to breathe, a light wind almost blew me over. Thank goodness Mom was there at the time to catch me.

        I would sit outside each morning watching the sunrise, drinking my cup of coffee and wonder how many of those beautiful scenes I'd enjoy. I told everyone that God was whispering through the palm trees, it wasn't the wind blowing. I reveled in all the scenes I could. This is what kept me going mentally.
        UF kept me going physically. I had an exercise program that would make an olympian jealous. Well, you get the idea. I went to rehab 3 days a week, had (still have) a multi station gym and treadmill at home. On weekends I would walk the mall. I knew exactly where each bench was to sit down and catch my breath. Every clinic vist, every three months my physical progress was checked. I had to be able to leg press 80% of my body weight. When I finished I was actually lifting 10 pounds more than my body weight.
Psychologically, I was told to stop doing my spirometry at home. Watching those numbers drop daily is so defeating. I already knew what was happening. This was showing me the undeniable proof. Thanks to the transplant team at UF I've learned that if I can exercise when I'm dying and on oxygen, I can do it when I'm not. 
        I remember many times wondering why I ever had the first transplant at all. Surely my original symptoms were nothing like this. But those thoughts have to be stopped. My original disease had not progressed that far, soI couldn't realistically say this. Plus, I had enjoyed 9 years of life that I would never have had. I competed in the 1994 US Transplant Games, hiked El Yunque in Puerto Rico, and so many other wonderful things I would have only imagined if I had not taken the chance on a lung transplant. I went back to work, attained goals and dreams all through lung transplantation. I remember saying after my first transplant that I'd never have a second. How wrong I was. I would not trade one part of my life to go back and change my mind.Good, bad, ugly, or otherwise.
         My biggest fear is that I will once again hear those life altering words: You have chronic rejection.
I know the outcome, but would rather spend my time not thinking about it and living my life.
To my friends facing chronic rejection:  I feel your pain, I remember the emotions. I'm here for you.
And I'm praying for you to desperately get the chance. I'm also promoting organ donation and research to help us all.