Sooner Than Expected

1:30AM and the morning person is up earlier than she'd like to be.

One of the protocols at my transplant center is if your temperature is 100 or above they must be called.  As I looked at the thermometer yesterday in trepidation I knew what I had to do. The cough is wreaking havoc and the temperature is up, sinking feeling in the pit of my stomach I picked up the phone.

It's times like this I'm quickly reminded I am not a normal healthy person,  something a chronically ill or physically disabled person longs to be with every fiber of their being.  In day to day life, I can sometimes push it to the back of my memory,  to be hidden far away from reality.

During the call I was given the choice of coming to the hospital or starting antibiotics again.  With it being a 4 hr drive one way, I seriously did not feel well enough to drive and Larry was at work. I chose the antibiotics,  though a hospital stay and giving this Pseudomonas a strong kick to the curb is appealing.  So I waited all day, not that I felt like going anywhere, meds delivered, nurse accessed my port -here I go again.

With this happening more frequently I can't help but wonder if this is the start of "the long painful road home ". I vividly remember the first time I started that journey.  Many times I said, " chronic rejection was leagues worse than my original disease. Not that I have chronic rejection again, but one bad lung can make life miserable at times. With PPH I was short of breath, now I can't stop this painful deep cough.  I'm reminded of a scene in "The YaYa Sisterhood" where a line is " you made me think I was gonna cough up a lung " I was offended by it and they way they parodied those on oxygen,  but it's the one line I seem to remember.


I still have to make that long drive on Monday,  with an overnight bag just in case. (I haven't had to do that in 8 years!)
Fingers crossed,  no admission.
Drat! I forgot to ask if I could take Tylenol!

Blessed sleep

Remember I mentioned previously how refreshing a good nights sleep is? You wake up in the morning , stretch, and happily breathe in the start of a new day.
I've had one week without that dastardly cough waking me repeatedly during the night.  The cough suppressants by the bed have been happily ignored!  One week in almost 2 years ! Two pillows sit on the floor at night, when they used to join 2 friends under my head, forcing me to sleep upright,  if I wanted to sleep at all.
Glancing at the clock and realizing you seriously slept is a beautiful thing.

Well,  the pillows have gotten lonely and had clandestine meeting s with those cough drops. They will soon be back in their rightful places.  My cough returned with a vengeance this morning! 5AM I bolted straight up in bed (vertigo hit too) coughing to the point of choking.  Like an excited friend returning from the vacation of a lifetime,  it has not stopped speaking since .

This does give me serious thought.  Were those IV antibiotics worth the cost ? Was it worth me taking a nose dive into that Black Hole known as the coverage gap? My checkbook loudly shouts NO! But my throat, chest and mind are nodding a vigorous Oh Hell Yeah!

7 days of blissful sleep is well.......heavenly.
I knew 22 years ago this could happen, but would you trade that many years of life on a maybe?  Me neither.  Being chronically ill means your health is front and center a full-time job. We can take breaks & mini vacations,  but will always return to our job.


Yawning,  I lean back in my recliner and hope to get a 20 minute power nap - game on     me vs cough.

Journey Part One

The exercise has been going well.  Sunday I opted for walking around the  Sharks Tooth Festival instead of the treadmill.  Granted the cinnamon glazed, strawberry topped funnel cake did nothing for my cause :) But was it ever good !

I'm also noticing a slight increase in my energy level too which is a Blessing. Oh! and I finally tackled the multi-station gym ! Not much, just 2 sets of upper body weights, and I came to another realization.  I am weak.  The time for getting serious has long been waiting.

I know the strength training is crucial.  Especially since my transplant cocktail includes the dreaded Prednisone!  (Holds fingers in the shape of a cross and gives a hiss)  Prednisone has many medical uses, helping prevent organ rejection is a great reason to keep it around. The side effects of long term use are no walk in the park either though.  It loves to slowly chip away at bones and muscle,  so strength training is important.  My doctor once said "one week missed exercising for me was similar to a healthy person missing 2 months " !! *groans & hangs head*  I have a lot of catching up to do.
I still firmly believe that since Prednisone has been around since the dawn of time they could've made it taste better!  Have you ever had that tiny pill stick to your tongue?  Or worse, the roof of your mouth?  OMG! Nothing gets rid of that taste!

Since my IV stopped Saturday my cough is slowly returning as I knew it would. My vicious circle of survival :)  but now the vertigo has reared her wavy head too. This morning I sat on the bed as the room spun a few times and considered calling out "Auntie Em!" Toto!"  I'll up my water intake and see if it helps.  If not, at least I won't be dehydrated-but possibly feel like the Titanic.  ;)

Errands today and orders to finish and water to drink, my day is planned.   Hope yours is happy and productive too.

A Slow Journey

As a kid I always heard you have to put one foot in front of the other before you can get anywhere.  Meaning you must take that first step.

Having mentally psyched myself up all day Friday to hop on that fiery steed (treadmill) & ride into battle,  I did just that after the evening walk with the boys. Dreading the plantar fasceitis pain in the morning I was determined to try again.  Plus I was hoping to regain that blissful sleep I longed for from released endorphins.

Nook ready I began my walk. Was this only 2.5 mph? I was walking that post transplant.  Wow! I realized my endurance and stamina had taken a seriously long vacation and left me to pick up the pieces.  Armed with a good book, I walked 30 minutes.  All the while reminding myself I used to hit 90 and reset the timer.

I jumped the first hurdle ! Now to continue!  Day 2 I rode my stationary bike, which is like taking a spear to the knees, but I jumped that too !  I took my IV out yesterday so now I'm looking at the multi-station gym with squinty eyes hoping to scare it  into submission.

It's taken a longtime to get here, so the climb out will be too.  But, to keep honoring my donors and their families,  it is a mental must for me.

Finding Myself

I am once again sitting upright in my recliner (since 2AM) with the boys trying to yet again stop coughing. My lack of sleep does give me a bit of thinking time.

Looking back I seem to have left "me" somewhere.  I can just see myself at a roadside rest stop patiently waiting for me to come to the rescue.

I always had such determination, where has it gone ? My health has always been my health#1priority, but now I'm just tired.

I realize it's a culmination of events, and finding a way to jump the hurdle.  2002 was my 2nd lung transplant, giving me Blessed freedom from oxygen.  But I came home from the hospital knowing I would need a new kidney.
November 2004 I got the fistula placed in my upper right arm in case of dialysis (which was looming on the horizon. ). Taking 6 months to heal and "cure" put a dent in my exercise routine.
Just as it healed, May 2005 I got a new kidney!

My right abdomen groaned with each step.... no treadmill..
Many of my meds to protect my kidneys were now stopped, which created that heart disease rearing to be noticed. I got a pacemaker. No lifting, exercising,  etc for awhile. Then came SVT ....and heart ablation.  Again no exercise.
What followed through the years was a series of at home IV infusions for Pseudomonas in my right (old transplant) lung, ending with spending 9 months taking Levacquin 750 mg & Keflex 500 mg daily.  Both causing insomnia to the point I thought I was dreaming I was awake !

2012 was a bad year. Picc line for more antibiotics, plus more Levacquin (wonder if I glow neon in the dark yet ). Then a port to make IV's easier. And just when I thought it was now MY time here comes Keratoacanthoma and 3 months wait to have it removed. That is healed and in the past-so guess what is visiting now?

Most of my days are spent in a routine.
1. drink a bottle of water fast and hug the porcelain throne hoping to bring all this gunk out of my right lung, so I don't cough continually all day long.  And it's one of these gut wrenching coughs, causing teary eyes and abdonimal muscle cramps.
If I don't get it loose and away, it blocks my airways and at times making me gasp for air and choke. It doesn't help my biggest fear is suffocating. Not a good feeling to wake from a nice, peaceful REM sleep to gasping the rest of the night.

The loss of my lil Dibs has created another chasm to jump. My lil guy has been with me through it all, on my lap or laying next to me.  8 weeks and it feels like forever. I tear up just trying to type his name :(

So here I sit, close to 5AM now,  thinking how to reclaim Me again..
My middle man cuddled up close (a first, making me smile), I take a sip of lukewarm coffee, 30 minutes and my morning IV will be ready to start.  I 'll trudge to the counter, holding my left side-diverticulitis has chosen to pay me a visit, grab the syringes and IV  and start my day.

Keratoacanthoma part 2

I finally got it removed and am stitched quite well.

Once I got in to see the Plastic Surgeon, he took one look and said "This has to come off now"   Yeah no kidding??   By then, the only way I can describe it is a medium sized mushroom cap, only disgusting looking. I kept it covered  so my skin was already red and raw from the adhesive for 3 months.

I did however get creative with ways to wear a bandage :)

Here is the end result of the surgery:

I had no idea a medium mushroom cap would create such a spectacle !  When I left after surgery I was taped from one shoulder to the other and half way up my neck !  Sure makes looking  to the side difficult, I still am unable to look up for eye drops or mouthwash. I dreaded removing the outer bandage the next day- but so wanted a shower ! He said the skin will eventually stretch to accommodate.

He also mentioned having to pull skin down from my neck and up from my chest to close the incision. I believe it , especially when I try to move. A few of the sutures were removed this week, but the anchor sutures have to wait another 2 more. It has made putting on a shirt a new experience, as well as a shirt has to button down the front so the scar isn't irritated. I honestly don't want others to have to see it, but oh well.

I'm dreaming of the day when I can again sleep on my side (the back side gets sore) and not itch !

Moral to the story: If you have a whitehead appear mysteriously overnight- GET it checked out !!

Keratoacanthoma

 What a long word to try an pronounce !
This is my latest diagnosis from the Dermatologist.  A few months ago I had a small "whitehead" appear on the left side of my chest.  Being just above where you'd place your hand to say the Pledge of Allegiance and very visible, I did what anyone would do. I popped it.  It bled, and bled, and bled.
So it was covered with a band-aid for another few weeks.  Yes, I did take it off and change it nightly.


While away for the Christmas holiday, as I was changing the bandage I looked in horror ! This small unnoticeable  whitehead (not to me) was now the size of a nickel and it looked infected. !  With my medical history and not healing well this past year I began to worry- plus it itches like hell . I kept it covered and out of the sun, and quickly made an appointment to see the Dermatologist when I got home.

 My worst fears were realized. It was not infected, and she proceeded to rattle off that name. She removed the top for biopsy and referred me to a Plastic Surgeon. Her reasoning being that if it isn't removed completely it will get larger and spread. Oh great ! Just what I always wanted on my chest ...
Plus with my system immuno -compromised it's best to err on the side of caution.

My appointment with her was 2 weeks ago and it is now the size of a quarter and distinctly raised above the skin. Now to you a nickel or quarter may not be large.  Put one on your chest and look in a mirror.  See what I mean?

From what I've read this normally doesn't affect the chest area, so I'm curious if all my x-rays over the years for my lung transplants may have increased the possibilities in me.

My first appointment with the Plastic Surgeon isn't until the middle of February, so I sit and wait and wonder how large it will be by then.. Oh, and how in the heck will it be removed.

Updates and Decisions

well.. the picc line was taken out and a Port now rests (cattywompus) on the right side of my chest.  I have to get it flushed monthly. Our great Medicare system does not cover it, so my cost is $90 .
In anger I researched this and found the needle sells to these companies for $5.60  each.. Makes ya sick doesn't it?

Then  with the hemorrhage in  my left eye getting worse, I needed a shot to try and save my vision. When the Retina Specialist told me my co-pay for the shot was $493 I broke down.. Ya mean I have to pay almost $500 for someone to stick a needle in my eye ???  I opted for the experimental version at $36 since I was looking at a possible shot every 6 weeks.. Oh yeah and I was in that wonderful Black Hole they call the coverage gap.. Already hitting $500-600 a month on my med copays there.

I looked like a creature straight from a Halloween Horror Show, but it worked. My vision is still a little blurred but doable with my glasses.  Whew!

In December Shands Hospital showed my the latest x-ray of my lungs. The right side is one grey area- but you can still see a lung on the left. I was told I would have this horrid cough for the remainder of my life - a side effect of Bronchiolitis Obliterans and scar tissue.   Plus that grey right lung is gathering mucus and Pseudomonas, similar to a person with CF..

I now have a recumbent exercise bike (from the best hubby in the world) and am trying to regain my strength and endurance. I still try the treadmill- but the feet hurt so bad for the next few days it almost makes it not worth it.

I have lost my will and determination with this past year of illness. I want to reclaim it. I know without it, I am doomed. First will have to be my energy.  I remember days where I would spend 2-3 hours on a treadmill so I could stay on the list for a lung transplant. And that was while on oxygen!  I need to find that person again !
I need to reclaim me !

New Hardware

I wondered a few days ago just how much hardware a body can handle before the software  gives up.


This is a photo of my morning and evening routine:

On the left  you see the IV meds I take and on the right the 2 nebulizer treatments .

Now this may not seem like much to you, however upon waking my routine is weight (yuck), blood pressure, temperature, heart rate, pft's, and blood sugar and logging it all in on an Excel spreadsheet. Then 

Then round one of meds, breakfast, morning walk with boys, then round 2 of meds- then all the above before getting ready for work.

This is the picc line for the IV's  that I wrap after the treatment so it  isn't seen at work:

Yeah it hurt and itches like hell, but it's something I need for now. On Friday it comes out and I get a port in my upper right shoulder. Left is already full -a Pacemaker is strategically parked there. They told me the port would hurt about as much as the pacer being put in.. great.. SO that's why the Rx of Oxy..

Along with all this is the emotional  ( I dread to consider the financial) aspect too. That is the part not many see. I'm still remaining positive and refuse any negativity in my life.

And thanks to wonderful -fantabulous friends on FaceBook I'm making it with laughter!

This post was starting out vastly different, then I spoke to a few of those wonderful friends and they had me laughing like a banshee!  

Moral to the story:

The software can handle the hardware as long as it has wonderful caring friends and family.

Have you told your friends how special they are today??

Maybe you should

Listen to those "bad vibes"

    My bad feeling about Larry leaving for work came true.. And darned if I wasn't reading a book about just that- trusting in those little vibes you get.
After a high temperature (100.6) on Tuesday I was told to  be in clinic on Wednesday and to bring a bag "just in case" . Well we recipients know what that means.. Your happy butt will be admitted and you get 3 square meals ( if you could call it that) you don't have to prepare.  I woke up at 3:30AM and hit the road. My first appointment was at 8:00 for an x-ray. Then the fun began:  6 minute walk, pulmonary function tests ( that wreaked havoc on my lungs with this cough), Dr Baz and then the news- I was to get a port for IV Cefipime. Everything is showing normal so all they can figure is the Pseudomonas is trying to return with a vengeance. Though in thinking about this, I remember Pseudomonas as leaving one with the taste  of grapes in their mouth. This tastes nothing like that ! trust me


 Finally a port ! It has taken me 10 years to convince Dr Baz a port is better than a picc line any day!  Which also means no more 8 hour round trips to Shands for a picc line insertion. So it is then 11:00 and I think lunch since it could be 3-4 hours before they get to me.. WRONG~! nothing to eat or drink- gee thanks..  And he hands me a prescription for Oxycodone for pain. I thought you said this wouldn't hurt? Oh no more than your pacemaker did... Well that hurt like hell buster!  

  So I check in and decide to get the prescription filled so I don't have to on my way home. I give them my cell number only to discover  I'm on the last bar and in the red ! great and 4 hours to drive home!  I got out to 8 voice mails and cringed. Plug the phone in to charge, find a parking lot and clear them all.  I sat in a McDonalds parking lot in the rain on the phone- starving.

I got a picc line again...   :(  I have to be fever free for 24 hours to get a port -plus someone needs to druve me home after anesthesia.. Anesthesia? you call fentanyl and versed anesthesia ? I call those bronch happy  drugs.. I drive home after bronchs all the time. Well, they don't know that .. So it is a picc line.  and it itches like a MADMAN !

 So I now get Cefipime twice a day via IV and will start Colistin on Monday- inhaled 30 days on and 30 days off.. This is to be used as a preventative to keep "whatever" at bay.  I am too exhausted and tired to even consider what this will do to the part D  "black hole" I am about to sink into.. I only know if you hear a loud scream in a few months you'll know I got blind sighted with the bills.

Since Colistin is not an approved Medicare drug, I shudder to think of its cost.  But I'm in this for the long haul, and if I can't hit the ground running each morning, I'll just be thankful I can wake up and hit the ground at all.

On a more serious note, my temperature elevated to 101.6 on Thursday night. I figure after the picc insertion,  4 hour drive through thunderstorms, and getting home at 9PM- what body wouldn't rebel.  Shands thought differently and wanted me to drive back to be admitted. I simply did not have it in me.  I pleaded for 2 Tylenol and to sleep. Yes we must get permission to take Tylenol when running a temperature.   They let me !  I woke at 7AM, completely out of character for me and felt like I had just slept the sleep of the dead!  Never have I slept that much or that soundly!

I'm still running a slight temp (shhh don;t tell anyone ), the nebulizer has been delivered, and on June 22nd I will once again make that drive to Shands. The picc line will be removed and a port inserted.  I will be in continual healing mode this summer  :) But I will be here for the summer (and beyond)  THAT is the key.;

Time for an IV!!!

"STOP the world I want off ! "

     Have you ever had one of those days where you want to throw your hands up and just scream.. Stop the world I want off.. Or for you Trekkies -Beam me up Scotty!

  I seem to be having a year of those days.. Now this is not the rants and raves of a silly LOL (little old lady), I too have those times when I feel overwhelmed with health issues and trepidation of what is to come.
My year started with the Retinal Occlusion and the news that my vision would never return to normal in my left eye. Then on to my little boy (DB) and his heart lung issues and fearing I was losing him a few weeks ago.
     For those of you reading my blog for the first time DB is one of my furry wet-nosed four legged boys. The alpha male of the household - yes all 10 pounds of him. And affectionately called Dibs since he is a smaller version of his 18 pound brother.
     Next was a clinic visit to Shands and the news that my lung function and kidney function were down. I knew I couldn't ride that "all healthy and good" gravy train forever, but both?? The clinic visited resulted in a return trip for a bronchoscopy and cleaning all that "gunk" out of my lungs. To date nothing has grown in the samples,  to my dismay. My cough left for a few weeks and just when I thought it safe to breathe again -Wham ! it returned with a vengeance.  I mean drinking a bottle of water really fast and hanging over the porcelain throne to bring it all up. Daily... You see all that "gunk" likes to stick around and try to take up residence in my lungs- resulting in a high temperature and Levacquin for 5 days. Which is where I stand now. One more day left !
I have yet to decided which taste is worse: Prednisone sticking to the roof of your mouth , requiring  that appendage with all those taste buds to jar it loose- or that metallic taste from Levacquin that NOTHING will remove. That plus the insomnia might put good ole Lev right on top.
    For the last 3 weeks I've had dizziness for no apparent reason. I mean if I'm gonna lie down and the room spin- why can't I have the alcohol to make it worthwhile right?? It doesn't seem to happen when I bend down like "normal" folks- but after my walks - note to self- grabbing a palm frond to steady yourself is about as good  as holding a flag pole in a thunderstorm.Now comes a 30-day event monitor.. Great ! I have negative feelings regarding heart monitors- stemming from a bad experience years ago. Plus with this happening daily should my Dr. really want me to wait and then wait again for it to be sent away for reading??
     Most of this stems from the fact we were just told my husband is leaving Friday for an extended stay in New England for work.. Yes I am strong! Yes I can be fearless! But I'd be lying if I didn't admit that being alone with this heart issue is scary.

Please don't get me wrong. I am not angry. I am frustrated. A good phrase is Sick & tired of being sick & tired.  I'm also concerned that this may be that time where I once again have to suck it up and realize I'm on borrowed time. But honestly, I'd rather not face that news alone.

Cinco De Mayo

     To many of you Cinco de Mayo refers to the Commemoration of the Mexican Army's 1862 victory over the French in the Battle of Puebla in the Franco-Mexican War.


     To me it does too, however I have a huge celebration as well. On this day in 2005 (yes o5-05-05) I received my third chance at a new life. I received a kidney transplant. 


     I am to this day amazed at how little we think of our kidneys, and how they bring everything into working order  in these complex machines we call our bodies. I knew I was anemic and had high blood pressure because of the the insufficiency of my kidneys. But to see the day after transplant my blood pressure reading drop to a whopping 95/64 with no meds from barely controlled 120/92 (on a good day) while taking 2 different medications is phenomenal.. I mean how can this small organ, smaller than my fist accomplish such a huge feat?


     I still have my 3 page list of foods I had to avoid. No they were not the fast foods we hear about today. These were ones I loved: bananas, oranges, broccoli, dairy, etc. I used to  joke that anything that was naturally good and colorful was b-a-d for me. I held out to the very last with my Diet Coke. Can't have caramel colored soft drinks either, too much phosphorus. I only drank them when I had an upset stomach. That too was nixed in the end.


     I no longer have my "Popeye" arm, where the fistula was placed. It was removed exactly 5 years to the day after it was put in. It had formed a clot due to non-use. I smiled to think non-use. Wow, first time I could actually say I had a surgical procedure done as a pre-cautionary  that was exactly that! Now all that remains is a long scar from under my arm-pit to just below my wrist. A reminder to take care of that lone kidney I received from Suzie my sweet donor. And the wonderful Donor Dad who agreed to let me receive it.


Today is melancholy and yet happy. Today is my celebration, while  Donor Dad is remembering his little girl he lost on May 3, 2005 her birthday. You too can honor my donor Suzie, please visit my page  and see her picture and read a little about her too. We have alot of similarities in our lives.


Are you an Organ Donor ? The life you could save might be one you love.. ♥


Recycle yourself.. Become an Organ and Tissue Donor 

Another Day At The Office

I've been noticing this grey spot right in the center of my vision in my left eye. I didn't think much about it since my eye Dr. mentioned I had floaters.  I knew when my atrial fib was acting up sometimes the vision in that eye got a sort of aura when I tried to look at things.

Well since it's been annoying me for a week, I went back to the Dr today.. And received not so good news.
It seems I have a Retinal Occlusion in that eye. So he checked the carotid arteries in my neck and all appeared normal. so he's guessing a possible blood clot broke loose and invariably settled in my eye.

Great... but just another medical issue to add to my "Medical Resume"  The good thing is that I can still see peripherally which means my eye is getting oxygen -just not enough at the moment. There is this annoying oval/egg shape dark spot direct center of my eye. Which may or may  not go away..

No, I'm not happy about it. But after all I've been through this is just another day at the office.. Tomorrow will be busier I'm sure once we get the Retinal specialist, my cardiologist and Shands in the picture.

Now to warn a few Dr's what to expect tomorrow!!

Today is the First Day of The Rest OF My Life

     How many times have we all said that ? A more apt question is: How many times have we actually understood the meaning of that sentence and carried it out?
     Every time I hear those words I wonder. Today I am 20 years old. Well , in all truthfulness it is the 20th anniversary of my first lung transplant- or my Lungiversary.
     On this day 20 years ago my life as I knew it changed forever!  I remember waking up in SICU on a respirator. Major panic! I had never been on a respirator before in my life, and honestly never considered this might happen to me. I remember after 3 days them attempting to remove the respirator, only to have my new lungs fill with fluid. Now I've always been the type you simply do NOT touch my nose! The nurse did try to prepare me for the placing of a tube down my nose into my lungs. To my defense  this was after little cooperation from her with regards to telling a person heavily medicated on pain meds to "hold your mask up so you get oxygen"  My addled mind kept trying to tele -communicate to her that I couldn't get the strap around my head. The rest is history. I woke up back on a respirator (most depressing day) and later was told - laughingly by my Dr. that as the nurse touched my nose with the tube, I punched her and tried to run away dragging machines and all. He said he had no idea that a person as sick as I was had that much strength.

      This was me on October 24, 1991. Not my best pre-birthday photo. But I got the best present anyone could ever ask for. I lived. I was so swollen from the Prednisone and massive amounts of immunosuppression that my family barely recognized me.  If you've never been intubated, believe me it is nothing like you see on the TV medical dramas. Either that or my drug induced foggy mind developed one horror story photo for me to remember the day they pulled that tube out. 

      After a few more days of trying to get my lungs to work, they removed this yet again. My Dr. sat on the edge of my bed calmly telling me that I may end up back here. Not everyone gets to stay out.  All the time I was thinking "Not me! No way! This fella has no idea who he's dealing with!"  I left and never looked back.

I later found out that my family was told the lungs I received had been badly damaged in the accident, but as my lungs were already removed and I was at the point of no return they put in the donated lungs. There was a strong chance I would be back on a respirator awaiting a re- transplant.   I knew I was a strong person, but I began to realize just how strong I truly was, mentally and emotionally.

     Yes there were pitfalls. I had a serious bout of rejection that I slept through (thankfully) . The Dr mentioned to my Daddy he may want to say an extra prayer because at that time it was all up to God. Thankfully He still considers me a work in progress with alot more work left to do here.  I did come out of that episode with my sat's at 100% and stayed that way.

     All I know of my donor was she was 34 years old, a white female, she died in a tragic accident, and we were a perfect match. It was all up to me to keep what she gave me so unselfishly  healthy and live my life as if I were dying. Every moment to the fullest!

So.. the next time you say, Today is the First Day of the Rest of MY Life will you live it differently?

October 22,1991

      It was on this day, 20 years ago I received a call that changed my life forever.

     The time was 11:00 PM. While not usually a night owl, I was awake. I was packing clothes for a much anticipated weekend trip to Orlando. Arrangements had already been made to have oxygen waiting at the hotel. I had been waiting for a lung transplant for 18 months.  Each passing day reminded me I was on borrowed time, after being given  12 months to live. I desperately needed time away from reality for awhile. Each day feeling myself get weaker and requiring more oxygen.

     I remember Mom calling me to the phone. It was my pre-transplant coordinator asking how I was feeling and if I wanted to make an out of town trip. My standard reply was, of course I'm leaving for Orlando. "Wouldn't you rather come to Pittsburgh?" " We have a pair of lungs for you." It was at this point I wanted to hope, drop to my knees and pray, but I knew to not get excited. I could get all the way there and it be a dry run. Meaning the lungs weren't viable after they got in to get them out of the donor.
     After hanging up the phone, I immediately called the Air Ambulance that was supposed to be on standby in Alabama only to find it was not in Alabama but in Texas. This simply would not do. After the pilots got in- the plane fueled and preflight done- the flight alone would be close to 2 -2 1/2 hours. This would put me over the time frame to receive a transplant. I only had a window of 4 hours to get the Pittsburgh, and be sitting for the go ahead from the retrieval team.  Thankfully UPMC had a plane sitting in Tampa that had just returned from taking a recipient back home. I called the original company to cancel and began to get suspicious, he did not need to know where my aircraft was coming from nor did he need the tail number of the plane.
        We arrived at the FBO ( private flight area) and began to wait. Suddenly 3 customs officials came walking in. I whispered they better not be after my damned plane!  They were! Seems they received an anonymous tip that this particular plane had not cleared customs after returning from the Virgin Islands. It had as it was sitting in Tampa. The trauma nurse and pilot both tried negotiating with customs to no avail. They were determined to break down ALL the machines I would need to keep me alive during the flight. The pilot offered to have one of them fly with us to Pittsburgh, tear everything apart upon landing and he would fly him home- we received a negative response to this suggestion too.
        I was slowly watching my chance at life slip through my fingers. I made a decision. I asked for a quarter. I went to the pay phone (yes there were still around) and called the local news station. I chose one that loves stories like this. I spoke with the news desk and mentioned it was a matter of life or death. When the gentleman asked who's I said mine! I told him customs would not release my air ambulance for me to receive a lung transplant and there was a slim chance I'd ever get a call again.  Within minutes, we heard over one of the customs officials radios "Who the hell called channel 4 !" They looked at us and I sweetly smiled, raising my hand and replied "Guilty"
     However it worked we were on our way! I must say that was the longest - most thought provoking flight of my life. Flying through the clouds and reflecting on my life. As we landed it was a rush to get me to the hospital. You see, I was supposed to be opened up and ready for new lungs at 5AM and we had just landed at 5AM.It was a mad dash in an ambulance!
 As we were awaiting for the official "go" I was sharing jokes with the anesthesiologist in the ER.

   Suddenly one of the physicians looked at me and asked " Are you ready?"  I replied " Is it a go ????" wide eyed and hopeful.. He smiled the most gorgeous smile ever - and said "It sure is"
And I was wheeled into the operating room on the biggest adventure of my life!

Never forget where you came from

     As this is the beginning of a very special week for me, I wanted to take a little time and reflect back on a few important times in my life.  My parents always said "Never forget where you came from, this is what shaped  your life".  So as I near a 20 year milestone with my first lung transplant, I wanted to share with you (never seen before on the web) a few photos over the next few days of how I came to be the person I am.

If  you look very closely at this photo, the person in the middle is me. I was in my late 20's .You may also notice that I was on oxygen, my feet using the canister as a foot stool.  In this photo I was already on the waiting list for a heart/ bi lateral lung transplant. I always wore my hair in a long braid because it kept getting tangled in the strap for my oxygen when I carried it.  I remember when I got all my hair cut off , because the thought of 3 months in a hospital with long hair wasn't appealing.  Can you believe no one noticed for a few days!  Everyone was so used to seeing my hair pulled back, they never considered that me- the one who swore to Never have short hair again had cut it all off.

      Even on oxygen I refused to give in. I walked everyday, even if I did not feel like it. Braving the neighborhood  dogs who always seemed to have the fence gates left open. What did it matter? I had seen jaws. I had oxygen. All I needed was a way to set it off right ? :)

     

       I have never forgotten these times. I promised to honor my donor each and everyday and live my life to the fullest to honor her a woman I never knew. She was 34 and we were a perfect match. She also died as the result of a major accident. I used to cry thinking that at her age she must have had small children at home who would never know Mommy. But it is also my deepest hope that they were also told stories of her bravery and how she saved the lives of many!

We never know

This afternoon as I was cleaning out my Xterra from today's show our Mail man arrived with the mail. I walked out to meet him, and asked how he was doing.  He and his wife live just down the street, so we've gotten to know each other pretty well.

Imagine my surprise when he replied, not too well. Now this is a man who is always chipper and positive.  My heart literally broke when he told me today was his first day back in a month. His wife had passed away. She was only 44 years old.

They recently found out she had an enlarged heart and her Doctor was trying to get it under control. She passed away suddenly of Congestive Heart Failure.  I've had this blue funk cloud over my evening after hearing the news.
This has brought back many memories for me as well. As a teenager I was a CHF patient. When I hear of anyone suffering from CHF I empathize as I remember how I felt all the times I struggled to get mine under control.  For years I randomly coughed blood and we never knew why. It was discovered when I was 17 that the pressure inside my heart and lungs was 6 times higher than it should be. This high pressure was  causing my blood vessels to bust and I was literally drowning in my own blood. Not everyone has this same issue with CHF.. Most retain fluid and take diuretics to control the fluid retention. Symptoms are swollen feet, ankles, hands, etc.  I was always one of those lucky people that it never showed , asypmtomatic. That is until it was at a critical stage.

At one point I remember driving myself to the ER only to discover it was CHF rearing it's ugly head again.  Note to self- Do not driver yourself to the hospital at 3AM and then call to ask your parents if they can come and get you.  Or at least hold the phone very far from your ears. Lesson learned.. Call Mom & Daddy first.

Please take a moment to remind yourself that not all health defects show themselves, and give that stranger a smile or a helping hand. It may just make their day..And please say a little prayer for my Mail man Tim to help him through this rough time..

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