The Early Bird

Remember hearing that from your parents ?
"The early bird gets the worm." We heard it regularly while Mom was bravely attempting to get us up for school. Or her gentle reminders to not be late.

I'm changing the saying just a little today. The early bird gets sleepy too fast.

My nightly ritual lately is:
All quiet until I lay down for the night.  Then as if by magical hour,  the cough finds its way home.  Not the chronic rejection cough, the thyroid pressing on the trachea cough. The cough that repeats over and over, "I'm gonna make you wish you could breathe and make me stop, but you can't".

Last night it started early. I was sitting in the recliner,  and Wham! I finally got things relatively calm but noticed it had triggered A-Fib. This was about 8PM.  Gotta love the feel when your heart jumps from 52 beats per minute to 118. I mean all those darned butterflies are flapping their wings in complete unison trying to break out of my chest.


I gave my heart the allotted time to correct itself,  to no avail and got my Metoprolol. Now I admit, I detest taking this and resist at all cost. It slows me way down, makes me dizzy and nauseous.
 Hoping to sleep the effects off, I went o bed.

Yes my old friend the cough came too. When it finally calmed to let me sleep, my kidneys decided they wanted the night shift. I was up every hour...grrrrrrr

 I finally waved a white flag of surrender and got up at 3:30. My heart rate is down, but not where it should be. Anothe dose of Metoprolol might do it, but not until later.  12 hours per dose,  would be 9AM.  But I have a 9:30 Doctor appointment for suture removal and since the medicine causes dizziness as well as nauseau, I think it best to wait. No, I do not want to have a stroke!  Trust me, if it gets worse, they can remove the sutures at the hospital.

Dilemmas and chaos are a part of everyday life,  just once I wish it were something other than medical chaos. But then agsin without all this my life just might be utterly dull. :-)

So here I sit, propped on the couch, resting for a bit. Maybe the Powers that be will favor me with a nap ;-)

Changes

    New year always brings change. Resolutions would be the first to come to mind.  I've had changes more akin to upheavals.
    First was the departure of my lung transplant physician and my Coordinator his wife.  I'm still getting used to this.  It's difficult to trust another doctor , when this one has kept me alive for 12 years.
   I've been working with my Endocrinologist for the last year , watching my thyroid enlarge while my Hemoglobin dropped. Even kidney transplant is concerned.
  I've been patiently waiting for my appointment on Monday.  We are so close to a resolution.  So , tonight I get a call from his office.  Today was his last day.  *huge sigh*. I am stuck in a country song.  "Here I go again. "

Grinning. .... at least I had a nice dinner at Olive Garden beforehand.

Retinal issues .

If you've been following my blog, you may remember a few years ago I had a retinal occlusion in my left eye that was hemorraging.  I got shots in that eye and to this day still feel reminiscent that I was somehow auditioning to be a victim on the show "Criminal Minds".

I stress with each check up I'll once again hear "you need another shot". Today was another reprieve,  however the EpiRetinal membrane has gotten a little bigger.  These membranes eventually cover the retina and vision is distorted,  blurred, and eventually lost.  Surgery can remove the membrane,  but my specialist feels I wouldn't have a "marked" improvement.  So I chose to wait until it would be a marked improvement in my vision.

Yesterdays CT Scan showed my thyroid has gotten larger, and is pressing on my trachea.  This could also be another reason for my coughing until I choke.  More 5o come on that as I know.

You may be thinking "what else?" Believe me,  I've asked myself that before too.
When I say my health care is a full time job, I mean it !

BUT. .. I am still here.  I am still fighting.  I still have alot to give.
I knew 24 years ago,  and still agreed to be listed for that transplant. The overwhelming thoughts of a life off oxygen,  no wheelchair,  and the ability to breathe make this journey more than worth it.

Remember to always be thankful for what you have- good,  bad,  or otherwise for the alternative for me was to not be here at all to experience this life.  

Grab life with both hands,  stand strong and hold on tight.  It's gonna be one helluva great ride !

Wishes And Blessings

     How many times have we all wished for something ordinary.
"I wish the dishes were done before I get home. "  Or "I wish for a bit of quiet" .  Now,  remember how great it was, when it actually happened ? The utter bliss if sinking into that steamy bubble bath, your favorite music and no one home to interrupt.

That is me this morning.

    As many of you know,  my cough keeps me awake both day and night so naps are rarely achieved with rest.  Couple that with 4 pillows in a vain effort to NOT cough, and deep, refreshing sleep is elusive.  Having a desire to sleep on your back is One thing,  being forced to is another.  Attempting to sleep sitting straight up one invariably awakens with the malady "tingly butt".

Among my simple wishes , topping the list are:
1.  A refreshing nights sleep with no cough.
2. The utter bliss of sleeping with one pillow.

I have many simple wishes,  but sleep has to top the list.  Sleep refreshes us in mind, body and spirit.

Last night for the first time in a few years, my 2 simple wishes came true!  Three pillows on the floor and my head on only one. And *insert drum roll* no cough ! I know it will rear its ugly self after I drink my coffee,  but I intend to wallow in my good fortune for as long as possible.  Oh! And I forgot the best part!  I got up at 5AM, went back to bed and unbelievably went back to sleep until 7A.M. this is amazing in my life.

I know this burst of energy will dissipate as the morning moves on, but it's so nice to wake up feeling rested and ready to tackle the world.   Finally... :-)


Have a refreshed day and don't take your simple pleasures for granted.   ♥

Decisions

After receiving disheartening news in December, I posted the news on Facebook.
It seemed ironic that I normally go to my clinic visits feeling uncertain, only to hear how well I'm doing.  This time I was feeling great, and got a less than favorable prognosis.

Lung transplant dropped the chronic rejection bomb, while I discovered  my paperwork also showed stage 2 kidney disease from kidney transplant.

After posting my thoughts on FB,  I got many responses.  Most encouraging my determination to do this on my terms.
However, I think one read it incorrectly.  tge response was "I've been in stage 3 for years".  Replying about a lung transplant
It was stage 2 kidney disease,  scary in itself being a kidney recipient.

However a first time lung transplant has the possibility of being relisted.  Me,  having had 2 already my chance  is next to nil for another.
I'm not being nit picky,  merely to set the record straight.  I remember my years of chronic rejection, and the fast downward spiral.  I have no wish to go there again,  though I knew it would one day happen  I don't miss the nose wedgies and bloody noses from oxygen.  My wheelchair has been in solitary confinement gathering dust .I have no desire to grant it visitation rights to my derrière.

Mostly, I do not miss the shortness of breath when talking. Being forced to decide between eating and breathing.

Or the realization that my life is slipping away.  It is pure hell having an active mind in a daily weakening body.

Which is why I posted my life on my terms.
I am slowly rebuilding my endurance,  no small feat with a negative reserve of energy. Let alone the breath.

I'm walking more and have taken to my bicycle in the hope of keeping my wheelchair in solitary confinement.

Early Mornings

I remember my Parents alway saying "the early bird catches the worm "_ but they didn't get up repeatedly all night with a cough.

And here I sit my friends, awake and drinking coffee at 3:30 AM -coughing. In all fairness to my cough,  it woke me an hour ago, I merely tried to ignore it in the vain hope it would go away.

No such luck.

Those wonderful REM times when our bodies get rejuvenated from that deep sleep, not gonna happen. Not here, not now. Today will bea day of trudging in a zombie like state, feeding myself  fuel to keep going, until I can get home and collapse.

Now I'm not complaining !  I knew all this could happen 24 years ago, when discovering there was a chance I couls live longer.  I have endured worse, much worse. And if I am truthful I will 3ndure worse again, before this is all over.  So I am so very grateful that I am still here experiencing everything life has given me, plus all the Blessings yet to come.

And that is today's lesson..... be thankful for everything in your life. Good, bad, & other wise. Smile through the bad, laugh at the otherwise,  and truly enjoy the good. For therein lie the memories that will help you sail tthrough life :)

Back to my coffee, my book on the Civil War, and hopefully an early morning nap.

Havea wonderful day today -good, bad or otherwise,  it is YOUR. Day.

My New Life 10/23/1991

The rest of the story on that fateful night is:

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

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

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

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

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

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

22 Years Ago Today

Looking back it's hard to believe it's been 22 years !

The time was 12:08 AM and I was called to the phone. I heard a familiar voice ask, "How would you like to go out of town?"  My reply was well I am actually, I'm going to St Augustine for a few days to regenerate.
"NO, I mean how would you like to come   north, to Pittsburgh?"
Oh my Goodness ! My world stopped turning, I looked at my Mom and mouthed "transplant".

I called the Air Ambulance and started repacking my clothes. The Air Ambulance company called to say a plane would arrive in 4 hours. This will not do ! I had a 4 hour window to before the lungs could no longer be used ! They were paid extra to have a plane waiting in Alabama, but they were sending one from Texas. He assured me the the pilots would be in the air soon. Having worked dispatch for a major carrier, I knew this was not true.. I quickly advised him:  1. The pilots have to get there . 2. They have to do a pre-flight check and get fuel. 3. Check the weather  4. It was a 3 hour flight from Texas to Florida  AND 5. Another 2 hour flight to Pittsburgh.

Thoroughly disappointed I called my Coordinator back and told him the news. He said not to worry, UPMC had a small jet that had just cleared customs and was in Tampa. It was coming to get me. !!!  YAY!!!!
When I called the Air Ambulance back, he was angry. "What is the tail number?"  You don't need that information. "When is it arriving?"  Sooner than you can !  All red flags to me at the time. Little did I know those red flags would soon show themselves for the mean spirited creatures they were.

We went to the FBO  (fixed base operator) area of the airport. This is where private planes arrive. As we were sitting there, 3 customs officials strolled in. Red Flag alert !  I whispered "They better not be after my plane !" My plane was taxiin up and they walked outside. They received an anonymous tip that this plane had never cleared customs !  I was right ! The Doctor onboard as well as the pilot tried many times to explain the importance of getting off the ground NOW ! No -go , these idiots were playing with my life !  They would not release the plane until all the medical equipment was broken down and inspected for contraband.. Let's be serious !!  The Dr. offered to let one of them fly to Pittsburgh with us, and then take it all apart,and they would fly him back home. I needed those machines to live during the flight.. "NOPE"

I'd had enough. I asked for a quarter. "I'm calling the local news. It's a matter of life and death and this time it happens to be mine !"  I called the local station, told a brief story of what customs was attempting. I also stated that if I did not make this lung transplant my death would be on their heads !  It was no more than 5 minutes later I heard a supervisor over the radio " Who the hell called the news!" The officials looked at me and I smiled prettily and help up the phone receiver :)  "Get that damned plane out of here !"

And that my friends is how my new life began...  I came out fighting and still fight !!

Changes in Latitudes does not negate a Change In Attitude

      A situation happened this morning that got me thinking.....
As I was waiting at the drive thru to get my boys a morning sandwich, the car in front of me was ordering a small coffee. When he was cheerfully given the total, he yelled "When the ^%$# did that go up?"
I was patiently behind him thinking "here we go again" . Then almost instantly I hear "senior coffee ! senior coffee ! senior coffee! Jesus Christ!"  My eyes popped open wide, my jaw dropped and I thought where did manners go?  If you have such an issue walk inside.  Or better yetk, brew your coffee at home !  I did tell the poor girl who was the brunt of his tirade, she had my permission to "slap him silly" which made her smile .

      Now I am normally one to walk inside, but since my boys ( furry ones) were with me I chose the drive thru. This restaurant is known for the longest drive thru with the inside being completely empty.  Cars had even blocked the turn lane from the highway waiting for the drive thru.. Now I may be wrong, but that is lack of consideration and , yes manners. Not to mention illegal too.

       I live in an area that is considered "seasonal". This means that senior citizens or snowbirds come here for 6 months out of the year and go home for 6 months. I have noticed that the older population can be a .. well bit cantankerous. This in turn makes me wonder, what it is about aging that makes some feel they can be rude to others. Is it childish regression?  Or is it a right of passage?  Whichever it is, it is now being spread to the younger generations as well.  I do give the benefit of the doubt to many with the realization of what Alzheimers can do to ones personality, many others no way.

     In  High School I worked in the hospital and sometimes saw this "anger" in the disabled. Now this was before I was diagnosed with all my issues, but it still gave me thoughts.  The main thought that we all have 2 choices in life.
1.  We can either be angry at the world, and thus making everyone glad we're gone.
2. We can try our best to cheer others up and make their day, thus they be sad we're gone.

How would you like to be remembered?

If we're in a bad mood, what right do we have to ruin anothers day?  Why can't we do or say something  nice to help them smile and lift our moods as well..

The choice is yours...

Have a great day !  :-)

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.