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.