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.

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?

Insulin - Day how many?

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

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

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

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

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

Everything eventually comes flooding back

I've been remiss in posting mainly because my little dog DB has started with a terrible cough.

We tried the old remedy recommended by the veterinarian to no avail. To no avail right... Have you ever tried to give a dog Robitussin??? I hate the stuff so I can only imagine how this poor little 10 lb. dog feels. I even went the gamet of getting childrens flavored!

So after a week of the cough calming down, he got worse. Me being the worrier I am, after all this is one of my boys. I took him back to the vet.

With all our exercise, walking and looking slim the vet found a significant heart murmur.......

Not only a heart murmur, fluid was backing up into his lungs causing the cough. When I heard this a flood of teenage memories flooded my consciousness all at once

Then the vet handed me 2 packs of meds. One was a heart pill and the other was Lasix. OMG! I looked at the dosage of 12.5 mg and said : "Wow, I only took 25mgs at the most at my worst times and he's only 10 lbs.." I was then told DB was in crisis mode and we had to prevent the fluid from leaving his lungs and going into his heart.

Another flood... a major one... My sweet, little, holy terror was suffering from some of the complications I had endured for many years!

I then and there made a promise to God. I will spoil my little one even more, I will be protective, I will also give equal time to my other 2, and I will NOT lose my little Dibs.

Our walks are much slower now. This is difficult for me as thanks to Prednisone I run on Hyper mode constantly. We used to walk at around 2.5-3 mph. Now we meander and sniff every blade of grass and let the other brothers chase squirrels and lizards, and when he starts lagging behind and breathing heavy, he lets me know it's time for a ride in my arms.

Carrying him can be a major feat in itself while trying to control 2 other holy terrors!

A fellow crafter makes slings to carry babies with. She will be my next email. He will receive his very own custom designed carry all sling for walks.

Since the vet says this will only get worse, he deserves the best.

Memories like these hit us at the most unbelieveable times. We accept them, because they made us the survivors we are today. We learn from them, and they help us to help others facing the same crisis in their lives. I just never thought I would be helping my dog.

What are some of your memories???