Saturday, April 25, 2015

HONORING THOSE THAT GAVE THE GIFT OF LIFE!

As a Lung Transplant recipient, I have been truly humbled to have been given the ultimate Gift of Life. I have been grateful to the anonymous individual whose lung I received and think of them often. I have written my letter of thanks following the guidelines provided by my transplant team. It is anonymous and the donor family may or may not reply. I'm OK either way. I felt compelled to write to the family and express my deep gratitude for their supporting organ donation and to let them know that I think of my donor often. I will also never forget that person and will honor their gift every year on the anniversary of my surgery.

April is UNOS National Donate Life Month, so there are many activities going on around the country at transplant centers to honor organ donation and organ donors and their families. The other day, Loyola, where I had my transplant, held their 23rd Annual Candlelighting Ceremony to honor organ donors and their families.

It was a beautiful, moving, humbling and emotional ceremony. There were speakers who had received a heart transplant, lung transplant, liver/kidney transplant, but the most emotional was the mother who spoke about her children. One, a daughter, who needed an ankle transplant, having been born with a club foot. The other, her only son, who upon getting his driver's license signed up to be an organ donor because as his mother told the story, "our family recycles everything". Here was a mother who was waiting for so long for a transplant for her daughter's ankle and then the worst thing that can happen does. Her son is killed in a car accident and, per his wishes, saved the lives of multiple individuals. Her son's ankle was too big for her daughter, so it went to a basketball player who was then able to continue pursuing his basketball career. Her daughter finally got her ankle transplant and this mother spoke of what it's like to lose your only son, but have him save so many others, and then have your daughter be the recipient of a much needed transplant. It was the most emotional and amazing story and she received a standing ovation among many tears being shed in the audience.

Then it was time for organ donor families, organ recipients (like me) to go light a candle in honor of our organ donor and all organ donor families. When I was handed my candle, lit it and placed it among the other lit candles, I thought of my donor and was filled with gratitude and much emotion. Tears ran down my cheeks.

There was a lovely reception afterward and I was able to speak to many on the Transplant Team that saved my life and are still working to help me be a successful transplant recipient. It was truly great to be able to thank them for all they do and for accepting me into the Lung Transplant Program. There were lots of hugs all around. If you just stood and quietly watched, you would notice how every member of the Transplant Team knows every patient by name; the patients all want to hug and take pictures with their medical team. It's a special bond we have with each other as patients and with our medical team that saved our lives.

The event was even covered by our local CBS affiliate, Channel 2 News; here's a link to their story on the event.



Getting Ready to Head Out for the Candlelighting Ceremony
Wearing my Blue & Green, the colors of Organ Donation & Transplant Awareness 

Please consider being an Organ Donor!

This candle is lit in honor of the individual who gave me the Gift of Life;
I am forever thankful and will honor them and remember them always.


"Tears in Heaven" - Eric Clapton


Sunday, April 5, 2015

SUNDAY'S INSPIRATIONAL POEM & SONG FOR THE DAY!

The Victor
by: C. W. Longenecker

If you think you are beaten, you are.
If you think you dare not, you don't. 
If you like to win but think you can't, 
It's almost a cinch you won't. 
If you think you'll lose, you're lost. 
For out in the world we find
Success begins with a fellow's will. 
It's all in the state of mind. 
If you think you are out classed, you are. 
You've got to think high to rise. 
You've got to be sure of your-self before
You can ever win the prize. 
Life's battles don't always go
To the stronger or faster man. 
But sooner or later, the man who wins

Is the man who thinks he can.


"Defying Gravity" - Idina Menzel



Tuesday, March 31, 2015

THE DAILY RITUAL OF THIS TRANSPLANT PATIENT!

Post transplant is a lot of work. My daily ritual goes something like this:

- Get up at 7:15-7:30AM
- Take Vital Signs and Log for Transplant Coordinator (Weight; Temperature; Blood Pressure)
- 2-3 times a week check Blood Sugar
- Use my Spirometry Device and record outcome; need 3 successful tests (the machine talks to you so if you don't blow hard or long enough, it tells you your tests was unsuccessful and you must do it again) - my torture device!
- Anti-Fungal Nebulizer (takes about 1/2 hour) - Awful tasting and makes me cough!
- Shower and change Wound Bandage; while in the shower, I must sit on the shower chair and my Mom must scrub the wound, and run the hot water over it to get it clean and healthy; put on new wet to dry bandage once out of the shower - yeah, that's fun.
- Take Nasal Spray
- Take Daily Morning Medications (11 different pills just in the morning; 33 pills total for the day)
- Take the one Medication that is a Suspension Liquid - Disgusting doesn't begin to cover it!
- I am required to wait one hour after I have taken my pills before I can eat my breakfast.
- Get Dressed and check the clock; can I eat yet? Usually take pills at 8AM, so breakfast can be at 9AM. Oh look at that; it's taken so long to get all this done, it's actually 9:30AM and yes, I can eat breakfast.

The morning ritual takes about 2 hours. None of it can be skipped and all of it must be recorded for my Transplant Coordinator to review when she sees me. 

On the days I go to Rehab I have to make sure I get it ALL done, including breakfast so I can get out of the house by 10AM to head off to Rehab. By the time Rehab is over and we get home, it's noon and it's time for more medication and lunch.

By now I need a nap. My wound is sore from Rehab and I'm usually worn out from the exercise, so I have my lunch and take a nap.

Before you know it, it's 4PM and time for more medication. I finally have some time for getting on Facebook, maybe working on my Blog, Twitter or trying to talk to friends.

And then the before you know it it's dinner time. 8PM is time for my final round of medications. I try to stay up until 10PM so I don't go to bed too early and then wake up too early. But my sleeping is all over the map. If my cough wakes me up, usually that means getting out of bed and coughing for two hours. 

Sometimes, like the other night, I was in pain and couldn't sleep. I have pain medication, but if I take it I'll be a zombie in the morning and yesterday's morning routine had to start early because I had a doctor appointment and couldn't be running late because I overslept.  So I sat up from about 1:30AM until 3:30AM before trying to go back to bed and fall asleep.

Most nights something wakes me up several times a night. My IC bladder is often one, so if it isn't transplant related, it's my IC. I know many can relate to the sleep problems; it's not fun for sure.

And the whole thing starts over again the next day. Tuesdays and Thursdays are always Rehab. This week I have a doctor appointment on Monday, then Rehab on Tuesday and Thursday and the Wound Care Nurse down at Loyola on Wednesday. So I have an appointment every day but Friday. This is typical. The same thing is on the calendar the next week. 4 out of 5 days I have either Rehab or a doctor appointment.

Then there's the side effects of all that medication that has to be dealt with.  Having a transplant is like having a full time job. They told us it would be like this. They didn't lie or exaggerate that's for sure!

Yes, it's a lot of work. Saturday or Sunday I must fill my pill box for the week and that takes about an hour to fill the 28 slots in the box. But it's worth it. I am here, I am alive and I am blessed and lucky. But getting a transplant isn't easy and takes a lot of dedication from not only the patient, but their support system as well. 

The daily ritual is time consuming and often feels like a job. But it is work well worth doing and I am grateful to be doing it!


"Coming Out of the Dark" - Gloria Estefan

Sunday, March 29, 2015

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!


I just realized that I haven't written a blog since last Sunday's Inspiration Poem. It's been a rough week for me; my wound is not healing and giving me pain, then I bumped it on the staircase railing as I was going upstairs - OUCH!  This cough is driving me nuts and keeping me up at night. I've had seemingly endless appointments and Rehab, so I'm out a lot. Next thing you know the week is gone and I haven't written anything. I'm working hard at Rehab and trying to get stronger, but I am tired and in need of inspiration, so here the usual Sunday Inspirational Poem & Song for the Day. May we each find the inspiration and motivation we need to keep going even when it's hard.

Magic Wand

I wish I had a magic wand
To make it go away;
I'd wave my scepter over you
Until you were okay.

I'd think good thoughts; I'd send you love;
I'd transmit healing vibes;
My wand and I would surely beat
Whatever the doc prescribes.

But there is no magic scepter, so
I cannot cast a spell;
Just know you're often in my thoughts,
And I hope you'll soon be well!

By Joanna Fuchs


"Keep Holding On" - Avril Lavigne

Sunday, March 22, 2015

SUNDAY'S INSPIRATIONAL POEM & SONG FOR THE DAY!

DESIDERATA

Go placidly amid the noise and haste and remember what peace there may be in silence.
As far as possible without surrender be on good terms with all persons. Speak your truth quietly and clearly and listen to others - even the dull and ignorant. They too have their story.
Avoid loud and aggressive persons for they are vexatious to the spirit.

If you compare yourself with others you may become vain and bitter, for always there will be greater and lesser persons than yourself.
Enjoy your achievements as well as your plans.
Keep interested in your own career however humble. It is a real possession in the changing fortunes of time. Exercise caution in your business affairs for the world is full of trickery. But let not this blind you to what virtue there is. Many persons strive for high ideals and everywhere life is full of heroism.
Be yourself, especially do not feign affection. Neither be cynical about love; for in the face of all aridity and disenchantment, it is as perennial as the grass.

Take kindly the counsel of the years, gracefully surrendering the things of youth. Nurture strength of spirit to shield you in sudden misfortune. But do not distress yourself with imaginings. Many fears are born of fatigue and loneliness. Beyond a wholesome discipline be gentle with yourself.
You are a child of the Universe no less than the trees and stars. You have a right to be here, and whether or not it is clear to you, no doubt the Universe is unfolding as it should.

Therefore be at peace with God, whatever you conceive him to be, and whatever your labours and aspirations in the noisy confusion of life - keep peace with your soul.

With all its shame, drudgery and broken dreams, it is still a beautiful world.

Be careful.
Strive to be happy

Max Ehrmann (1872–1945)


"Angel" - Sarah McLachlan



Friday, March 20, 2015

MY FIRST NIGHT OUT TO DINNER!

So as I recover from my Lung Transplant, and the healing continues, albeit slower than I would like, I get to do things I haven't been able to do for a very, very long time. I've written about this before and the things I've been dreaming of doing. Some I've been able to do: go for my first walk outside; go to the hair dresser; sleep lying down with no oxygen to name a few of my FIRSTS since my transplant.

Last Night I got to do one of the things that I've been dreaming about since I got sick and since I had my Transplant. Go out to dinner! My cousin from California is visiting and my parents, my brother and his wife and I all went out to dinner! I also got to wear "Real" clothes for the first time since I got sick. I had been living in warm up style clothes before the Transplant because "real" clothes were extremely uncomfortable. I already couldn't breathe and putting on jeans just made it even harder to breathe. Then there was all that Prednisone weight I gained that meant NOTHING I owned fit; literally NOTHING fit. So that would have really been impossible.

I have since lost all the Prednisone weight and knew in my head I could get into all my clothes again, but I was still uncomfortable in regular clothes; the post surgical incision is still uncomfortable and then there's the open wound I've written about that I now have a Wound Vac attached to. I couldn't figure out if I could make that work with regular clothes.

But I persisted, found my comfy jeans and some nice tops; put on some nice jewelry - I even got my rings on again. When I had all that Prednisone weight, I couldn't get my rings on and for a while after I lost the weight, my fingers were still a bit swollen and the rings were tight, but tonight they fit just fine.

A dear friend had given me a lovely necklace that says "Just Breathe" and I wore that tonight. I felt so normal, it was great. My first night out to dinner since I got sick, but more important - my first night out to dinner since I got my Transplant! And best of all, with family!  Another of my "dreams" that has come true! And we even went to the restaurant where my niece is a server and she waited on our table. We had so much fun! I'm exhausted but it was so worth it. 

So last night I celebrated another milestone: My First Night Out to Dinner!



Wearing "Real" Clothes for the First Time!

(Left to Right)
Sister-in-Law; Cousin; Brother

(Left to Right)
Dad, Mom, Me with my Mask Pulled Down for Photo

Me and our Waitress, My Niece

Sunday, March 15, 2015

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

Finish every day and be done with it. 
You have done what you could. 
Some blunders and absurdities no doubt crept in; 
forget them as soon as you can. 
Tomorrow is a new day; begin it well and serenely and with too high a spirit to be cumbered with your old nonsense. 
This day is all that is good and fair. 
It is too dear, with it's hopes and invitations, 
to waste a moment on the yesterdays.

by:
Ralph Waldo Emmerson



"Gone, Gone, Gone" - Phillip Phillips