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'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'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

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'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

THE WOUND VAC - OH JOY!

As many of you who follow my Blog know, I have an area along my Lung Transplant incision that has not healed - or as the doctors like to say: "non-healing posterior right thoracotomy incision; wound is stagnant and has not changed in dimensions in 2 months". The wound measures 4cm (L) X 1.25cm (W) X 1cm (D).

We've tried all the standard treatments up until now, including wet to dry dressings along with a special ointment. It's just not healing (thank you Prednisone).

So the next recommendation was to introduce the use of a Wound Vac. Oh that sounds like lots of fun; yes, let's do that! Well, if it heals this wound, it will be worth it, but I was not looking forward to my appointment today with the Wound Care Nurse. As it turns out, in my humble opinion, for good reason. 

Now, I've been through worse. Heck, I got through a Lung Transplant, so if I can do that, then I figure I can do just about anything they throw at me. But this wound is painful, and the nurse had to scrub it - yes, you heard right - she had to SCRUB it before putting the Wound Vac on. That was not a pleasant experience. The wound is 1cm deep (nearly .4 inches) and the nurse is in there scrubbing away. 

So then we get to the part where she attaches the Wound Vac. First of all, this thing must weight close to five pounds (realistically probably more like 2 or 3), but when you have to WEAR it 24/7 it weighs a ton and feels more like 15. 

Then the nurse tells us the Visiting Nurse will come to the house 3 days a week to change the bandage (Mon/Wed/Fri), but I'm still supposed to go all the way to Loyola every week for them to look at it!!! WHAT!!! When am I supposed to fit that in? Well, next week I have to be down there for another appointment anyway, so I'll see the Loyola Nurse that same day on Wed. and the Visiting Nurse will only come on Monday and Friday. After that, Loyola agreed to every other week. We are so far away, it's still rough on me on days I have to go down there. They were very agreeable so we were pleased they agreed to every other week.

This is challenging but if it heals the wound it will be worth it. We just have no idea how long it will take and it's tough being tied to this machine. I am sore tonight because of the scrubbing, but the device is not painful, although it's quite uncomfortable to lean back against it when I'm sitting in my chair. I have to figure out how to carry this contraption around the house. I can wear it like a fanny pack like in the first photo, or I can carry it like a should bag which sometimes is more convenient. I guess I'll get the hang of it as time goes on. 

Well, at this point, I figure the best way to explain what this is like, is just to show you. So, without further ado, meet my Wound Vac.

The Wound Vac as "Fanny Pack"

The Wound Vac "Taking a Break"

The Tubing is Attached to Me

Carrying It Around

The Wound Vac Doing Its Job on my Wound

OH HAPPY DAY!

Today is a very special day for me. It's a major milestone. I know, every time I write, I say it's a milestone. Well, you go through a Lung Transplant and I defy you not to find many milestones along that journey!

For me, today is one. I didn't expect it to feel this way. I was looking forward to it. I was very happy when the doctor said it could happen. But when it finally came about, the joy I felt, the happiness and sheer pleasure brought tears to my eyes.

Today, I got to have Walgreens come to the house and take back ALL the oxygen tanks in the house! I haven't needed supplemental oxygen since my transplant and so my doctor gave permission to take it away. That news made me happy. Like I said, I was looking forward to it.

But when I stood at the door, after signing the papers, watching the service man carry the tanks to the truck, tears were streaming down my face. This was a day a year ago I never thought I'd see. Wasn't sure I'd see any days, let alone without oxygen. And yet, here it was. The day had come and I am breathing on room air, even when I exercise. Going up and down stairs without oxygen. It's a gift and a blessing.

It took me by surprise - this feeling that overcame me as I watched all that oxygen leaving my house, hopefully forever. I haven't needed it and so I haven't had to listen to the awful humming of the machines since my transplant. But it's a sound I will never forget. I will never forget that year of being sick and the time spent on the UNOS Waiting List for my lung.

But to be blessed enough to actually get my lung and to be doing so well is a real miracle in my book! I owe everything to all the doctors that fought so hard for me and the team at Loyola for saving my life. My Coordinator for her never ending patience and help in managing my post transplant care. My family for the countless things they have done to help and support me. They will be pleased to find out the oxygen is gone.

So, it is with much happiness that I say:  Bye, Bye Oxygen! You won't be missed!

"HAPPY" - Pharrell Williams

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

“Courage" ~ Gertrude T. Buckingham

When I see a man who, bravely,

      Meets realities in life,

      Who carries on, courageously,

      In the face of grief and strife;

Then, I bow my head in honor

      Of this man, with courage rare,

      Who has such strength of character,

      Who, bravely, his burdens bears!

"Bring on the Rain" - Jo Dee Messina

THE THINGS I'VE DREAMED OF DOING!

Ever since I was diagnosed with Idiopathic Bronchiolitis Obliterans and told I needed a Lung Transplant to survive, my life changed forever. I needed oxygen 24/7 just to breathe, a Bipap machine to sleep at night, a wheelchair to get around and, of course, that Lung Transplant.

My life, as most transplant patients will tell you, became very "small". I couldn't do anything without assistance and I was either at home listening to the humming of the oxygen machine that was keeping  me breathing, or at the doctor, or in the hospital.

During this time, something that happens not just to transplant patients, but many patients with chronic disease (like my Interstitial Cystitis and other chronic diseases). We discover what we can no longer do. There was already a rather long list since getting IC of what I could no longer do: ski, bike, hike, go to the movies or theater, travel, among others. My IC "sisters" and others suffering from chronic illness understand this.

But now, with this new debilitating disease, it was threatening to do more than just curtail my activities, it was going to take my life unless I got that transplant. I long ago mourned and moved on over how having IC has changed my life and accepted my new limitations. I learned what I could and could not do and dealt with it. But this was a whole new ballgame.

I wanted to live and so I chose to fight. To fight to be accepted as a candidate for a lung transplant in the hopes that it would come in time and I would get my life back. Fear is something that I had never lived with and now I had to find a way to cope with the fear I might not get my transplant in time. I cannot describe how that feels; other patients waiting for their transplant do, but I believe it's a small "club" that truly get it, although I do believe people are understanding and can empathize.

Regardless, as I went through this process, I dreamed of what I might do if I ever did get that lung. They were dreams for sure. As the clock ticked and the call didn't come, and time was running out, it became harder and harder to stay strong. But I kept going to Rehab and never lost that glimmer of hope that my turn would come. 

Today, March 3, 2015 is my 4 month "anniversary" of my lung transplant. While there have been and are still, bumps in the road to recovery, I am doing well. The doctors are very pleased and keep telling me how well I am doing for a lung transplant patient at this stage of recovery. I have begun to dream of the things I dreamed of while waiting for my transplant. I am still limited by my IC. It's like that old joke about the patient who asks the doctor if he'll be able to play the violin after his surgery and the doctor says yes only to have the patient tell the doctor that would be amazing since he couldn't play before the surgery. I have no expectations of being able to do things that my IC had already restricted me from doing.

But when a miracle - which I believe this is - like a lung transplant saves your life, one's perspective changes a great deal. At least mine did. I have different dreams now. When I was sitting in a wheelchair, having lost all conditioning to the point I could not stand unassisted, dreams change. Often you hear about transplant patients setting huge goals for themselves after their transplant: climbing mountains, running marathons and so forth. I do not have such lofty dreams and goals. Mine are much simpler.

Dream #1: I just wanted to be able to sleep laying down - as opposed to having to sit up - without the need for the Bipap machine and all the noise the oxygen machine made. Peace and quiet and the comfort of my bed. One's bed should be a refuge where we go for sleep and to rejuvenate. While I was sick, it was most definitely NOT that. Dream #1 has come true! I can sleep laying down, in peace and quiet and my bed is once again a place of refuge and rest and comfort. It is such a pleasure to sleep (even when my IC bladder wakes me up, I am able to fall back asleep). And I am enjoying even making my bed each morning when I get up. 

Dream #2: To be able to just get up and walk without assistance. Becoming deconditioned happens SO fast, but it takes SO long to get one's strength back. But I dreamed of it happening. Dream #2 is coming true!  It has taken A LOT of hard work, which is ongoing, going to Rehab, doing my exercises at home, but I can get up and walk around on my own. I am moving about the house more and more; even going downstairs and making my own breakfast and lunch so Mom doesn't have to wait on me hand and foot anymore! Today I even went outside and walked around our Cul de Sac! It's not far, but it's a first and a big accomplishment for me! This is a work in progress, but progress is being made and so the dream is coming true!

Dream #3: To be able to take a "normal" shower, standing up without assistance. To wash (and dry) my hair like I used to. There is nothing so wonderful as standing in a hot shower and letting the water cascade over your body. There is a reason people have been going to hot springs for hundreds of years; the healing power of hot water is well known. Dream #3 has come true! To be able to wash my own hair while standing in the shower, enjoying the hot water is so soothing. Showering has never been such a luxury, but I am enjoying it so much!

Dream #4: Wear "normal" clothes again. First, the massive doses of Prednisone had caused me to gain nearly 30 lbs. and even my underwear was straining at the seams. NOTHING I owned fit; nothing. Yet, I felt it a waste of money to buy new clothes. Family and even friends took over got me some very nice "warm up" style outfits to wear. I had to stop wearing a bra as it was already so hard to breathe, when I attempted to put it on, my breathing became even more labored. So bye, bye bra (I know - too much info, but it's the truth). I still can't wear one because of the surgical incision and the wound that refuses to heal. It would hit me in all the wrong places that are not yet completely healed so that's on hold for now. But I have lost ALL the Prednisone weight and my super nice Nike warm up fits again and that's my go to outfit for doctor and hospital visits.  So Dream #4 is coming true and a work in progress! I did treat myself to some new workout clothes for Rehab and that felt really good. I feel very close to trying on some of my "regular" clothes to see how they feel. Up until now, I have needed loose fitting, comfy clothes. But I am about to see how it feels to put on a pair of blue jeans. I think if I show up in the doctor's office in real clothes, they won't recognize me! I can't wait for that to happen.

Dream #5: To go to the hair dresser - at her salon - and get my hair cut and styled. While I was sick, she came to my house and chopped my hair short because I could not take care of it. Dream #5 has come true! I recently went to the salon and she cut and styled my hair. I felt so pampered and it feels so great to have my hair styled again and feel like a "normal" person. I've decided to stop coloring my hair, but I don't even mind the gray. I'm actually getting a lot of compliments, which I'll gladly accept.  I love my new hair cut and will keep it ship shape going forward. Little things that make us women happy.

Dream #6: To go shopping. Dream #6 has come true! As previously mentioned, I've gone shopping with my Mom for some new workout clothes and shoes! That was so much fun. Yes, I was quite tired when we got home, but I couldn't believe I was able to walk around the store for nearly 2 hours, try things on and just shop like I used to! What fun that was!

Dream #6A: To go grocery shopping: Mission Accomplished today! For the first time since my transplant, I went to the grocery store with my Mom, got my own cart and went up and down every single aisle in the entire store and got what I wanted! That's a LOT of walking for me at this point so it's a major accomplishment on this day!

There are some other dreams I have that I will write about. Some have yet to come true, but I plan on making them a reality. The very fact that I am 4 months post transplant was a dream I wasn't sure I'd ever see and yet, here we are. Six months is a dream and the biggest dream is one year! Making it to one year is a really big deal in lung transplant, so that is a dream. If I make it - and I plan to - that will be my "Re-Birthday" and we will be having a big party to celebrate. But that is down the road and for now, it's on my dream list. 

I don't need to climb a mountain, run a marathon (heck I did that years ago; the marathon that is!). My dreams and goals are much simpler, but I still have things I am dreaming of doing. I plan on making them happen!

Dream #2 Coming True!

 "Somewhere Over the Rainbow” - Israel "IZ" Kamakawiwoʻole

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

Refuse to surrender. There is still hope. Take it as a chance to rebuild your body and soul. Understand that sooner or later, you can live the happy, fulfilling life you wish for.

Yes, you will.


“We shall draw from the heart of suffering itself the means of inspiration and survival.”
Winston Churchill

 

 "Temporary Home" - Carrie Underwood