TALK ABOUT YOUR HIGHS & LOWS!

So this is how I spent my Saturday.  Most of the day was spent relaxing, watching tennis and visiting with a friend. Then my cell phone rang. I was talking with this dear friend who came to visit me so I wasn’t going to answer it, but I took a quick look to see who it might be.

It took my brain all of about 1 second to look at the number and figure it out. You see, I know a Loyola Hospital number when I see one and this was them. It took another second for me to realize it’s 2PM on a Saturday afternoon, Loyola wouldn’t be calling unless it was for one thing. This must be THE call.

So I answer the phone and it is one of the Loyola Procurement Nurses. Now, don’t get too excited. They want to bring me in. They are not saying they have MY lung, but they want me to come in as a Back Up. I am told to sit tight, stop eating and drinking and wait for another call telling me when to leave. In the meantime, my family goes into overdrive preparing for the trip to the hospital (getting my portable oxygen in the car, getting things they’ll need etc.) About 2 hours later and they finally called back and said - leave now. We arrive at Loyola at about 6PM and I am admitted to the hospital and sent to a hospital room on one of the floors and treated like any patient is when they are admitted. Get the gown on, the socks, take my vitals. They even took it so far as to put in an I.V. and draw blood for labs, get sent for a chest X-Ray. 

Finally, at around 8PM, a Resident comes to meet with me to explain the situation. So, here’s the scenario on how this whole “Back Up” thing worked in my situation at least.  The person in front of me needed BOTH lungs and I only need one. Once the donor lungs would arrive and were examined if BOTH are deemed worthy of transplant then the other person gets them because they need both. If on the other hand only one of the donor lungs looks good enough to transplant I get it. I am told we won't know until midnight-ish so we sit here and cool our heels until I get the word.

My Mom and Brother go get something to eat. I wait. My Brother goes to a visitor waiting room where there is a couch and takes a nap. We wait. And we wait. And we wait.

Finally at 1:30AM, the floor nurse comes in and tells me what I was expecting all along. There would be no surgery for me last night. I can be discharged and go home.

By the time I got discharged, down to the car, drove home and got into bed it was 4AM. I’m exhausted.

The good news is, during all my Evaluation for Transplant meetings, they tell you about these types of situations. They tell us to expect it; it happens to many, many transplant patients at least once. I said all along I was going to expect the first call to be a “dry run” and it was. That way I wouldn’t fall to pieces when I didn’t get my transplant.

It’s a disappointment of course. But it actually gives me some hope. If I got matched for this person yesterday and the other A- patient got the lungs this time, it would seem to me that the next time the right size A- lungs become available, it would be my turn. I choose to look at it that way. It’s just how long will it take for that to happen.

Talk about your highs and lows. I didn’t get my lung yesterday. It wasn’t my turn. Next time. Next time will be my turn. So this is how I spent my Saturday. Now wasn’t that fun! 

Last Night Waiting

THE LONG, SLOW WAIT!

As I sit here waiting to get that phone call, that seemingly never will come, my mind wanders in all directions.

I travel down the road of happy memories from my childhood. I reminisce about good times with friends. I look at photos of trips I’ve taken and tears well in my eyes. Emotions are very near the surface these days. I can cry at the drop of a hat. Well, that was always true and the source of much family teasing throughout my life. It’s worse now.

Everyone, including me, wants me to stay positive. I will get my transplant; I just have to be patient. Patience is lacking, I’ll be honest. The doctor tells me the clock is ticking and I need that transplant ASAP! Doesn’t do much for one’s positive attitude. But it could still come in time. You never know, so I hope that happens. It’s possible. It could happen; keep telling myself that.

Even writing my Blog has become a challenge for me. What do I write about. I don’t want to sound self-pitying but I’m afraid that’s the case, but it’s not why I do this. I’m trying to explain my journey and what it’s like to go through a disease like this. The side effects of my medications make my hands twitch and even typing this up is a physical challenge. What isn’t? 

When this Blog began, it was because I had been diagnosed with a rare, painful, incurable and difficult disease that landed me on Disability (Interstitial Cystitis or IC) and having to sell my home and move in with my parents. That was a lot to deal with; 12 surgeries, trial and error with many treatments, learning to live with chronic pain. But I gathered my courage and devoted myself to becoming a passionate patient advocate, talking to others suffering from the same disease, working to raise awareness through my Blog, Twitter, fundraising and more. Since coming down with this lung disease, I have had to give up those activities. I don’t have the mental, emotional or physical energy to devote to them. My IC Blog has morphed into a Blog about my lung disease; that is, when I can come up with something to write about. 

IC took a lot from me. My home, independence, financial security, freedom to do whatever I wanted. I thought I had lost a lot with that diagnosis. Boy was I wrong.

Idiopathic Bronchiolitis Obliterans has taken even more from me; it very well may take my life, at a very slow and painful pace. But before it does, it is taking other things from me, slowly, one by one. Sleeping. Breathing. Thinking Clearly. Walking. Physical Fitness.

Focus. Stay Positive. It’s hard, but it’s what I’m trying with all my strength to do. I want that transplant. I want more time, more memories. 

The Transplant Team tells you this will be hard - the waiting. They didn’t lie. It is the hardest thing I have ever had to do.

This really is the Long, Slow Wait. Can we speed this up! I’d like that lung now, please!

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

As I sit and wait for THE call to come that the Transplant Team has a lung for me, I am trying hard to use all the tools at my disposal to cope my way through this. Inspirational Quotes, which you see on this Blog every Sunday, music to calm and relax me, talking with friends and loved ones and Positive Affirmations.

Today, instead of an Inspirational Quote I am posting a Positive Affirmation that I like and will work on using:

“I kindly ask for help and guidance if I cannot see a better way.”

"Lean on Me" - Bill Withers

BRING IT ON!

Ever since I was diagnosed with terminal lung disease and told I needed a Lung Transplant, my life has revolved around my health, medications, hospital stays, doctor visits, tests, tests and more tests. As I was already on Disability for another medical condition already, I didn’t think it was possible to spend more time at doctor appointments etc. Boy was I wrong!

I don’t know how anyone else would react when told they need a Lung Transplant, but for me it was a very scary prospect. Very scary. Yet at the heart of it, it’s the only answer to staying alive and so for me, the answer became clear. YES, I want a transplant. Then you go home and begin to question your decision. Well, at least I did. But I want to live; I want more time. For me, there is only one way to get that - a Lung Transplant. It wasn’t on my “bucket list” - it is now!

It’s been a process. A process of going through all the testing and finding yourself fighting and fighting hard, to get the hospital to even accept you as a Transplant Candidate. As I went through all the steps of this very lengthy process, more and more I began to really want it.

I need a Spirometry test. No problem. I need another Chest CT. Let’s go. I need a MUGA Scan. Well, whatever the heck that is, I’m ready. I need a Coronary Angiogram AND a Pulmonary Angiogram. Bring it on and - no I will not do it with any sedation; just a local anesthetic for me please as I don’t want to spend the rest of the day throwing up! So suck it up, and just deal with it! I need an Arterial Blood Draw  - 3 times (NOT fun!!). Let’s do it! I need a surgery to have a Feeding Tube placed before my transplant because of my swallow dysfunction. Oh for crying out loud - fine, let’s go. How soon can we get it done!! Six weeks later I naively go to get the feeding tube shortened only to find out the way that gets done if I want the little button type is to YANK the original one out of my stomach and I’m told it will hurt. The doctor says it will be fast, but it will hurt. Seriously? Really? Close my eyes, hold my breath and on the count of three, go for it! The man did not lie - HOLY MOLY - that hurt!

They don’t make getting a transplant easy. It shouldn’t be. But man, if someone had followed me around with a camera I am confident you’d be surprised by the process. And this doesn’t even count the mandatory Lung Transplant Education Classes and mandatory Lung Transplant Support Group meetings, meeting with the Transplant Psychologist, Dietitian and Social Worker; get an updated PAP Test, Mammogram and Dental Cleaning. Get family members to commit to being my Primary & Secondary Care Givers and sign a document from Loyola that says they are committed to this. I must do Pulmonary Rehab to regain as much conditioning as possible before my transplant so I can do the post transplant Rehab. It isn’t easy. I have to crank the oxygen up but I’m doing it and I’m getting some strength back. 

I need a Bipap to sleep at night and I am hooked to Oxygen 24 hours a day. And as time ticks by, I am finding my baseline “at rest” oxygen needs keep going up. When I first got Oxygen, I was on 2 liters. Slowly, over time I had to increase it to 3 liters, then 4 liters. Now it’s 5 liters. Dragging portable oxygen tanks everywhere I go is no small feat. It takes a team to get me anywhere these days. 

Time takes on a whole new meaning. Waiting is hard. Will I get my transplant in time? These are the things a Transplant Candidate thinks about. The very things the Transplant Team said would be hard. Waiting. 

Nothing has ever been as hard as waiting for the phone to ring telling you your organ is here and come to the hospital for your transplant. 

Stay positive is what everyone says. I’m trying; it’s hard. I speak in the affirmative to reinforce that positive attitude. “When” I get my transplant. “When” I am recovered. I took the word “if” out of my vocabulary months ago. We all talk about “when”. 

I have been told the call could come at any time. So every night I go to bed wondering if tonight will be the night. I take my cell phone with me everywhere I go. I’ve taken everything they’ve thrown at me; more than I ever thought I could handle and come through it feeling pretty proud of myself. 

I want that Transplant! Bring it On!

HOW TIME FLIES OR NOT!

Milestones. We all mark various milestones in our lives: birthdays, anniversaries, and so on. These days my milestones all revolve around one thing. Getting a Lung Transplant.

It's been 9 months since I got sick. I cannot believe it was last November that I woke up one morning with a cough and thought, darn, I've caught a cold. If only.

It's been 6 months since I went to Mayo Clinic and was finally given the correct diagnosis for what was wrong with me.  Idiopathic Bronchiolitis Obliterans. Six months since they said those words followed up by "and you need a lung transplant". Say what? Shock doesn't begin to describe my reaction to this news on that day.

It's been 3 months since I was discharged from Loyola Medical Center after spending a week there being evaluated to see if they would accept me for a Lung Transplant and being stepped down on my Prednisone dosage in a medically controlled environment. What a long week that was.

It's been 2 months since I got the call that I had been accepted as a Transplant Candidate at Loyola and listed in the UNOS http://www.unos.org/ system. That date will stick with me forever. 

There have been many dates along the way that I will never forget. I know exactly the date I woke up coughing and my life changed forever. I know exactly the date the doctor at Mayo said I needed a transplant. I know exactly the date I got listed with UNOS. 

And yet, I cannot believe how time has flown by. Some days it feels like it's dragging as I do what the Transplant Team said would be this hard - wait. Wait for the call to come that they have a lung for me. And then I cannot believe it's been 9 months (moving in on 10 rapidly) since I got sick.

Time really does fly. Especially when you are fighting for your life. Every day seems at once an eternity and yet also seems to whiz by in the blink of an eye.

I'm as ready as I'll ever be. I want to get on with this. It's a scary prospect having a lung transplant but it's what I need and what I want. I want more time, so I want a transplant.

I am hoping time continues to seemingly fly by and the call will come that they have my new lung. In the meantime, I wait. Anxiously waiting, going to Rehab, taking my meds, coughing, struggling to breathe. I wait. Tick tock, tick tock. Let's get me that lung please!

7 DAYS OF THANKFULNESS (& SONG FOR THE DAY)!

Today concludes my 7 Days of Thankfulness. I hope it has given us all food for thought. I wondered if I could come up with that many things, yet I did when I took time to think about it. Things big and small, people and more. I may be extremely sick, but still have much for which to be grateful. This made me think about that and appreciate them. I hope it did the same for you.

Usually Sunday is my Inspirational Quote and Song for the Day. Today I am morphing that with this. So, here is my final 7 Days of Thankfulness post along with a song I like that I felt fit, at least for me.

DAY 7

It can never be said enough, so I am taking a some liberty here with Day 7's things for which I am Grateful:

1.  I am thankful for MY FAMILY!

2.  I am thankful for MY FAMILY!

3.  I am thankful for MY FAMILY!

"THANKFUL" - Josh Groban

7 DAYS OF THANKFULNESS - DAY 6!

DAY 6

1.  I am thankful for the generosity of others; friends driving me to appointments, bringing us meals and running errands.

2.  I am thankful for my wonderful hair dresser who has come to my home to cut my hair for me since it’s difficult for me to go places, and on her day off!!

3.  I am thankful for my family’s sense of humor; it’s amazing what laughing can do for you!

7 DAYS OF THANKFULNESS - DAY 5!

DAY 5!

1.  I am thankful for the nights that I actually sleep!

2.  I am thankful for my cat, who gives unconditional love.

3.  I am thankful for music, which helps me relax when I am feeling anxious.

7 DAYS OF THANKFULNESS - DAY 4!

DAY 4

1.  I am thankful for every single person who is an Organ Donor, as you have made an important commitment that can give the gift of life.

2.  I am thankful for the “good” days when they happen.

3.  I am thankful for my Psychologist who has has been invaluable through my illnesses.

7 DAYS OF THANKFULNESS - DAY 3!

DAY 3

1.  I am thankful for all the people I have met through the ICA and social media that, despite their own medical problems, are going out of their way to pray for me and send me encouraging messages.

2.  I am thankful for each day that I wake up.

3.  I am thankful to be making progress in physical therapy to prepare for my transplant.

7 DAYS OF THANKFULNESS - DAY 2!

DAY 2

1.  I am thankful for UNOS (United Network for Organ Sharing), the private, non-profit organization that manages the nation's organ transplant system.

2.  I am thankful for the little things; seeing the deer out my window, watching the birds and seeing our beautiful yard which give me such pleasure.

3.  I am thankful for my friends, all of whom are going out of their way to support me!

7 DAYS OF THANKFULNESS!

A dear friend of mine who suffers from chronic incurable disease is doing this and challenged me to do the same. So as I wait for my Lung Transplant, I decided to take it one step further and make it my Blog this week. So here goes:

DAY 1

1. I am Thankful for my family, who are supporting me through the most difficult time of my life.
2. I am Thankful to have finally been accepted for a Lung Transplant and put on the UNOS waiting list.
3. I am Thankful for one of the finest doctors who fought for me and got the Transplant hospital to review my case. Without his tenacity, this would not have happened.

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

I don’t run away from a challenge because I am afraid. Instead, I run towards it because the only way to escape fear is to trample it beneath your foot. 

-Nadia Comaneci

"Win" - Brian McKnight

TRYING TO BE PATIENT & ADDITIONAL RAMBLINGS!

As I wait for that all important call that my new lung is here and I am to report for transplant surgery, so much goes through my mind. It bounces all over the place. I work hard to stay positive - I WILL get my transplant. It’s just a matter of time. I have been encouraged by the Transplant Team to think this way; they are confident.

I have the utmost confidence in my Team. To me, they are “rock stars”. They’ve got this. I like that. It helps me when I’m feeling a bit scared to remember that they have complete confidence that I am going to get my transplant and that they can pull this off for me. 

Waiting is hard. They tell us it will be hard. They tell us to expect ups and downs throughout the entire process. That would describe this past week for me. Some days are worse than others. Worst day ever since getting this awful disease was on Thursday. I couldn’t even make it to Rehab that day; I had to “call in sick” and I’ll make it up another day. I really hit the wall that day!

It’s rough having so many tests and appointments and Rehab back to back and I think it took its toll. Those days are scary but I do what I can to get through them. 

I want this, even with all the uncertainties and challenges that come with it. I have met and heard stories of successful lung transplant patients. I’ve heard the story of a man who could have been accepted for a lung transplant but refused to stop smoking so he was turned down and is in hospice. I can’t relate to that. 

I want more time. Time to be with my family and friends. I’ve been sick nearly 9 months now. I can’t believe that much time has gone by and this is where I am. I try not to think of timeframes but it’s hard not to. Could I get my transplant in a few months? Maybe by Christmas? At least this year?

Some days I feel confident that I can handle what all this will entail. Other days I’m not so confident. Ups and downs. But I have been spending a lot of time these recent days working on preparing myself, thinking positive, telling myself I CAN do this; I WILL do this. 

I had some tests this week that have the potential to increase my Lung Allocation Score, so I wait to hear if that is the case. More waiting. 

So the days go by; sometimes it feels like a snails pace. Other times it seems time has flown by. And I wait. Well, if anything, this is a learning experience in patience.