MAN, THIS IS HARD!

Staying positive. Man, this is hard. I've had a super rough week and felt myself sinking in the swamp of negativity. 

It started with Rehab this past Thursday. I got home and did not feel well at all. They are pushing me, I am trying to push myself so I regain as much muscle strength as possible and I feel I overdid it. By the time I got home I was struggling to breathe, was in pain, exhausted and could hardly hold myself upright. I went to bed that night and for once I actually fell asleep right away.

Thursday, midnight. The house phone rings. Mom comes to tell me it's Loyola calling for me. They have a lung and I should leave for the hospital right away. So the family plan kicks into high gear and we gather what we need and get on the road to the hospital. We were instructed to go to the E.R. and tell them I was there for a Lung Transplant and when we arrived I was whisked right through, taken up to a floor and, as before, preparation for surgery began. Put on the hospital gown; put in TWO I.V.'s, draw blood, get a chest X-Ray and meet with the anesthesiologist. I felt very encouraged after talking with the anesthesiologist and we were all expecting this time was my time.

Of course, as we all know, they always warn us there is a chance it might not happen, and the fact that I am writing this Blog should be your first clue that I did not get my transplant that night. By 6A.M. the Transplant Coordinator called and said she had bad news. The lung was not worthy of being transplanted so I would not get my transplant tonight. I could go home.

The last time I was called in, I was a back up and had no expectations. But this time, the call was for ME. This was to be MY lung. Everything seemed to be going according to plan. I actually began to believe it would happen. So when it didn't, it was a lot harder this time than the last.

They moved quickly this time to let me get out and get home. The I.V.'s were removed and I got dressed and we headed out for home. I got to bed around 7:30AM and slept for several hours.

Friday was a hard day for me. I was very down in the dumps. I really felt this was my turn and the disappointment hit me hard.

Yesterday was not a good day. I felt physically worse than ever. I couldn't breathe, had a headache, felt sleepy even though I had slept well the night before. I nearly fell down on my way back from the bathroom I was so wobbly. 

Time for me to dig deep. Dig deeper than ever before. I must climb out of the swamp of disappointment and negativity and muster the power of positive thinking. So I've been working on putting together a Positive Affirmation, using listening to my music to lift my spirits. Before bed, I asked my Mother to take my hands and together we repeated three times: "I WILL get my transplant!"; "I WILL get my transplant!"; "I WILL get my transplant!". I am going to do this every night before I go to bed until I get my transplant.

I typed up my positive affirmation and it sits by me on the table next to my chair where I can see it all day and reflect on it as often as I want. This is it.

My Lung Transplant WILL happen;

I am strong;

I can heal;

I am healing;

I am  getting healthier;

I am getting better;

My health is improving;

I am healthy;

I am peaceful.

It's been a rough week for sure. It feels like I'm sinking in quicksand. But I am doing everything I can to stay positive. 

Man, this is hard.

"Think Good Thoughts" - Colbie Caillat

FINDING THE POSITIVES!

It's hard to find positives as I go through this Lung Transplant journey. Of course, the most important positive is that I was accepted as a transplant candidate so that's good.

But after that, it's hard for me to make a list of positive things. Of course, they're there if I stop and think about it. It's just very difficult to find them through the fog of pain, fear, shortness of breath, and the never ending waiting for THE call to come.

Well, I actually got very happy yesterday when I weighed myself. As many know who have ever been prescribed Prednisone, one of the lovely common side effects is weight gain. When you are given super high doses for extended periods of time, it really packs on the pounds. It didn't matter how hard I tried to stop the weight gain, it just kept coming. When I was in the hospital being evaluated to see if I would be accepted for a transplant, I met with the Transplant Dietitian. My instructions were to try to at least lose 10 lbs. By then I had been stepped down to the mandatory low dose of Prednisone required for all transplant candidates so I was told that should help make losing the weight easier. 

Being a compliant patient and wanting to do everything possible that I could so I would be accepted, I attacked the diet full force and have been working at it since I was discharged from the hospital back on May 3rd.

I am happy to report that I have now lost a grand total of 20.9 lbs.! I am so proud of myself. Being on this medication regimen, not able to exercise made it hard to accomplish this goal, but I did it. I called my Transplant Dietitian today to report in and she gave me an enthusiastic "atta girl!" She even told me to stop trying to lose weight and now I am supposed to work on maintaining my weight! WOW! That was good news! So there's another positive!

So I got that going for me. It does make doing the Rehab easier than when I started which is good. Another positive.

I got to see my Interstitial Cystitis doctor last week and get some much needed bladder treatment which was a big positive. My IC has had to take a back seat to my lung disease and I've just had to suffer through the pain. Even though it's very challenging I am going to resume doing at home treatments (bladder instillations). These are very helpful and while it takes a lot of energy for me to mix them up and administer them to myself, the relief is worth it. I'm going to give it a try and see if I can do these periodically. So that's a positive - well, for the time being.

My sister-in-law from California flew in over the weekend to visit me and that was a huge positive. My family is just rallying around me and showering me with support and love. I am truly blessed. The biggest positive of them all - family!

The list may not be long, but the positives are there. I have to focus on those to help get me through this most challenging of times. This waiting is SO hard, but wait I must. So in the meantime, I need to focus on the positives to help get me through.

The Positives.  They're there. I just have to look for them!

SUNDAY'S INSPIRATIONAL POEM & SONG FOR THE DAY!

As I struggle to "do this" waiting for a lung transplant, I am looking for all sorts of inspiration in any form to help get me through this. This poem spoke to me and so I chose to share it this week. 

"It Couldn't Be Done"

by Edgar A. Guest

Somebody said that it couldn’t be done, 

But, he with a chuckle replied 

That "maybe it couldn’t," but he would be one 

Who wouldn’t say so till he’d tried.

So he buckled right in with the trace of a grin 

On his face. If he worried he hid it. 

He started to sing as he tackled the thing 

That couldn’t be done, and he did it.

Somebody scoffed: "Oh, you’ll never do that; 

At least no one has done it"; 

But he took off his coat and he took off his hat, 

And the first thing we knew he’d begun it.

With a lift of his chin and a bit of a grin, 

Without any doubting or quiddit, 

He started to sing as he tackled the thing 

That couldn’t be done, and he did it.

There are thousands to tell you it cannot be done,

There are thousands to prophesy failure;

There are thousands to point out to you one by one,

The dangers that wait to assail you.

But just buckle it in with a bit of a grin,

Just take off your coat and go to it;

Just start to sing as you tackle the thing

That "couldn't be done" and you'll do it.

"Here Comes the Sun" - The Beatles

RESPIRATORY HEALTH AWARENESS SKYLINE PLUNGE!

On Sunday, September 7, 2014 here in Chicago, the Respiratory Health Association  http://www.lungchicago.org/ held their Skyline Plunge.  Twice a year, brave participants repel off the 278 foot tall signature lightning bolt on theWit Hotel to raise funds and awareness for the Respiratory Health Association's lung disease research, advocacy and education efforts!

A friend of mine made me aware of this event and that a friend of his, Richard Navarre, was doing the Plunge. As a Candidate waiting desperately for a Lung Transplant from a very rare disease, I jumped at the opportunity to support Richard and this event that is aimed at raising research funds and awareness for lung disease. I made a donation and I began spreading the word to help Richard reach his fund raising goal and raise awareness as well. 

When Richard caught word of my efforts and need for a Lung Transplant, not only did Richard repel off the top of theWit Hotel as he had already planned, he dedicated his Plunge to me and my need for that transplant! I can't tell you how touched I am by this and how much it means to me. It lifts my spirits when I desperately need it. I don't know how to express what his dedication means!

I want to thank Richard for taking on such a huge challenge to help raise funds and awareness and all who participated. Here are some great photos of Richard "taking the Plunge"!

THANKS RICHARD! 

INSPIRATIONAL QUOTE & SONG FOR THE DAY!

I am fighting very hard to stay strong as I wait for my Transplant, so this theme is something that really speaks to me right now. The reasons for holding on are many, too many to list. And so, I do; I keep holding on.

"Bring on the Rain" - Jo Dee Messina

TRY NOT TO THINK ABOUT IT!

Since my "false alarm" call for the transplant that didn't happen, I have spent this past week trying to recover from the emotional roller coaster that went along with that experience.  I'm still on the roller coaster. It doesn't seem to want to come to a stop! You get that call and even though I was confident it wasn't going to be my turn, there is still disappointment and so the hope you tried to keep with you through that experience disappears and the disappointment comes to the fore.

Anxious. That's what I feel the most these days. I was never one of those who, during stressful times, got that "knot in the stomach" as many do. Many lose their appetites; I never would. But this is a whole new ballgame. I do have a knot in my stomach all the time and my appetite has been affected. This is uncharted territory for me.

That feeling of anxiety of WHEN will the call come. How much longer will I have to wait. Everyone tells me they believe it will happen. My Lung Allocation Score is high enough that I should get a call when a match comes up. But it's waiting for that match. Aside from my score, the only other factors are blood type and size; i.e. a 6' tall man or woman cannot donate their lungs to me. So the donor has to be very close in size as I am and have the right blood type and then my score has to be the one that the UNOS computer system picks as next. It could happen at any time, or it could take six months or more or never. Hence the anxiety.

My other condition, Interstitial Cystitis, which this Blog was started to talk about, has been bothering me even more since this lung disease began. The pain is worse, all the symptoms of my IC are worse and I haven't been able to go see that doctor because it's a monumental undertaking needing so much portable oxygen, plus I can't sit in the waiting room for and hour or two and risk running out of oxygen because he's running late. But I finally called and spoke with his nurse and together we came up with a plan. He's a wonderful doctor and he wanted to do all he could to help me if I could get there. Well, it takes two other people and a suitcase on wheels filled with 4 spare oxygen tanks to get me there, but we managed to do that yesterday. I got my treatment and my bladder felt so much better it was worth all the hard work it took to get me there. My bladder felt better for a while.

We're going to do it all over again next week so I can go see my psychologist. I am long overdue for an appointment with her and all this anxiety needs some talking out. I need her help. But these trips take a toll on me and it's rough going.

Everyone says "try not to think about it".  Really? If there's something to do to take my mind off my situation, I've tried it. But it's the first thing that hits me when I wake up in the morning, and the last thing I am thinking about as I try to fall asleep at night listening to the oxygen & Bipap machines keeping me breathing.

It's hard. But yes, I am trying not to think about it so much. I'm not doing a very good job at that but I keep trying.

Try Not to Think About It! OK, I'll try!

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.