HAPPY THANKSGIVING (A BIT LATE)!

I have so much for which to be Thankful, I hardly know where to begin. My thanks and gratitude are in endless supply. I am SO thankful for my lung transplant and the Gift of Life I received a mere 3 1/2 weeks ago! It is truly astounding and not something I find easy to put into words. I am thankful my surgery went as smoothly as it did; that I had one of the top surgeons operating on me.

My FAMILY - well, there just are no words to express how grateful I am to have such a loving, supportive, encouraging (even when it must have been hard for them to do it for me) family that lifted me up and helped carry me through this journey, which is by no means over. In some ways, it's just beginning. They have STEPPED UP big time to help me and I love them all dearly.

To so many friends who have visited, driven, made meals, called and just listened when I needed it. I am so grateful!

This Thanksgiving is special on so many levels. Having had to be re-admitted to the hospital this past week due to some post transplant medication side effect issues, and being discharged just in time for Thanksgiving just adds to my happiness.

With much happiness, gratitude, and thanks, I want to wish everyone a Happy Thanksgiving!

Happy to be at Home on Thanksgiving

356 DAYS - MY JOURNEY TO TRANSPLANT!

Where to start.  Well, marking days on a calendar to track important events is something many of us do. To remind ourselves to do something, to remember important events. Well, I have been marking days on the calendar for the last year hoping that the most important date of all would show up in time. Unfortunately, the single most important date of all was impossible to put on the calendar. It was completely out of my control. 

I like control; those of you who know me well, know this. I dislike not knowing or not having control over most situations and have a difficult time dealing with it when that is the case. I’m getting better at this and if it’s one thing this journey has taught me, is well:

Sometimes we just have to suck it up and deal with it!

This has been a journey of the type I honestly find difficult to explain. I think, if you were to ask my family, watching me deteriorate at a very rapid & scary pace, unable to breathe, needing oxygen 24/7, barely able to speak let alone get out of a chair, I think they would tell you watching me has been hell on earth for them. Suffering through it has been no walk in the park for me either. Anyone with chronic illness and disease knows this, I am not special in this regard, but this Blog has always been about my journey, how I got through it, my successes, feelings of hopelessness, yet never giving up. A real mixed bag of emotions.

Dates I will never forget:

November 12, 2013: The day before I was fine (well as fine as anyone with IC on Disability can be). Then I wake up on this fateful morning coughing and wheezing. I figure I have a cold and will just have to ride it out. Great, a cold on top of my IC; just what I wanted. Weeks go by with repeated visits to my Primary Care doctor, moving up the scale from 1. it’s a cold; 2. well, maybe bronchitis - negative; 3. Probably pneumonia - negative. Next move, go to the hospital.

December 2-9, 2013: I was admitted to my hospital for testing and ended up there a week. I was assigned one of the most wonderful Pulmonologists (let alone doctor of any specialty). Throughout the course of that week, they threw the book at me test-wise. Yet my Pulmonologist said all the results were inconclusive, but felt it was likely Adult Onset Asthma. Discharged with many meds to treat that. Wrong. 

February 11-13, 2014: Between December and February I saw my Pulmonologists many times and each time, my symptoms were worse than before. He no longer believed I had Asthma and he referred me to multiple specialists who all thought they had their finger on it. Wrong again.  So my Pulmonologist calls me to say that he has a colleague up at Mayo in Rochester, MN who is willing, as a favor to my doctor, to see me and evaluate me! No problem; family goes into overdrive getting tickets and hotel reservations and I’m up there in1 day. What an amazing place! No wonder it has the reputation it has; my experience was amazing and everything ran like clockwork, having all the testing in the morning and then after lunch meeting the doctor to review the tests. I’m thinking he will have figured it out and prescribe treatment and I will go home and get better.

WHOA there! 

February 12, 2014 - Diagnosis is Idiopathic Bronchiolitis Obliterans. WHAT? It’s incurable and I will need a lung transplant if I am to survive! I just stared at him. How is it possible in a mere 3 months, I go from being fine to needing a lung transplant?!?!? They don’t know or understand it themselves. It’s rare, though they’ve seen it. A date I will never forget!

March 17-22, 2014 - Admitted to the hospital due to severe respiratory distress. My Pulmonologist comes to visit me, sits by my bedside with my Mom and delivers the news no doctor likes to deliver. I need that lung transplant or I am out of options. Well, at this point, one of only two hospitals specializing in lung transplants where I live in Chicago has turned me down and won’t consider me for one; says I’m too complicated. There is only one option left. My doctor promises to keep calling them until he gets through to them. Boy, did he fight for me!

April 1, 2014: I finally get an appointment with the Transplant Doctor at Loyola University Medical Center. It was a sobering appointment. They don’t sugar-coat what having a transplant entails: the good, the bad, the ugly. And it includes ALL of those and more. But at least he would take my case to the entire Transplant Team and they would decide whether to accept me. There would be further testing to do and once that was completed, they would make their decision. None of this moves fast. In fact, when your life depends on it, it could not seem to move more slowly. Another date I will never forget.

June 10, 2014: The call finally comes. I have been accepted and am now listed on the UNOS Transplant List! I cried tears of joy! At least now I had a fighting chance. Without this, there would be no chance. But as happy as one is to be listed, now it gets hard again as the waiting for “MY” lung to become available starts. There is no “date” that I can put on my calendar that says “Lung Transplant Day”. I must simply wait and hope that the call comes in time. Again, not easy for a control freak like me. But wait I do while watching the days on the calendar tick off.

In the meantime, I am required to go to pre-transplant Pulmonary Rehab, which was brutal and required much oxygen to get through it. But I did it! I told Loyola I would do everything they threw at me if it meant I could get my transplant. 

Tick, tock. The days on the calendar move slowly yet rapidly all at once. I get a call to come to Loyola as a “Back-Up” for a potential transplant. So off we go, only to discover, as I was the back-up in this case, the person in front of me got the lung and I could go home. This time my expectations were low so I was not too disappointed. Then in September I get called to come again and off we go to repeat the routine we went through before. We’re hopeful. Unfortunately, upon receiving the organ at Loyola and further examination, it was deemed “not worthy” of transplant, so I get sent home again. This one was tough to take.

So, the wait starts all over again. Every phone call that rings makes us jump. Is this the call? No, not today. Day after day, no phone call and each day that goes by with no phone call, gets harder and harder. You begin to doubt it will ever come. Staying strong through this is proving more and more challenging. But I want my transplant. So I continue my rehab and try to believe my turn will come in time. 

September turns into October and no call. Doubts and fears creep into your thoughts. Time is running out. Try to keep the faith.

NOVEMBER 2, 2014 - 11:30PM: I am getting ready for bed. Turning off the TV and my laptop when suddenly my cell phone rings. By now I know a Loyola phone number when I see one and this is Loyola! 

Mom hears the phone ring and comes running down the hall. Who would be calling at this hour on a Sunday, right?

Yes, it’s Loyola and my Transplant Coordinator telling me they have a lung for “ME”. We are to get to Loyola as SAFELY but quickly as possible. I am told that this looks good; my hopes are high and with good reason.

This time when we arrive at Loyola, the process is moving much faster. They are putting me through the process very rapidly. 

It’s what I’ve been waiting for but it’s scary, exciting and nerve wracking. But I want it. I am with my family and we decide to to send me into the O.R. with our favorite positive family saying ‘It’s All Good!”. 

And off I go to the O.R. Much of the first few days are a blur and my family has had to fill me in. But I woke up happy, smiling (well, once the intubation tube was pulled) and breathing! 

YES, 356 DAYS AFTER WAKING UP COUGHING,  I GOT MY TRANSPLANT!

My family tells me that the actual implant date is MONDAY, NOVEMBER 3, 2014! Put THAT on my calendar!  My family tells me it’s my “Re-Birthday” and we will celebrate this date too!

356 Days. 9 days short of one year to the day, I received the Gift of Life and I am so blessed, happy and grateful. Now, as I work at staying healthy and doing all I am supposed to do to keep my new gift healthy and strong, the next journey begins. 

                                                                          

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

While I struggle to cope with this lung disease and with waiting for “THE” call that never seems to come, I work hard to keep fighting to stay strong. I don’t win that battle every day, but there are days I do. So for the days I feel strong and to help on those when I do not, I found this poem very inspirational.

You may see me struggle 

but you won't see me fall. 

Regardless if I'm weak or not 

I'm going to stand tall. 

Everyone says life is easy 

but truly living it is not.

Times get hard, 

people struggle

and constantly get put on the spot. 

I'm going to wear the biggest smile 

even though I want to cry. 

I'm going to fight to live 

even though I'm destined to die. 

And even though it's hard 

and I may struggle through it all. 

You may see me struggle...

but you will NEVER see me fall.

(Source: http://www.familyfriendpoems.com/poem/you-will-never-see-me-fall#ixzz3HvVyzSyj 

Family Friend Poems)

"I Will Not Fall Down" - Tim McGraw

AT A LOSS FOR WORDS!

I haven't written in quite some time. For the first time since I started this Blog about Interstitial Cystitis, I have found it difficult to write. When battling IC and Volunteering as a Patient Advocate, I felt motivated and easy to find topics about which I wanted to write.

Since being diagnosed with Idiopathic Bronchiolitis Obliterans last February, and being told I needed a Lung Transplant, it has become harder and harder for me to find topics to write about without sounding like all I was doing was whining.

This is a journey unlike any other. I know there are others out there who are transplant patients that can relate. Much like when I Blogged about IC, other IC patients could relate. There are many people struggling with multiple serious and life threatening conditions. So I don't want to just write about how miserable I am. But I find it difficult and so I don't write.

I must go to Rehab every Tuesday and Thursday until I get my transplant. It's rough and I come home from each class feeling like I was hit by a truck. There are never ending appointments and tests to be done and getting anywhere takes a village with all the portable oxygen I need to take with me and the need for a wheel chair.  It's exhausting.

Now I got a call that I have to have another Angiogram in November. It's a UNOS requirement that certain tests be repeated (if they have not already done so) every six months. So it's already time to repeat this test. Let's get that done and over with as soon as possible. I can't believe it's that time already!

I'm told my Lung Allocation Score is good and the UNOS system is "looking" at me all the time but just hasn't found a match. The Transplant Team feels good it will come. I like their confidence because the longer I go without getting the call, the harder it is to feel confident. But I want to, so I try. Some days are better than others.

Emotions are all over the map, but they tell me I wouldn't be normal if that wasn't the case.

I have been at a loss for words.

I am doing everything they throw at me in order to get my Transplant. So let's get that Angiogram done. Got my flu shot today, Rehab Thursday today. Taking my meds as I am supposed to etc. Being the best compliant patient one can be!

I feel at a loss for words beyond expressing the same thing all the time. This is hard. One day at a time is all I can do.

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

As I wait for the call to come, I am constantly struggling to keep hope alive, so that's why I chose today's Inspirational Quote.

"Shine the Light" - Sugarland

I'M TIRED!

I'm tired. Physically tired for so many reasons. I don't sleep many nights from side effects of medications. This disease is exhausting; just trying to do anything leaves me gasping for air even wearing my oxygen and with it turned up. 

I'm tired. Mentally tired of battling the never ending fight of trying to staying positive that I will get my transplant in time. My Transplant Social Worker tells me this is perfectly normal and I shouldn't beat myself up for not feeling positive every minute of every day.

I'm tired. Tired of waiting for the call to come that never comes. Every time the phone rings my heart skips a beat and it's never the call. On the one hand time seems to have come to a complete standstill, while on the other I am rapidly approaching the one year mark when I came down with this awful, life threatening disease. How did THAT happen!

I'm tired. Tired of the never ending trek to Rehab twice every week until I get my transplant. Of course it's necessary and so I go. But it's exhausting and I come home each time feeling as if I was just hit by a truck.

I'm tired. Tired of the never ending doctor appointments and tests, being poked and prodded.

I'm tired. Even if I had a "good" night and actually slept, I get up, get dressed, have breakfast and seemingly minutes after that I find myself falling asleep and fighting it all day long. When I want to sleep I can't, and when I want to stay awake, I can't. So I'm tired.

I could go on but I'm sure I've made my point. I'm tired. I don't want to sound like a whiner; there a lot of people struggling with many different diseases who are fighting every day much the same as I am. I am blessed with a wonderful and supportive family. I am grateful for that.

But I'm tired. I no longer remember what it felt like to be well; to take breathing for granted. I'm tired.

HOW IT FEELS!

Today I had an appointment with my Transplant Doctor. He is encouraging that my transplant is coming, although as doctors do, it's always tempered with the warnings of "but you never know". I believe him; he has to be right. 

He answered all my questions. One lung not two. Left is first choice but they could do the right depending on circumstances. I don't care, just so long as I get one!

After that appointment I had to call my regular Pulmonologist to refill a prescription and I had some questions about oxygen so I asked to speak with his Respiratory Therapist who was kind enough to take the time to talk to me. After answering my questions, he made some very key points I wanted to share.

He explained that it's AIR that is not passing through my lungs properly, making it very difficult for me to breathe. I have been unable to describe what this feels like. He told me to tell people if they want to know what it feels like for me to breathe, try one of the following:

1. Layer 2-3 hand towels and cover your nose and mouth and try breathing for 5 minutes. No, really, try it.

2. Put a close pin on your nose and try to breathe through a straw (no cheating and letting any air in on the sides; tight seal).

3. I am moving air through my lungs at the same capacity as that of a small toddler. I am only using 35% of my capacity. 

That really drove it home to me and helped me understand what was going on inside my own body.

That's what it feels like to have Idiopathic Bronchiolitis Obliterans!

MUSINGS FROM A LUNG TRANSPLANT CANDIDATE!

I spend my days listening to the constant hum of the oxygen machine to which I am attached 24/7. At bed time, add the air from my BiPap to that noise. Makes going to sleep a challenge. Not to mention the side effects of my medication which cause insomnia. Sleep is elusive; sometimes it comes, sometimes it doesn't. Last night it didn't.

50 feet of oxygen tubing curled like a snake in my room that everyone is always trying to avoid tripping over, or even better, standing on and stopping the flow. I have to drag it around with me wherever I go, but am limited by how much distance the tubing gives me. I can only make it to the bottom of the stair case, so going downstairs means using portable oxygen but those tanks take over 3 hours to refill. With so many appointments I don't like using my portable oxygen at home; I want to keep those tanks filled and ready to go at all times. Trying always to avoid having the cannula yanked off my face; not as easy as one might think too!

Keeping track of the schedule of changing the nasal cannula, the oxygen tubing, washing the filters, adding water to the humidifier on the oxygen machine and the BiPap. Taking my meds. There is a never ending list of chores related to needing oxygen and being sick. If it weren't for my Mom none of this would get done!

The feeding tube the Transplant Team wanted me to have surgically put in because of my swallow dysfunction requires daily maintenance. I'm not using it yet but it needs to be cleaned, flushed, rotated. Post transplant it will go into use. But until then, I must keep it clean.

Every time a phone rings our hearts skip a beat. Is THIS the call? No, not yet.

Dealing with a trip to anywhere is a monumental undertaking requiring portable oxygen canisters and since they only last so long, figuring out how much we need to bring, how to transport it, can I get switched over where I'm going or will I have to stay on my own portable tanks? Depends on where I'm going. My brother has become my "expert" at handling all the tanks and I have dubbed him "Tank Man". He is a huge help with this!

I try to distract myself. I'm working on positive affirmations, listening to music to relax and take my mind off of it. It's hard.

The days go slowly when you are waiting for something you so desperately need. It's worse than being a child waiting for Christmas. And yet, here I am already 10 months into this; I'm shocked by that! How did that happen?!?! Yet, here we are.

Coughing fits that seemingly never end. Pain, exhaustion, I can't breathe.

Tomorrow I have a doctor appointment that will require two people to help get me there and manage my oxygen. Tuesday and Thursday are always Rehab. Each week a repeat of the one before, marked only by which doctor I may be seeing.

I'm listening to the humming of the oxygen. And waiting for the call. 

***   ***   ***

Bronchiolitis obliterans is a disease that causes destruction and scarring of the small airways of the lungs. As the scarring and hardening of the lungs gets worse, it becomes harder and harder to breathe.

This condition is essentially irreversible and treatment is mainly supportive. The lungs can never return to normal.

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!