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!