Monday, September 15, 2014

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, September 14, 2014

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





Monday, September 8, 2014

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! 



Sunday, September 7, 2014

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


Saturday, September 6, 2014

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!





Sunday, August 31, 2014

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



Saturday, August 30, 2014

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!