IT'S A VERY HAPPY NEW YEAR!

I  cannot believe that it is December 31, 2014. Where has the year gone? When I came down with this mysterious lung disease in November 2013, I thought it was a cold and it would be a pain in the neck but I'd be fine in a week or so. HA!

Time moves at a different pace - or it seemingly does - when you get seriously ill. As my condition continued to decline and we couldn't figure out what was wrong with me, time seemed to stand still. I was miserable, finding it harder and harder to breathe, we could get no answers and so time seemed to drag on.

After our trip to the Mayo Clinic and finally getting a diagnosis, time started to feel like it was moving so fast and I was going to run out of it. My disease was incurable. They had no idea how I got it, but the only way to survive was to have a Lung Transplant! Shock is an understatement. Deer in the headlights is how I would describe my reaction to this news.

Being told you need a Lung Transplant and actually getting one are two completely different things. Just because you need one, doesn't mean you're going to get one. One hospital turned me down, saying I was too complicated and they wouldn't take me on! WHAT?? Isn't that what you do? Give people transplants that need them? Well, doing a little research one finds out that certain hospitals only take on cases they know will have good outcomes so their statistics stay up high, which can impact their federal funding.

I was very lucky that my doctor fought for me and he got the second hospital to at least meet with me. They agreed to evaluate me and next thing I knew they had accepted me into their program as a transplant candidate. I was listed with UNOS on June 10, 2014, a date I will never forget. Now the waiting begins for an organ to become available. Time is ticking away and it feels like it's moving at lightning speed because I'm running out of time as I get sicker and sicker. And yet, waiting is slow agony as well. You never know if an organ is going to become available for you. Will I get my lung in time? I've been told I'm running out of time.

Finally, the call came and I got my Lung Transplant! It's my Re-Birthday - November 3, 2014! I have a new lease on life.  Having a transplant isn't an easy thing and it's not the perfect answer but it is a life saving procedure if all goes well. There have been bumps in the post transplant road, but we are told to expect that. The Transplant Team knows how to handle them. So I must constantly monitor myself for any signs that my body is rejecting my lung.

The thing about transplants is that your body will NEVER, and I mean NEVER, accept the new organ as your own. It is constantly going to try to reject it and so fighting rejection is something we must do for the rest of our lives. I take about 60 pills every single day, a nebulizer treatment, I must check my vital signs every day and record them, I must do my Spirometry and right now, work on my physical therapy to regain the strength I lost while sick.

I look at time differently now. It's precious. I don't take a single minute for granted. I said before I got my transplant that all I wanted was more time. I'd take what I could get, but I hadn't had enough time yet. I have a wonderful family and I want more time with them.

For now, I've been given that extra time and I am so grateful. As everyone celebrates the New Year, I will be celebrating too, but in a different way. My New Year is also my New Life! The fact that I am still here, writing this Blog, enjoying my family and able to breathe on my own is truly a miracle!

I certainly will be celebrating the New Year, but not like most of you. I will be taking care of myself and my lung and probably be in bed when the clock strikes Midnight. 

So from someone who is truly happy to be celebrating the coming of the new year, I wish everyone a very HAPPY NEW YEAR!

Auld Lang Syne - Mairi Campbell

IT'S A MERRY CHRISTMAS!

I'm 7 weeks post transplant and things are going about as expected for a transplant patient, given we know there will be bumps in the road to recovery, but we just don't know what those bumps will be.

I've had my share. Side effects from medications, wound issues from the incision, pain, and we're waiting to get culture results to see if I have a lung infection. I'm on an antibiotic because the preliminary tests show something so they don't mess around when it comes to transplant and the Cipro was started immediately. 

This Christmas is so special. A year ago, I was sick. I had come down with this strange lung disease but we didn't know what it was or how to treat it. Now a year later, I've been blessed to have gotten my lung transplant and I am on the road to recovery. 

Like I said, there are bumps in the road to recovery. I had to be re-admitted to the hospital due to some medication side effects back in mid November. Now we're fighting what looks like it might be a bacterial infection; we'll see. 

But, this Christmas is not for reflecting on what I almost lost this past year but instead what I gained - my life. I am working on my rehab so I can get my fitness level back. I can breathe without oxygen. I am so grateful for the Loyola Transplant Team who got my my Lung and continue to take care of me even after discharge. 

Christmas is a time for being thankful and reflecting on the year gone by. I'm glad it's gone by. I do not wish to repeat it. I am so thankful for my new lung and the fact that I am on my way to recovery. My family has helped me more than I can say. There is just so much for which to be thankful that I run out of words.

I am blessed and thankful. My Christmas gift to my family is a huge hug and my love for standing by me. I could not have done any of this without each and every one of you!

This Picture Is Truly a Miracle!

I ALREADY GOT WHAT I WANTED FOR CHRISTMAS!

The Christmas Season is upon us. I can't believe December is half over and we are rapidly approaching 2015! I don't know what happened to the past year. My life changed forever but not in a way one wishes for.

It's been over a year since I developed the mysterious lung disease that would mean I needed a lung transplant. I still can't believe that this happened to me. Such a mysterious and rare disease requiring a lung transplant; where the heck did I get THAT?!

Idiopathic Bronchiolitis Obliterans; not something I ever expected to hear of let alone get! The doctors still don't understand how or where I got it. They never will and I guess it will remain a mystery from here on out.

As we approach Christmas, I am still recovering from my life saving lung transplant. I still can't believe I got my transplant! I seriously still find it hard to believe my lung came and I got my transplant! It is truly a blessing and a miracle. Just having doctors that can perform such a complicated surgery as a lung transplant is a miracle. And I got one of the best in Illinois. I am so lucky. My Christmas present arrived early and I cannot express how grateful I am.

We are going to have a VERY low key Christmas this year. No presents and just one of my brothers and his wife and my niece. My other brother and his family have issues and they, too, will be having a low key Christmas. We'll get to see them at some point and that's all that matters. All I want for Christmas I already got. I got my lung and that means if I take care of it, follow doctor's orders, take my meds and do all I'm told, then I get to live and be with my family. All I want is to sit with my family, share memories of Christmases past, enjoy our tree and rest. 

So I have many to thank for getting here this Christmas: 

-I have my family to thank for so much I can't even list it all, but without each and every one of them, this would not have been possible.
-I have so many friends to thank for calling, visiting, sending cards and gifts to help support me as I went through the process of trying to get on the list and then supporting and encouraging me while I waited for my lung.
-So many friends and neighbors who have driven us to countless appointments and brought us meals-this was so much help I cannot say, especially for my Mom.
-I have Loyola University's Transplant Team to thank for even taking my case when no one else would and saving my life! They are the "A" Team and I had a top notch surgeon, that things could not have gone better than they did. I was able to meet and shake the hand of the surgeon who saved my life. That will move a person to tears, let me tell you.
-Finally I have to thank the family of the individual who gave me the gift of life and donated the lung I received. I have no idea who they are but I am grateful beyond words. One day, Loyola will help me anonymously thank them and if they want to respond they will; if not that's OK too. I just want them to know how grateful I am.

This will be a very special Christmas; the best ever really. I am doing well after my transplant and we are so grateful. 

I already got what I wanted for Christmas - my family did too. I got my transplant. We will raise our glasses (mine filled with water) in a toast to my new lung and life. 

I have much joy in my heart to share with so many. Take time to be with those you love; you never know how much time you have. We will be enjoying Christmas in a whole different way this year; grateful for the gift of life!

MERRY CHRISTMAS

& 

HAPPY & HEALTHY NEW YEAR!

MY EARLY CHRISTMAS PRESENT!

I just realized it's been almost two weeks since I Blogged! It's been a BUSY two weeks; so much so that the days get away from me. There is so much to do every single day to take care of my post transplant needs, that it seems we do nothing else all day long but take care of me.

The morning ritual is the most complex. I am required to take my vitals every single day: weight, temperature, blood pressure, blood sugar, spirometry (not fun), medications. In addition, there is a place on my incision that is not healing well at all and causing me a lot of pain.  This requires wound care twice a day. My Mom has to put this special prescription ointment into the wound and that debrides the wound, then she has to pack it with a damp piece of gauze followed by covering it with a dry piece of gauze. In the morning, I must get in the shower so that the wound can be showered clean before being re-dressed. We have to change the dressing twice a day, although I do not have to shower in the afternoon. The wound care nurses at the hospital said if it does not look better this coming week, then I will have to see the surgeon. Fingers crossed we see some improvement!

The meds must be taken 4 times a day, so I must set alarms so that I don't miss taking any of my meds, many of which must be taken at very specific times - no excuses - (14 pills 4 times a day - close to 60 pills every day)!

There is at home physical therapy twice a week, but I am also expected to do my p.t. every day, twice a day - if I can find time for that second time that is! There is a medication that I must take via nebulizer, which requires mixing the medication from the vials and then using the nebulizer to administer the medication. This is not for my breathing, but one of the medications most transplant patients take is an anti-fungal, however, the one I was taking caused my liver enzymes to increase to dangerous levels, so we had to stop that medication and switch to a different one. The only other one happens to be this one that you take via nebulizer. It tastes AWFUL and burns the back of my throat and often makes me cough. A necessary but unfortunate side effect that I must just learn to deal with!

I have had multiple doctor appointments, lab tests, my first Bronchoscopy. There are constant changes to my medications which means updating my 6 page list so I get it right; making sure my pill box gets updated with every medication change. Just filling my pill box takes 2 people over an hour to fill! 

I have the best team helping me and I am so thankful. My medical team, my family whose help is SO invaluable. This is a lot of stuff to remember and it really takes a team to help me get it all done and done right.

The Transplant Team told us it would be like this; they didn't lie! It is a never ending process on which I must focus and it's key to keeping my new lung healthy and working for me as it should. 

It's been a bumpy month since I was discharged after getting my new lung, I'm not going to lie. But it is definitely worth the effort. I see that I am making progress and the doctors are extremely happy with how I am doing. I like hearing that! Now if we could just get this wound to heal and the pain to subside, I'd really be happy. 

But this Christmas is a far cry from last Christmas when we didn't even know what was wrong with me. Here we are a year later and I got my Christmas present early and I have my new lung and I'm breathing on my own with no oxygen. It's all I ever asked for. I couldn't be happier about that!

Yes, I got my Christmas present early! I have lots to celebrate this year!

My Medication Table!

My Pill Box!

My Spirometry Device!

Doing my Spirometry!

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!