A LONG WEEK BEGINS!

So today begins a long week of doctor appointments. However, the most important being tomorrow with the Transplant Doctor for evaluation in hopes of being accepted for a Lung Transplant. I don't know how much we will learn tomorrow, but I am anxious for it get here and get the ball rolling. 

I have other important doctor appointments starting today going through Thursday. It will be a challenging week but all are important appointments so I will take it one step at a time and we will make it through. 

It's being in the unknown that's so hard. I don't know if I'll be accepted for a Transplant. Waiting. Waiting for the appointment; waiting for the evaluation; waiting to hear if they'll accept me. I've never been good at waiting. I've always been what I like to call a "rip the band-aid off real fast" kind of gal! I don't like dragging things out. Let's just get on with it and get it over with as fast as possible. The sooner the better. So waiting is difficult. 

How long will I have to wait after my appointment tomorrow? Who knows. But wait I am sure I will have to until the Transplant doctor and his team make their decision. How long will that take? Even if I get accepted and put on the list, that's no guarantee I'll ever get new lungs. More waiting. 

The Home Health Nurse is due to arrive shortly and when she is done with me, we will head out to today's doctor appointment dragging my oxygen along with me. Ugh, that's a pain. 

I am already tired. Last night was a bumpy night. All evening as I watched TV, all was quiet and calm. The very minute I get up to go to bed, massive coughing fit takes over and goes on for an hour. My Mom gets up and comes to my room to sit with me to help me through it. She stays until slowly things calm down and I fall asleep and she can slip away quietly and go back to bed herself. 

I will hope for a nap when we get home this afternoon. And so the long week begins. One day at a time; one step at a time. 

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

"Courage is not defined as the lack of fear. Courage is doing it anyway, even though you are afraid. It’s the ability to take action in spite of fear, challenge, pain and uncertainty." ~Cynthia Perkins

"And I Love You So" - Don McLean

I AM SURROUNDED BY LOVE!

My family is a TEAM! Let me tell you. I am so blessed to have such a great family and I do not take it for granted. They are loving me and supporting me through this battle I am fighting. Supporting me at every step along the way. Helping me face potential Lung Transplant or the possibility I won't get one. Either way, they are here for me.

A few days ago I got a HUGE surprise! My oldest nephew from California flew all the way here to Chicago to surprise and visit me! I was overjoyed! Such good medicine! My family is rallying around me and I am Surrounded by Love.

Here, my tribute to the best family anyone could ever have!

(Click Arrow to Play Video)

IN SEARCH OF INSPIRATION!

This new journey I am on has changed the way I look at writing my Blog. It's not all about my IC anymore. This new lung disease and the desperate need for a lung transplant has changed everything. Sundays have always been the day I post an Inspirational Quote and Song for the Day. Going forward, I may post what I am feeling, or I may be in need of some inspiration myself, so may just put up a quote I like or song that makes me happy. 

Every day brings with it challenges and a search for inspiration for me now. To dig deep to find the fight inside me to do whatever it takes to beat this! So in the face of these challenges and in search of Inspiration, I found the following that I like and wanted to share.

“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.” - Unknown

FROM IC TO TRANSPLANT: A BRAND NEW JOURNEY!

If you follow my Blog, you know I am an Interstitial Cystitis Patient, ICA Volunteer, Fundraiser, Tweeter, IC Blogger & Passionate Patient Advocate for millions suffering with IC! When I was diagnosed I felt I had a choice about how to live my life with my new diagnosis. Did my life change dramatically? Yes it did. But I have worked to be a voice for awareness, education and a resource for others struggling to learn to live with IC. I still felt productive and this Blog has been part of my journey.

Then out of nowhere, when I think I have figured out how to live with chronic illness, yet another blow comes and tries to take me down! Idiopathic Bronchiolitis Obliterans! What the heck! 

Bronchiolitis Obliterans is a rare and life-threatening form of non-reversible obstructive lung disease in which the bronchioles (small airway branches) are compressed and narrowed by fibrosis (scar tissue) and/or inflammation. Bronchiolitis means inflammation of the bronchioles and obliterans refers to the fact that the inflammation or fibrosis of the bronchioles partially or completely obliterates the airways.

This came out of nowhere. I was cruising along, coping with my IC, Blogging, Tweeting, using social media to raise #ICAwareness and - BAM! - the next day I am laid low by something going on in my lungs!

It has been a long and difficult journey to unlock the mystery of what has happened to me and what is wrong including 9 days in the hospital here at home in December; multiple consultations with many specialists and even a trip to the Mayo Clinic. Finally at Mayo the mystery was unlocked and I am told what is wrong with my lungs. Idiopathic Bronchiolitis Obliterans. They have no idea what caused this. That's hard to hear. I should be used to it. We have no idea why any of us has IC either. Another week in the hospital just last week to try to stabilize me. 

But the lung disease is getting worse and very rapidly. I must have a lung transplant; that is the only option left. Urgency to seek out an opportunity for a lung transplant is paramount. One hospital has already denied me for a transplant. That was hard to hear. But yesterday I got the call from the second hospital and, thanks to my doctor's persistence and hard work, the doctor will see me next week and at least I get to be evaluated to see if they will take me on for transplant. A glimmer of hope shines in the distance. 

There are many obstacles in this path in order to get new lungs. Each a hurdle I must get over in order to make it to the next hurdle. One hurdle at a time. It's not easy. It's been very emotional and scary. I have struggled to dig deep to find the strength I need to get over these hurdles and not let the fear overtake me. I am working on it. 

This is a new and very different journey I am on now than the one I was on just 4 months ago. Along the winding road of IC, the road took a turn. A very sharp turn and I ran smack into a mountain standing in my way that I must begin to climb. As a metaphor, I think I've been just staring at the mountain for quite some time. Trying to figure out if I can climb it. Do I want to climb it. If I do try to climb it, how do I approach it?

This is the fight of my life yet I feel my battle with IC has taught me so much about how to fight. So I will try to draw on that strength. I want a fighting chance. Just give me a fighting chance. It's not a fair fight and I feel like I'm being ganged up on. But I have the support of so many family and friends who are trying to pull all those ganging up on me off me and help me fight back. I need their help. 

So next week I get to meet with the Transplant Doctor who will evaluate me and present my case to his team and see if they will take me on and give me the fighting chance. That glimmer that is so far in the distance, yet I can see it still. It's there; far in the distance, but it's there.

From IC to Transplant - this is indeed a brand new journey. A far different one than I was on before. And certainly not one I ever expected to have to take. But I am on it nonetheless. Reaching out into the darkness toward that glimmer in the distance. Just give me a chance. 

IN SEARCH OF PEACE!

A dear friend shared this with me after talking about my struggle with my lung disease and finding peace. I like it a lot and wanted to share it. 

"Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--DWELL about such things."

So in looking for things that I find beautiful, noble and praiseworthy, this picture is one that comes to mind.

Sunset on Lake Quinault, Washington
September 2005

LONG WEEK IN THE HOSPITAL!

So it's Friday already and I am quietly surprised I've been here since Monday. As has been the case every morning, I am awakened by the hospital staff again for my daily morning blood draw. They're running out of places to take it, so have moved on from my arm to my hand today.

It's been a long week with many tests, lots of meds, not so great news and working to understand how I got here and what is happening to me. It's been a roller coaster of emotions as I learn what we know about my new lung condition. I've written a few Blogs about it, but the clinical diagnosis is "Idiopathic Bronchiolitis Obliterans". Idiopathic is an adjective used primarily in medicine meaning "a disease or condition the cause of which is not known or that arises spontaneously". That certainly appears to be the case with me as the doctors cannot find a cause and this came out of nowhere and is kicking my butt and putting me in the fight of my life. 

The doctors are doing all they can to try to stop the progression of the disease but so far it's been a losing battle. Things seem to just keep getting worse and that's what landed me back in the hospital on Monday, with my symptoms worse again as they attempt to step me down from the high dose of steroids I am on. Every time we make an attempt to do that, my symptoms increase and things go downhill. Frustration. 

No one enjoys being in the hospital, but it's where I needed to be this week. I have had so much help and so many doctors coming to talk to me to see how they can try to help. But the bottom line is, I need a lung transplant. That's where we are. New lungs, or these old ones won't keep working. I've been denied for a transplant by one of the only two Chicago area hospitals that does transplants already, so my doctor is working to get me evaluated by the other hospital. We will see what they say. Meetings with many doctors to discuss if I can even be managed through the process since I have so many problems with anesthesia and pain meds. The Palliative Care doctor talked to me at length and he has ideas. It might be possible. So can I get accepted for a transplant by hospital #2? Ah that's the question. We shall see.

My family. What would I do without them? I am so blessed to have the most loving and supportive family. They are wrapping me in love and lifting me up as I face this battle ahead. I am so thankful for them. 

I am in a great hospital. Every single doctor, nurse, staff person - every single person I have had any interaction with has been beyond kind and caring. It's comforting. I need to dig deep and rally my resources that I have used to fight my IC and use all I have to fight this new battle. I'm working on it.

This is the biggest challenge I have ever faced. I will need all the support I can get. My family, friends and online team are sending me their well wishes. I can feel it. Thank you one and all! I will take it all in and hold it with me as I work hard to fight this latest health challenge.

STARING INTO THE DARKNESS!

I lay in the dark in my bed, late at night listening to the humming & whirring of the oxygen machine in the other room. Even though it's muffled by the walls between the rooms, I can still hear it. I am tied to it 24/7 now. I lay there and try not to think about it; try to think about anything else except this rapid decline in my health. We all know how that usually works; it's all you can think about. No matter how hard I try to think of other things, my thoughts just go down the long and winding road of what this means. The doctors have told me I am very, very sick. I "should" have a lung transplant but they won't give me one. I even got the formal written "rejection" letter - as I like to call it - in the mail the other day. I already knew this was the case; the doctor had called me weeks ago to tell me the Transplant Committee was not going to approve me for a transplant. Thanks, I needed to see it in writing to believe you meant what you said. I know, they have to do that. So if I don't have a lung transplant, what does that mean? And the circle of thoughts just keeps going and I can't fall asleep.

Why is it that everything is worse at night when you are sick? You can seem to do OK during the day. You think maybe you might be making progress; there are distractions. Then the night comes, and your symptoms are worse and your fears return and you can't fall asleep. All those drugs mess with my ability to sleep. I cannot breathe laying down, so I must attempt to sleep sitting up. With oxygen tubing on my face. Yeah, that isn't annoying.

So I stare into the darkness. Listening to the humming in the next room. Wondering what is going to be. Is the medication doing what it's supposed to do? Is it stopping this awful disease from getting worse? Will it work? For how long?

Close my eyes, repeat my positive affirmation. Try to switch focus and hope I will fall asleep. Sleep. So precious and so taken for granted until you can't. If I can just fall asleep, the brain will shut down and I will get a respite from all those thoughts and the whirring noise in the next room.

I reach out to see if the cat is there. She is and I pet her. It's comforting and relaxing to have her laying next to me. Focus on the purring of the cat as I pet her instead of the noise in the other room. 

Eventually sleep will come. Well, some nights it does. So now I just sleep whenever it overtakes me. Day or night. I'll sleep whenever I can. Whenever my mind quiets itself and allows me the relief that sleep brings. 

WAITING & WATCHING!

Waiting and Watching. That seems to be what we do. It's been 4 months - 120 days - since this lung disease struck out of nowhere. Bronchiolitis Obliterans. What the heck is that I want to know. I've been to Mayo. I'm working with the University of Chicago top Lung Transplant doctor, even though I've been denied for a transplant. It's been explained; I've seen the scans and read about it. But it is not well understood and little is understood about why a person gets it. How did I get here is all I keep asking myself.

It's this ongoing process of prescribing medication and come back in a few weeks and let's see how you are doing. We did that for 3 months and all that happened was that we missed what was going on and my lungs deteriorated to a life threatening state. I can't have a lung transplant so we are left to try to treat this with medications. Watch and wait. Right about now I kind of feel like watching and waiting is for the birds. 

Calls back and forth to all the doctors about symptoms that are getting worse as we step down one medication and start increasing another. OK, re-up that medication and see how you do. Am I better? I guess the coughing is better again now that we've re-upped the one medication. I am told to stay the course. Watch & wait.

Today I ask my Mom to take a look and confirm what I am seeing in the mirror - my lips are turning blue, even with oxygen 24/7. It's not severe, but it's definitely there and they are not the nice pink they were even a week ago. Call the doctor and report this issue and he wants to see me tomorrow. 

I have a lot to deal with and it's all scary. I don't want to overreact to things but I am not sitting around waiting for something bad to happen; if I have a question I'm calling the doctor. They are ever patient and kind and responsive and that helps. 

When I was diagnosed with IC it was a difficult time. I have had IC for 12 years and I've been on disability because of it for 4 years now. This was challenging enough, or so I thought. But this new lung disease has really thrown me. I have an appointment with my psychologist tomorrow and that's important. I have a lot to talk about and it will be good for me. Then we have to race over to the Pulmonologist's office since I called and reported the blue lips, he wants me to come see him tomorrow. So it will be a long and difficult day: dragging portable oxygen with me; getting a wheel chair at the hospital because I can't possibly walk from where we park the car all the way to the doctor's office, even with oxygen. 

Yesterday I discover that one of the medications I'm on was prescribed incorrectly and I don't have enough pills based on what the doctor instructed me to take. More phone calls back and forth to make sure I'm doing it right. Yes, I am and they'll call in more meds so I can take the right dosing. It's a good thing I'm paying attention and asked the doctor to write it down for me.

Waiting & Watching. I'm working on it. I need to work on using my Positive Affirmations. I found a new one that I like that I need to use:

I can heal

I am healing

I am getting healthier

I am getting better

My health is improving 

My lungs are getting better 

I am healthy

I am a healthy person

I am well

So I wait and we watch for any sign that things are getting better, or even that they are not worse. 

SUNDAY'S INSPIRATIONAL POEM & SONG FOR THE DAY!

Tomorrow Will Be Better Than Today

Written By: Praveen

its midnight and

my eyes just staring at the wall opposite

no sleep, no dreams,

i sit and watch the drama

unfolding before me;

like an empty canvas

waiting for an artist

i wait in anticipation

wondering when and wondering why;

i did all i could,

so i believe so,

what is happening is beyond my grasp

and i can only watch as a mere spectator;

a mere spectator in my own life

one moment its all the way up,

the next its hanging in balance,

the tension is nerve wracking;

patience is all i have

and patience is all that i need

as i watch the things unfold

and let things take shape at its own pace;

i waited a long time for this,

so what difference is it going to make

to wait a little bit more

but for how long should i be the villain in my own life;

i wish i could answer all the questions running in my mind,

i wish i could end all the battles being fought inside,

i wish i do not have to wait for long

i wish, i hope and i believe

maybe tomorrow will be better than today

"Slumber My Darling" - Alison Krauss & Yo Yo Ma

STABLE!

I'm starting to feel sorry for my IC. It's being ignored a lot lately since I got so sick with this lung disease. It was all consuming and took all I had to cope with having IC and several of the typical associated conditions. I'm on Disability because of it. I write this Blog because of IC. I try to raise awareness about IC from my comfy chair by using social media. I have raised money for IC research. I am a devoted Patient Advocate for those suffering with IC.

But since that fateful day in November, when I woke up coughing and wheezing and suddenly short of breath, things have taken a turn. I've Blogged about this new lung disease and will likely continue to do so as I find my way through this new medical journey. But my IC is taking a back seat to actually breathing. Coughing so hard for so long has not only cracked 4 ribs, but I can tell you that my bladder is NOT happy with me one little bit. What can I do? I can give myself instillations at home for now when I have the energy to mix up a cocktail. That's not often and it's so hard to expend the physical energy to do what I have gotten down to a science and can almost do blindfolded. Yet, I can't put the energy into doing it as often as I want. So my bladder pays the price. It's playing second fiddle to my lungs. And that's something I'm going to have to learn to deal with it seems, at least for now.

I saw my Pulmonologist yesterday. Last week I Blogged that the word of the day was "Stabilize". They did another Pulmonary Function Test in the office yesterday to see where I am since I began this new drug treatment plan. I've lost count of how many of these I've had now. But it is the test that tells the tale and as of yesterday, the doctor said - the test shows you are STABLE! I was not worse and while I was not better, I was where they wanted me - stable! It's been so important to stop the rapid decline and at the moment we have. The doctor also told me that I "looked" better and that I was talking better. OK, I'll take it. Stable was what we wanted and stable is what we got. Time to focus on that. It's hard, but I'm working on it. The doctor was very glad to be able to say those words to me, I think, and he wanted me to take them to heart.

Still working on not thinking worst case scenario. Need to work on that with my therapist. I need to see more than ONE report that says I am stable. To me, one report does not a trend make. But I am not the doctor and he is glad to see I am no worse. I should be too.

In the meantime, my poor IC bladder is screaming at me. Who even knows if some of it is because of all these new medications I am on. I will do what I can to manage my IC but for now, trying to get this Bronchiolitis Obliterans to stop in its tracks comes first. It isn't easy. I'm trying.

This isn't cheap either! As of March 1st I'm already in the Medicare Donut Hole! 8 weeks into the new year and I've already hit it! Yikes! I just found out that since I hit the Donut Hole one of the new meds will now cost me $2100 for one month! Just ONE of the drugs! More stress. I know many can relate as they have no insurance, so I know I'm not alone in this. But it's rough no matter who you are. I'm taking so many meds I made a check list so I remember to take what and when. That's just one drug's cost now that I've hit the Donut Hole. Two of my other IC meds came to $100 the other day; I was paying a $3 copay and now $100! This will all add up VERY, VERY fast. So much to think about and try to figure out. 

For now, I got the word the doctors all wanted - STABLE! STABLE is good. I'm trying to focus on that. 

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

This quote spoke to me today. I am trying to stay strong, have courage but I don't feel like I'm making it most days. But like the quote says, I'll try again tomorrow. So each day is a fresh start and if I didn't have the strength or courage I needed today, I will try again tomorrow!

"Angel" - Sarah McLachlan