FAMILIAR FACES IN THE HOSPITAL!

You know you've been in the hospital a lot when you are being wheeled onto the floor and the nursing staff, aides and everyone you see remembers you! Every Nurse I had yesterday after being admitted again Wednesday evening remembered me from not only last month when I was here for a week, but all the way back to December when I was here for 8 days! That's something. Not sure what - but something.

I think it's a good sign that they take their jobs seriously and actually care about their patients. Either that or I just made one heck of an impression. Which again, I'm not entirely sure is a good thing but I'll choose good.

My need for a lung transplant is ever present and as I've Blogged recently, I've been waiting to hear back from the second hospital about whether they will take my case. I wrote that the doctor was on the fence but didn't say no but wouldn't say yes. He wanted to take my case to the entire transplant team and discuss it. So I waited. It took longer than expected and SLOWLY the weeks ticked by while I waited to hear what they would say.

So finally last Friday - late - the call came. The biggest obstacle to having a transplant is getting my dose of Prednisone reduced. I am on a very high dose to keep me stable (60mg) and no transplant patient will be considered (so my transplant doctor tells me) for transplant surgery until they can step your dose down to 10mg for a significant period of time prior to surgery. We've tried 3 times and every time we try, my condition worsens and I land in the hospital. But the call from the transplant hospital said they had an idea and wanted to admit me to attempt to step me down in a medically controlled hospital situation. So I agreed. But there were delays again and by then I was having more trouble breathing and landed back in my hospital on Wednesday evening. Which is where I am now.

The good news is yesterday the transplant hospital spoke with my doctor and said they will still do the testing and transfer there to do it. We were optimistic yesterday morning that I would get transferred yesterday. But then I was told they don't have a bed for me. So here I am waiting - still.

Sleeping with all these meds has been very hard to come by and Wednesday night I didn't fall asleep until 4AM. Last night I actually fell asleep at 10PM and slept until 3:30AM but my IC bladder had other ideas, woke me up and then I could not fall back asleep. Then shortly thereafter, at 4:30AM I was visited by the nurse with meds and the aide to take vitals and blood. So now I am wide awake still and it's after pushing close to 6AM. Guess I'm not falling back asleep tonight.

But here's the part I love! So there's even an IC component to my post today from my hospital stay. I had this lovely young nurse all afternoon and at one point we were talking about all my health issues and she knew what IC is - which is, as we know - rare. I asked her how she knew about it. She said her mother who is also a nurse has IC and sees my same doctor, who she had seen visiting me today (YES, my IC doctor found out I am in the hospital and came to visit me!). So I turned into IC Advocate mode and gave her info on the ICA website, ICA Facebook page and the name and email of my LOCAL Support Group Leader and suggested she contact her to see about joining our Local Support Group. She took all the information down and seemed truly grateful and that she would pass it along to her Mom. I hope she does. I then called my Group Leader and told her about it! It felt good to be doing some IC Advocacy again and try to help someone and not think of my lungs for a change. 

I may be down, but I guess I'm not "out" yet. Still fighting for IC patients whenever I can!

In the meantime, I wait for transport to the transplant hospital surrounded by all these familiar faces working so hard to take care of me. I am grateful for their kindness and the fact they remember me. It makes having to be in the hospital just a tiny bit more palatable. 

But I really must stop coming here. I know my way around and it seems, a lot of staff, better than a patient should. But if it's one thing all these hospitals stays CAN and should teach you, it's how to be your own best advocate, be proactive, ask questions and don't be afraid to feel silly doing so. 

So, here's to getting transferred today sometime. Let's get this show on the road and see how many new "friends" I can make at another hospital!

RALLYING AROUND!

Well, this horrendous, life threatening disease that I have has done one thing. Everyone who loves me is rallying around me to be there for me as I go through this battle for life. My family has always been close and we all know we love each other. But since I've been sick, fighting to save my life and hope for a lung transplant, my family has rallied around me to let me know how much they love me, support me and are here for me.

My friends are doing the same. Calling, visiting, emailing, Facebooking, sending cards and inspirational gifts to lift my spirits. Everyone who is dear to me is "showing up" to let me know they are here for me. Asking what they can do to help, checking in on me and letting me know they care.

My Interstitial Cystitis "family" is rallying around as well. Offering prayers, holding an online candlelight vigil, sending flowers and cards. These are people I have never met except online and yet they are there for me supporting me and caring about me and doing all they can to help me through this.

I've posted about this before, but to have so many Rallying Around me showing me their love and support is helping in ways I cannot even begin to express. But each of you has made a difference in my journey and I am forever grateful!

Last weekend my brother from California flew in to visit me and we had a wonderful family weekend filled with love, laughter, tears and support! It meant the world to me. My nephew took and old childhood story I've been telling so long and got me a gift that he knew would make me laugh because he wanted so much to do something to make me happy. These are just a few examples of what all those I hold dear are doing to help me.

Now I am waiting to hear from Loyola University about being accepted for a Lung Transplant. There is testing they want to do in the hospital to see if they can get me to a place where they could get me on the transplant list. I am waiting for instructions. Why is it that these things seem to take forever to get scheduled! Tick tock! So we wait. I don't like waiting, but so it must be. 

I still can't believe I have this lung disease and that if I don't get a lung transplant, I am out of options. How did I get here? This is surreal. But everyone is Rallying Around and holding me tight and helping me face this very scary battle. 

I love you all!

Me and My 3 Fantastic Brothers!

"Blessed" - Martina McBride

FACING FEAR!

As I come to terms with the fact that my lung disease will not get better, I must learn to face fear. How does one do that? How do you stand your ground, knowing how you are losing the battle, and not be scared? 

Denying the reality doesn't do any good. I like to know things. I like to plan. I'm a planner. I want answers. I want a deadline. I'm not getting one. For me, not knowing makes the fear worse. So how do I deal with that? 

I think, in part, it's about focusing on what I love. Spending time with family and friends I love. Finding a way to DO anything at all that I love; that gives me happiness and joy. Sitting outside on the deck with my Mom one day last week was glorious! The sun shining, watching the birds and seeing the very tiny signs of Spring trying to sprout forth. I loved it. Today I sat in my office and just spent some time looking out the window enjoying the beauty of nature right outside my own home. It made me smile. 

This is a work in progress. I doubt I'll master it, but I will work on it. This quote resonated with me and my niece will love it too. But I feel it is also true. I wish I had never gotten sick, but there is nothing to be done about that. So in the meantime, what do I do with the time given to me? Make the most of it. That, I guess, is how I will find a way of facing my fears.

(Frodo)  I wish all this had never happened.  

(Gandalf)  So do all who live to see such times but that is not for us to decide.  All that we must decide is what to do with the time that is given. - The Lord of the Rings, J.R.R. Tolkien 

Music from The Lord of the Rings

LOVE & GRATITUDE!

Normally on Sunday I post an Inspirational Quote and Song for the day. It was not a good day for me today and I was not up to posting.

However, these past few days have shown me I have MUCH for which to be grateful. I have been showered by love from my family (bringing me meals and visiting), friends (messaging and calling and praying); my IC Community of friends (holding an online candlelight vigil for me) as I fight this lung disease.

So in lieu of the usual, I here is a song I love that is dedicated to each and every person who is reaching out to support, encourage, love and help me battle this illness. This is for each and every single one of you!

THE FACE OF BRONCHIOLITIS OBLITERANS!

This is my video journal of what it's been like for me since being diagnosed with Idiopathic Bronchiolitis Obliterans. 

The first photo is over a year old, but every other photo in the first half of the video was taken within less than weeks of becoming sick with the rest showing the rapid decline since then of my health and how the side effects of all the medications have taken their toll on my body.

I realize many people must take these medications for many reasons and I am not alone in having to deal with these issues. But, as has always been the case with my Blog, this is about my personal journey through my illness and raising awareness. Since realizing how little is known about Bronchiolitis Obliterans, again I am determined to put a "Face" on it and try to raise awareness.

So, this is "The Face of Bronchiolitis Obliterans" - MY journey since being diagnosed.

THE BIG UNKNOWN!

I've said this before, but I'll say it again. I started this Blog when I was diagnosed with Interstitial Cystitis because I wanted to find a purpose in learning to live with a chronic, incurable and painful disease that is not well understood.

Those of us in the IC community often comment on how we feel so little is known about IC and how much more research we need. I could not agree more. Part of my decision to become involved in volunteering as an ICA Patient Advocate was to help raise awareness, help others become better educated patients and do whatever I could to help others suffering with IC.

Now I find myself in this new health crisis. If I thought I had a disease about which little was known before with IC, let me tell you Idiopathic Bronchiolitis Obliterans is even less understood. There is little to zero information about it to be found to explain it; well at least explain why I have it. There are reasons people can get it. It can be from exposure to certain chemicals and toxic fumes; lung transplant patients get it as part of the rejection process (ironic considering my only option is a transplant); HIV patients can get it; and it can be caused by reactions to certain medications, although the information available on this cause is EXTREMELY limited. And, lastly, we are left with Idiopathic - medical speak for "we just don't know". The only two that have any POSSIBLE bearing on my case are drug induced, which we cannot prove one way or the other or Idiopathic. So my clinical diagnosis is Idiopathic Bronchiolitis Obliterans.

We have no idea how I got this and my attempts at trying to understand it are met at every turn with frustration and lack of information. There are no answers. When I was diagnosed with IC, I did what many of us do and began researching IC and reading all I could find. And realize now how much information there really is out there about IC. And 12 years later, as I have worked to advocate for IC patients, there is so much more information than ever before. Do we need more info? Of course. But when I compare what is available to those suffering with IC to what I'd like to know about my lung disease, I am stunned by the lack of information and understanding.

Doctors need to research the potential link between medications causing this. The doctors have all said there is a chance that's what caused me to get this, but so little research has been done they will never really know. We need to know. If medications presumed safe are responsible, we need to know about it.

Even my own doctor has told me he has spoken to many doctors about my case, asking if they've ever seen anything like this. He has found no information. All the doctors I have consulted admit they are shocked by the speed at which this has progressed. They cannot believe in 3-4 months I went from not having it, to needing a lung transplant to save my life. That's fast!

Friday is the day I expect to hear from the second Transplant Team about whether they will accept me as a transplant candidate. I have already been turned down once. So I wait to see what this team will say. 

In the meantime, I take a ton of medication trying to stabilize me. The side effects are nasty but there is nothing to be done about that. My life or side effects. I'll take my life. 

But I am living in the Big Unknown on so many levels. I think everyone can relate to that. We want answers and when we can't get them it's frustrating. I will never know why this happened; I will never know why I got IC either. 

The Big Unknown; it's not a fun place to live.

SUNDAY'S INSPIRATIONAL QUOTE & SONG FOR THE DAY!

A dear friend sent this to me to inspire me and it just hit the right note so I wanted to share with all of you!

"Courage Is" - The Strange Familiar

AN ANGEL TO WATCH OVER ME!

Yesterday I was surprised to receive a package in the mail from a friend and former co-worker. I was not expecting anything so could not figure out what it might be. As I opened the box I discovered the loveliest little gift sent to me to help me as I fight this lung disease.

An Angel to Watch Over Me! These figurines are called "Angels of Healing" and are by
Artist Susan Lordi for Willow Tree. The message from the artist, Susan Lordi, that comes with the sculpture says the following:

"Willow Tree is an intimate line of figurative sculptures that speak in quiet ways to heal, comfort, protect and inspire. This piece is cast from my original carving and then painted by hand. I try to keep the interpretation of Willow Tree open. I hope this makes it more personal and allows you to decide its meaning. May the simplicity of these figures communicate peace and serenity to you and those you love."

The artist hand carves each figure from her studio in Kansas City, Missouri. Expression is revealed through gestures only ... a tilt of the head, placement of the hands, a turn of the body. The simplicity of form and the absence of facial features signify Willow Tree. It is Susan's hope that these pieces be meaningful to both giver and receiver.

http://www.willowtree.com/

I cannot say how touched I was to received this gift from out of the blue. And the intent behind it truly is meaningful to me. That the interpretation is left to me to see what I see in it; to take what I feel from it. I really like that. 

So I have an Angel to Watch Over Me; to inspire me and protect me! The kindness of this gift truly touches my heart and I am so grateful to have so many people who are reaching out to help me as I go through this battle.

DON'T HOLD BACK!

I was emailing a dear friend who has been a source of support and strength as I face this life threatening lung disease. She wrote me something that really struck home and I wanted to share it; I hope she won’t mind.

This is what she said to me:

“Hoping you are finding ways to embrace the beauty in your life in the midst of your tiredness and pain – and surrounding yourself with those who love you..... Remember, your tears are an expression of your love for life, and your ability to experience intensely – so no holding them back to protect others!”

I found her words so comforting and they really touched me. This is how I feel and what I am experiencing as I go through this new journey I am on. 

People find it hard to watch someone they love cry, but for me it is an  expression of my love of life and my family. I am letting everyone I care about know that they mean something to me. I’m not wasting time holding grudges. If it’s one thing this has truly hit home is that life IS too short. You never know how long you have. Make the most of it. Tell everyone you love that you love them and do it often. It feels so good! 

TODAY: TRANSPLANT EVALUATION - STEP 1

Today is the first step. I am nervous, anxious, scared, hopeful. Today I get to meet with the Lung Transplant Doctor that holds my fate in his hands. Literally in his hands. Today I go to be evaluated to see if he and his team will consider me for a Lung Transplant. This is my only option and I need them to take me.

My lungs are failing me and I need new ones. This doctor and his team can give me the CHANCE. I just want a chance. I know getting accepted and put on the list for transplant is no guarantee. I may still never get the lungs I need. But if I don't get on the list, I have NO chance. So I want the chance; I NEED the chance.

I do not know what to expect today beyond meeting with the doctor. Will there be any tests? I doubt that I will be told today if they will accept me or not. I am sure they will evaluate me and then the entire Transplant Team will likely meet to decide whether or not to accept me. How long will that take? 

Can I say or do anything to persuade them? Or is just cold, hard, medical facts and nothing else that they consider? Having been denied once already, I am going to this appointment with a different attitude and ready to make a case for myself; ask different questions. 

But my fate is in the hands of the Transplant Doctor and his team. They will decide if I get a chance or not. So off to the hospital we go - my Mom and one of my Brothers. Part of my Support Team to demonstrate that I have a support system in place to help me through the process. This is important. 

I hope there will be a Step 2 that comes with being accepted. But here we go; Step 1 is underway as we head to the hospital.

"Calling All Angels" - Train