It ain't easy being green or sick...

So being sick is obviously a drag.  I know of no one that is ever excited about being sick.  And when I say sick I mean chronically ill.  Its mentally, physically, emotionally, and spiritually DRAINING.  My illness will not go away, there isn't a short-term rehab period, a short recovery phase, it is LIFELONG.  And lets be honest it may kill me.  This isn't a mind frame that one normally has to face in their 30s.  I know of very few who are thinking about their breath throughout the day, very few who face a life altering surgery where your chest is wide open from right to left and which may kill you on the spot, very few signing a living will before that aforementioned surgery, and very few whose choices to have a family or not are taken away.

Its lonely being sick.  Sure I have support which I am grateful for but very few people know of my daily struggle or have witnessed my daily struggle.  My husband (God bless him) has seen the many shades of me.  He gets to deal with my bitchiness regularly which isn't fair to him.  I come home drained and just don't have it in me to be happy and polite.
Its lonely because lets be honest--who wants to deal with the magnitude, the gravity, the REALITY of my situation.  Many people stay safely on the border--looking in and watching cautiously,  some stepping in quickly then back to their life. 
I don't blame them but often wonder why.  Well my therapist gave me some insight today--the American culture doesn't deal well with loneliness.  Look at the many elderly in nursing homes--many have no visitors or their family visits them out of duty.  If we could handle lonely situations we wouldn't feel the need to always be doing something, pack our calendars to the brim, constantly moving.  We hear a sad song, it may pull at our heart strings for a moment--bring up a memory or two but we don't stay in that moment long.  Its too uncomfortable, gotta listen to something upbeat/happy--gotta move on!
Well I can't leave my situation, it is all encompassing.  There isn't a day or even a hour that I'm not reminded of my reality.  And to be frank, IT SUCKS!!!!!!!!!!  Its lonely.  I can't even think about my situation for too long ---its WAY too scary.  I gotta keep moving.  That's what we do--keep moving, otherwise we get lonely.
I know I don't travel my road alone, I'm so thankful for the support I've seen over the last 3 years.  I would be in a much scarier place without it.  But my road is one not well traveled and there are definitely ruts and valleys where I feel alone. One day at a time, one day at a time.

I'm tired, I'm worn...

This song below speaks volumes to me. I really feel like the words were written for me.  I'm having a bit of an upsetting week- I wonder if there will be anything easy in our lives. Physically I'm having a bit of a setback and trying to lay low as I was diagnosed with double pneumonia on Tuesday.  I hadn't been feeling well since Friday.  I've never gotten as sick as I now do since my BO diagnosis.  I've never had pneumonia until this disease invaded my lungs- and I've had it every year since my lung biopsy.

Yes I try and maintain a happy demeanor but some days like today I'm screaming inside: "ENOUGH!"  How much can one person take?!??!? I've had physical issues since I was 2- as far back as I can remember and now the pathway before me is a double lung transplant which is NOT curative?!?!? This is mind blowing, unfathomable, and completely unfair!  LIFE IS UNFAIR!  I know people personally that have skated thru life untouched and it angers me.  Yes I'm aware "you don't know what it's like to be someone until you walk in their shoes", but I've seen many ungrateful and selfish people that abuse their body and take it for granted.
Yes I'm aware God did not promise smooth roads and challenges are a guarantee, but when is enough  enough???????
I'm not even going into the challenges my son faces with his speech apraxia or the fact that a six year old has such severe sleep apnea that removing his tonsils didn't help and he has to wear a c-pap. Really? A six year old? So I did go into some of the other issues are family has to deal with but this blog is mainly about my journey.  That gives you just a taste of the other battles being fought.

I know God is there but right now I have a hard time feeling Him, does he hear my cries, does he feel my anguish?  I need something to go right, go smoothly, go without battle.

So please take time to read the lyrics, listen to the song, and pray for our family.



I’m tired, I’m worn
My heart is heavy
From the work it takes
To keep on breathing
I’ve made mistakes
I’ve let my hope fail
My soul feels crushed
By the weight of this world
And I know that You can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That You can mend a heart that’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
‘Cause I’m worn

I know I need
To lift my eyes up
But I’m too weak
Life just won’t let up
And I know that You can give me rest
So I cry out with all that I have left

Let me see redemption win
Let me know the struggle ends
That You can mend a heart that’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn
‘Cause I’m worn

My prayers are wearing thin
I’m worn
Even before the day begins
I’m worn
I’ve lost my will to fight
I’m worn
So Heaven come and flood my eyes

Let me see redemption win
Let me know the struggle ends
That You can mend a heart that’s frail and torn
I wanna know a song can rise
From the ashes of a broken life
And all that’s dead inside can be reborn

Yes, all that’s dead inside will be reborn
Though, I’m worn
Yeah, I’m worn

By Tenth Avenue North


http://m.youtube.com/watch?v=UUEy8nZvpdM

How to save a life...

It's really simple...sign up to be an organ donor! Www.giftoflifemichigan.org or www.organ donor.gov

I never get tired of seeing programs about organ donation and the process. I just watched NY Med ( thx Kelly) and a young man was waiting for a heart transplant. He got the call and he seemed so calm and him mom was freaking out.  The heart was in ice for 6.5 hrs which is a bit long and his new heart had to be shocked many times but it started!

The mother said the waiting is a very unnatural way to live and she's right.  I just want to be free- free to breathe, free to run, free to travel, free to eat whatever I want , I want to be free.

There have been a few misconceptions about the transplant process, let's clear them up.

1. I do not know when my surgery is, this is something that is NOT scheduled.  I get my surgery when someone dies! There is no other way. That's heavy- I will have someone's lungs inside of me. I hope they like me ( I eat pretty healthy except for chocolate ), I hope my internal body is welcoming as it will be seen as a foreign invader and my body goes on attack mode.  This is why I'm given so many immunosuppressive meds.  Acute rejection is pretty common in first few yrs, it's the long term rejection that is a MAJOR problem - I will then have another type of BO-chronic rejection BO.
2. I do not know when the call will come- wouldn't that be nice tho?  I could make sure I was clean and spiffy before my chest is ripped open.
I have a feeling the call will come in the middle of the night or when I'm seeing patients at work. Chaos will surely ensue.

3. Lungs are hard to come by- most motor vehicle accidents that cause death also cause chest trauma.
4. Transplant is NOT a cure. 

https://m.youtube.com/watch?v=W7xocblW6mI

Testing, testing, 1, 2, 3

So I'm still awaiting my life changing phone call, it's been about a month since I became active again at U of W.  Overall, I don't feel as anxious as I did  last year when listed.  It feels like this is the right time.
I am still working and will continue to do so as long as I can. I don't think I could stay home, my mind would go into overdrive and focusing on others is much easier for me.  I arrived home after work this past Weds and my phone starting ringing that special tone set for Wisconsin. Some of you know it's a loud obnoxious fog horn.  Oh crap I said- that's Wisconsin I said to my mom.  It was my coordinator and the first thing out of her mouth was, "Joyce, It's Kelly- I'm not calling you in, I'm not calling you in."  I started to breathe again.  But Kelly wanted to go thru a play by play on what would happen when I get called since I have to get over Lake Michigan in a certain amount of time.   She was checking if I had all my ducks in a row.  I told her I would call my pilots and once we were close to Madison I would call one of two cab local companies to take me to the hospital.
We got the plan, and hopefully is all goes so smoothly when the actual call comes.  I am a little nervous that the pilots won't answer when I call because their cell phone will be somewhere else- who carries their cell phone 24/7?  But I texted one of the pilots Randy as a little test last week and to my amazement he responded within a minute! Whew! Thank you Randy! Thank you God!

Overall, I'm feeling ok physically - just always so tired.  Praying for perfectly matched healthy young lungs- which is another blog sometime- someone has to die so I can live. That's heavy, to all the organ donors out there- THANK YOU for passing on the Gift of Life.

Its official-back on the list!

Well BCBS approved the transplant today and I got the call at exactly 6pm that I was back active on the list.  I was not anticipating this call this evening.  I last talked to my coordinator last Friday and BCBS wanted updated labs, updated social work note, and a recent pulm note.  I got my labs drawn Saturday and faxed them to Wisconsin on Monday.  I called today to make sure they got my fax, my coordinator wasn't there so I talked to another who couldn't find the labs.  I refaxed them and he said he would watch out for them and contact the social worker.
I anticipated a follow up call from my coordinator after the holiday weekend.  Well a little over a hour ago I got a call from a coordinator I have never talked to saying they were putting me on the active list and my phone needed to be on my side 24/7.  GULP! This was not my plans for the holiday weekend! A long weekend with a nice sunny forecast meaning a lot more motorcycles out and holiday weekends unfortunately equal increased accident rates! It is my reality that someone has to die for me to live.
Its in Gods hands and His timing is perfect.  Please pray for perfectly matched lungs, a successful recovery, and long active life. This is scary!!!!!!!!!!!!!!!

And there it goes-lung function dropping...

We returned to Madison, Wi this past Monday for a routine follow up.  After my local visit with my pulmononolgist in late March where my lung function was 22%, my doc called Wisconsin to alert them and to discuss returning back to the active portion of the transplant list.  They called and wanted me sooner than April 21 but due to extenuating circumstances I wasn't able to get there sooner. They asked if I could wait to discuss the transplant list and I felt I could.
Monday's visit included labs, breathing tests, blood gases, 6min oximetry, and clinic visits.  My spirometry revealed a lung function of 19%.  I didn't walk as far during my 6minute walk but still walked further than most with severe lung disease.
During our clinic visits, we met with a pharmacist who reviewed all the many post-transplant meds I would be on and the enormous side effects that come along with the meds.  Its mind boggling.  The transplant coordinator came in and reviewed the protocol on being on the list and the need to get there in a timely fashion.  The transplant doctor came in and after seeing my numbers suggested I go back on the active portion of the list.  He stated that overall currently there is a shorter waiting list and a short A+ (my blood type) list, meaning that I may get a call sooner than the average 9-12mos.
He also suggested that I may need to stop working, I see sick patients and being on the list its important to stay as healthy as possible and as strong as possible. That is a hard pill to swallow, but something I will contemplate. I'm not looking forward to having the phone on me 24/7 or the tremendous battle before me.
Another glitch is my husband just started a new job last wk and our insurance will be changing to Blue Cross Blue Shield. I need this to be a seamless switch, pls pray that it is.  Benefits started on Day 1 which is great but not sure how BCBS is to deal with. I've had Priority Health for the past 16yrs and I know what to expect-I'm sure they are breathing a huge sigh of relief seeing me go.

Pray for perfectly matched lungs, seamless insurance switch, and the wait to be short.

So for now I must:

April is National Donate Life Month! And other thoughts

Sign up! Sign up! Sign up! www.giftoflifemichigan.org for Michigan residents or www.organdonor.gov for anywhere else. I never got a comment for why one decides not to become an organ donor in a previous post.  Your body won't be hacked up, you will still be able to have a viewing, medical personnel will do everything to save you, but the best part ---you will live on in someone else that would ultimately DIE without that gift of life.

If you asked me 5yrs ago if I ever thought in my wildest dreams that I would be where I am today healthwise, you would have heard a resounding NO.  Heck, I'd been through enough as a child, now I need a transplant ?!?!?! It is very surreal at times and with my recent lung function dropping again to 22% a few wks ago the reality of a transplant is creeping closer and closer.  This year could be a game changer for me--SCARY!!!!! You can't really understand until it affects you personally-there is so much involved.  Do I want to be here? NO! Do I want to stop and catch my breath if I walk too fast? NO! Do I want to die at 38? NO! Do I want to lock myself in a closet and scream and break things and hit someone in the face as hard as I can? SOMETIMES! Do I want to curl up in a ball and stay in my bed somedays? YES!
Ah, the unending roller coaster of emotions one experiences when life decides to pull the rug out from under you. Life goes on with or without you, so I will fight to keep up with the demands of life.

I go to Wisconsin in a few wks, they want to see me before putting me back on the active part of the list.  I'm pretty sure they want to make sure I can still travel there and don't look like death warmed over with this barely working lungs.  The time has come, the time has come, it is done.
Here's a great song that sums up how I'm feeling-the first line says it all.

www.youtube.com/watch?v=UUEy8nZvpdM