Dawn of a New Day

Hi Warriors....sorry that it has taken me a couple days to get back here and update....here is the latest....Joyce received her new lungs and the surgery went really well.  The only hang-up at all was that do to the B.O. Joyce had a lot of scaring on her lungs that caused a lot of adhesions on her chest well....so was just a little harder for the surgeon to remove Joyce's lungs......caused a little more bleeding so they just had to infuse during surgery and have given her a few units since.  Joyce then arrived to her room around 345am Saturday morning and we were able to go see her for a few minutes....as soon as we walked in the room, the 1st thing that was noticed is how 'pink' and healthy Joyce looked.....her beautiful bod was finally getting the oxygen that it has so badly wanted and been depleted of for so long now.  Joyce then was weened from her vent, around 9am Saturday morning and was then turned off and Joyce was already using her brand new lungs all on her own.  The team here decided that keeping the breathing tube in place was the best route to take because of the fact that Joyce is a very hard intubation and they did not want to have to re-intubate if it was needed....they would rather just use the one that is already in place if needed.  After a few hours of being off the vent, Joyce was put back on to a so that her body could rest and heal more (as most of you know....if Joyce is awake, she is doing something/worrying about something and this is not what the docs wanted yesterday).  Joyce was, at that point, having too much chest tube output and they wanted that to settle down.  After being back on the vent all afternoon Saturday, and after many tests were taken and results read, it was decided that Joyce would be left in a full vent overnight Saturday to Sunday so that she could continue resting and be reassessed in a.m.  At this point Joyce did request to be as sedated again as possible throughout the night as she was becoming more and more anxious and uncomfortable the longer that the breathing tube had been in place.  It is now about 5;20 and the doctors are going to remove her from the vent again, come assess at 7 and if all looks well, get this breathing tube out once and for all!!  Keep up the prayers friends, and I will work my hardest to get back here soon to update you all!  Have a blessed day!  ~Mehgan~

Got the call......
Hi friends, this is Mehgan Ware, I am a good friend of Joyce's and I will be the administrator for this blog for the next (at least) few days.  Wanted to let all you faithful followers know that Joyce received 'the call' right around noon today.  She, Greg and I were then on a plane shortly after 1:00 en route to University of Madison at Wisconsin.  We arrived here around 2;30 (WI time, 3:30 GR time).  Joyce was brought to the floor that she will be on once she is out of surgery and the team on the floor could not be anymore welcoming, caring, and truly all about the patient as a person.....a huge comfort for all of us.  After being poked and prodded at for several hours, questioned like a felon and the lungs were procured and 'cleared' Joyce was taken back into surgery around 7:00 (8:00 GR time).  Joyce was able to vocalize all of her concerns to several different people and they all seemed very open to all that she had to say and we are feeling comforted by that fact and feel that she will be truly kept as comfortable as possible. Joyce was feeling quite peaceful (considering what she is facing) and we truly believe that it is because of all of the prayers, they are being received and felt and it is bringing about a calm that only God's presence can.  Thank you all for these prayers, continued prayers and just for loving Joyce.....she really is something special.

Also, I feel that you all will appreciate knowing that Joyce's personality has already totally shined through and everyone is loving her witty, crazy, sarcastic self.....she had some sort of silly banter with every doc, nurse, transporter, aid that she came in contact with today!

Signing off for now will update as soon as I can/know anymore.....guesstimate right now is 4am to be out of surgery.......

I'm waiting!!

I was going to blog tonight about my great talk I had yesterday in Lansing at Gift of Life, but I got "THE CALL" today at 12:00.

I had just left the Secretary of State office to change my address and I was walking to my car my phone rang.  It was not my scary foghorn ring so I thought it was going to be a routine call.
Well my transplant coordinator is off, so it was another coordinator calling and offering me lungs. Thankfully, Greg was also at SOS office. He was waving goodbye and I was frantically waving at him to stay as I was on the phone.

He was in disbelief as I was-- I called my pilot Randy. Everyone answered as was the plan and I was out of Grand Rapids in a little over a hour!

Ahhhhhhh!!!!! I'm sitting here awaiting this unbelievable event! Pray I make it thru the surgery with a successful recovery for many years.  Pray for the donor - someone has died so I could live. This is heavy but have not processed that thought completely.  I'm only focusing on the now.

Pray for my family, I didn't get to see Eric before I left although I did get to volunteer in his school earlier today.

Every thing has fell into place seamlessly, God is in control.

Love to all my supporters!

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.