Saturday, October 18, 2014

Update : 8 days out

It was a rough start after my extended intubation, it was very difficult not to focus on being awake and trying not to pull out tube.  I really had to pray like crazy.  And after I had trouble swallowing and had to have a tube placed down my throat.  That is highly uncomfortable and irritating and made attempting swallowing more tricky. I'm doing esophageal strengthening exercises but praise God I got the tube out a few hrs ago and boy that feels sooooooooo much better.  My nurse also washed my hair today-Elise is a rockstar!
I don't have much of an appetite so just gotta force myself.   The puréed eggs this AM had the consistency of frosting-- yuck! I enjoyed my peaches tho!

Keep praying for daily recovery and hopefully I can get a chest tube out within the next 24hrs!

We can't do this without you and am so grateful for each and everyone of you!

Gotta get out of here, will have a repeat bronch Mon/Tues to clear out that right lung.

Love you!

Thursday, October 16, 2014

Hows life nearly 1wk out?

Almost 1 wk out!
Crazy it has happened! I've read some FB posts asking if I can breathe differently-- I still have 3 out of 4 chest tubes in which roll over my lungs and cause discomfort and trouble breathing. My donor lungs had some 'heaviness" in right lower lobe according to my surgeon- I asked if that meant heaviness from smoking- he assured me no.
He thinks it's from the trauma they had, so they had to take me to bronchoscopy yest afternoon to suck the junk out- the pulmonologist said it was good they did it because they were to thick for me to cough up on his own.
They may return me there pending repeat CXR.
So I hope-pls pray tubes to come out esp my feeding tube as my extended intubation did a number on my throat and vocal cords.  My repeat swallow study is tomorrow.
I will keep walking- I think I walked a total of 13 times and did 5 min on some bike thingy.

Pls pray healing continues and I am so thankful to each one of you who has reached out and has sent us love.


Sunday, October 12, 2014

Day full of success.....

We started the day with the removal of the chest tube!  :)  Then Joyce was able to sit in the chair for the 1st time, a few hours later, and she made it about 45 minutes before feeling too woozy and needed to go back to bed.  A couple hours later, Joyce sat in the chair for just over an hour and then took her 1st walk!!!  It was truly miraculous to see Joyce up exercising those new lungs again....and only on very little (2 liters) of oxygen....and maintained an O2 sat of 96%!  Truly, truly incredible!  Joyce has since sat in the chair for another long stint and gone for another walk.  We are all hoping that she can get some much needed sleep tonight.  

As the day progressed Joyce's blood sugars regulated more and more so they now only bug her every 2 hours for new reads rather than every hour.....have to see even the little steps as, just that, the right direction.  

Thank you all again for the love, prayers, and support all around.....I'll be updating soon.....


Prayers answered......

Just another quick little note to all of you.....Joyce finally got the clearance for the Breathing Tube to be removed!  So exciting.....Joyce was very irritated this morning, so this could not be better news!  Thanks for all the prayers!

Dawn of a New Day

Hi Warriors....sorry that it has taken me a couple days to get back here and 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 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 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~

Friday, October 10, 2014

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!

Thursday, August 14, 2014

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.

Wednesday, July 16, 2014

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

Sunday, July 13, 2014

How to save a life...

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

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. 

Saturday, June 21, 2014

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.

Friday, May 23, 2014

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!!!!!!!!!!!!!!!

Sunday, April 27, 2014

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:

Thursday, April 3, 2014

April is National Donate Life Month! And other thoughts

Sign up! Sign up! Sign up! for Michigan residents or 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.

Sunday, March 9, 2014

1 yr ago

A little over one year ago, I created this blog and started to make my story public.  Wowee, that's scary! For those who know me personally, know I'm insanely private and making myself transparent is not easy for me.  This disease is rare and I needed answers.  There isn't many answers out there, so I figured let me put my story out there and hopefully I can help others who are struggling for answers. 
In this past year, I have approximately 10,400 blog views including views from all over the world! Crazy!

Almost exactly one year ago, I also finally joined the facebook world --mainly to more easily connect with people, share my story, and spread awareness about organ donation. I created a tshirt I'm really proud of and have sold ~450 here in the US and my good pal Kirstie (whom I met thru this blog) and her family in Canada sold many shirts to support organ donation and her son Bryan battling this same nasty disease.  Here is the cool design:

I even got my design copyrighted!! Thank you to all who have bought a shirt and still wear them faithfully. It means a lot!
There is more to my story to tell--some of it I'm not ready to blog about, some of it is unknown, but most is laid out in these posts from the past year.  THANK YOU to those who faithfully read this. I've met some really great people due to this blog, thank you to those who leave comments and for praying. The support means so much..

Thursday, February 20, 2014

The weather...ugh! Not a catchy title? There's more in there

I try and post regularly but also don't want to post just to post. So shall I discuss this CRAZY Michigan weather!? I'm tired of hearing the complaints but weather is neutral subject so this is some of the small talk that goes on at the beginning of a patient encounter.
Work had been eerily slow, which is ok for me as I was looking on taking some time off to recharge.
The cold air does affect my lungs and make things a bit more difficult.

I also has a sleep study a few wks back, I won't be sharing that pic of myself looking like a lobotomy was about to occur.  The study said I had very mild partial airway collapse during REM sleep only (normal is 0-5- mine was 6).  Well I'm in REM sleep at  2 different times for short periods- I'm in it 3/4 less than the norm. So no clear answers on how to get me more REM -the good Dr Baer has to get a hold of the guy.  I spend most of my sleep in stage 2which one of the lighter stages.
To be continued.

Sunday, January 26, 2014

Today I met...

I finally met a living breathing person who had a double lung transplant!  He attends my church and had his transplant at U of W!  This person also is a patient at the office I work at. How about that for a coincidence? Since I don't believe in coincidences I know it is God.

After doing so much research on lung transplants and survival rates, it is easy to feel dismal about my future.  I've wanted to meet an actual person who had a lung transplant for a long time. Spectrum was suppose to arrange this but never did-they have a long way to go before they are a well oiled machine like Wisconsin. But I won't get into that now.
My pastor arranged for Randy to reach out to me and after some emails we arranged a face to face meeting today after service.

Randy was a pleasant gentleman and you would never know he had a lung transplant (kinda how I don't appear as ill as I am), how reassuring! I got to hear his story, he is still working full time and is 8 yrs out from transplant. He had pulmonary fibrosis that eventually led to his transplant. He was only give 1 wk to live before his transplant! He has had some setbacks in the last 8yrs but ultimately he says he feels great and encourages staying active.

I have so many scary statistics and facts about lung transplantation that it has been discouraging to say the least.  I now have a positive statistic in my mind who happens to attend my church.

God works in mysterious ways.

Sunday, January 12, 2014

A new year...

Happy 2014! Time continues to move forward whether we're ready for it to or not. Sometimes don't you wish there was a stop button?
I can't say I will miss 2013 --there was a lot of anxiety and unknowns that I won't miss. My son started kindergarten and loves it so that is a huge positive. I can't believe he's reading! When I went to kindergarten for a 1/2 day (he goes all day), I remember letter people and playing dress up--times have DEFINITELY changed.
Some goals for 2014: 1.  I want to continue to promote organ donation and hope to get in some local libraries and spread the word about organ donation. There are many myths out there that need to be dispelled. To anyone reading this, what are some things about organ donation you don't understand or have questions about?
2. I want to try and up my exercise regimen and walk or ride a bike 4-5x/week. When you are unable to do something to full capacity it is discouraging and I hate how short of breath I become in a short time. I have to stay strong, I will continue pilates/body barre twice a week. I hope that some of my mat neighbors in those classes don't notice my sweat and increased breaths.  But then again, oh well if they do-they don't know my story.
3. We're going to get a dog --mostly for my son. He wants a brother and I can't give that to him. This is heart breaking and a whole blog on its own. I haven't been able to write it because its too painful. We have to get a hypoallergenic dog so we've decided on a schnoodle (schnauzer/poodle mix). Eric will have a at home best friend.  I also have a thing about hair so this is big for me and nice to know that this breed doesn't shed much.
4. Stay healthy as possible, my most recent lung function testing done last Thursday revealed my lung function at 26%, it was 28%. We'll see what this year holds for my lungs.
Just gotta keep on keeping on.