Tuesday, December 31, 2013

Goodbye, 2013...

"Tomorrow is the first blank page of a 365 page book. Write a good one." -Brad Paisley


        Year 2013, Day 365... I am so ready to say goodbye to 2013.  It has truly been the most difficult year of mine and my family's lives.  There was deep, heartbreaking, sorrow.  There was joy and relief.  There has been so much struggle, emotionally and physically.  It has been a bittersweet year; an uphill battle; an emotional roller coaster.  I am so thankful this year is finally coming to a close.  
        "Tomorrow is another day..."  The past is the past; all we can do is take a deep breath and give it to Jesus.  It is a new day, a new chapter, a new beginning.  God alone knows what is ahead of us... though I have a feeling it's going to get a lot easier from here.  
        Happy new year, everyone!  May God bless and keep you safe.  I am so very glad to have made it through this past year... and am hoping this next year is a beautiful one.  I think it will be. :)
        Goodbye, 2013... Hello, 2014!

Much love,
~Julie Jean

Saturday, December 14, 2013

Lady of Guadalupe

"Let not your heart be disturbed... Am I not here, who is your mother? Are you not under my protection?  Am I not your health? Are you not happily within my fold?  What else do you wish? Do not grieve nor be disturbed by anything." - Our Lady of Guadalupe

December 12th, Our Lady of Guadalupe's feast day

        I ended up not having time to make a post on the 12th, so here I am two days later...  My family has always celebrated the feast day of Our Lady of Guadalupe.  Basically on this type of day we remember and honor whoever's special day it is.  We've always had a special devotion to Our Lady of Guadalupe.  I often ask for her prayers to her son, our Lord.  I've always felt a special friendship with her.  I don't know why, but I do.
        So, like every year, my family (whoever could be there) gathered for a dinner at my parents' house.  We listened to Christmas music, talked, put up the Christmas tree, and were just our goofy selves.  Our dinner that night is a lot like Thanksgiving dinner... turkey, stuffing, mashed potatoes, veggies, and pie for dessert!  It was fun actually being able to be there this year for our mini celebration.  I just wanted to share a few photos from that night.  Enjoy!

(Christmas decorations!)

(Setting the table for dinner...)

(me and Monica)

(Joe and I :)

(The Christmas tree!!)

        It may seem simple to anyone else, but December 12th is a special day that will remain close to my heart forever.  The feeling of Christmas really begins at my parent's house that day... Although Joe and I put up our tree the day after Thanksgiving, I still want to enjoy this day, every year, with my parents.  I am happy that I was able to be home that day to help with our lil traditions!  God bless.  Our Lady of Guadalupe, pray for us.

Much love,
~Julia Jean

p.s. I feel bad, because I realized I didn't get pictures of mom, dad, or Pete. :/ Sorry!

Tuesday, December 10, 2013

Two years married :)

"In trust, these hands; entwined, two souls begin."


        Two years ago today, December 10th, I married my dearest Joe.  He is honestly my rock, my love, and my best friend.  He keeps me going; never lets me feel sorry for myself through the troubles we've both endured; helps me to become a stronger/better person with each passing moment; helps me to climb each emotional or physical mountain; and makes me laugh every single day!  His smile melts my heart; his laugh is contagious; his will is strong; his loyalty is beyond words; and his soul is beautiful... and I personally think he is a hottie hothot! ;) I am one very lucky lady.
        I believe in soul mates; and I'm absolutely sure Joe is mine... as I am his.  Yes we both have our quirks that drive each other crazy; yes we have our moments where we yell or don't want to talk at all; yes, there's good days and bad;  we're not perfect.  However, we are imperfectly perfect for each other; and I love it.  I wouldn't have it any other way.


        Here is a poem I wrote  for Joe about two years ago, just before we were married...

-the poet and the painter-

And when I say I've given you my heart...
Before mine eyes close, 'mid the starry night;
scattered high-stacked papers portray the art
of this writer's hand, as it bends to write.
As I consider, to its full extent,
desire - consumed 'midst passion and dream;
forever waits, but for a brief moment,
for life to prelude what is meant to be.
And then I feel; warmth from the painter's skin;
hues of affection blend, blushed like a rose.
... In trust, these hands; entwined, two souls begin.
'Midst a cynical world, I dare compose
of Love: a beauty that lasts forever.
And from its face, shan't my gaze cease; never.
~

        I love that poem.  Through  thick and thin,  love is a beauty that lasts forever. :)  So much as happened these past two years and we have stood side by side through it all.  We've been to hell and back again, hand in hand... and we're so very excited for the many, healthy, years to come!  We are truly blessed to have each other.
       I love you, dearest.  Happy anniversary!!  Here's to the first two years of marriage and to many many many more!  Thank  you for being a wonderful  husband. I  hope I make you as happy as you make me. :)



~Julie Jean

Tuesday, November 5, 2013

One year ago today...

"'Midst a cynical world, I dare compose... of Love: a beauty that lasts forever.  And from its face shan't my gaze cease, never."


        The day I almost died. One year ago today, November 5th, I almost slipped away.  I barely recall waking up that morning.  Much of this account is from what I was told had happened. 
That morning is very hazy in my mind. 
        My husband Joe rustled me awake to tell me he was going to run errands.  He said I was incoherent, mumbling, and making no sense.  He woke my mom up... she had spent the night with us since I had been so sick.  I guess they asked me how I felt, because I barely remember saying I was in no pain.  Then I must have blacked out, because I don't recall the rest.  
        They checked my O2 levels and I guess they were critically low.  They called an ambulance apparently and rushed me to the hospital.  I don't remember them showing up, I don't remember the ride there, I don't remember arriving at the hospital.  My brain was so oxygen deprived all I recall from that moment on is flashes of images. 
        I remember lying in the ER and asking, "Am I going to die?"  I must have been terrified.  Then I blacked out again. 
I was told later that almost our entire family had shown up at the ER that night and that I was given last rights.  It was that bad... they honestly thought I might die then and there.
        The doctors decided to intubate me... my husband was told to leave the room.  He told me later that he had told me he had to leave and had said, "I love you," before he left... but that I was so out of it and so incoherent I didn't respond, and I ALWAYS respond to that. If you know me you know how I am with I love you's.  The thought rushed through his mind that this might be the last time he saw me alive and I couldn't even tell him how much I loved him.  I guess then my dear husband fell into his mom's arms saying he just couldn't lose me.
        I'm guessing it was days later that I remember seeing images again.  I remember being in a hospital room.  I guess it was still in Wichita.  I remember faces hovering above my bed... my sisters Maria and Monica, my mom, my husband, two of my sister-in-laws... one of which I could tell was crying so I lipped to her, "Don't cry. I'm going to be ok."  Which probably made her cry even more thinking about it. ;)  I remember a friend of mine, Francis, smiling beside me.  A friend of mine, Larissa, was a nurse in that hospital... and I remember her standing in the doorway to my room at one point.  Other than that, not really anything other than vague images.
        At some point I was airlifted to Kansas City... I guess I was intubated for 11 straight days. It was in KC where I would eventually wake up.  But that begins another story to be told another day.
        Ironically the day before this incident occurred my brother Rafe and I had been talking.  I guess the readings at mass had talked about having the bravery to ask God for things we needed. So we were encouraging each other to ask God for healing. "Ask and it shall be given to you..."
        Rafe had just gotten back from a spiritual retreat, so he had been telling me about it.  He was on what we joked was a "spiritual high" and was so happy and filled with the Holy Spirit.  He told me in that conversation that at the retreat, "I touched the mantle of the cloth as the priest processed by with his monstrance and prayed for you."  Then he added, "I think you're going to get bad before you get better though..."  
        I thanked him... I was, and still am, deeply touched by that.  And that conversation was the day before everything started...the day before the heartache began. Looking back now, I wonder, how did he know?  It surely did get a lot worse, before it got better.  He even joked in the conversation that night saying "I'm not a prophet."  However, he is a saint in my eyes.
        On a side note, a few days prior to this conversation Rafe had told me not to put off going to adoration for petty reasons... and so I went.  He had told me to touch the monstrance and pray for healing... and so I did.  I'm glad I did.  He also told me, "I believe God can cure me if it is His will.  I just don't think He wills it.  You, on the other hand... who knows?"  Oh, how I miss you, Rafe. <3
        This was so hard to write, but I felt it needed to be said.  I am forever grateful for all those who showed up at the ER that night, to give love and support to my family... and for all the powerful prayers that were said.  I'm grateful for all the doctors and nurses who kept me alive; for this last year and my health being 100% different than it was then; to be able to simply breathe; and for this chance at life.  Thank You, Lord.  I'm grateful for my mom, dad, siblings, and my entire family... and especially for my dear husband.  I love you, Joe.  Thank you for not letting me go. <3


My love. 
~Julie Jean

Friday, November 1, 2013

My October :)

"My favorite color is October." :)


        The month of October has been a beautiful one!  Instead of explaining it, let me show it to you.  Here is my last month in pictures.  Enjoy!

I hit 200 days post transplant!

Got my hair cut again :)

Went to the Corn Maze for the first time with friends!

Helped film!

Had our first snowfall of the season!

Had an amazing party thrown for my husband and I!  Celebrating life!
... and we danced the night away. And I didn't even get short of breath!!! :)

Celebrated my mother-in-laws birthday! These were the pillows I made her. Love them!

Celebrated my father-in-laws birthday! This was the pillow I made him! ;)

Went to a Chiefs game! 8-0, baby!!! :)

Helped with a Haunted house! :)

Did more crocheting! Love making pillows!

Visited these two amazing people! So blessed to have them in my life!! <3


Went as Willie and Si Robertson for Halloween!!!! :)

        There you have it!!  I hope your month of October was as amazing as mine!  Much love to you! <3
~Julie Jean

Monday, October 28, 2013

24

"And with the setting sun goes our dreams, to return, ever brighter, come the morn." - Dwight C. Erthenwall


        I just wanted to take a moment and write a special note.  Today would've been my brother Rafe's 24th birthday.  We miss him so much.  He was brilliant, gentle, kind, creative... A wonderful brother.  I could go on an on about him... and he'd probably get a kick out of it, too. ;)
        My brother, Max, said a mass in memory of Rafe.  A handful of people gathered in remembrance.  It was nice to see familiar faces.  It was nice to see how many people showed up.  We all love him so.
        We miss you, RafeBob.  Our hearts ache wishing you were here with us today.  I know you are having an amazing birthday with all the angels and saints and our Lord.  Who could ask for a better party?  Still I am selfish and wish we could be with you and hold you.  Oh only to hear your voice again... and one of your clever random remarks...
        Happy birthday, Rafe!  I hope you're jammin', singin', and dancin' your day away in celebration.  Until we meet again.  Hugs to you.  I miss you.

Much love,
~Julie Jean

Wednesday, September 18, 2013

Six months!

"You only live once, but if you do it right... once is enough."


        Today is a very special day; a happy day.  Six months ago today I received a life saving gift that I will cherish forever.  It's been six long months since I received my double lung transplant.  I can hardly believe it's been that long!  So much has happened... so many struggles; and yet so many wonderful moments.
        It is also a sad day, as I remember the reality of the loss of my donor's life for me to be able to be given this second chance to live.  I am eternally grateful to my donor and the donor's family.  I cannot wait to write my letter of gratitude to them.  My heart goes out to them in their time of grief; as they are remembering the six months since their loved one's passing.  It breaks my heart to think about it.
        My sister put it so beautifully as she said, "Dear Lord, please pour down Your grace and blessings on a family who, six months ago, in their moment of profound loss had the courage and generosity to give the gift of life to my sweet sister Julia. We will be forever grateful."  As do many, my family understands the feeling of loss and grief.  And we are... forever grateful for their precious gift.
        I will pray each day for the healing of their hearts.  I will pray each day for the soul of my donor.  I will live each day being grateful for each breath I take; rejoicing in each day I am given to live a full and complete life.  I hope to accomplish so much in my time here on earth.  I am determined to grow stronger in each passing year.  I want to pursue my goals and my dreams... to live the life I never thought I'd get.  Thank you, Lord, for this opportunity... for this blessing!
        Thank you to everyone who has stood by my side through all these months/years.  You help me stay strong; you keep me going.  I am doing so very well and feel so very lucky.
        Here's to the next six months!!  And to the next sixty years!  ;)

Much love,
~Julie Jean

Sunday, September 15, 2013

RaNdOm quick update

"Life is a highway... I wanna ride it all night long..."


        I realize it has been several weeks since my last post.  So I thought I'd write a quick note just saying what's been up lately.  These last few weeks have been crazy busy, and very fun!
        First of all, I GOT GLASSES!!! Ha!  The geek in me is now complete. ;)  I guess I have astigmatism.  So I have to wear these glasses all the time.  Which I don't mind, because they're so freakin cute!  However, I'm still getting used to them.  It still feels really weird, but life is a lot less blurry now.  So that's good.  ;)
        So, I've finished pulmonary rehab.  I'm definitely going to miss the team I worked with.  They were all so kind and precious!  I'll even miss some of the people I worked out with.  Especially one sweet dear lady who expressed how much she was going to miss me the day I left... "I'm going to miss you so much.  I love you and am so proud of you.  Know we are praying for you."  So sweet!  She really touched my heart.  The therapists were all wonderful people.  So glad I got to work with them, even if it was for a short time.
        Sometimes I sit and think about all the people who have helped me through this journey - all the nurses, therapists, doctors, assistants - just everybody.  Some of them I work with almost on a daily basis, others I probably will never see again.  I wish I could express how grateful I am to each and every one of them.  Before I leave them, I do try to let them know how much I appreciate their hard work... I hope they realize it.  It means a lot.
        Now, I'm going to probably get a membership to a gym... because I definitely want to keep on working out!  I want to get stronger and stronger.  I'm still riding my bike, which I absolutely love!  But I want to reach full capacity within this first year post transplant - and this month it'll be six months!!  CrAzY!
        I also got my hair cut.  ;)  And I now have bangs!  My hair is still growing back, still not full... but much much better.  So that makes me happy.  I can't wait for it to be completely grown out again.  I am so grateful to my bro-in-law for styling it so it doesn't look so weird anymore.  It now looks somewhat normal.  :)  He also said it looks like it's growing in a lot thicker and a lot curlier.  Which, of course, I would love!
(my new haircut)
        Other than that, I've gone to a hometown fair and also the state fair.  Which were both very fun!  I was super excited for the state fair, because I hadn't gone in many many years and the last time I had gotten sick.  So, this time, we had a blast... I was like a little giddy girl.  ;)
(Joe and I on the lift at the fair)
        Let me think... oh!  I've been getting back into photography a lot!  I've gone exploring a few times with friends and also have been doing a lot of child/baby portraits.  So much fun!  I can't wait to have my own studio someday.  Getting in a lot of experience and practice, for sure.
        Anyway, that's all from me for now.  I know this was random and quick.  I do want to blog more and really want to try to start vlogging again on youtube.  I miss it and I know it'd be neat to share our lives with you... to whoever wants to follow along on the ride!

Much love,
            ~Julie Jean

Friday, August 16, 2013

Finally got the tissue removed.

"And then there was none..."
(waiting for my bronch)

        So on Tuesday, the 13th, we went in to get my bronch to remove the tissue blocking an airway in my lung.  Well, the doctor came into the waiting area and told us that he felt it was too dangerous (because in the bronch on Thursday it bled a little) to do the bronch in the regular operating room.  He felt if it did start to bleed when they were removing the tissue they wouldn't have the proper equipment to stop it.  :/  Scary.  So he wanted me to be in the O.R. when they removed the tissue... I agreed.  Better safe than sorry!
        However, that meant we had to wait another day to get the bronch done in the O.R.  So we were told to arrive at 6:30 a.m. on Wednesday.  So we did.  Around 7:30 a.m. a doctor came out and told us that Dr. Wait (the doctor who was going to do my procedure) was taking longer than expected in the double lung transplant surgery he was performing... and so we were going to be pushed back into the afternoon.  First, I completely understood and wanted him to take all the time he needed on the transplant.  Second, keep in mind that I hadn't eaten all the day the before (except for dinner after they told us we had to wait another day) and then again hadn't eaten since midnight ... and I was getting hungry by this point. ;)
        So we had to wait on Dr. Wait... see what I just did there?  Hehe ;)  (I know I'm a dork.)  Anyway, even though it was kind of frustrating, both Joe and I totally understood and didn't mind him taking his time.  Kept his patient in our prayers, as well... which he said ended up good.  So thank God!
        And so we waited...  A little before two o'clock the doctor came in and talked with us and told us it'd be about another hour.  I believe it was a quarter to three when they finally rolled me into the O.R.  They used IV anesthesia and also the gas mask thing... and, of course, I fell asleep...
        On a side note.  Something I realized... Right before I fall asleep when being put to sleep for an operation, my hearing sense gets MUCH more distinct.  Every single sound in the room gets really distinct and really loud... and then I pass out.  It's so freakin weird!  But neat too ;)
        Anyway, Joe said the operation only took about 30 minutes.  They were able to use the laser, by the way.  Then the doctor came out and told him all went well, there was no bleeding, and they removed the tissue.  He actually showed him a picture of the airway after the tissue had been removed.  And he showed him a picture of the tissue compared to his finger tip... Joe said it was actually very very small (about the size of his fingertip or smaller!).  How such a small thing could cause so much trouble is so strange!  The doctor said it just puts into perspective how small our airways actually are.  True.  Also, he said there's a small chance it could grow back, so we have to keep an eye on that.  I reallly hope it doesn't.
        So then they told us I didn't have to stay overnight at the hospital and could go back to the hotel.  So we did.  They gave me a little bit to eat, which I shouldn't have done... because for the rest of the night I felt very nauseous and miserable.  And I had a headache (which they said was normal)... but I think it was from the gas anesthesia stuff they gave me.  Because I've never had a headache after an operation until this time (and this was the first time that I remember them using that for a bronch).
        Then on Thursday morning I felt better and we started the long drive back home.  So, basically, we spent about a week in Dallas (starting from last Wednesday when we drove there and stayed until Friday morning... came home for Saturday and Sunday... then headed back Monday for our Tuesday appointment which ended up being a Wednesday appointment... and us leaving on Thursday).  That was a lot of driving.
        I feel okay now... had a rough day today.  I'm still a little sore.  It took a while for my headache to go completely away.  But I'm sure in a few days I'll be back to normal with this behind me!
        It was a long week.  We're so glad it's over... and we're home again.... and today (the 16th) was my Joe's birthday... and the Chiefs played well... and the Royals won their games... and we had hot wings for dinner with his family... and tomorrow we're going to the carnival... and it makes me smile :)
        Regardless of the ups and downs... life is good.  Smile.

Much love,
~Julie Jean

p.s. Happy birthday to my dearest Joe!!! Xoxo :)

Tuesday, August 13, 2013

Oh, mercy...

"And who of you, by being worried, can add a single hour to his life?" - Matthew 6:27


        So the test results all came back from Thursday's bronch.  There is no infection, no rejection, and no cancer.  Whew!  Thank God for that.  However, they ended up deciding not to do the bronch today.  I guess there is too much of a risk of bleeding (for when they cut out the tissue).  So tomorrow morning I have to be at Day Surgery at 6:30 in the morning.  Then they are going to do a bronch (with more & better equipment) in the O.R.  Then I have to stay in the hospital over night to be watched, in case my lung does bleed.  So we should be leaving Thursday morning... and it's all been a little stressful.
        I am very glad all the results came back negative, but it is quite frustrating to have to be in town, basically, all week.  However, I guess we should count our blessings.  All the results did come back negative and we are so grateful for that!  I really would rather do the operation in the O.R. for all the safety reasons.  Better safe than sorry.
        The doctor was very sweet and apologetic.  He felt bad we drove all this way and ended up not getting it done today, but we both told him it wasn't his fault and we'd rather be safe.  He is such a kind man.  He also said another doctor would be doing the operation.  I met him in the hallway and he seems real nice.  They said they might use laser to remove the tissue, but they'll decide at the operation.  They also told me that the operation is still minor... though every operation has its risks.  But I'm not too nervous... I guess.  I will, thank God, be put under general anesthesia... so I will be completely out!!  ;)
        The doctor actually showed us the pictures he took during Thursday's bronch.  It was very interesting.  He showed us the airway that was being plugged and then another airway that was completely open (just to compare).  There is quite a difference.  The tissue is completely obstructing the airway when I exhale.  So he believes that is why I am more short of breath at times and that my pft numbers are a little lower.  It was so interesting to look at the airways in my lungs!!  And he showed us the spots where they sewed the lung in and the tissue grew riiiight next to them.  It was weird.
        Anyway, I'm going to relax tonight and try to get to bed early.  Got a long day tomorrow.  Lord, give us strength and patience... and help tomorrow to go smoothly!  Prayers are always appreciated!  Thank you, my prayer angels!!

Much love,
~Julie Jean

Thursday, August 8, 2013

Short post.

Just another manic ... Thursday... ;)



        Just a small message to let everyone know how today went.  So they did the bronch. And, yes, although I was a little loopy, I was totally awake and aware through the whole thing... which was very weird.  That was the first time they didn't just put me to sleep.  I didn't mind.  I was freakin nervous, but it was okay.
        Anyway, the doctor said there actually wasn't much secretion.  However, there was an unusual piece of tissue growing over an airway.  And when I would exhale it would flap down and block the airway.  So they took samples of it and sent it off to biopsy to make sure it isn't anything bad (just a little freaky).  And also they're testing to see if there's anything preventing them from removing it.  And, of course, they want me to come back and get another bronch in a few days to remove it (if it's safe to remove). They said it should help a lot to get rid of it, obviously.
        Although the whole "unusual tissue" thing does make me nervous, nobody seemed too worried.  And my nurse said that mostly they are making sure it won't damage anything to remove it.  Still prayers would be appreciated! ;)
        Oh, goodness.  So we're coming home for the weekend, then turning back around and coming back for a day or so. :/  We'll probably get all the results sometime Monday - to find out if there's rejection, or infection, and what the heck that tissue is.
        I know this is a short post, but I haven't eaten since midnight last night and I'm finally eating!!  Lots of barbecue meat, french fries, onion rings, and a biscuit... Mmmm!  Yayness!

Much love,
~Julie Jean

Monday, August 5, 2013

our thanks to you

I hope you know how much you mean to me... :)



“Thank you.”  It feels these words simply are not enough to express the gratitude my husband and I feel.  The overflowing amount of love and generosity we have experienced over the last several months has touched us deeply.  So many people stepped forward to help in their own special way, using the gifts and talents God has given them.  And we are truly grateful.
I know “thanks” may seem to be said so often and so swiftly at times.  However, I want you to know we are truly sincere and our gratitude comes from the bottom of our hearts.  Thank you to each and every one of you who have supported us, prayed for us, donated, worked hard, and helped us in any way.  Your kindness, your prayers, your love, and your support has helped us more than you might realize.  God has indeed blessed us with such wonderful people in our lives.  We are thankful.
To everyone who has supported us emotionally, spiritually, physically, and/or financially, thank you.  Thank you to our parents: Melanie and Harry, Chris and John, we would be lost without you.  To our siblings: Rachel, Jeremy, Michael, Therese, Max, Maria, Raphael (I know you’re in Heaven praying for us), Peter, Monica, Tony, Bryan, John Paul, Ana, Aaron, Michaela, Caleb, Jacob, and Faith, we love you so much!  To all our in-laws, grandparents, nieces and nephews, aunts and uncles, cousins, dear friends (old and new), you are loved!  To all the people who have stopped and offered their prayers and sweet words, thank you.  To the doctors, the surgeons, the nurses, thank you for saving my life, truly.  To the aides, the physical therapists, and all the hospital staff, thank you for being there for us.  To our Church families: St. Mary’s and St. Michael’s (and all the groups involved within them), we are blessed to have you.  To anyone who has helped us or prayed for us that we do not know about, your goodness is known by God, and we thank you.  And, most especially, thank You, God the Father, the Son, and the Holy Spirit!
Thanks to every single one of you with all our hearts.  I wish I could give each of you a hug.  Because of you we are living life to the fullest, savoring each moment with the hope of a beautiful future. We are, truly, very lucky and very blessed.  Know you are in our thoughts, prayers, and thanksgivings.  God bless you, always.  Again, thank you. <3
Much love,
~Julia & Joe

Tuesday, July 16, 2013

Ablation: check

"My heart was burned and it left a scar... no, literally!" Ha! ;)


        I'm out!! :)  Got my heart ablation.  They said it went well and they think they fixed the problem. Yay!!
        Beforehand they told us the most difficult part usually was getting the heart to start racing and then locate the problem...  Well, I guess afterward they told Joe all they had to do was bump it and it got it going and they could see exactly where the problem was. I kinda knew that part would be easy. ;)
        I guess there's a 5% chance the problem could return, but they are pretty dang sure it won't. :)  So glad it's done!!!
        So here we are in my hospital room. I have to lay flat and completely straight for four hours... I've got about an hour left. So other than my lower back hurting like crazy, I'm feeling fine! :) And I'm hungry. ;)
        So I'm spending the night to be monitored... which is good.  The doctor said he thinks I can be discharged about 9am, so I'll probably get out about noon. ;)  Hehe!  Then we're headed home!
        So I think that's all I've got to say.  Thank You, Lord, for letting it all work out!  I'm also so lucky my husband is always by my side!  I love him!  And thank you all for your prayers!!!      

Much love,
~Julie Jean

Monday, July 15, 2013

Surprise, surprise...

"Here we go..."

        So here's what's happening... As most of you know, I'm in Dallas for my monthly checkup.  My lungs are fine, x-ray was fine, I sound fine, and pft's were fine.  However during my pft test my heart started racing again. I guess I blew too hard trying to get a higher number. Too determined.  ;)  My heart raced for over three freakin hours this time! Ugh.  So uncomfortable!
        So they took an EKG and we've all talked and have decided to go ahead and get the heart ablation over and done with.  It's scheduled for noon tomorrow.  Surprise!
        They are going to first use what they call twilight anesthesia, so I'll be loopy but awake. If I can hold absolutely still (while I'm mostly out of it) then they won't have to intubate me...but if I can't, then they will have to intubate me. Sigh.  However the ENT said he'd use the smallest tube, so hopefully it won't cause more damage to my vocal chords.
        Anyway, they say the operation takes two hours. I am scared, but I know it's pretty routine.  Have to keep reminding myself of that.  I'll spend the night afterward in the hospital and if everything is fine I'll leave the next day.  So we'll be in town a little longer than expected. So please do me a favor and pray for us... and that the operation goes well.  Thank you!!
        In some ways, I'm glad to get it done, then I won't have to worry about it anymore!  But I'm also so nervous.  Maybe it's best this way, because I don't have much time to worry about it.  Ha! ;)

Much love,
~Julie Jean

Tuesday, June 25, 2013

Wishing it were August...

"Jesus, I trust in You..."


        I am so ready for the ablation. Yes, you heard me right! My heart raced again this morning... for two and a half hours! It started about 4:30 in the morning. About 6am we headed toward the ER. Seriously right before we pulled into the parking lot of the building my heart slowed down.
So we turned around and went back home. It was sooo frustrating!  My heart rate has been in the 80's and 90's after that, so far today. That's still fast, but I'm not too worried about it. I'm sure it'll take a day, or after my second dose of my heart med, for it to calm down. It does make me feel shaky though... Don't like it!  Going up half a dose at night on the med, btw.  Hope it helps.
        Anyway, yes, the ablation scares me like crazy... but I don't want to have to deal with this anymore. I'm tired of rushing to the ER, being freaked out, feeling crappy, shaky, and anxious...and almost passing out, feeling dizzy and light headed.  I just want the operation done and over with. So I won't have to deal with this anymore.
         I'm in the midst of trying to schedule my ablation, clinic visit, and nerve test. It's been hectic...but I should have it all figured out by tomorrow. Hopefully.  It will probably end up being sometime next month. The sooner the better. However the cardiologist's PA emailed with me today and said, "I understand you wanting to get this done soon, but the doctors want to be sure you're 'in a good place' and have healed enough post transplant first."  Makes sense, but I still wish it was tomorrow. ;)
        I do hope it's as routine as they make it sound.  I've talked with a lady who got an ablation years ago and she remembers it being pretty simple... and hasn't had an episode since!!  That does make me feel better :)
        Oh I'm tired of "issues." I want it to be August so all my operations will just be over! Maybe then things will really go to normal...?
        Other than that, my breathing is doing fine. My energy is fine. My numbers are all fine. My lungs seem to be just fine! And that's a good thing. I am lucky. I know it.
         And I know I'm complaining. I'm sorry. I'm so blessed, I shouldn't complain. I'm just frustrated and stressed at this moment. Need to vent a little...before my husband gets home. Ha! ;)  I guess I just needed a few hours of being upset. I mean it's just scary in the midst of my heart racing.  I know I'll be ok...all the docs said I'll be ok. My loving husband constantly reassures me I'll be ok.  (He is so sweet... and I'm so blessed to have him.)   But still, in the moment, it ain't fun.  Ok. Done venting. I'm exhausted. ;)
        Lord, I do trust You. I just got to get through this next hurdle...
        Pray for me, please. Thank you.

Much love,
~Julie Jean


Tuesday, June 18, 2013

Here we go...

"On the road again..."


        Well, we're on our way back home from Dallas. In all, it was a good clinic visit. Nothing immediately wrong or that is going to hurt me.
        So I did see the cardiologist. And, well, I'm getting a heart ablation next month.  Yay (sarcasm). That means I'm going to get an operation on my heart to burn off the bad cylinder that's causing it to freak out so much.
        They said it's an overnight operation and it's low risk for me because I'm young. So that's good, but still scary.  There are risks... like accidentally burning something wrong or it being too near to the normal stuff, that they want to keep, that it damages those.  If something like that happens, I think she said they'd have to put in a pacemaker...? Ugh.
        I also may have to be intubated again. That's where they put a tube down your throat for the operation. So that will probably mean (I'm thinking) it will cause more damage to my vocal chords. Nobody told me that was a probability, but it's just my mind worrying. It was damaged last time I was intubated. Oh I hope I don't lose my ability to eat or talk!! <-- more overreacting. ;)
        And to make things worse I may have to be awake through some of the operation. You see, they have to trigger the heart to start racing to find exactly where the problem is to burn it off. And I guess sometimes if you're asleep it won't work. I told them, "The thought of being awake during that freaks me out." So they said they could try it first with me asleep the whole time. Hoping it works! Because I do NOT want to be awake when they stick a wire up my artery to trigger my heart to race!! Just the thought will probably trigger it!
        And after allll that I will still need to get the throat nerve test and operation too. Good grief.
         Sigh. Not too thrilled right now. I'm so stressed and really need prayers for courage and peace. I know God doesn't give us more than we can handle...but, wow, God, You give me a lot sometimes it feels like. I need a break. ;)  Maybe after all the operations are over all the scary stuff will finally be over...? I hope so.  I shouldn't complain. I've been blessed thus far.
        For now they have me on heart meds to hold me over until the operation. And the doctor did tell me, "No matter how scary it seems when your heart races, it's not going to kill you." Ha! That's a plus. I'll try to remember that.
        Anyway, thanks for letting me vent...not that you had a choice. Hehe ;)
        "Everything will all be ok in the end. If it's not ok, then it's not the end." :)

Much love,
~ Julie Jean

Monday, June 17, 2013

Heart and Throat

"Quit playing games with my heart, my heart..."


        ^ Ha! Got that song stuck in my head now. Well, we're back in Dallas for clinic.  And I've had a few more short episodes of rapid heart rate. I'm seeing the cardiologist tomorrow. So hopefully I'll have some answers or ideas to what's wrong AND have a plan to fix it. Sigh. So nervous.
        When it comes to my heart... I'm so scared. When my heart is racing, I feel so awful. Being scared it could start up again any time, anywhere, is frustrating. The heart just seems so fragile. I don't want anything wrong with it anymore... I want it fixed!
(Throat specialist office)
        Also, I saw the throat specialist today. Next month I have scheduled a nerve test on my vocal chords. Yay (sarcasim). Wait til you hear this.  The nerve test involves being awake, having a needle stuck in my throat, and making throat noises. :D Sounds fun, riiight? Maybe it'll become my regular Saturday night thing (sarcasm again)! :/
        The doc smiled and told me, "It hurts. I wont lie. I had it done on myself once just to see how it feels..." That's.... sweet or weird? ;)  He told me, "It hurts, aches, and lasts... ten minutes." :( Ah! Scary. That seems like forever to have a needle sticking in your throat!
        He also thinks, depending on the results of the test, that down the road I might need a reconstructive nerve operation on my vocal chords ... to close the gap I have in between the chords and to bring my voice back. Sigh. I was thinking... maybe I don't mind having a hoarse voice for the rest of my life. :D  But he also fears aspiration if we don't fix it. Fiiine. At least I'll be sleep during the operation.
        Anyway, enough of my complaining.  I guess I'm just getting out all my thoughts in this post.  I know it'll be ok... I hope. :D I may be scared and it may be hard to see past this bump in the road, but we'll get over it.  Somehow.  I know there are people in more frustrating situations than I am. The first six months to a year post transplant will have those tough days and mountains to climb. But I am stressed and nervous... Prayers appreciated that I get through this one.
        Anyway, that is my update. No more health problems, please, Lord...forever!  Too much to ask? ;)

 Much love,
~ Julie Jean

Tuesday, June 11, 2013

Home :)

"I'm coming home... I'm coming home... Tell the world I'm coming home..."  ;)


~HOME~

        I suddenly realized I never made a post about coming home.  Well, for those of you who don't know, me and Joe are back home!!  Home sweet home for sure :)  We've had a lovely time since we've been back.  We've been home for about a week and a half now, I think.  We've done so many things already - drive-in, out with friends, a baseball game, Joe's started softball again, chillin with family and friends.  It's been lovely
        We've already decided that we're going to fill this summer with fun... doing things we haven't done in a while and things we've never done... and things we always do and just enjoy doing them! ;)  There's definitely a few things on my list to do this summer... random, but exciting for me.  ;)  1) BONFIRE!  I want to sit around a bonfire and roast marshmallows, sing songs, and just feel the crisp night air. :) 2) Fishing!! I haven't gone fishing in forever.  Now, I can't touch the lake... or the fish... or the worms for that matter, but I can touch the fishing pole and do all that is necessary to catch a fish.  HAHA!  3) Camping... of course (which might include the bonfire and fishing experience...)!  4) Biking!! We bought bikes, so I'm so excited to get started on this.  ;)  Mostly I'm looking forward to just spending time with friends and family... making up for lost time while we were far away in Texas.
        Anyway, both my husband and I are so happy to be home again!  Our experience these past few months makes us appreciate every moment of life so much more.  We are blessed.

Much love,
~Julie Jean

p.s.  Since we've been home I did go to my first Royals baseball game :)  Here's a few pictures from that!




Muah! XOXO

CrAzY DaY

"My heart it beats so, I can scarce hear my lover's approach..." ;)


-my day in the ER-

        So around 8 o'clock this morning I woke up with my heart racing.  Let me tell you, for those of you who don't know me very well - I do have a history of sudden rapid heart rate.  I've had it for as long as I can remember.  However, it only occurred once in a blue moon.  And as my lungs got worse over the years, due to my CF, the palpitations got worse and more frequent.  Post transplant I also had issues, as I'm told do many transplant patients.  So they had me on heart medications to keep it under control for a few months.  After that, they quit the medications to see if (because my lungs were new and healthy) the heart issues would simply go away.  It's been months since my last bad episode...
        So back to today.  After a while of my heart not slowing down, we drove to the ER.  I waited in the room for the doctor for several minutes.  Now, it'd been over two hours at that point that my heart had been racing... Then, of course, five seconds before the doctor came in it suddenly stopped and slowed down to a normal rate.  I was glad of this of course, but it was also kind of hilarious.
        Anyway, the doctor still wanted to do a full checkup on my heart - just to be sure.  They did an EKG on my heart - it was fine.  They did blood work - I guess some level was high, so he was worried about heart attack...?  Not sure what that was about.  So he ordered an MRI.  Here comes the fun part...
        I have a port in my chest, due to the fact that my veins are extremely difficult to access... so the port is there to access with needles to make it a whole lot easier to take blood and do IVs.  However,  it is not a power port ... only a power port can have contrast through it.  AND to get an MRI I needed to have contrast intravenously put in me.  And if they couldn't access any of my veins, I would have to be admitted into the hospital for the night for other tests, possibly a pic line placement in my arm (for IVs), and to be watched carefully.  So thus it began... After being stabbed in the right arm three times and in the left arm twice (trying to get my tiny veins - and yes  I cried) the IV team lady FINALLY got a vein.  Perfect timing too, because they were thinking about trying the veins in my neck!!! AH!  
        So then I got the MRI.  And anyone who knows anything about contrast knows the lovely side effects it has... bleh.  So then there I sat worrying about heart attacks or that my heart would start racing again... About ten minutes later the doctor came in and said that everything checked out and  it was all normal and I could go home.  :)  SIGH OF RELIEF!  
        So here I am at home.  I'm not going to do anything for the rest of the day... just relax and crochet.  I'm ok.  I'm just exhausted; feel like I've run for miles.  I'm going back to Dallas next week for a checkup anyway, so I'll probably get checked out there as well by the cardiologist.  I'm hoping it was just a fluke and it won't happen again.  Crossing my fingers.  Thank you all for the prayers and support through this stressful day.  I greatly appreciate it.
        It amazes me how different each day can be from one to the next.

Much love,
~Julie Jean