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

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

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

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 :)

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

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

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