This is me; little Julie Jean

"Try. What do you have to gain? Everything. What do you have to lose? Everything." - Jean Etta

-New Year's Eve-

 

I believe one of the reasons I'm writing this is because of the need to get it all out.  Not just to keep you updated, but for my own sanity as well.  It's like I'm trying to convince myself it's going to be ok, while I'm explaining it to you.  And writing has always been a stress reliever, so here we go.  To be honest, life is going to change for us; we're hoping for the better.

             To put it bluntly, I'm doing the one thing I always hoped I'd never have to do. I'm starting on the road toward a double lung transplant. No, I'm not getting it tomorrow, nor the next day; I have just begun the long drawn out process.  And how long it will take, from beginning to end, is never known.  Each person is different; each experience is different.

As I've mentioned before, I was born with a genetic disease called Cystic Fibrosis.  All my life it's slowly physically pulling me down year by year.  But I was used to it; used to the work and effort it took to stay well.  I know, in a way, it may feel like somewhat of a failure to have to receive new lungs now; like we did something wrong, or there was more we could've done.  It isn't. There wasn't.

I have to mention my mother here.  God bless her; she has kept me alive and is the reason I've had such a good quality of life.  Because of her research, dedication, determination, hard work, love, support, constant care... my life has been wonderfully blessed.  She has always been there for me; always by my side, night or day; coaching , healing, encouraging.  Without her, I know I wouldn't have made it as far as I have.  Thank you, mum.  Thank you, thank you, thank you.  You gave me the stubbornness and will to fight.  And, mom, we did not fail.  God has His plan, regardless of ours.

However, life sometimes throws us a curve ball.  Two years ago, my health took a turn for the worst, and I never completely recovered.  From January 2010 to present, I have been on continuous oxygen.  And this last year has been the worst.  In and out of the hospital more often than not; my health is declined to the point of "the choice."  To transplant or not to transplant...?

 I know all my life I have fought against having to receive a transplant.  I'm sure nobody wants to have to receive one; but you got to do what you got to do.  There's no denying the fact that my CF lungs are tired, exhausted, and basically done.  I can't explain to you how difficult it is to get up in the mornings unable to breathe; have to struggle through the daily routine of life (without even leaving the house); work as hard as I can to stay as well as I can, but not wear myself down; and the continuous feeling of tightness in the chest and sides.  To get short of breath just walking from one room to the next; not being able to feel like a good wife in any way shape or form.  So many hospital visits; the slow decline of my lungs; feeling like the struggle gets more difficult day by day; catching every bug that comes my way; missing out on so much of life.  All the signs are there; I need new lungs.  And this last sickness in November finally was the last straw.  Nothing, not even a transplant, could be scarier than what we just went through.

This winter threw me over the edge.  I caught a bad kick-in-the-ass virus.  My brother and I both caught the virus; and both almost died.  For three weeks in November I was in the hospital.  For eleven days on that visit, I was basically unconscious and on the ventilator.  After I awoke, I had to heal slowly and receive physical therapy.  I had to relearn to sit up/sit down, walk, talk, eat; basic movements we take for granted until we can't do them.  I had to come off the narcotic meds; which was a weird-ass experience.  I did not like it.  I had to deal with blood sugar ups and downs; anxiety attacks; unable to talk or eat for days and days.  I was moved from ICU, to the heart unit, to the cf floor. 
      After all that, I went home to continue physical therapy.  Joe and I went into hibernation and I did nto go anywhere public (except one time to the nearest hospital for a test, but I woke mask and gloves and sanitized).  We had protocol Joe followed after he got home from work.  We had no visitors.  And, still, SOMEHOW three weeks after leaving the hospital, I caught a cold.  So we went back and I got readmitted to be monitored.  I've been here, this visit, now almost two weeks.  Not much progress.  I was doing better at first; two days ago I started having stomach issues which has caused a chain reaction of setbacks.  :/  Hopefully we'll get it figured out soon.

My lungs are so fragile right now; I have no reserve left.  I feel like I'll be doing a balancing act up until I receive the new lungs.  And I wouldn't be surprised if I stay close or in the hospital until then, as well.  I feel like I need to settle in for the long haul.  "Move in" kind of here.  Yet, I need to focus on the positives.  The possibility of a new lease on life; a new clean slate; a new fresh pair of lungs.  It is positively dreamlike.  The thought of being able to take a walk, ride a bike, to run, to travel, to camp, to go out, to not have to wear oxygen.  It seems so unreal and too wonderful to imagine.  But it is possible.  If it all goes well, if the surgery goes well, if the new lungs take, if my body does not reject, I could get a new fresh start on the life I've always wanted; a life where I can actually breathe.  It would be a beautiful miracle for me and my husband.  To be able to do things we can't now; to be able to live.  I can only imagine how it will feel to take a deep breath and have it keep going and going; to feel my lungs open and expand; to be able to simply breathe.  That brings a smile to my heart.

Everyone I talk to speaks so positively about it.  I've talked to many people; doctors, nurses, RT's, surgeons, actual transplant patients.  I've been told: "It is scary, but the outcome is better than the alternative."  - "Liberating.  The whole experience can be summarized as liberating."  - "It was the best decision I've ever made" - "Why was I scared of this? I wish I would've done it sooner."  "It will be a whole new life for you. You'll get there"  It is these thoughts I need to hold onto; these thoughts I need to remember as I walk this scary road. 

Now, on the other hand, this new life won't be easy as pie.  I'll be trading one set of problems for a new set of problems.  Transplants have their ups and their downs.  My body will still have CF, so I will have to work hard to keep my lungs healthy and strong still.  I will have to be on immune suppressants for the rest of my life... which has all their own side effects.  But there's always the possitibility of rejection.  I will need to wear a mask and gloves in public (but that's actually a step up for me - no oxygen!.)
          I am used to work; I am willing and eager.  I'm willing to take the chance.  For so long I was afraid.  I still am, but in a way I wish it were happening tomorrow.  I wish it were now; just to have it over and done with.  The anticipation the waiting, I believe, will be the hardest part.  Then being wheeled into the operation will be the scariest moment.  Giving my husband a hug and saying goodbye; then letting go, drifting to sleep, and hoping to wake up after.  That thought sends shivers down my spine.

On a slight side note - My husband and I had our first year wedding anniversary recently.  This past year for us has in many ways has been beautiful.  We've grown so very close in our relationship and friendship.  We've learned a lot about each in many ways.  We've strengthened in trust; learned our quirks; and all that is normal in the first year of marriage.  We are deeply in love; more than ever before.  On the other hand, we've also had the hardest year together, because of all my health issues. We've sacrificed a lot; in many ways.  We've been to hell and back together, hand in hand.

During the November hospital stay Joe proved to me, without a doubt, that he loves me so very much.  I've always known so; but his acts of service, kindness, aloyalty, bravey, and love has shown through so perfectly.  Sitting by my beside the entire time I was sedated; talking to me while I slept; he wasa there when I didn't even know it.  After I woke up he helped lift me off my bed; helped clean me; dress me; encouraged me; carried me... and countless other tasks.  He loved me.  He only left to go back to work (three hours away) after he knew I was stable and someone was staying with me.  Then he visited weekends; and still is visiting weekends.  This experience has help me to fall so very much more in love with my Joe.  He is my miracle; my angel.  He can be ornery and quite a dork sometimes, but I love him that way.  My nerd. ;)  He is definitely my gift from God.

 

Just so everyone can keep track of where we're at in the process.  Here's how I was told the process will go:

1)      The first step is to make absolutely sure insurance is going to pay for it all.  We'll know FOR SURE by Tuesday.

2)      Also Tuesday my doctor is going to send out recommendations to different transplant centers.  I have no idea what center I'll end up; I'm told if they accept me, I can choose anywhere.  We're starting with sending letters to ones in Texas and Missouri.

3)      A center will contact me and set up an appointment.

4)      I will go to the center and get evaluated.

5)      They will run all their tests.

6)      The staff there will then decide if I am eligible for a transplant. Hopefully they say "yes."

7)      They will list me.

8)      I will most likely move prior to surgery to live temporarily near the center.

9)      Then is the waiting game... and I wait for a pair of lungs to become "available." I know a lady who waited over a year for her lungs; and I also know of a girl who waited only a few weeks. So, honestly, I have no idea.  That's all in God's hands.

10)   I get the "call" and I rush to the center and go through surgery to receive my new lungs.  (At this point I hope everyone is in the adoration chapel praying, prying, praying!)  Hopefully the surgery goes well and I wake up... able to actually breathe. ;)

11)   Then comes post surgery.  Again, every person is different.  There's recovery, physical therapy, and simply healing from the actual surgery.  Then I will have to live near the transplant center for several months immediately following surgery; for continuous checkups and tests.

12)   When the doctors are comfortable with my progress, healing, and ability to know the "signs and symptoms" of rejection, they will let me go home.

13)   I will have follow up appointments with both the transplant clinic and my usual clinic. 

14)   I'll have to still be somewhat of a germaphobe for quite a while, because I will be on immune suppressants.  So I'll still be wearing a mask and gloves wherever I go.

15)   Then comes life post transplant.  Hoping no rejection occurs.  Staying active, working out, and staying strong... and living a long, healthy, happy life.  That sounds good, right?

 

So there you have it.  It may be selfish to say, but I believe Joe and I have had our lifetime of difficulties.  It's time for some relief.  Our Lady, guide us.  Jesus, hear us.  We've had our "bad times" and our "in sickness."  We are hoping this next year will start the "good times" and "in health."  I don't think that's too much to ask for, Lord. :)  I'm going to try.  What do I have gain?  Everything.  What do I have to lose?  Oh, everything.  So keep us in your prayers.  One more day until the new year; one more day until our life changes; one more night it begins.  Eyes closed tight; waiting to open them at sunrise.  A new road; a new life; a fresh start; relief; hope... a new hope. ;)
    Take my hand, love.  Walk with me.  Let's beat this shit. ;)

 

Happy New Year's Eve!

                                ~Julia Jean