June 10, 2011-Finally received my lungs! My DOUBLE BLESSING arrived just in time.

I cannot even begin to think of where to start this blog.  I got my wings!!!  I have two beautiful new lungs breathing life in my body.  Two weeks ago, I was dying.  Today, I am living and breathing!  Today is a day where I cannot even begin to explain the level of emotion and  the feelings of joy and gratitude that I have in my heart. I will do my best.

So, I have been hospitalized since early May.  During that time, my body had broken down.  Broken, broken, broken.  My lungs were unbelievably sick and my body was beyond sick.  Thanks to my amazing husband who stayed with me in the room each and every day and helped me with every single small aspect of my day, I was able to live with some dignity. I soooooooo missed my kids.  Thinking about them all the time and what they had to feel like wanting their family back together and not knowing when that will happen.  And being too young to really understand.  I was so blessed to have a team of absolutely INCREDIBLE nurses, staff doctors, friends and support to help me get through each day.  I literally could not have asked for more.  My eyes just well up with tears thinking about how much these nurses and doctors treated me like their own family and have saved my life.

I have been asked to explain what the past months have been like.  I really just don’t know how I can.  I have had so many ups and downs.  I am mostly positive and a glass full kind of person.  But the past month wore me down to the point that I have to admit I was starting to give up.  There came a point when the boys came up to visit three weeks ago, and I just didn’t want them to come back.  I couldn’t handle the good bye with them again…I couldn’t handle having to think of another story to tell Jayden and Josiah about when I would be able to come home.  I did get to a point when I told God that I didn’t want to wake up again.  I had chosen in my mind to not want to fight any more.  This went on for a week.  A battle in my heart and soul to want to live or not live.  Never did I think that I would ever lose the fight prior to that.  I was just at the point when I was sleeping sitting up, I was anxious all the time and feeling so much despair.  Each night  I remember telling God before bed that I didn’t want to do this another day.  I was at the end of my rope and didn’t want to go on like this any more.  My anxiety had started overtaking me to where leaving my comfortable room and surroundings was becoming too much for me.  I was not eating. I was barely sleeping. I woke in my bed in the morning, moved to my chair a few feet away during the day, and back to my bed at night.

Then came the morning of Friday, June 10th. I woke up with my nurse coming in to tell me that I should not eat or drink anything.  I asked why, and she didn’t answer.  She was one of my very favorite nurses who cared so much about me, and I was not really thinking too far ahead.  I had been feeling extra sick lately, and I thought that maybe they found out why I was so sick.  I thought my blood work had shown them that there was something else wrong with me. I didn’t think of the idea that they had lungs for me.  It wasn’t until Jay woke up and I told him what they told me  that the thought of lungs clicked in my brain. Once I put two and two together the morning went so slow. At 10:30, Doc came in and sat Jay and I down and gave us the details.  She had been looking at a potential set of lungs for me since the previous night and had to do some additional testing before we moved forward. I was very excited, but not too excited. We sat and prayed and didn’t want to tell anyone yet because of the drama we had put our friends and family through already. I just waited…and waited…and waited. It was a very peaceful wait and I let the people around me carry me through this part of my journey.  At noon, my wonderful nurse started to draw blood and take care of all of the other fun stuff to prep for surgery. It was on. I was scheduled to go into the Operating Room at 2.

At 2:10, they wheeled me down to the Operating Room doors. I have to admit that I was more scared about being away from my room than I was about what lied ahead. I said my goodbyes to my husband, not knowing if I would ever see him again.  Once through the doors, my nurse and I shook all the way down to the room. I just told God that I put my life into his hands and that I relented to whatever His Will for me was.  I was taken to the brink of what I could handle.  To the end of my rope as I put it.   And only God could send me a life jacket…….And, well, HE DID!!!

I was knocked out and don’t remember anything once I was in the Operating Room. Jay has told me that it went down like this:

4:30- donor lungs look great and they are proceeding with transplant

6:30- donor lungs arrive and they start taking out the old and putting in the new

8:00- first lung in

10:00- second lung in and they start to close me up

Midnight- DONE!

I don’t remember much from the past 10 days.  I was taken off the ventilator right away the next morning, and I was breathing on my own with no oxygen an hour or so later. A few hours after that, I walked for the first time without oxygen for over 2 years. It was crazy.  Of course I wasn’t really mobile or coherent, but I certainly remember the feeling of not having 15 liters of oxygen blowing into my nose.  I definitely knew that I was breathing easier even just laying there even though I did not know what was going on.  I remember feeling like I was hit by a truck.  I knew that would be the case way ahead of time.  No fore-knowledge could have prepared me for the pain to follow.  Or the recovery process.  You wake up from surgery feeling like you couldn’t move a muscle if you were paid a million dollars, and they immediately want you up 4 times a day walking and getting your new lungs to open up.  The walking and rehab in the beginning is CRITICAL.  As a result of being sick for so long, my body is so frail and small.  Not exactly the diet plan I thought up for myself.  So, walking and doing small activities is just like being an awkward newborn baby calf.  My brain and my limbs just aren’t working together very well.

There are so many things that I am doing to help get myself back in shape.  And so many life changes that I will have to make.  Obviously, getting new lungs is a huge surgery, and immediately upon getting the lungs, our job is to trick my body into not rejecting them.  That is why there is the whole process I am going through right now of becoming acquainted with the drugs.  I take about 20 pills a day.  They certainly have done a number on me.  I am shaky and can’t hold a pen right now if my life depended on it to draw a straight line.  🙂  And I look like a teenager going through puberty b/c I have developed acne all over my body as a result.  And of course it does a number on other body functioning.  BUT…I am breathing.

Did I mention yet that I am breathing???  What an amazing feeling.  Jayden and Josiah came up that week to see me, and I am completely unable to describe that joy.  Jayden kept telling me over and over again how much he loved me and how beautiful I am.  And Josiah kept telling me that my oxygen was at home.  The feeling of being able to tell Jayden and Josiah that I would be home soon was amazing.  A light at the end of this long tunnel.  At not one point did God put me down.  He truly did carry me the whole way.  And when I had no rope left, He reached out and did the rest of the work.  Even though I did lose sight at times as ALL HUMANS DO, He is faithful and kept His promise to me to be here for these 2 amazing children that I have.  And I have been given more time with this amazing man that I just celebrated my 8th wedding anniversary with yesterday.  There was no greater anniversary gift that we could have given to each other than to be discharged from the hospital that day.  We were able to sleep next to one another for the first time since the night of May 4th. It was better than any card, or flowers, or chocolates or even jewelry. Life is a beautiful thing.  I am so thankful for mine and for all of the people in it.  I am HUMBLED…HUMBLED, HUMBLED, HUMBLED by the opportunity that I have to share my story with so many, and to affect so many people.  I read my blog messages and Facebook messages and am overwhelmed every time by the outreach of love and compassion of all of the people that I receive.  I don’t know what I ever did to deserve this, but I will never allow a single breath to leave my lips where I do not appreciate and value all of the people in my life who have made me who I am.  Every day is a gift.  Every single breath is a gift.

I have a long road ahead of me.  I still go to the hospital daily for testing and evaluations and rehab.  I will be here at least 3 more weeks along with a lifetime of regular and rigorous check ups to monitor lung function.  I have severe auto-immune issues now b/c the medicines lower my immune system so I don’t reject my new lungs.  So, I will need to be incredibly careful about not getting sick and taking care of myself.  Any small sickness or fever can ward a hospital stay and a bout of rejection that we don’t want.  I have traded in my nasal cannula for a mask. People will still stare at me, but I don’t care anymore. I have to be very careful about germs and wearing masks and limiting public exposure will be critical.  Especially in the first year.  And I have this whole first year to really make my lungs what I can make them.  I will have so much work to do.  But, I will do it!!!  I am so blessed for this second chance at life.  I just can’t say enough.

I need to get some rest now for rehab in the morning.  But, I really wanted to get a blog entry out.  Thanks again for everything from everyone.  I am the luckiest girl in the world, and I will never forget it.

“Life is not measured by the number of breaths we take, but the moments that take our breath away.”

Thank you GOD for my double blessing and for protecting me and my family through all of this.

PS- I know all of you have prayed your hearts out for God to lift me up and save me from death, but I ask of you to also pray for the family of my donor lungs. His death brought me life, but to his friends and family, it has brought them extreme grief. We are not allowed to know much about our donor, but I thank the Lord for him and may almighty God shed peace and love down upon his family in their time of need. I promise to everything in my power so that his ultimate gift will not go wasted.

God Bless all of you.