The Health Journey

“Life is not measured by the number of breaths we take, but by the moments that take our breath away.”  This is a quote that I live by every day.  It has dramatically impacted the way that I live and view life.

I was diagnosed with Lymphangioleiomyomatosis (LAM) in March of 2008 when I was 25.  At that time, I was 20 weeks pregnant with my smallest child, Josiah.  Due to my diagnosis of LAM, I had to have a C-Section at 28 weeks gestation.  Being 3 months premature, Josiah spent the first 3 months in the Neo-Intensive Care Unit in Iowa City.  It sure was a difficult time dealing with daily trips to Iowa City Hospital to see my new baby and dealing with my own diagnosis at the same time. The pregnancy is where my disease was discovered because I was developing severe shortness of breath during little tasks. That is when we saw the CT scan of my lungs which showed hundreds of cysts and holes growing.  In short, LAM is a disease that is just a genetic marker defect that causes smooth muscle cells in the lung cavity to create cysts and holes in the lungs causing lung collapses and shortness of breath resulting in respiratory failure and death in women.  It usually hits during child bearing years and mostly is a slow progressing disease.  In some cases, it can progress very quickly.  This is the case with me.  I went from 76% lung function in 2009 to less than 10% lung function in 2011.  I spent my days sitting at my kitchen table on 15 liters of oxygen not being able to walk 3 feet without stopping to rest.  LAM is such a horrible way for anyone to live.  Not being able to breathe is the most awful feeling.  Eating one small bite at a time so I didn’t choke.  Walking 2 or 3 steps at a time and stopping to catch my breath.  Waking up at night gasping for air.  Not being able to speak a full paragraph or sentence without stopping to catch my breath, etc.  Breathing is something that the average person never thinks about and what I have spent the entire last 3 years of my life constantly thinking about.

Everyone always thinks that you are exempt from all of the bad things that you hear on TV and read about on the internet and the newspapers, and I was that person.  I thought that I was invincible.  And then one day to be told that I have an UNTREATABLE and TERMINAL form of lung disease…that was the worst day of my life.  It certainly made me realize that I had taken so much for granted!!  And then to discover that only 1500 women in the entire world had ever been diagnosed with LAM. This was incredibly difficult for me. My pulmonary doctor had seen one case outside of me in 25 years, and she didn’t really know what to do with me.  The only option was a double lung transplant to help extend a patient’s life, and with statistics showing bleak life expectancies following this surgery, I was absolutely devastated.

I have always done my best to have a positive outlook. My children Jayden and Josiah bring me such joy and happiness every day.  And my husband Jay is amazing.  He has stepped up and been an incredible support for me. Over the past few years, he has had to assume 90% of the house cleaning work and handle most tasks with the kids…and he has always done it all without complaining an ounce.  I could not have married a more caring and loving husband.  The “through sickness and health” part sure rings true in this marriage.  Jay truly exemplifies what God designed a husband to be.

On May 5th of 2011, I was home with my children and I developed respiratory failure.  I had 3 hypoxic seizures and both of my lungs collapsed.  I ended up getting airlifted to Iowa City to my lung transplant team where I spent the rest of my days until I received my double lung transplant.  I spent some time in ICU and my health was very touch and go.  There were many times that I didn’t know if I was going to make it to the next day.  Waiting all those weeks and months in a small hospital room going from the chair to the bed with chest tubes keeping me alive was just awful.  It was really hard knowing that my life depended on a suitable organ donor coming available.  We had two instances where a suitable match came available for me and they ended up falling through.  These were incredibly difficult experiences for me, and I was so blessed to have had my husband live at the hospital with me during this time.  This alleviated a lot of stress for me, and he really kept me going. 

I did end up getting my double lung transplant on June 10th.  What a blessing it was that my donor family honored my donor’s wishes to donate their organs to someone who needed them!!  And I feel so passionately about spreading the word about organ donation b/c there are so many people in the same shoes as I was in.  I will never forget all the times that I had to tell my 3 and 5 year old that we were still waiting for “Mommy’s new lungs”.  Especially knowing that after I got the new lungs, I would still have at least a month of hospital time before going home.  I encourage anyone who is not an organ donor OR if you are, to make sure that you share your wishes with your family.  That decision, although a difficult one, can help save many lives.  I know I will never look at organ donation the same again.

This journey has linked me so closely with God. He has put such a great core group of friends into my life to support me and help my husband and I keep the faith. I know firmly that God wants us all well. He does not impose sickness upon us! And I am believing in a miraculous healing for my lungs! Even though I got a lung transplant, I still need a miracle to keep going!  As I said before, a lung transplant is just an extension of my life.  I want a full life and want to see my children grow up! My faith in God is growing more and more each day, and He has already done such a healing in my heart and in my mind. I know that He can heal these lungs and make them perfect.  I believe that with my whole heart and know that He has this all under control. He has great plans for my life, and this is not my burden to carry. God is good all the time, and is amazing now more than ever for me!!

I recently wrote in my blog that I believe that everyone should live like they were dying.  We should all make sure that we hug our loved ones tighter every day, we should never let the sun set on our anger, and we should make sure that we always tie up our loose ends and appreciate each and every experience and moment in our lives.  I didn’t live that way before, and even though the past few years have been horrible physically, they have certainly showed me the way that I want to live the rest of my life. Now that my lungs work, I get to do things that I haven’t for a long time.  And I still sit in awe and gratitude every time.  I have only been home from the hospital now for 2 weeks, but I still can’t stop feeling like I am dreaming all the time.  It is such an incredible feeling and I don’t EVER want to stop living like I am dying.

In closing, I want to thank everyone who cares for and loves my family.  They are my world, and I am thankful to know that they will be taken care of always.

God bless you all.