3 weeks post-transplant

Things have been going pretty well!  Jay and I are in the hotel, and I am going through a lot to get myself better.  I have rehab daily, blood work, doctors visits, etc.  Getting a transplant is such a huge commitment.  My doctor told me ahead of time that getting a transplant was like completing the first mile in a 25 mile marathon.  And, boy, was she right.

Physically, my body is getting stronger.  I lost a lot of weight, and a ton of it is muscle mass.  So, I shake pretty bad.  But, better every day!  I have been able to do 30 minutes continuously on the treadmill at 2.0 mph.  That is well below a normal person’s walking speed, but for me, that is AWESOME!  And every day, the physical therapy team pushes me more.  (I hate them at the time, but love them when I see the progression.  HA HA)  It is so weird to think that just a month ago, I went from my hospital bed to the chair and that was it.  What a difference a month and a new set of lungs makes!  Truly amazing.  This weekend, I walked at the Children’s Museum with the boys.  I even went to a movie with them!!  I can’t pick them up or do much more than walk slowly, but I am able to feel like a mommy again!  And it feels so great!  Going out to dinner and going anywhere in public is just not something I have done in the longest time.  I would like to put into perspective my year for you: I left the house on Christmas Day to go to my in-laws.  Of course I lugged around my oxygen machines and inhalers and nebulizers, etc.  And somehow I still almost ran out of oxygen.  I didn’t leave the house again until Easter.  Then, I went to my in-laws again to celebrate Easter.  And that was the last time I left my house until the day I was airlifted to Iowa City Hospital on May 5th.  Other than that, all I did was sit at my kitchen table on 10 liters of oxygen and sit.  Sit all day long.  Jayden brought me things and took care of Josiah while I watched them as best I could.  I struggled to walk from one chair to the next.  I stepped onto the front porch maybe 3 times and about had anxiety attacks doing it.  That brings us to today!  Here I am, sitting here in a hotel with my husband.  I just had a weekend of fun with Jay’s family and my boys, and I am looking hopefully to go home next week!  I cannot explain in words to you what this feels like!!!!!!

The really awesome thing is that I have met several other lung transplant survivors while I have been up here.  I am the 57th one they have ever done.  I met the number 10 patient from 3 years ago who seems to be doing really well, and I met several new ones.  It is so nice to see that.  Really encouraging.  They say that getting a lung transplant is switching one set of problems for another, and that is so true.  I have so much work ahead of me, and I will have to stay motivated every day.  Becoming complacent is just not an option.  But, to be given a second chance at life and not take it??  Are you kidding me??  Heck no.  I will fight to keep these little angel wings breathing!!!!!  And I want to beat all of the statistics.  I will make my own statistics, and I will let God dictate that.  And so far, He is hooking me up!  Just like I knew He would.

To answer the questions of where we go from here…Like I said, I am still in the hotel right now.  I have a bronchoscopy on the 12th.  That is where they pull out 4-5 pieces of my lung to see if there is visible signs of rejection to the lungs already.  The fact is that at least 50% of people have rejection in their lungs the first year.  If it is the case, then I will be treated immediately to try to stop the rejection.  This could require hospitalization with IV treatments of steroids or other things.  It just depends on how bad it is.  A lot of times, if it is really mild, they may not even treat it.   If I get cleared on that day with NO rejection (Please God, let there be no rejection), then I will get to go HOME!!!  I would be absolutely elated to be able to go home!!!  That is ideal and what I am praying for.  Of course I would like YOU to pray for that too!!!!  Once I get home, I have to have someone with me 24/7.  Of course lung transplant is a major surgery, and there is so much I am still not able to do.  So, I can’t drive or lift more than 5 pounds, and even some little tasks I still need help with.  Plus, if I needed help, I have to be able to have someone there to get assistance.  And as stubborn as I am, and as much as I want to become independent again, this is a time that I will have to just allow myself to be “babysat”.  It is a step in the right direction.

I am feeling better on the medications as well.  I am not quite as shaky, but I still do feel a lot of the other effects.  And my pain is still pretty bad.  With all of the broken ribs and nerve damage that I have, the doctors say it could be a few months before all of that subsides.  I never knew pain like this in my life, and I laugh b/c I say that I would prefer child birth over this pain any day of the week!  HA HA.  But, of course it is only temporary.  And I have too much to be thankful for to even complain.  So, I will keep my mouth shut now.

Thanks again for all of the prayers.  This week, I plan on writing my donor family.  I haven’t been able to write yet b/c of my shakiness, but I can’t wait to tell them thank you for the amazing gift that their family member gave to me and my family.  Still praying for peace for them in this difficult time.  I can only imagine how they must feel.

Love to you all!  ❤