Almost 5 Months Post-Transplant

I haven’t written in a few months, mostly because I have been busy LIVING!!!  🙂  But, I am doing really well!

Health-wise, I seem to be doing fine.  I have this crazy type of fungus that is growing in my lungs called aspergillus.  I received this from the donor lungs, and aspergillus is a type of infection that a lot of people have.  It is from things outdoors like leaves, grass, mold, etc.  Most people do fine with it, but since I am severely immuno-suppressed, I can’t fight it off.  So, I am on a pretty brutal medication to fight it off.  The past few months have  been a crazy journey of figuring out the right balance of all of my medications b/c my levels on certain things have been off because of the aspergillus medication.  This does cause some pretty strange side effects, but I am taking it pretty well.

I still do chemo once per month.  This isn’t so bad at all.  It’s just a 4-5 hour treatment.  In December, we will do testing to see if the chemo killed the antibodies that formed against my lungs, and if they ARE killed, then I am done with chemo for the time being.  If the antibodies are still present, then I will be extending the chemo for another year.  But, again, it isn’t so bad and I am not too worried about that.  My next treatment is Thursday.

One HUGE struggle I am dealing with right now is my weight.  I lost so much weight during transplant, and once I got on these anti-rejection drugs, I blimped up pretty quickly.  It really makes you gain in the face and belly specifically, and those are the 2 areas that I absolutely DESPISE seeing the extra weight.  My joke with my husband is that I look like a pregnant chipmunk.  Prednisone makes the cheeks look huge (they call that “moon face”), and makes the belly really chubby.  So, I have been on Weight Watchers for a month now…and I haven’t lost a single pound.  On the bright side, though, if I was NOT on Weight Watchers, I would have gained by now.  So, I will just be grateful that I have not gained and keep trying.  I am really hoping to lose about 20 pounds quickly.  I will just keep working at it!!!

I am still exercising lots during the week.  I am up to 3.2 mph on the treadmill for 1/2 hour.  This is HUGE for me considering 4 months ago, I started at .8 mph for 5 or 10 minutes and didn’t think I could do it.  Not to mention that 6 months ago, standing up out of my chair was just out of the question.

Speaking of which, I have to say that I have been overwhelmed with emotion lately thinking about my life this year.  Thinking about what things are like now, and then what things were like before I was hospitalized in May.  I remember so vividly what it was like just sitting in one chair 90% of the day every day staring off into space.  At that time, I watched both boys at home while Jay worked, and I just remember so clearly the feelings of helplessness that I had and how sad I felt all the time at the thought that my kids had so much responsibility being so young.  At 2 and 5, they should not have had to know or do so much.  And I think of what my life was like while I was waiting for lungs in the hospital.  Not even 6 months ago, I was tied down by 4 chest tubes, oxygen, and my inability to even walk a few feet without all of my vital alerts beeping and with me feeling like I would pass out.  All of the brushes with death that I had and all of the scary experiences…and now here I am.

Jayden is in school, and I get to take him and pick him up every day.  I got to go in his classroom and help for his Halloween party!  (I wore a mask the whole time and was very careful.)  Taking Jayden to school on that first day was a gift. He was SO proud to have his mom there and kept looking at me and telling me how pretty I looked. I feel like he is so beyond his age. He has seen and experienced so much for a young boy. It truly hurts when I think of the emotion that he must have inside of him.

The kids are in basketball together and took a Zumba class.  Just the fact that I can feel like a mom again and do things for my kids is the best feeling in the entire world!  It is absolutely indescribable.  I remember before my hospitalization, Jayden had just started Tee-Ball, and I was just too sick and was unable to go to his games to watch him.  My oxygen requirements were also too high and there was no way that I could sit in the heat or make it through much more than a half of an hour without running out of oxygen.  I remember saying to my husband that I would drive up and sit in the truck and watch from the parking lot for 1/2 hour and then go home.  How horrible for a mother to feel that way.  And now, here I am driving all over town doing errands and taking the kids places.  There are no words to describe what that feels like.

And…..GREAT NEWS…..We just had our first family vacation since Josiah was born!!!  We were blessed with an amazing gift from a great friend.  Someone that Jay and I used to work with owns a time share in Wisconsin Dells and literally GAVE us a 4 day presidential suite hotel stay including park tickets in the Dells.  We did not have to pay a dime.  And it was the nicest place.  I got to swim for the first time in years, and got to actually BE WITH and partake in the fun with my family.  Usually, I have always been on the sidelines.  The look on my kid’s faces when I actually got into the pool with them was priceless.  They had just been so accustomed to me being on the sides watching them have fun, that to actually have me with them was a real surprise.  Such a blessing.

So, I am still shaky and weak in a lot of ways and still trying to get stronger.  But, my rejection is still gone as far as I know.  I have a bronchoscopy on December 8th, and that will be the deciding factor.  But, I am just living one day at a time.  I know that any day I could see my doctor and get bad news.  No doubt about it.  But, who wants to live like that??  Not me.  I am living like I am dying, one day at a time.  Every day is a gift and every day is another day that I get to kiss my amazing husband and beautiful kids and tell them that I love them.  I will not waste one day on thinking about what will be.

Truth be told, after going through what I did, I am not afraid of dying.  I know that I have a place in heaven with the Lord, and I know that I will meet my family again.  And that’s why I feel like it is so important to live every day like it is your last.  Anyone could get hit by a bus any time.  I want to make sure that all of my family knows how I feel about them and that I love them and that when the time does come for me, that I am at peace.  But, God willing, I have lots of time left.  These lungs were a gift and blessing from the Lord, and I believe that I have a lot of living to do for Him.

Right now, I am busy living life in what feels like a whole new marriage to Jay.  I feel like a partner again in this marriage and as an equal parent to our boys.  Life is just so good right now, and I am looking SO forward to the holidays.  The celebration of Jesus and an opportunity to be with and celebrate with my family. What could be better than that??