Health Issues

It has been a while since I have written. The past couple of years have gone decently well. I have had a few issues here and there, but I have come out of it OK.  This is to be expected after a lung transplant. I still can’t believe I have survived almost 8 years. It blows my mind.

This past weekend has been one of the worst weekends I have had in a very very long time.   Friday night I was sitting at my older son’s baseball game. I was feeling a sharp pain in my side and was feeling overly nauseous. I had no idea why I was feeling that way. As per usual, anytime a transplant patient feels off, it requires a call to the transplant nurse. I told her my symptoms, and she told me to get to the emergency room right away. It was my guess that she was thinking it had something to do with my appendix or something else.  I begrudgingly took the kids home, and Jay took me to the emergency room.

From the start, I don’t think the doctor really thought it was my appendix. I didn’t have all of the symptoms there. He requested a CT scan of my abdomen thinking maybe I had kidney stones.   He walked back in the room about two hours later with shaking news.  First he told me I had a urinary tract infection. Not a big deal. But then…he said that the abdomen CT scan showed an overgrowth of lymph nodes in my whole pelvis. They were so overgrown specifically on the left side that they were pushing things inside my pelvis to the right side, exactly where I was hurting. The radiologist specified that it looked like Lymphoma.

Cancer.

My absolute worst nightmare.

I can’t even begin to describe the feelings I felt in that moment.   I immediately started feeling panicked. I turned and looked at Jay, and his face was completely white. The panic on his face induced even more panic in me.  I could tell he was freaking out. He started scrambling and asking the doctor if he thought it could be other things, and the doctor kind of rambled on about a few other things it could be, but that he didn’t think the lymph nodes would be as big as they were if it was something more minor. He told us that he had talked to my transplant doctor, and that they were going to call me on Monday and make a plan with me.  My mind was running everywhere. The room was spinning. Everything was flashing before me and I felt completely out of the moment and unable to control my panic.

I don’t even know how I made it through Friday night. I was screaming and crying and shaking and completely beside myself the entire night. I could not get control of my emotions. You always know after a transplant that you are not guaranteed forever. You know 100% that there are many things that can go wrong.  Yet, I was ashamed at how upset I was.  I have been given 8 extra years already!  How can I be so upset??

On top of that, I started hallucinating from the UTI medication all night.  At one point, I was in the hallway completely convinced that my stomach was “running down the hallway”, and that was one of the signs that I was about to die.  I was a mess, all over the place.  I couldn’t stop apologizing to Jay because of what I was putting him through.  Just so many overwhelming emotions.  He was also very heart broken and emotional in his own way.

The HARDEST moment happened Saturday morning when I was waiting to leave for Jayden’s baseball game.  Josiah was already gone with Jay to his game.  I thought I heard Jayden sniffling and I grabbed his allergy medication.  I walked in his room, and he was under his blankets listening to his favorite Christian album just bawling his little eyes out. Uncontrollably.  I tried my best to comfort him, but it was hard because he was trying not to hurt me by crying.  I immediately turned into protective mom mode and did my best to reassure him I would fight my hardest no matter what it is, and that’s just what I intend to do.  I will never forget that moment.

Today I was in Iowa City for my consultation.  The basics of it is that the transplant team are thinking 2 options…Option 1 is that this could be LAM (the lung disease that I have that caused me to need a lung transplant) that has grown in my pelvis.  I had no idea LAM could do that!  Sickening to think it could possibly be back in my body again.  The only positive is that if it is LAM, there is no sign of it in my lungs at this time, and my lung function has been steady lately.  Option 2 would be Lymphoma.  Both are scary. Neither is ideal or what I want to deal with.  But, both options bring with it different treatment options that can hopefully help me.   I am unbelievably thankful for that.  And whether it’s chemo, medication, or other treatments, I will do whatever it takes to be here as long as I can.

Monday I have a biopsy scheduled.  I have a PET Scan and other blood work results in the works as well.  I truly have the best transplant team in the entire world, and I could not ask for more.  They are also collaborating with the leading LAM doctor in Cincinnati for advice.

Please pray for me.  Pray for my family mostly. After all we’ve gone through, the idea of seeing my kids and husband go through this again is more than I can bear sometimes.  Anxiety and fear get in the way and that is really hard to deal with for me.  Please pray for peace in my heart.  And faith that God has got this.