Amber 15, Harrison 7, Elizabeth 13

God sent his Son into the world not to judge the world, but to save the world through him. John 3:17

I was so frustrated and emotionally spent yesterday. I had been to the pulmonologist on Wednesday for a lung checkup. My breathing spirometry test showed that I’m holding steady, so no real improvement, but thankfully no decline in function either. We talked a little about the possibility of a lung transplant down the road if needed. Obviously not something to consider lightly, but just appropriate to put it on the table as a possibility someday. However, with my medical history the question of eligibility will be considered by the Vanderbilt lung transplant team – I would be considered high risk, and it comes down to quality of life. A lot to think about and consider.

{Joshua 1:9} “Be strong and courageous. Do not be afraid; Do not be discouraged, for the Lord your God will be with you wherever you go.”

Yesterday, Thursday, I went to my stem cell clinic to follow-up on the completion of my 6-month drug study trial for Graft vs Host Disease of my eyes and lungs.  I felt the urge to cry – just tired and anxious – but my eyes really don’t make tears so it’s a weird surge of the crying reflex without the release. I went to get labs and then to the clinic on a decent length walk. I had four items behind my ears. My headband, my glasses, my oxygen tube and my mask to keep away any germs.  My glasses were fogging up and my ears were pointed out from all of the attachments. Not to mention, I was out of breath and lugging my oxygen, charger, bag, study papers/drugs, etc. I felt a little clumsy to say the least , especially when one or two items would pop out from behind my ear. Ridiculous . . .

{Ephesians 2:19-22} “Whenever you feel unloved, unimportant, or insecure, remember to whom you belong.”

At my appointment I would’ve had a breakdown but I can’t cry so I just verbalize my frustration. My nurses were completely empathetic especially with it being Christmas and the responsibilities moms feel. There is also a feeling of coming out of the fog after fighting for life and now settling in to a disability that prevents almost all physical exertion – at least many tasks demanding a recovery period.

{2 Chronicles 20:15} “Do not be afraid or discouraged, for the battle is not yours, but God’s.”

The doctor, whom I don’t see regularly, was stern yet encouraging.  He said I must not be discouraged. He said this several times. As a command versus a suggestion. I guess he’s seen it enough that he knows your feelings can affect your outcome. At least that’s how I took it. He told me the transplant can always be an option (if eligible) , but that he’s seen worse lung GVHD patients whose lungs compensate after 5 years and they come off of oxygen. He says that lungs can begin to inflate in different areas, not unlike a single lung compensating for 2. Maybe breathing at 80%. That sounds hopeful. My job will be to keep my lungs healthy since infection can delay lung repair for an extended time.

{Psalms 112:7} “She does not fear the bad news. She confidently trusts the Lord to take care of her.”

I will try to refocus my mind on thankfulness and gratitude.  It is Christmastime, and as the rush slows down and time for enjoyment and reflection arrives, I will try to praise the Lord for His love for us, our gift of eternity with Him and all the blessings He’s given us.

One of the best gifts to me, has been my marriage to Jonathan. He is still my very best friend after TWENTY years of marriage! That is a tremendous gift especially having a partner to navigate this crazy life with. We celebrated last week in the Smoky Mountains for a few nights in a quiet, beautiful cabin. God is good even if we only “feel” the good now and then.

“In one of the villages, Jesus met a man with an advanced case of leprosy. When the man saw Jesus, he bowed with his face to the ground, begging to be healed. “Lord,” he said, “if you are willing, you can heal me and make me clean.””
‭‭Luke‬ ‭5:12‬ ‭NLT‬‬