Howdy again. My last post was rather dreary, so I owe you all an upper in the form of a life update.
How’s the heart?
First off, a big thank you to those who commented and messaged support on here and my Facebook. You confirmed I made the right choice in being open about my struggles. Things have gotten a hundred times worse for a reason I’ll keep to myself for now, but I have begun looking into therapy. There’s a Christian therapy group just a mile away from home, so maybe them if they accept my insurance. I will get through this.
“Where there is no guidance the people fall, But in abundance of counselors there is victory.” -Proverbs 11:14
How’s that hearing?
It’s better than I expected it to be! I’ve heard people say their implants started sounding natural after months of using them, but I think it all sounds natural already. Voices are sometimes too soft and some music is still a big miss, but those are things that will get better with more tuning up and practice. I’ve had one tuning (“mapping”) session so far and it helped a lot with making sounds more full-bodied. My audiologist told me to give her my report quietly because she didn’t want other implant users in the clinic to get jealous that I’m already loving music. That usually takes several months or never happens for many.
One big change since my last mapping is worship music sounds normal again. I’m probably annoying my neighbors with all my singing! But the singing really helps with the whole grief thing, so I ain’t gonna stop.
“My heart, O God, is steadfast, my heart is steadfast; I will sing and make music.” -Psalm 57:7
How’re the lungs?
“Beautiful,” “excellent,” and “perfect” are words my transplant doctor used during my Thursday transplant appointment. My lung function hasn’t changed, but that’s fine since they’re already as strong as a healthy person’s, statistically. No organ rejection! I also get to cut down on my steroid dose by half. I should be a lot less moody and get better sleep because of that.
My doc showed me my CT scans (really fancy x-rays) from 2015 and about three months ago. Seeing them next to each other was a jaw-dropper. My lungs in 2015 had these massive black holes — cavities. You could also see all the netted scarring and mucus plugs. It was appalling. And that was before my lungs started failing in 2016. I never posted them on my blog before, but I actually have pics of my old and new lungs. Click these words to visit a Flickr page with the pics. Don’t worry, it’s only pics of the organs in buckets. No surgery pictures!
“It’s Your breath in our lungs so we pour out our praise.” – All Sons & Daughters
How’re the kidneys and weight?
The kidneys are still in rough shape but they’re not getting worse. It turns out my blood testing lab may have been making my kidneys worse by measuring my medication levels incorrectly (which leads to me being overdosed by transplant meds that are very hard on the kidneys). Maybe there’s hope for my kidneys if we sort out the lab problem…
My weight has been pretty consistent! It’s been about 3.5 months since I did my feeding tube. Wow. I really doubted I would ever be able to keep on all my weight by just eating. Remember, those with cystic fibrosis need double the calories and fat needs of a normal person. It’s hard!
“Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?” -Matthew 6:25
What about fun?
Plenty of it! Been going on hikes with the parents, chillin’ with a friend who went to Mililani High (my old school), and going to church twice a week! Check out my slideshow below.
“So I commend the enjoyment of life, because there is nothing better for a person under the sun than to eat and drink and be glad. Then joy will accompany them in their toil all the days of the life God has given them under the sun.” -Ecclesiastes 8:15
Adamantium Joy 