Calm in the storm

Nothing like a visit with Dr. Vose to make serious things feel much less severe. After 20 months, I still haven't figured out if she really believes that things aren't as serious as they appear or if she just puts on the calm face knowing that worry and stress never help the situation. I guess when you're one of the best in the world, you've seen just about everything. Regardless, I always leave the appointments feeling like she's in control and knows exactly what needs to be done. She said that they still don't have the pathology reports back from my bronchoscopy but that it appeared the reaction was caught early. With time, she's optimistic that the damage can be reversed “maybe not 100% but pretty good” (but we all know that God is stronger than the steroids or the damage so I'll hold my breath for great!). For now, I'm back to weekly lab draws, monthly trips to Omaha and a 2 month steroid taper. Joy! As for daily life, she said that I could continue to do whatever I feel up to doing - right after I get my flu shot tomorrow!
As always, I can't thank everyone enough for the prayers, words of encouragement and support.

"I believe that I shall look upon the goodness of the Lord in the land of the living! Wait for the Lord; be strong, and let your heart take courage; wait for the Lord!” ~Psalm 27:13, 14

And now to the lungs...

I don’t have a ton of information, but figured I’d send out what I know to get the prayer train in motion! The pathology from the lung biopsies showed inflammation which is pretty non-specific so they’ll send the slides to Nebraska for a second opinion. But, the CT scan show constrictive bronchiolitis which can be a response to all the treatments – they aren’t sure of the severity or of the exact type but said that it tends to be tough to control and doesn’t respond well to treatments. Dr Vose has restarted all my medications including some extra steroids and I’ll be heading up to Omaha end of next week to see her. Not a great report, but as a good friend reminded me earlier this week, God doesn’t listen to the medical community and laughs at the “impossible”. He’s brought me through a lot of trials despite the odds and will not stop supporting me now. Please pray that once again God will show his mighty hand, give the doctor’s wisdom, give me peace to trust in His care, and that through it all, He will be glorified!
“For surely I know the plans I have for you says the Lord,.. plans for a hope and a future”

Renewed focus

Thank you for all your prayers! As has always been the case, God once again proved faithful and has given my heart peace over the current situation. The CCS retreat couldn't have come at a better time. Getting away and sharing with friends helped me regain my focus and put things in perspective. God continues to protect me and make His presence known. The theme of the weekend was “Free to Choose” - and for me that meant that I have the choice to trust in God's infinite wisdom or dwell on what I think is best for me. Once again, it felt like my daily devotional on Saturday had been hand-picked for me: “Even when God's plans at first sight seem to portend nothing but disaster, we have to see things with supernatural vision. There is a higher plane of existence which we do not fully appreciate. That ominous turn of events will perhaps serve as the necessary shadow in a beautiful work of art. After all, is not God's wisdom infinitely greater than our own?”
I am in a much better state of mind than I was Friday (even though today the doctor told me my PFT's look like those of a 70 year old man that's been smoking since he was 2). She also said that based on those, she couldn't tell me what was going on or if there was a treatment. They need to do some more tests so today I had a CT and tomorrow I'll have a bronchoscopy. We should have results by Thursday but I'm kind-of wishing that I wouldn't get them until after my trip to Boston.
“I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you.” ~Isaiah 46:4

Another hill

This has been a hard week for me – not because I’m feeling any different than I usually do, but because, once again, the reality of where I’m at and what I’ve been through is smacking me in the face. My strength has been coming back nicely, I’m sleeping well, gaining weight, enjoying work, and as you know was ready to “re-enter” the world of sports, but this shortness of breath will not leave me alone. Initially I thought it was due to being out of shape, but as the weeks have gone on, it’s not getting better and doesn’t feel like being winded from pushing too hard. To no one’s surprise, I started myself on some asthma meds and inhalers to see if that would help and it’s really done nothing. So, after bringing the issue back up to Dr Vose, she decided that I should repeat some lung tests (PFT’s) to check my lung volume… (I’ve been doing these about every 3 months since I got sick and they’ve always been normal.) Yesterday I went in for the tests and this morning Omaha called to tell me that the results aren’t good, “severe restriction” of lung function. I’m presuming that it’s related to the treatments and the transplant, but no one really wants to tell me the outlook – permanent? Reversible? Progressive? All they would really tell me is that I need to see a pulmonologist. I have an appointment Monday which I guess is a good thing so that I won’t have to wait very long for some sort of answer. I’ve received a lot of shitty news over the past 20 months but have always had the grace to accept it and keep my spirits up. I pray that that will happen again, but right now I’m really having a hard time just making it through the day without crying. If I stop working or give myself time to think about it, the tears start to flow. For so long, one of my largest motivations to keep pushing was to get back in the game, back on the field. It’s been so hard sitting on the sidelines, watching everyone do what I used to take foregranted, but I’ve been able to because I believed that one day I’d be able to run again. I pray that God will not take that dream from me. So if you’d like to add another prayer request to your list, please pray that the doctors will have knowledge in how to treat this, that the damage to my lungs will not be permanent, that I will continue to trust God’s sovereignty, and that he will give me the grace and strength to accept whatever is to come. For now, I’m going to try and enjoy a beautiful fall weekend at the CCS retreat. I’ll update when I know more.