What’s Going on Danny Boy?

Merry Christmas Eve all! In so many ways I have thought about the recent holiday season as just a day. Thanksgiving was just a dinner we missed, it helps to make us feel like CF hasn’t stolen something us from us. And truly when you start to look around there are so many people struggling with this time of year due to illness, poverty, death. Hard things find us all through out our life and they don’t know to take off for holidays. However with the last few weeks I also feel very compelled to say – it is another day, which means you have been granted life again by waking up today and that alone is reason to  celebrate! So Merry Christmas Eve and my prayer for all who join us here on HALF is that you find the joy of today and tomorrow in whatever is right for you: perfect insta worth tree and home and presents – go you, enjoy it!! Sitting in a hospital, either sick or with a loved one, I hope you can find a little peace in that warm cup of coffee or a holiday movie. May we all get a chance to say how much we love the people in our world, to tell our Lord thank you for choosing to come and walk amongst the living on that first Christmas, and to smile for Christmas memories of past or future ones to come. Danny and I are up and down this holiday but we know there will be a season where we are exhausted by the stress of a full home at Christmas with kiddos or visitors or lots of Shibas, we are going to wish we had appreciated this holiday of naps!
Christmas Eve Naps (ignore the chair whose cover is being cleaned) December 2018
So what is the reason for all the naps this season? Well we don’t know. Same as Thanksgiving, this all is a result of diminishing lung function but we can’t find the reason! So far they have done a full blood work up to see if it is a virus, infection, or pneumonia – results: just the common cold. Next they have looked directly in the lungs with a little camera through a bronch-scope and even took samples of the lungs to make sure there wasn’t an infection in the actual tissue of the lungs or there was an overflow of mucus or even rejection – results: nothing, the lungs look PERFECT (not even mucus from his cold virus). During Thanksgiving they pumped Dan full of steroids to try and fight this – results: no help and his lung function continues to decrease. This time they parked him the hospital to try intensive antibiotics and IVIG. IVIG is when they take antibodies from a bunch of different donors, flood the body with them through IVs so basically his body is so confused by all the foreign stuff it doesn’t know what to fight, settles and stops attacking the lungs (if that is what it is doing).  He had this treatment the summer following transplant once a week because of a levels issue. So far no change. This has led to one pretty big potential: something is going on in the esophagus.
A little medical lesson now from Dr. Jackie. Danny’s new lungs do not have CF and will never get CF. However the rest of his body,  including the esophagus does have CF. So infections can be created in that area and sent to the lungs, even if they won’t get CF. This means a variety of things can happen at the site where the new lungs meets the old esophagus. One of the most common is silent reflux. Even if you don’t feel it – you can have reflux in that area that causes issues and if it is bad enough it can cause decreased lung function over time. Sound familiar? The lungs look perfect, Danny isn’t sick, but when he does his lung function test air is only getting out at 70%. HMMMMMM – seems like a really reasonable cause. So they wanted to test for it. THAT is where things get a little ugly. A tube must be placed through your nose, down into your esophagus to watch what is happening. You must be awake and you must eat and drink with it in so they can see what is going on. If you have been here at all through our NG tube phases that is the same process – it is AWFUL. AWFUL!!!! Danny doesn’t tolerate it well and ya’ll it is rare he doesn’t tolerate things – and this is beyond uncomfortable. The first rounds of these tube experiences is a 20 minute test – which Danny completed. It was awful and resulted in a lot dry heaving and a full day of feeling nasty after – but he did it. The problem is the second round of the test is to keep the tube in for 24 hours and to eat and drink on it. That is a big fat no. No way it’s gonna happen.
Since Danny tried with that test and the IVs were given in high doses, the Hopkins team decided to give him a break and sent him home to recover. If these things start to work and we see increased lung function – GREAT! If they don’t then we will be trying test 2 for the reflux test. There is another option for reflux exploration, Danny can swallow a pill with a little camera where they watch what is happening on a monitor outside his body. We are all HOPING and PRAYING this is the one we can do. All that to say we are still in flux and don’t really have any answers.
This means our status right now is to just let Danny’s body get back to baseline and try to heal itself. We have done the steroids, we have done the antibiotics, we have done the IVIG, and all the tests have been run. They have even turned down his anti-rejection meds, for his own immunity to pump up and with back. So now we wait. Danny feels pretty lousy: tired, weak, rough stomach, tight lungs – and all of these things could be connected to any of the things listed above: the meds, the meds influence on the blood sugars, the IVIG treatment, living in the hospital….. and without a clear answer we are just sorta waiting and seeing too. Mentally this can hard – it feels like over the last few months the progress we have come to count on has diminished. There are days with a lot of sadness for what was and what was going to be…. but also days that are so overwhelmed by sickness again all we can do is live that life. Emotionally it is very much the same thing – we are at a loss with feeling anger and frustration- but then watching what is happening in the CF community and knowing we have it better than many. And the most confusing of all: our life with CF has been full of amazing experiences, the opportunity for important conversations, the growth of an incredible marriage, getting to know some amazing people, being privileged to share this unique life God has entrusted to us with the world….. and yet we are sad to see it rearing its ugly head or to know that we feel stronger for our challenges and others have lost their battles. As my brave husband has said to me this year: “Jac, we do hard things….. and we are good at it”… so we walk forward proud of our scars and grateful we have the knowledge of surviving them to rely on in this season.
Eve of Christmas Eve Movies December 2018
This year the song “Have Yourself a Merry Little Christmas” has left me a little teary eyed. The idea of your troubles being gone…… we will be together if the fates allow…. and choosing to make your holiday merry. We all don’t know what the year ahead has…. we are moving forward from what the past year has brought …. and we are hopeful those we love will remain with us. A little more serious than jingle bells, but it really is true. So we wish everyone exactly where they are the best holiday. If it is a hard one – find comfort where you can. If it a beautiful one, soak it all up and enjoy. And if you are like most people  – somewhere in the middle- choose joy when you can.
Thank you all so much for following along with our journey and sending all the good thoughts and prayers for us… we feel them.
Thank you so much for reading and remember to make it a great day!
Jackie

2 thoughts on “What’s Going on Danny Boy?

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