Have A Little Faith in We

We have not had a health check-in for Danny in quite a bit, so after last week’s BIG appointment, it is time….

Danny’s Progress:
Danny is officially on the mend. We have talked about the progress he has made and of course been encouraged before…. but nothing like this folks! Danny’s lungs are at 105%, he has a lot more energy, the wincing and mumbling and staring off into the distance is gone, and he has returned to a lot of his regular activities: walking the dog (like a lot, versus before it was on a as needed basis or just a little extra) ~ even a little jogging~, reading, seeing folks, cooking, on the ice coaching hockey, and my personal favorite dreaming (travel, future, jobs … #allthethings #itisawesome). Family and friends have commented about how great Dan seems, the docs feel that he has returned to the best version of himself – one they had not seen since at least 6 months before listing, and we are even talking about things that have been off the table for years (serious working out, getting back to full time job, travel). On Wednesday – we received a congratulations from our team and I felt a collective sigh of relief: 6 months out from surgery and we are very encouraged.

How does Danny feel?
Danny is feeling good and happy about getting better. He still says for 105% lung function he would expect to feel better, but there is no question he is way better than he has been! There are still a few things we are watching and the amount of meds going in and out of Dan’s system is still significant. This means muscle aches, headaches, sensitivity around the scar and where his sternum/rubs were separated for the surgery and/or chest tubes, moments of fogginess and jitters aren’t out of the question, and he still struggles to sleep – so there is definitely room for progress. However to consider that he got a new major organ and is doing so well in just 6 months – he is very hopeful!

What are some specifics?
Sleep: This is just one of those things…. Danny has never been a good sleeper. Unless its a really good middle of the day 3PM nap 😃 . Falling asleep is a challenge and with a lot of these new details (muscle pain, blood sugar issues) staying asleep remains a struggle. However with Danny feeling better all the time, becoming more active, and working on a better schedule (three meals a day with set snacks and wake up time/bedtime) this area will only improve.

Tremors: 80% GONE! Danny has had to add a medication into the regiment which can lead to tremors and we have seen a few of them pop up since this new addition over the last two weeks. However they do not interrupt his sleep, do not make focusing or reading impossible, and seem to pass quickly. This is huge and both Danny and I count our blessings DAILY this chapter is looking to be behind us.

Stomach: Good. Holy moly – this is the only piece of the puzzle that was worse than the tremors!! Between blockages and either going too much or too little (this is very normal for CF, but the symptoms were much worse during transplant recovery) Danny’s stomach has been a challenge during healing…. and if we are being honest, a challenge for the last two years. However with the reduction of medication, improvement of diet, increase of water, decrease of drinking simple sugars, and discontinuing of pain medication Danny is officially “regular” and you know what? We basically celebrate it like a kid that is potty training…. we cheer and joke about a sticker chart with each “success”. Truly – the little things are the big things sometimes!

Medications: Again – another major factor in the wellness journey and it seems that balance has been achieved! As I have said here before, transplant is really hard because every patient is different. There is not one set of instructions that works for each person so it is a lot of trial and error. As things change or meds are added and stopped, the whole cycle of trial and error can start over again. My non-professional opinion is that we have found a good baseline and it seems with any changes we can now just tweak. Danny even had to add a much more powerful medication, and yet there does not seem to be a lot of backlash. Medication balancing will be a lifetime situation, however for the first time it is starting to appear manageable and again, we are encouraged!

Specialists: At this stage the only specialist still involved is the dietician. Danny’s blood sugars are still a significant issue. He continues to have high highs and low lows. Over the last three weeks Danny has cleaned up his diet majorly and this seems to be helping him to feel a lot better. The only issue: the blood sugars are still coming up funky! So this week in hopes of stabilizing him, Dan was given a new regiment as to what times of day he measures the blood sugars and takes the insulin, as well as the docs trying to reduce (and just about remove) all the steroids – which can be a big influencer on blood sugar issues. This is a spot that we aren’t out of the woods yet…. but I am so proud of Danny really taking control and trying to kick the bad habits to the curb (Gatorade, desserts, mindless snacking). These choices will really give his body the bast chance to level out. And…. even though I don’t love our new menu, my jeans thank him as well!

Rejection: This word has not been a part of our journey much and we are greatly blessed. Over the last three weeks we are watching two things very closely: Dan’s white blood count and a slight fungus infection in the lungs. The white blood count is not a good thing and to be honest, a bit of a serious concern if not managed. But we have all the check points in place, Danny is doing all the right things to watch it, and we have a plan of how we will treat it this coming week if no improvements. Our team said we need to be very aware of this situation, but not to panic. We have learned to really trust them and are following their lead.

The fungal infection is of course not preferred, but not a huge worry if managed. Danny has added a medication (which is the one that had the potential to throw everything else out of wack, but so far so good) and blood draws to address it. All of us have these sorts of funguses coming in and out of our lungs regularly, it is just dangerous for folks with compromised or sensitive lungs. So Dan is doing what he needs to do medically and giving his body the best chance to fight it as well: no extra sugar, no time in the garden, and extra rest. All signs point to beating this thing!

Oh …. and some antibodies:
Finally Danny has one other thing being addressed – an anti-body issue. This is not uncommon post-transplant, so routine in fact there has not been a lot of explanation around the issue – we just have to follow the regiment for a solution: every other week IV infusions. Danny has to travel to Hopkins every other week and this process does take up to 5 hours, so it is not the easiest thing in the world. In fact, it often leaves him pretty worn out the two days following the treatment. But this is a set plan with a start date – in May – and an end date – in October – with specific set of instructions, very different than most other transplant related treatments. So a little icky on the schedule, but over all it has been an easy thing to accept and treat. Plus it is baseball season and so this could lead to Dan catching a few extra games and he feels grateful to be close to the Orioles!

Things to note:
First and foremost the feelings of encouragement, hope, and being able to breathe deep (figuratively and literally) have brought such a sense of relief that gives way to a wave of elation, it is like living out a dream. Truly this experience has been so incredibly hard, demanding, and scary that we would get so lost in the darkness of where we stood at those moments, the path out was never visible. Yet it did come and we are finding our a way along it lined with so much beauty, it is a totally different world. If this is how the changes are going to continue – I am ecstatic for what lies ahead and grateful for the opportunity to continuing moving forward.

Getting to this point was the hardest thing we have every faced as a couple and I have ever faced on my own. Again, Danny and I talked this weekend about him sharing his experience here and I hope he will, but for now it is only from the caregivers perspective – and there is so much I do have to say. Time will tell as to what is shared, what is kept private, and how our story will continue to unfold. But what I can say is that this period of time broke me and I am forever grateful. For years folks have been reminding me – if you don’t take care of yourself first, you can’t take care of anyone else. Well guess what, they were right. For me the hurtle of getting to the transplant was what I had kept my gaze so fixed on that when I got there I had run out of anything in my tank. The physical experience wore me down fast…. the criticisms and judgements (yup – those things still happen because we live in a world of broken humans) struck me in the middle of my heart…..and I officially felt as if I had lost myself completely. I learned during this time, I am and have not been a whole person. Discovering that harsh truth was the best thing that could have every happened to me, to my life, and to my marriage. The healing that has come beyond just the obvious has not saved just Danny, but myself and us. It has built a new way of life and I am in awe over what is changing. Leaning hard into my faith, grabbing onto my pillars of strength: my people, knowing that being perfect isn’t really my role, and building the necessary boundaries to have my own existence has been life altering. Transplant gave Danny a new chance at life and me an opportunity to start living mine….it has saved just about everything …. even the things we did not know were sick.

Tonight I will end with sharing the latest news in this whole journey… Danny will be writing his letter to the donor family. How this process will continue… what he may find.. what we may learn… and the experiences yet to be are completely unknown. I am not even sure what we can share publicly about it…… but there is no doubt the tragedy of one family’s has been the saving grace to ours and I pray we find the words to share that with them.

Thank you so much for reading and remember to make it a great day!
Jackie