Monday evening I sat down to write this update and it just wouldn’t come. It’s not uncommon when you like to write to have a little block, but usually if I just keep writing it will eventually un-block. That didn’t happen – it was a simple message… tell the health update, but instead I just keep focusing on the fact that I didn’t have a next step of how we were gong to help Danny and that was overwhelming. So I did the only thing I could … cry it out, journal and pray, and go to bed.
In the fall Danny was completing a physical assessment to go into law enforcement. And he had passed everything (physical tests included) – except this one little level on Dan’s medical review in his oxygen. This is when we discovered a decline in Danny’s lung function and over the next 6 months we would go through hospitalizations, treatments, tests and many appointments to figure out what was going on.
Eventually we landed on the idea that Danny’s lungs were experiencing a breakdown that was due to aspiration. Aspiration means that stomach acid and food particles are getting into the lungs and this can cause serious damage. Well the body knows this – so the lungs were basically panicking and shutting down from letting ANYTHING (including oxygen) through. Although wrecking havoc on Danny and at the worst point he was losing lung function at the rate of 5% a week, destroying the health he had gained (improved weight, energy and breathing at 105%), but lungs reacting this way is a good thing. They are protecting themselves – which is vitally important to their survival. The stomach acid was described as being as dangerous as taking a car batttery’s fluids and sucking it into the lungs. But not these puppies- they were fighting back!
There were different treatments done that we saw when the lungs got the right stuff ( oxygen or inhaler) they would work. So we needed to give them access to what they needed: good, clean airway passage and no aspiration. So we opted for Danny to have the esophagus wrap surgery. To read the details about that surgery you can go to this blog post.
Recovery from the surgery was supposed to be bumpy and Danny’s ability to eat anything solid for awhile was an expected no go. But since his surgery in February we have had a rocky road. The lung function has barly improved and Danny can’t eat much. Some days are better than others but overall he struggles to keep in fluids (especially anything cold) and most food is a challenge. He has lost over 20 pounds and has seen other body systems revolt as a side effect. This has meant multiple hospitlizations, vomit as a regular part of every aspect of his life (his coworkers have been kind and patient) and led to a lot of mental, physical and emotional exhaustion.
So what now? We are still believing the lungs – when given the ability- can recover and we are hopeful they will return to 100% function (right now they are in the 30% range). The question is how long we give the esophagus time to heal and open up (the wrap creates a smaller passageway on purpose, but once the inflammation and swelling goes down, it should open back up and return to normal function, just smaller). Dan’s surgery ended up being more complicated, because he is a slender guy naturally, and so they assumed it just needed more time to heal. But while we wait, day to day life feels the struggle and Dan’s weight/nutritional strength is plummeting.
So the other option is to use a balloon and open the esophagus up. This can be risky because if it destroys the wrap we are back to square one. But if it doesn’t, Danny can get back to eating, breathing, and REALLY recovering. As of last Friday the plan was the wait another 8 weeks and let Dan’s body do this on its own. This left us so overwhelmed and frustrated… but today, out of the clear blue, the team called and said balloon procedure was happening tomorrow.
For all the fears we had with this option- they have melted away. A path forward… a chance at health… the feeling of being steps away from the journey back to where Danny was feeling incredible- we are thrilled. No fears… no negative… no worries! We feel free from the weight of worry and very hopeful.
And tonight I was able to write because we are actually helping Danny- we are giving him support- we have something to believe in…… it is wonderful!
Now once we get through this stage, the plan is to get aggressive with the lungs’ recovery. At this point they have been frozen up since the fall. They need the clear airways and maybe a little help. So Friday Danny is getting a port in to to do treatments multiple times a week to help with immunity and give the lungs strength. Since they are IV treatments and will go on through the fall they needed something more permanent than just IVs each visit. This is a newer treatment, but all of our team has weighed in (including Danny’s transplant surgeon) and there are no damages that can occur- so it’s worth it to see if it will help. We just don’t know how much. More on this later…. but besides time consuming, Danny should not feel much of an affect.
We have a bit more to go on this unexpected journey. But again we have to remember, we discovered this hiccup while Danny was being cleared for a physically demanding job that we never thought possible. The miracles and blessings that are part of our story can’t be forgotten…. even when we are not where we thought we would be at this point. And in a funny way I keep laughing we both have celebrated and enjoyed the heck out of a random Tuesday evening – because of the gift of relief for a plan. We are giddy you guys and it is in this feeling that this life of CF positive moments are powerful.
So I guess that is where I will end this post. I couldn’t write last night…. we have taken a break this season from social media, friends, family and a lot of life becuase we haven’t felt the relief of hope – even when we have been working so hard to cultivate it. And we didn’t want this space or our story to continue to be a place of negative and hopeless. Not that you have to be perfect…. not that life has to be beautiful all the time… but our vision for the future felt lost and we had to remain crazy focused on just getting through it. Not worry about explaining our silver linings. Thank you for your understanding. But tonight we are enjoying the part of this life that is powerful: feeling happiness over power of possibility. We see a little light at the tunnel and so we are gonna reach for it.
An update on Danny’s procedure will be on Bessette Daily tomorrow.
Thank you so much for reading and remember to make it a great day!