Hey guys and happy Monday! We are at Hopkins and Danny is preparing for the procedure. This post was supposed to go live this weekend….. but my bladder has decided with each medical need for Danny it wants a little attention too and I wound up with the start of another infection this weekend. My urgent care field trip messed with our timing and the weekend went by in a blink. Anywho…… an update of what is going on with Danny.
Since this fall Danny has been seeing a drop in lung function and you can check out this post for all the recap links if you want to follow the journey. Over the last month Danny has been undergoing specific testing to see if there is an esophagus and reflux issue. The conclusion has been “this must be it” with the THIS being that stomach acid is trying to (and perhaps even succeeding a little) to get into the lungs which our doctor described as dangerous as if Danny took out a car battery and took a big swallow of the liquid. This is leading to aspiration (food and particles from eating getting into the lungs) and causing damage. So in fact the lungs are doing their job – tightening up to not let the dangerous stuff in…. but that means NOTHING is getting in. Again the silver lining here is the lungs are fighting enough to ward off more problems, which is also why when Danny has scans and broncos the lungs look so good – they are being preserved! So we need to stop the reflux/stomach acid and help the lungs know they are safe to open up and breath.
This all makes sense and most of the signs are pointing to this being the case. The hard thing is we can’t see the stomach acid and knowing if the lungs will actually open back up post procedure is a bit of crap shoot. Our team is really encouraged that each time Danny uses his inhaler or does a breathing treatment the lungs open and let’s in air. They seem “ready” for the good stuff. And the fact that often when Danny does a bronch scope and they take a sample there is a little hole left. These lungs are plump with great tissue – not scarred from life or wear and tear that would normally protect against a hole forming from a sample (that is smaller than the top of a needle). All in all these are some dang good lungs and if we can get them up and running, Danny has a really good chance of many, many years with these babies! We don’t like to think about it much, but the life expectancy of lungs after transplant is about 5 years …. but there are many reasons to hope to exceed that and good lungs are a big one.
So there we have it – fixing this issue seems like our best shot: so how do we do it? The short non-medical terms are “esophagus wrap”. To be honest the surgery is what it is and I have not spent a lot of time on the mechanics. What I do understand is they will literally roll and wrap a part of the esophagus up and this will help with stopping the stomach acid from causing problems. Phase two will be getting the lung function back up. We have been prepared this could take several months. However since Danny is in the low 40s (in fact ya’ll I am pretty sure we have reached the high 30s but that number is scary as all get out and he would not tell me if he was), any improvement he will feel quickly. So our doc has already said that we need to celebrate every little 2% increase because it is a positive direction and means things are improving. Plus we were encouraged to mentally prepare: Danny’s body has three phases of healing- 1 from the surgery, 2 from this loss in function, and 3 getting used to good lungs again. Each stage the body has to first rest and recover, then accept the new status quo, and then heal. Slow and steady… slow and steady… which is not really Dan’s preferred method. As you recall the first few milestones post transplant he FLEW through! But we then saw hospitalizations and bumpy periods. This go round we would prefer to have a little more consistency and from what we are hearing best guest means taking it slow.
That being said….. as with most surgery and CF life its about finding that balance and trusting your body. Luckily Danny is an expert in that and I know he may tend to push it a little – but he has become really aware of how to make the most of what he has got in his health and I am confident he will do well with this process too. So today Dan’s surgery will start around noon and last until 3ish. From there we will spend one night in the ICU because of our limited wiggle room with his lung function and just to keep a close eye on his vitals. But if all goes as expected we will be in the step down unit tomorrow and then home hopefully by Thursday (he said Wednesday night…. but let’s not ALL be too crazy!!).
As I shared a little last week Danny and I are trying out something a little new. This season of our lives has hit a beautiful stride. Minus the frustration of Dan’s health slowing down his career plans, other segments of our life are full steam ahead. Currently I am taking a big career step, we have a potential move in the works, some exciting opportunities with our blog, and a few things with my health that require a level of stability that can be hard with CF life. In the recent past each of these things have been started and stopped when health concerns came a calling. But this go round we both have decided to keep going, despite this little hiccup. Last night as we drove up we talked about how hard that is and how weird it feels. We have played it safe so much of our marriage – it almost feels irresponsible to throw a little more caution to the wind and just go for it all. However there is one big thing that has changed, Danny learned what healthy feels like. Danny now knows what it’s like to have aspirations for a career, to want to work towards a future (and ones that aren’t all about med changes and surgery plans). Our life before transplant was meaningful and important – but life after transplant gave Danny a reason to believe in a full life -not just fighting to stay alive. Now that he has gotten a taste of it…. now that we have realized as couple we can face things bigger and harder and impossible and still be ok…. playing it safe feels restricting too. We want to LIVE life as much as we possibly can.
2019 is the year of HOPE and we are doing our absolute best to remain focused there. Not on wishing…. not on wondering… but choosing to be filled with joy knowing that whatever is to come it will have the power to be good. And it is crazy ya’ll but with each step we take in that mindset, we are met with positive reinforcement. Thank you to everyone who is always so supportive with prayers, kind words, love….. we have been given the most beautiful world because of those who choose to be in our tribe. There will never be enough words or time for us to repay you all – but please know I pray for you feveranltvy because your support has given me life, so I pray that God bless yours in return.
Will be in touch later on with an update of how Danny boy is doing……
Thank you so much for reading and remember to make it a great day!