Hi friends – happy Monday! Hope everyone enjoyed a good weekend and if you are one of us in the Northern VA area who enjoyed an extra day with the snow – wahoo! As much as I am a summer gal, I really do love the peace and beauty of a snow storm…… oh of course the reasons to stay in and be cozy. But this snow day was VERY needed as we prepare for a busy week. Sadly my weekend that had lots of productivity planned left me on the couch (when I get stressed my female organs suffer….. and this weekend said it all: we are stressed – yuck!). So all in all a snow day was EXACTLY what I needed to do all the things. And included on my to do list was an update for you all on Danny.
Since early November we have been seeing a drop in lung function, but no clear cause (introduction post on this issue). Over the past three months we have done everything we can think of to figure it out: bronch scopes, admissions for steroid IVs (Thanksgiving admission) – with no luck (post hospital stay update), an antibiotics IVs stay – with no luck, they have done treatment at home, and Danny has been tested for EVERYTHING under the sun with only the common cold showing up. The silver lining always was the body is not actually fighting against or rejecting the lungs, so all in all we have been in a positive mindset. Sadly over the past few weeks Danny’s lung function has dropped so dramatically that even though the body is not fighting against the lungs (the clinical definition of rejection), the lungs are officially failing enough it is considered rejection.
So the facts: Danny’s lungs are now dropping about 5% function a week, has numbers are now in the low 60s, and all of the tests are still inclusive.
Now what: we have one more big option that ALL of us are counting on: this is all an issue with Dan’s esophagus. Where the new lungs are connected to Dan’s body could be having an issue (its actually likely reflux since he is not showing any signs of infection, which can also happen at this area), thus reducing the amount of oxygen able to get into and out of the lungs – which would reduce his #s. If this is the case it is a “simple” surgery and he then works to get the function back. THIS IS WHAT WE WANT. THIS IS WHAT WE ARE PRAYING FOR. If it is not this…. we have no idea what it is or what will happen.
Next Steps: This Thursday they will conduct an exploratory procedure to see if the esophagus is in fact the issue. It will take 7 to 10 days for the results and then, fingers crossed, we are scheduling the surgery. After surgery, how he recovers and the lung function is a question mark…. but we are going to hope for the very best.
How does Danny feel: We are very much back to CF pre-transplant life. Danny’s lungs are having to work so hard they are pulling from other body systems and just exhausting him regularly. Now some days he can push past it, or a few hours here and there he is good to fake it…. but all in all the guy with 100% plus function isn’t our reality anymore. This is hard you guys. It plays on your emotions, messes with your mind, and has really got us confused. To combat it we are just taking life literally a day at a time. Heck between how Dan felt…. the snow – we had no idea who was even going to work today! And ya’ll for this a-type – no plan makes me CRAZY! But I am embracing it BIG TIME. We have made it through periods like this before and we can do it again. Just really being gentle with Danny, with myself, and our world. Lots of prayer time, lots of positive language, and lots of hope. That is what life looks like over here.
Finally in another round of “you can’t control life” we unfortunately have a close family member who is now facing a serious medical surgery this week. We have no idea what this will mean for our time and we may even move in with my in-laws to be closer to both Hopkins and the hospital for this procedure and have dog support. So we may be quieter than normal on social media (this isn’t our life so we won’t be publishing it here) – but have been given even more encouragement to remember all we do is be our best selves in each moment and structure life to support that (try to get good sleep, eat well, prayer time, and lots of dog walks and cuddles). The rest is to God.
Tonight I will close with this thought…… none of the above is what Danny and I have wanted for our life. Many MANY times over the past few months we have said over and over again this just isn’t where we thought we would be. But what our life has taught us is many of the things we never wanted and would certainly not have picked for ourselves, have brought us a strength in our marriage and confidence in ourselves that was beyond our wildest dreams. Transplant, the loss of parenthood, our choosing new directions have been harder than we would have guessed….. and yet standing on the other side, I would not trade any of it, because I know God is working in our lives and I know we are able to handle anything together. That has been my prayer and God has answered it 100 times over: make our marriage our rock. So if we have to follow him down some crazy paths that is what we will do. And if you are in a season of pain and struggle – please know, God can use it to bring you something incredible….. something I bet you can’t even imagine. So pray hard, do your best to put your head down and keep walking…. you just don’t know what lies ahead.
Thank you very much for reading and remember to make it a great day!