So I have had this post ready to go for a week. I was dragging my feet about posting it …. I think because I wanted to be able to report that everything had turned around. This was just a visit into bad memories and we were back on the up and up. Sadly that is not the case. I updated it a little…. but am deciding to just hit post. My head thinks it’s time to dive into ALL our plans: the pause button we have hit on a few things, the travel we are likely canceling, the reality that the job mentioned below may not be an option any more…. but my heart feels something else. A mixture of hope that we are wrong and things will swing just as quick back or a sense of dread that we are back where we “belong”: the gray of illness. Neither feel like the100% right, so I am going to do what I do NOT do best….. wait. Below is an insight to rejection and what we anticipated when started this leg of the tour. The rest will percolate for a bit and we will see what we have to say in the coming days.
Two Wednesdays ago Danny had an appointment with his team at Hopkins. He needed to have their approval on some upcoming plans we have and believe it or not this month he will celebrate 2 years post transplant, so they needed their 24 month check-up. The weeks leading up to Dan’s appointment we had seen a bit of a drop in his lung function. This is not necessarily a good thing …. but being over 100% for so long and knowing that each machine which tests the lungs is calibrated slightly differently (that always counts for a few percentages), we weren’t too worried. Well I guess let’s be honest – we just didn’t want to believe it could be a true problem. So we continued to say “probably just a little cold or something in the air. ” No matter the reason, we needed the sign off and Hopkins wanted the 24 month check in… so the appointment was made, with an additional cat scan in case we needed to learn what was happening in the lungs.
The fall season has officially hit in these parts so we all have the sniffles, plus the decrease in temperatures – it sorta seems like little colds are lurking everywhere. We assumed that anything Danny had was just related to that and the cat scan seemed to concur. Evidence of mucus lurked and his PFTs were officially in the 80s. I say officially again because different machines have different calibrations, but Hopkins has always been our baseline since that machine saw Danny on his last day with those lungs and first day with these new lungs. Following the cat scan we headed to clinic to get the real deal. Blood tests revealed no pneumonia or any other specific infection – seemed like a good start. Our doc listened to his lungs, our coordinator looked at all his med levels – everything seemed pretty good. So….. what the heck does this mean? Well, our doc said it: the R word…… this could be rejection.
This is not a word you want to hear in the transplant world. However just as we have learned with other situations, it doesn’t always mean what it sounds like. Breaking it down, it is really just a definition: the body is fighting against foreign organs. Plain and simple – these aren’t his lungs and it seems something (white blood cells or another body system) has determined they need to ward against the danger. Patients can have varying degrees of rejection, you can have just a little rejection and it doesn’t mean its all over from here. Apparently you can wade in and out of it just like an other type of infection. The trouble comes with no clear answer as to how to reverse it (since it isn’t just a straightforward bug) and too much rejection can eventually mean the lungs are in fact failing.
Going into transplant you are told to prepare for rejection and that most patients experience it. In fact it is more rare that Danny has not experienced it….. just a little ironic that he is seeing it now, when we came for approval on living life. Over the last two years our doctors have even cautioned us that we can’t worry about it happening, it is just the reality of transplant.
Based on what they initially saw our doctor broke it down for us: Danny’s lungs decreasing to the 80s probably wasn’t a big deal for him since he has spent a significant time of life breathing in the low 30s. But there reality is that another few weeks and another drop like this and we are talking 60s …. a whole new ball game. So the idea was to have Danny get a bronch done to confirm it wasn’t an infection or obstruction or a troll had moved in and taken up residence. Then treat it “aggressively like rejection”. A heavy dose of steroids and some antibiotics for good measure. It seemed reasonable, so we agreed and started planing for the bronch (it is an appointment that takes up most of the day, Danny can’t eat prior to it or drive afterward, and on the rare occasion it can cause more serious issues like last December), and they asked for one the very next day. Suddenly it felt little more dangerous. So again the Doc reiterated, we just need to get a handle on it quickly. I guess the panic in our eyes said it all and they gave us Thursday to be back home, get our jobs squared away and come back up Friday.
On a side note – even with all this unexpected scary, the team signed off on Danny’s big request. We have a pretty big career aspiration going on and while Danny navigates the process, his Hopkins team had to give their blessing. Although it changes both of our lives and we both want to see the opportunity come to fruition, this is big thing for Danny personally and he has asked I not share it on the blog (yet…). But I will say when talking to the team and addressing their concerns he said “ this isn’t just about me, this is about showing kids with CF what is possible.” And in the end, with the caveat that we needed to get through this moment in time, they did in fact give their blessing and signature. And everyone in that room seemed to take a moment to recognize how far Danny has come and how far this disease has come. We don’t have a cure, but ya’ll – the fight towards cure has gotten us so far!
Even though we are nervous and even though the R word was hanging around… this confidence in Danny made us both feel better. That AND everything else….because EVERYTHING else looks great! Danny’s diet overall, conversion to water from Gatorade, his gym commitment, and efforts in better sleep are paying off. He looks great and everything but that darn lung score was perfection. For a long time, the med cocktail, the sugars, his ability to sleep were a HUGE problem. Today they are certainly still a nuances at times, and can require trial and error, but knowing the recipe for success is a big accomplishment. Today they are under control….. so shouldn’t we be celebrating more?
Friday rolled around and it was bronch time. The procedure was relatively quick – and compared to the one last December that landed us in Fairfax hospital because Danny’s whole travel coffee mug full of coughed up blood required we not even attempt the trip to Baltimore – it was easy peasy! As for the results, even more straightforward: the lungs are perfect. That potential mucus seen on the cat scan – not even a trace! Everything looked beautiful, which is a relief except this means it is rejection. They sent us on our way and said the team would be in touch with a med plan. We weren’t in the car for 10 minutes before the team called and the meds were put into place. It will be a medley of cocktails with a really hard kick over the weekend but as the days progressed eventually some tapering off. Danny asked if they felt better that it was rejection instead of an infection and the answer was neither is good. Even though any possibility can morph into disaster, rejection can be trickier as there is no way to measure exactly what it is and how to fight it. If it is an infection, sometimes there is a manual for meds…. rejection apparently is the wild wild west. Well, I guess we will just grab our boots.
So what does this mean for Danny? Most of the past weekend he felt great – just as he has been feeling. Come Sunday midmorning until Monday afternoon he was down and out for the count. Just the sheer power of the medicine left him weak, feverish feeling (but no fever), and without an appetite. There was a lot of time spent on the basement couch, in the dark, with a hoodie on hiding from the world. My life was ramped up by needing to complete all the week prep, grocery shop, errands, and prep the house… and for the first time in MONTHS I was back doing it alone. So familiar and yet so distant form the vibrant existence that we have now. Returning to feelings and scenes that were straight from the transplant time or sickest days scared us both. But the wisdom of knowing what was possible when Danny is healthy, brought us the courage to just do our best in the present moment, since there is nothing we can do about the future.
Additional to this new treatment plan, this also was an important reminder that we have a life that demands we choose health every day as much as possible. Focusing on clean eating and making time to get that workout in truely is life or death to our family. Certainly being healthy could be the difference in life or death in us all….BUT with these lungs the damage will be done so much more quickly. And in a strong way that has been a blessing! We are constantly talking about how to keep those things at our forefront, so here we go – the most important reason has come to remind us that 30 minutes in the gym is a gift, because it is possible…. which is way better than periods of rejection.
For the final note on our intro to rejection…. none of this is any of Danny’s doing. He has been the healthiest physically, mentally and emotionally he has ever been and doing his best to maintain it. It has been a privilege to witness my miracle and yet I also love the simplest piece like knowing I have someone to run errands with has been a life highlight. We are LOVING life and not because we have plans to climb Mount Everest or spend our days on a cruise, but because we got to know what it feels like to just enjoy a season of life without fear of illness, without the worry of cancelled plans, and leaving behind limits. We have let ourselves dream and it has been wonderful. I know we will get back there….. but in case I forgot to say it in all the hustle and bustle of this season: Danny I am so very proud of you.
Thank you so much for reading and remember to make it a great day!