Have A Little Faith in We

Wednesday’s have now become Danny’s standard check-in days at Hopkins. Each week (we have since graduated to every other week….and now every third week) we go to meet with the transplant team, catch up with necessary specialists, review his medications, and get a report of what to expect at each stage of healing. Following these appointments, I will share an update of Danny’s progress, what we have learned, and any changes on recovery here on the blog.

Last Wednesday’s check up was summed up as….better! The previous visit we had Danny was looking and feeling pretty terrible – which was true to form since after that visit he was admitted to the hospital. The tremors, overall exhaustion, and general blahs had Dan down big time during our last meet-up, but this time the only complaint – lack of energy. The tremors are under control, the medication levels and dosing seemed to have found a happy medium, and Danny is sleeping more comfortably. Now the only issue is falling asleep and staying asleep… so in the world of Bessette bedtime is somewhere around 1-3AM and then a lot of daylight sleeping hours. This is something we are going to work on and Danny has been given a few different tricks to try and reset that bedtime.

Our doctor and coordinator were quite pleased with the progress, happy with the medication levels, and confident that Danny’s energy will continue to build back. In the meantime they reminded us that it will take every bit of a year for Danny to heal from this fully, but it doesn’t mean he should be sitting on the couch the whole time. It is important to start back to regular activity….but keeping in mind the importance of being patient for how up and down that process will be. This Wednesday appointment happened to fall on exactly 3 months post surgery and we are seeing lots of good progress. The lungs are beautiful and the body’s reaction…..well it is starting to catch up. So we are getting there!

The medication levels today all seemed to be at a good place. Dan felt good, the lungs looked great, and we were not seeing any sign of rejection. The issue is the body is still constantly changing, so the medications will have to as well. In fact the primary medication that was causing the tremors was reduced for a time, but we need to begin reintroducing it. This will be done carefully, but there is still that reality that trial and error are the only method. Therefore it is key that Danny monitor his levels, get to his blood draws and pay special attention to how he feels. We have found some happy places with prescriptions before and everyone is confident we will continue to do so – just need to stay diligent and keep communication open and consistent.

This week we only briefly touched base with our dietician and talked the next bronchoscope (mid-April). The overall message from all of our team: Danny is bouncing back from feeling really lousy and living at the hospital. It is going to be hard and tiring to press himself to get back to a routine of all his treatments, all his charting, and consistent check-ins with the team but the time is now! The lungs are having great success but as our Doc reminded us “the true wins are now in the details”. If we want to see these lungs stay at 98% it is going to be all about up keep and protecting the body, luckily we have the a great team to guide us.

Thankfully this word is still not a part of our story. Dan’s lungs have seen a few oddities – aspiration, the lung puncture, struggling through a blockage  – but they still remain strong and committed to settling into their new home. This journey is long, tiring, and hard…. but this is the thing to keep in mind – fighting to keep lungs the body rejects is a nightmare…..so we will take battling with the med doses any day!

We left that appointment feeling encouraged, hopeful, and as I said to folks over the weekend  – it felt like we were finally truing the corner. But today Danny woke up after a weekend of feeling off to the beginning of a blockage. After a pop into our local ER and some fluids, it appears he has kept the blockage at bay and we have every reason to to believe this week will be spent at home. However, this was a good reminder that the roller coaster is still very much making its journey and we are going to need to just hold on. As of tonight Danny continues to see signs of a progress and relief for his stomach and gut.

Our doctor spent extra time checking in with us – seeing how we are feeling, addressing our fears, and reminding us of the wins so far. This sort of thing is a HUGE blessing – and we are so grateful for a team that not only puts its patients first, but also cares about the caregiver and life beyond being sick.

Looking over just the previous two weeks since our last check-in, the pattern it is quite evident of life right now. The good days are excellent, but the bad days are very frustrating – and they can be back to back with each other….. so now that we hope to continue to have Danny healing at home and his dietary needs are leveling out, we are going to take up that offer for help. Those who have reached out to bring food, help run errands, and visit – we hope to get that system up and running. As I try and get back to work and Danny has no idea what the next hour will hold, little tasks being done help could alleviate some serious stress. So thank you all for being so patient and willing to help us…. We are gonna take you up on that offer!

Jackie