Wednesday’s have now become Danny’s standard check-in days at Hopkins. Each 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.
The first two visits were a bit of a whirlwind as Dan got used to this new process, so I did not complete a full recap. However there were a few key items to note from those visits that I will share before this week’s updates.
Visits 1 and 2:
When looking at his X-rays, PFTs (the test to check his pulmonary function level. Dan’s last pre-transplant test was 23% functioning lungs) in the 60s and 70s, and his blood work results, it suggests he has been transplanted for weeks longer than he actually has! The doctor wanted to know if Danny planned to break all the records or leave any for others?? He is doing exceptionally well.
Adjusting medication is a constant effort with transplant. Right now Dan’s blood sugars, potassium levels, iron levels, steroids, and pain medication are the primary areas of focus. The first week we had a a few minor adjustments, but mostly stayed with the hospital release plan. The second week was a little more exciting since the IV meds that Danny was on 24- hours were concluded.
Swallowing was the primary specialists for that first visit. The process to become able to swallow again can be delicate as the body learns to re-diciper what is food and beverage versus oxygen. As Danny worked through this, his diet was focused around purees (as the extra weight slows the travel time down the esophagus, giving the body a chance to figure out what is being ingested), but even as we got to this appointment he was much more improved than the week before when leaving the hospital. And now good news – Danny has not had to meet with them again since that first week – success!
The dietician is a primary player in Dan’s recovery. The steroids mixed with CF complicated diabetes resulted in Dan being thrown into full diabetes mode following surgery. He is learning to take his sugars, we both are learning about insulin and insulin shots, how to balance carbs and proteins, and how to better read labels. The RD here is very patient, kind and funny – which is a big help! And I have to hand it to him, Danny has really dived in and taken an active role in figuring this whole new style of eating out- and it ain’t easy folks.
Final surgeon visit was week two and all of the stitches were removed. This really does close the chapter on the surgery part- minus the healing of the incision which is going fine (painful and swollen)- but fine! The surgeon was wonderful and we hope to keep bumping into him as we make Hopkins a regular hang out these days.
Rejection will be a regular part of Dan’s health story for the rest of his life. The lungs can reject at anytime and this requires a lifetime of medications to manage. Danny’s lungs will never again have CF, the trade off being you have to manage the transplant maintenance. Some folks have chosen to worry about this aspect- the drugs are many and have some scary side effects- but for a whole new set of lungs that work? I say, worth it and encourage everyone to focus on the positive!
The first year is crucial in transplant recovery. If you make it to that year mark the percentage of success and survival increases. The next milestone is seven years. That seems to be the average for most transplants (but for the worry warts), our doc reminded us that the group who is holding the average at 7 have many that are by passing that anniversary- so we have every reason to believe we will by pass that expiration date too! We even have a friend of my mom, whose neighbor is 25 years post their transplant (thanks Lynn Stegall!!) – so let’s focus on the good shall we? During these years it will be important to make healthy choices – we dont know when Dan will be able to travel and we are trying to limit handshakes while upping Purrell- but we are already very blessed to be starting this road with such a smooth surgery and healthy recovery- that strong foundation gives even more reason to believe in a good outcome.
Things to note:
During visit one, Dan and I were walking down the hall at 2:30- exactly the time he rolled into to OR two weeks earlier- and ran into our Surgeon. To be standing here all 3 of us knowing that the big hill we have discussed and speculated about since starting this process 6 years earlier was successfully completed was a true “wow” moment. We still can’t wrap our minds around the fact that this surgery took place …. and yet here we are. I think God gives us these little windows of time to look back, reflect, take stock, and if we are wise say thank you – because if you don’t stop you will miss these little miracles life has to offer!
During Dan’s second visit they shared that his surgery was officially the 400th transplant for the John Hopkins program. Well- we would be ANY number as long as it went well… but again it feels like such an honor to hold this “record” of sorts. Especially as a patient who is breaking all sorts of records – shortest ICU stay, shortest hospitalization after, and walking himself out of the ICU- to be that number , Danny was happy not just for himself but Hopkins. Just like any other job out there, Hopkins staff work to improve their program and are on a mission to see true progress and success – this surgery being such a knock out of the park was not just about the Bessettes, it is about their team. We know their program has saved Danny’s life and he hopes being number 400, he may have the opportunity to show his appreciation in an even larger way.
All of our medical notes for these visits I keep in my Evernote on one large note. The last time I opened it, prior to this visit, was when we were talking about listing. Another wow moment – just like that the experience we had being worrying and wondering about was done – and we were back in the doc’s office having an appointment just like that visit before…..just a totally different topic. Life is funny, isn’t it? If we had only known when we were worrying so much about the whole being on the list fears….
He is feeling and looking really well. The pain during the day and while active is greatly improved- the only challenging time of day is still trying to sleep comfortably. With each week he finds himself with more energy and the desire to continue to get back to real life.
We had a few medications that were concluded and reduced. This too is a good thing that shows signs of progress.
This week we only visited with the Dietician. Danny continues to iron out the process and ask questions, so again progress. And in the ironing process for this week there was a bit of a confession- Christmas may have been a little more focused on tastebuds than proper diet…. but there is no question we are still doing our best to be mindful of menu and portions. We will keep working on it…. besides don’t most of us start eating healthy January 1? And when learning about all the hidden secrets of why food isn’t always a good thing – I am so grateful for my secret weapon to get 30 fruits and veggies daily. Since the other stuff I am eating that I think is A-OK, yea its not.
There were no other specialists at this week’s meeting. Again – as we start to see these appointments simplify then we know Danny is absolutely on the road to recovery.
Yesterday we learned that a big part of testing for rejection will be when samples are taken during Danny’s regular bronchscopes. This procedure is when they take a very teeny tiny camera down Dan’s throat to take a look around, paying special attention to where the new lungs are attached by suture and then at the new lungs themselves. As you can imagine – tiny or not – this is not a comfortable procedure and one of Dan’s least favorite things of this whole experience. However, while in the ICU he had several bedside, while 100% awake and did AWESOME! So he was getting better with it and knowing this will be a regular task to help manage his new lungs he has been a trooper about just dealing with it. This attitude was rewarded as the big scope that would take place at a month post surgery Danny would be asleep – wahoo!!!! The need for sedition is because of all the rejection samples they will take from various sites in the lungs (about 15 samples).
During our appointment this week some fluid was noted on the X-ray so they opted to do his month out scope on this Thursday: 28 days post surgery. Not only would they be able to take a closer look, but during the scope they also do some “house-keeping” – suction out any fluid and mucus. We did head to Hopkins again yesterday to get that completed and the initial results: all looks great. We will learn what the samples they took have to say at next Wednesday’s appointment.
Things to note:
The question Danny gets asked the most…. the moment we are all so interested in …. the BIG GRANDE FINALE (well not exactly, but you get the idea) – has Danny had “The Breath”? The deep breath where he suddenly realizes what he has been missing out on for years. The answer right now is still no. Yes the lungs are up and working – the day of transplant his pulmonary tests said 23% and in the last week he has gotten into the 80%-82% range. But the combination of the external incision, the internal healing, and the still very sore sternum – Dan’s body is just not allowing him to breath really deep yet. But he has been able to feel air in the lungs in areas where he knows were pretty dormant before the surgery. Stay tuned… we know it is coming and we will likely be shouting it from the rooftops!
On the most recent X-ray Danny saw the wire that is holding his sternum together. Yes – it was separated (they don’t really like to use the word “broken” as it is a very precise incision) to get the lungs in and yes it will heal, but in the meantime it is being held together by a wire that will never be removed. The process necessary to open Danny up for removal of this wire would be way too risky, when it is just as safe to leave it in. So Danny is officially part machine …. or as we like to joke maybe it was just the surgeon’s shoelace? We will never really know.
Each week I will provide these updates…. and I can almost guarantee they will never be THIS long again with three visits. But it is interesting to watch the process unfold and to have all these different benchmarks for healing. The human body and those who make a life out of caring for it are some of God’s most incredible creations. Danny is blessed with a body that is as stubborn as he is to keep fighting and it has been a life changing experience to have complete strangers become close confidents just to see him finally be healthy. What an amazing journey.
Thank you so much for reading and remember to make it a great day!