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.
This week we have been especially looking forward to as our primary doctor was back! He had been away when Danny was in the hospital and not on our rotation the week prior when we had been there for the bronchoscope. In these situations he is such an important part of this journey for both Danny and I. He is a calming presence that knows the perfect balance of pushing for what is best, while still listening. When Danny feels uneasy, this Dr. seems to be the one who can provide the most comfort. When I am feeling lost and like a jerk for pushing Danny – he coaches me on the importance of tough love. We are so grateful for his brilliant mind, gentle disposition, patience, and we were very glad to see him this week!
With all of the big things – Danny is doing great! Lung function was at 98%…… again day of transplant Danny was at 23%. And we have since learned that not every transplant patient reaches 100% lung function – so the fact that he is already seeing this close to perfection is amazing. Dan – the sky is the limit my dear! Additionally we learned that the lung injury they had seen on the bronchoscope still did not have a defined cause, but based on the lung function level, the steroids have had a great response. So we aren’t too worried that an issue still remains, but to be sure we are not going to wait for the normal 4 month bronchoscope and have another one schedule at the end of this month. The only hard part that currently exists is that Danny is struggling with things that affect quality of life: sleep, tremors, and stomach issues.
Sleep: Danny has never been a very good sleeper. His CF pattern was a few days of limited or restless sleep and then he would have a down day and log a quick 8-12 hours catching up. Since surgery he has not been able to get more than 4 hours blocks and it is common for those hours to not be restful sleep. First post surgery it was related to pain, but that seemed to clear up. So then we thought it might be odd med levels that would have him nodding off throughout the day, so he was not tired enough at night to sleep, but that seems to be more stabilized. For now the reason is unknown, but we are trying a few different approaches this week: a different couch, back in bed, with limited screens, and maybe even a little bit of sleep medication to try and get him into a good routine. Compared to new lungs, this issue is not life or death, but as we all can appreciate when your not getting sleep, everything just seems harder! So we are hoping to figure out a solution in the near future.
Tremors: Due to the medication Danny is on we were warned that tremors would be a part of recovery. So when Danny was not able to write or type…..when the remote went from his hand to flying across the room….and when he would wake from sleep because his leg went nuts, we were just going with it. During Dan’s exam this Wednesday the docs did get to witness some medium level tremors and still felt like they were more than they should be – so we are looking at med adjustments to help with this side effect.
Stomach: This is the big one right now. Danny is having a lot of burping, belching, acid reflux, and a decent amount of nausea, and vomiting (side note: the blockage issue has subsided, but is always a possibility we have to manage as well). There are a couple of factors that could be contributing to these issues: the stomach not emptying timely, the esophagus not tight enough to keep stomach acid down in the stomach, or little mini-blockages. Unfortunately since we have seen these problems pretty consistently following surgery, now we are going to have to start addressing them with a few procedures. Danny will be undergoing another more comprehensive swallowing test, then a stomach emptying test, and finally a tracking of the esphogaus. Some of the tests are as simple as eating food that has special trackers in them so the team can watch the digestion happen step by step. Others are more complicated such as a tube that will run from his nose down to his stomach for a full 24 hours to watch the esophagus work (yup – this one is not going to be an overly comfortable event). Following these procedures, we will have a better idea of our solutions options. We have discussed minor adjustments, like managing the stomach acid, to a little more complex – actually going in to tighten the esophagus. All of these things are normal and can be quick to address – but perhaps not the most fun.
This part of the visit was particularly exciting. We did the normal adjusting and removing of things, specifically we are seeing a reduction of the steroids, pain meds, and anti-rejection medications, translates to all is good. But one specific medication that was removed was Danny’s saline breathing treatment. Saline solution was introduced to Danny’s daily breathing medications about 7-8 years ago. It is as basic as it sounds: salt water Danny would inhale through a nebulizer and as a result the lungs would cough and help to expel the extra mucus hanging round the lungs (that is a breeding ground for infection – which is what eventually took over Danny’s lungs: too much scaring and dormant lungs resulting from infection). On a particularly good day – it might even loosen the stuff that was clingy to the walls of the lungs causing actual damage, not just infection (Fun CF fact: This medication was discovered by CF patients who surf in Australia and were most healthy during surfing season = being around the salt water). This medication was very effective – but the downside was its contribution to the 2 + hours of meds Danny had to do daily, and this particular one often led to coughing fits that would induce vomitting. That meant it was working….but then on top of the treatments Danny needed extra time to recover from getting sick. So when the doctor said – “you good if we remove the nebulizer?” – Danny said “yea – only being doing several neb meds for 32 years, but I will adjust”. After years of multi nebulizer treatments daily we are seeing these slowly disappear from Danny’s daily life – CF has really left the lungs!
This week we only saw Danny’s dietician. She is always a pleasure and full of new ideas to help us find that perfect tasty food that also is low sugars, low carbs and careful with sodium 😃 . Due to all the stomach stuff we are seeing with Danny, eating is not really at the top of his list for activities, so currently his weight is down. We are really going to work on that this week with a plan to continue to find good recipes and get him on a better schedule of eating several little meals throughout the day. The other specialists we referenced – swallowing, GI – they will come into play over the next few weeks with those procedures.
This was a very small part of our discussion on Wednesday once we saw that 98%! Again there is that concern of what the first bronchoscope showed, but since the steroids seemed to work their magic we aren’t entertaining this possibility. Just to keep an eye on things, we are moving up his schedule next bronchoscope by a month.
Things to note:
The breath…. Danny is still pretty sure he hasn’t had it. Just to be 100% sure I just asked him and he tried to breathe deep. Results? He said “defiantly not yet”. The incision is still healing, the lungs are still settling and expanding, and Danny is still learning to actually use them. When you have only been breathing in the 20-30% function for a few years, you have to relearn to breathe! We think physical therapy may be a really helpful part of achieving “the breath” and after a few false alarms (this week Dan was too sick too go one day and then the therapist was sick on the make-up day), he will start this week. The one footnote to the breath – Danny has not had that “wow” moment, but he does say things that used to make breathing a struggle, aren’t really an issue right now, for instance walking the dog or taking the stairs. He still can’t run with the dog or race up the stairs – but they are actually an option that won’t end in crazy fatigue or a coughing fit. So I would say still no breath, but he sure is breathing pretty darn well!
Danny can now drive! Ya’ll must have sent enough good vibes and prayers for this freedom to return because – it is back! The only hard part is the nausea, tremors, and general “yuck” makes driving not overly desirable. You know Dan’s still not feeling up to it when I am still doing all the driving. But it still feels nice to have the option and this week he is hoping to even try and get to some additional hockey coaching events.
We have graduated to every two weeks with Hopkins! As you know every Wednesday is our normal check in day – but as of now, things are looking so good we are moving to every two weeks! Again – it is CRAZY to think this past August we were feeling more confused and lost than ever in this whole process and just a few months later surgery is over, done and we are winding up appointments due to successful NEW lungs! God is so good!!
At this stage Danny is starting to feel a few more pings and pangs due to the nerves coming to life. It can be uncomfortable – we have even had a few moments of “ouch, ouch, ouch” or “what the heck is that? Can you feel it if you press right here?” – but overall it is a good thing, these sensations mean things are getting closer to healed. However, it can affect you in a weird way and even zap your energy as things really start to get moving. So in addition to all these changes, being able to drive, looking to reduce our visits – we need to be prepared to be careful. Taking time for Danny to heal, letting him get used to all these things is important. Slow and steady is the name of the race…. and that in no way means its not going well, we just need to be aware.
As we sit in these appointment rooms, again I am struck by how accustomed we have become to this new normal. Its all about checking in on the lungs, chatting about the meds, and addressing the irritations/concerns. Without a second thought we are now a couple living the life of transplant, not of CF. Life just marches on and it is so beyond crazy how quickly we can shift…. But as long as I live I will never forget the moment in this appointment that we were very much reminded of where we stand. While we reviewed some of our concerns, a rapid fire of questions at our Doc about different things we are seeing, what Dan is feeling… as we move through our list our doc gets this smile slowly creeping across his face – which is so odd since in that moment we were talking about problems – and he says “but Danny your 98%, we aren’t problem solving anything about how long your lungs will work”…. and with that he sorta chuckled and encourages us to keep asking, to be direct with our needs, but also reminds us this is all temporary – we got what we came for…. we have Dan’s lungs.
Thank you so much for reading and remember to make it a great day!