Danny is currently in the hospital working on a treatment plan of intensive Physical Therapy (PT) and IV antibiotics. When deciding how to write an update of how Danny is doing, I reviewed my posts from the past two months to see what I have already shared. Some of my posts are factual updates, where as some are more focused around emotions and the lessons we are learning. So for this post I have opted for a timeline of health happenings, since it has been really unpredictable and changed A LOT .
Danny checked-in to the hospital under very abnormal circumstances. He had been feeling just weird – translates to: he feels really weak and shaky out of the blue and it knocks him on his butt. By the time he was admitted to Hopkins, it was happening so frequently it left him almost lucid, so I ended up living out of the hospital even more than usual too. This odd reaction was on top of a tight chest, shortness of breath and some of the usual reasons he needs a tune-up. So while trying to figure out these weird dips in stability, they also ran IV meds and PT. Additionally, it is not uncommon for Danny to be on steroids to help with breathing when fighting an infection and this time was no different. So we had all the ingredients catalogued, just couldn’t figure out why the odd reaction.
At some point during this stay we determined it was a result of his blood sugars being thrown out of whack. The first thought was due to the steroids (that is a common side effect), but once the steroids were reduced it did not make any difference in the blood sugars or how Danny felt. So before we knew it – Danny was deemed diabetic and placed on a whole new regiment of insulin shots. Not ideal…. a pain in the butt….a fear… and a frustration… but what can you do besides learn how to follow these new set of instructions and add it to Danny’s already 4+ hours of daily treatments.
As we closed out the month two significant things happened:
- The steroids course concluded and just like that the blood sugar issue: GONE. So when we lowered the steroids and it made his blood sugar remain elevated or even spike, it seemed impossible that steroids was the culprit…. but it was. So all those insulin shots, meds, booklets…. gone. Don’t get me wrong, great news, but kinda crazy how much time was spent figuring out this new issue, that ended up being for not.
- Danny’s transplant team felt the time to list was here. But as I have shared before that is quite the cross roads and there are a lot of reasons this can be a really difficult journey to start. So Danny asked for 5-6 weeks to really focus on: diet, exercise, PT, and meds in an effort to see if he could turn this corner and stabilize. If he would stabilize for a significant amount of time he could potentially learn to live (for a bit) at his current lung state and maintain his life outside of the confines of being a 100% full time patient. They agreed to the trial.
Those 5-6 weeks flew by and neither of us addressed the nitty gritty, but the truth was – Danny had not had a lot of success with feeling better. He had taken some positive steps – gym, more water – but he still had to run to the ER for fluids a few times and found that one day being out of the house earned him a day or two on the couch…. not a good sign. We went to that month’s transplant meeting pretty darn sure we knew what was coming: time to list. In fact we had already started to make adjustments such as taking on a lot more help at home: cleaning, cooking, and reducing our other obligations – so if we were moving to transplant phase, we felt semi-prepared.
We met with our team and were thrown for a loop. In a nutshell: Danny’s lungs had gone up 3% and his weight up 3lbs – so they said we don’t have to list. Which was also great news because the requirements for listing were actually in the middle of changing (as of that week) and the levels of meds Danny is on -that were fine before- are actually going to be a challenge for transplant. So apparently this was good news, since we now had extra time to get Danny transplant ready. Never mind the months and months of what we thought we were doing to get him ready…. it has changed. Thankfully the pre-transplant tests Danny already completed were still usable, but the hardest steps to take: adjust the medication levels of an already comprised body system, so he is at a more preferred baseline for surgery – that goal had just moved. And for good measure it was thrown in as a reminder that not many marriages survive this experience and we need to be prepared its gonna get a heck of a lot worse before it gets better. This article was said to be pretty accurate and for me, pretty freaking scary.
So yes – just to really hammer this home – in August we should list…. in September we don’t need to list and even if we needed to we aren’t as ready as we thought…. and marriages fail through this experience…. awesome. My head exploded and I landed on my parents doorstep at 12:30AM that night sobbing. Yup folks…. that happened …. I am 31 and I still need my parents to tell me this is all going to be OK.
Time has helped to move past some of the really scary moments of that September appointment and we spent the end of that month and start of October being patient with our new lifestyle. Danny would have good days…. bad days….and ones somewhere in between, but since he needs to make same changes before listing we were just going to batten down the hatches and go with it. He was a little stronger, his lungs a little healthier, so we would start to adjust the medication levels. Onward and forward.
Early last week Danny said the tightness in his chest was pretty consistent and felt like a hospital visit just to have regular fluids and intensive PT could really help. Since it was his request to get admitted, we were pretty sure it would not require a hicc-man and he could be back home quickly. We let a few days go by before exploring this option further and finally Danny said – I think I should just go and get in a really good place. Plus, he needs to reman really strong as we reduce medication levels – so the hospital will help to keep his body comfortable so the adjustment can continue.
Friday we drove up and admitted him. The admission process always takes a decent amount of time so this 2 hour wait was not horrific – but we had been away from home for quite a few hours (dropping the dog off at my in-laws, some traffic) already and Danny was starting to desperately miss his afternoon treatments. As the time ticked on he seemed to be more uncomfortable and his attempts at steady breathing were replaced with a terrible wheezing whistle. Before we knew it Danny was in a ton of pain and the Hopkins staff was really concerned. As we got settled in the room, he tried to get comfortable, they brought him breathing treatments – but this team of nurses that knows him so well could not get over how sick he looked and terrible he sounded. I got asked “how long has he been like this?” and “why did you wait so long”…. we had just been told Danny was doing better and to go home try to work through it…..how we were supposed to know we pushed it too far?
As this stay has progressed we have been told that Danny ended up having a cold virus which is what hurt him so quickly. He will need to recover from that infection and become stronger. At this time, we can’t adjust his med levels at all. Damage has been done to his lungs by more than just the 3% he gained back and we don’t know if it is the cold or permanent. The advice as of this weekend: he really needs to list BUT we can’t do it now while he has to be on elevated medications and is fighting infection.
The last few months have been full, have been odd, have been confusing – and at this rate show no signs of changing. The emotion around this is harder than I could have ever imagined and the fears even worse. The answers and recommended paths feel like they change on a dime and what we can expect has nothing to do with #s or symptoms, but rather accepting that change will be our only constant. I am no medical professional and I am attempting to lay this all out while pretty worn out myself, so here’s hoping I made sense…. but more than anything else I want to thank you so much for your prayers and support and ask for more. This roller coaster I believe (been wrong before) has left the station and we are heading on a wild ride…. I am grateful to be able to share that story here with those who support us.