Hopkins Remix – Day 1

Johns Hopkins Hospital January 2017
Johns Hopkins Hospital
January 2017
Last Thursday Danny had his bronchoscope and at first glance all looked really well. They felt the lungs were the right color, the suture was covered in some tough mucus – but still considered acceptable, and there was some fluid – but all still appeared very normal. We left the hospital fairly confident we would not hear from the staff until our next Wednesday meet up. The only concern was the weekend could be a little yucky for Danny: bronchoscopes can stir things up and leave you feeling a little flu like. Overall Danny is just feeling so much better than he anticipated – and he has felt in quite sometime – so he is enjoying the desire to be out living and may not have taken it as easy Thursday night as was advised.


By Friday morning he was feeling awful. He came to deeply regret his hearty Thursday night appetite and slept a lot of the day away. Later that evening, just as we were expecting our weekend guests: Matt and Jessica Lawless, good friends visiting from Ohio, we got a call from one of Dan’s pulmonary docs who said the scans showed some signs of inflammation and why don’t we plan to check in to Hopkins Sunday night to stay for a few days. The proper course of action would need to be heavy doses of IV steroids that really should only be administered under a watchful eye, especially as they are guaranteed to send his blood sugars all over the place. Not exactly what we wanted to hear, but they were not using the R word (rejection) and giving us the weekend at home so we went with it.


Upon arriving Sunday, Danny had really started to feel tired, his chest tight, his incision extra tender, and his diaphragm under a lot of pressure. Most of the time we would say he just had major surgery, with NEW lungs, and a bronchoscope – so of course he feels a little off! But we quickly learned a few more details as to why he may be feeling so icky and maybe that was not to be as expected:


Lungs: The specific type of inflammation they are seeing is called “injury to the lungs”. This could be struggles at the cellular level, it could be infection, rejection, or complications from aspiration. As of last night food particles were being seen in the lungs which confirmed the aspiration. What they can’t tell is if this is just aspiration issues all the way around or potentially some of these other possibilities. The important thing to note here is whatever is going on does not seem to be changing. The X-ray from Sunday night matched the X-ray on Thursday – so the problem is stable and now we just need to fix it. The next few days will be a mix of steroids, antibiotics, X-rays and killing time while we see what happens.


Blood levels: Danny’s blood levels have consistently been hanging in the low range. This can make you feel very tired and worn out, but it is hard for Danny to tell because CF has been making him feel that way for so long already! Just to assure we were removing that issue,  Dan did have a blood transfusion at 3:30AM Monday morning.


I would like to take this moment to thank those who regularly donate blood. The McCombers, the Heppes, Steve Hildebrand…. these are a few of the people that I know who make it a habit of donating as often as they can – some like clockwork as soon as they are eligible. I have donated – thanks to some of these folks in particular (thanks Court!!!), but with no regularity. It always made sense to me to donate for those big moments – national diasters, terrorist attacks –  but to realize the need for blood could pop up for any of us at anytime was a wake up call! Danny needed a quick pint early this AM – and he is just one of hundreds in the hospital. What a small thing these people do that makes the difference in life and death for so many each and every day! I will be making this a priority for me in 2017 and thank those of you who already donate your time and blood.


Blood Sugars: This is going to be a consistent challenge for Danny. Just as he gets used to one approach or a set of levels (the insulin that is needed to help offset what he is eating or not eating) we have to change the medications and the insulin levels are no longer viable. While in the hospital we are going to do a few more trainings in this effort to see if we can get a better handle on the foundation – then we will be ready to tackle any changes.


Swallowing: Since it appears there is some aspirating going on – we are going to have to revisit the swallow training. Luckily there are specialists here for just such a need and they are around to help continue the conversation while Danny is inpatient.


As Danny himself said, we have been so blessed thus far in this journey- gotta be prepared for a few wrinkles. And every time we are at Johns Hopkins I am reminded of the good fortune we have when working with such smart, dedicated, and caring individuals. They have a multitude of ideas, suggestions, frameworks, and pathways to work with when dealing with transplant patients who run into all sorts of oddities. But most importantly, they hope give Danny (and even myself as the caregiver) a way to manage his health, that allows you to still live life. You can’t possibly appreciate that until your in this situation  – but it is such a warm sentiment to hear.


Thank you so much for reading and remember to make it a great day!

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