Since We've Been Home...

(Originally published on 7/5/14 on cotaforjensh.com)

It’s been almost 3 weeks since Jens was discharged from the hospital. Since coming home, the “caregiver” role has taken a little more time than I imagined. People told us that the hospital part was just the beginning of the marathon- that we (especially I) needed to pace ourselves. This has been true. With Jens being home, it has been a lot easier to prepare food, clean, do laundry, and even take a mid-day nap! We live 4 miles from the hospital, but near the end of his stay there, I would go and stay for the entire day (instead of going back and forth). I am grateful for feeling like I have “more” time to get things done, as well as being in the relaxed environment of our home.

All in a day's work for Jens. 

The biggest difference in our “time” has been learning the medicine schedules. Jens takes around 30 pills a day (plus 21-28 enzymes with food), does 2-3 breathing treatments a day, and has IV meds 3 times a day. (As time goes on and cultures/tests come back showing negative signs of infection and rejection, some of these meds and treatments will cease.) Some of his meds must be taken with food, some without food, some within so many hours of something else, etc. As the beginning, we had to adjust the med schedule to get certain pills at the same time, as well as to fit in his treatments, IV, meals, exercise, and sleep. The first few days we were home, Jens took pills/IV/inhaled meds at 7AM, 8AM, 9AM, 9:30AM, 10AM, 10:30AM, 12PM, 3PM, 3:30PM, 5:30PM, 6PM, 8PM, 9PM, 10PM, and 11PM. As you can imagine, the phone alarm reminders were going off constantly! Thankfully, we’ve figured out the schedule so we have it a little better- only taking them at 7AM, 9AM, 3PM, 9PM, and 11PM, plus some at whatever time he eats meals. In addition, we have to track stats like his weight, temperature, blood sugar levels, and such, so an Excel spreadsheet has also become our best friend. We’ve been using some medicine alert apps to help keep track of med times as well, but at this point we’ve gotten into a fairly steady routine. 

(excel sheet screenshot)

Did you think I was going to organize this any other way?! 

Needless to say, we’ve been a little busy the past few weeks, so we apologize for not updating more! 

Jens’s biggest complaint has been tightness around the incision site. The doctors have examined a few chest x-rays, so the pain could be related to the fact that Jens is skinny and there’s not much “padding” to help with the pain of healing and/or that he may be too active. They don’t normally have patients run up the steps when they get home! Being at home has caused Jens to use muscles and movements he didn’t have to employ while at UPMC. Getting up from a normal bed is still tough and painful, but they just keep telling us that it will get better with time. Jens has a goal to walk at least a mile each day, and his longest continuous walk to date was 2.5 miles! (This is without oxygen and within our neighborhood, which has some sloping hills.) 

We witnessed this gorgeous sunset in our neighborhood on our evening walk! Jens is feeling GREAT after 2 miles, while sporting his new SPF shirt (thanks Ty) and his new HAIRCUT! 

Last Friday, Jens had his bronchoscopy and biopsy, which he will have every few months for the first year and intermittently in subsequent years. They take cultures from tissues and fluids and let them “grow.” We got a call on Thursday that Jens has A-2 rejection. This is a mild form of rejection and something they commonly see. It is treated with a high dose of steroids, given at the outpatient clinic at the hospital over 3 sessions. This treatment began at 7 AM yesterday, and the last dose will be tomorrow morning. We’re not sure if this is related, but he’s had the hiccups multiple times today, which are pretty uncomfortable considering his lingering tightness in his chest area. We hope the boost of steroids will help the rejection, and we hope that the cultures from the bronch/biopsy continue to come back negative (we will know in a few weeks the status of all of them). 

Thanks for your continued support, prayers, and encouragement! 

Abby & Jens