Palliative Care & Visiting In-patients

06Dec 

Today we had a Palliative Care Clinic appointment. This discipline is the one that helps patients with quality of life issues while they are dealing with chronic illness. While we know that IPF is a progressive, untreatable and incurable disease it is important to monitor changes as they occur and report them to the transport support team. Things like disturbed sleep patterns, loss of appetite, persistent coughing, etc. each have their own side affects that in turn lead to a declining state of overall health.

Over the past few weeks, I have noticed that Carman’s cough has changed, both the sound of it and the duration of coughing attacks. These usually happen when he changes position after being static for a long period of time. When he goes to bed at night and when he gets up in the morning are the two most obvious positional change that lead to coughing, and this has been an issue for a couple of years. His coughing resulting from getting ready for and into bed (or the revers) used to last 10-20 minutes each day but now lasts anywhere from half an hour to an hour. It is now also triggered when he has been sitting for awhile and gets up to move around. 

When we reported this to the Dr. at our last appt we were told it was common for IPF patients, but they haven’t been able to determine what causes it, or why it only affects some and not all patients. The Palliative Care Dr. has recommended medication, to be taken 1/2 hour before these activities and they have made what I think is a profound difference. The first night Carman took this medication, his coughing lasted for less than 15 minutes!

On the plus side (literally) we weighed in today and found that Carman has gained 3 pounds since mid-September!  Hooray for Ensure, Weight-gainer laden smoothies, and cookies, and ice cream!

Shilpa moved again today - she moved earlier in the week from ICU (one-to-one patient/nurse ratio) to the step-down unit (two-to-one patient/nurse ratio) and today went to the regular floor for post-transplant patients ((3-5)-to-one patient/nurse ratio). This is one more great sign of progress in her recovery and ability to do an increasing amount of activities on her own, which at this stage is measured in tiny steps or what we call marvelous milestones! We're all excited with each accomplishment that moves her toward discharge. Go Shilpa!

After Physio, Carla, Carman, Jess, and I did rounds on 7 - so great to visit, since 4 out of 5 of our in-patient friends on on this floor. I visited with Heather, then joined the rest of the gang (with coffee treats in-hand) for visits with Mark, Retta (scheduled to go home tomorrow) & Shilpa.

Mark & Alysha

Visiting from the hallway with Mark