So, I am back with an update on Bruce's quest for supplemental oxygen. He has continued with extreme shortness of breath coupled with a number of Bronchiectasis flares. Cavitary MAC seems to be suppressed for the time being, based on a solid and lengthy string of negative sputum cultures.
Bruce continues to be off the Big 3 plus Arikayce since August, however his doctor is gently pushing for a restart in late January or early February.
He was able to get supplemental oxygen after doing a couple of overnight testing processes that measured a low and consistent blood oxygen rate of 82 over a 40 minute period. He was told if he was in the hospital alarms would have been going off.
He then did a measured walk with a member of his pulmonology team and hit a low of 86. Then he followed with a lung function test which showed a 30% drop in functionality over the past year and a 50% drop from two years ago.
So he's on 2L/minute of oxygen 24/7 with yards of tubing running through the house from a concentrator unit. He's also got a refill system on the top of the concentrator for a couple of portable tanks which give him a little bit of autonomy.
Shortness of breath continues as do the Bronchiectasis flares, both of which are slightly more manageable with the additional oxygen.
I do have a couple of questions for those who are familiar with the use of supplemental oxygen. Bruce gets extreme and sharp pains inside his nostrils, and his nose is very dry, especially in the morning after waking up when he usually has a bloody nose. We were told it was due to the drying effect of the oxygen. We have a whole house humidifier which has been pretty effective in the past. However the addition of a humidifier attachment was recommended for the concentrator unit. Is anyone familiar with such?
He has morning headaches which mostly resolve with a dose of Excedrin, but sometimes not. There are also periods of extreme fatigue which are aggravated by some of the medications that have been prescribed for the Bronchiectasis flares. Does anyone have any experience with or tips for mitigating these effects or are they something he has to live with?
We have had these discussions with Bruce's ID/Pulmonology team at Johns Hopkins with varying results, which they say is mostly due to the acute nature of both the Bronchiectasis and the cavitary MAC.
Thanks for all the good advice as usual. This group has been life saving for us.