[Gary Kitahara]

Hello Bill,

I’m new to the forum and have been reading about your struggles.  I don’t understand the limit of oxygen at 9.5 lpm, I have been using dual 10 lpm concentrators for a while as my needs are 14 to 16 lpm.  Are you using a humidifier with your concentrator? The saline spray and gel do help, if you have not used a non-rebreather mask you may want to inquire.  I use it at night to sleep ( this allows me to reduce my O2 from 14 to 8 without dropping my sats to help with the dryness) and to exercises I am using the non-rebreather mask to get more O2 as I require 25-30 lpm using 4 concentrators.

Out and about I am using Companion 1000T 1-15lpm liquid in a backpack, this give me 50 to 60 minutes per tank, have 5 companion 1000T.  I refill from 2-46 liter liquid tanks that I keep in the van.  This allows me to be out and still active.

I wish you the best, keep spirits up,

Gary

 

[Gary Kitahara]

Starting from the top, Megan so very good for sharing your life experience with your father.  It could be a path, my life might follow. To Bill sorry for the diminished ability to do what you love, not so sure on the age limit, depending on the institution and your comorbidities I would not give up, Johns Hopkins has had success in your age group from what I have read. I do admire your courage.  To Paula congrats on getting on the list. Charlene keep up the exercise and good diet.

IPF has been with me since 2016, have been using 8+ liters since 6/17.  Currently using 14L to keep sats at 95+, double that to exercise.  So, what I am trying to say is with exercise and lots of O2 I am still very active.  Several months ago, I got an upper respiratory infection, it has taken until now to finally recover, but not fully.  My oxygen needs have increased to the 14L mark.  Still, according to the pulmonary tech I’m good with 3L not moving or talking, however when moving need at least 14L + when doing the 6-minute walk. I monitor my O2 levels in real time using a sleep and fitness monitor https://bodimetrics.com/product/o2-vibe/ I have it set to alarm when my sats drop to 88. I’m 60 and as of today I am on a transplant list. I am looking for anyone who is using 10L + amount of oxygen and still leading an active life. I am when out using liquid oxygen, it allows me to have more O2 in a smaller package that the e-tanks. I carry it on by back in a special backpack for convenience. It can also be pulled in a cart. With the ability to increase the amount of oxygen beyond 10L, has kept my energy level up.
Gary

[Gary Kitahara]

I use a small hydration pack from Bass Pro to carry my Companion 1000T, it would carry 2 M6 or 1 M9 tank. I have been using this pack for several years.

https://www.basspro.com/shop/en/bass-pro-shops-eclipse-20l-hydration-pack