I am on 10 liters of oxygen...is anyone on that amount.
Ken, It could be that your disease has just naturally been progressing to where you are at now. I don't know what IPF is, could it be idiopathic pulmonary fibrosis? If it is, once it starts it progresses no matter what your treatment is. I have it caused by PH even though I have been on a c-pap since 2004, oxygen since 2006 starting at 3lt now 10lt and have taken Tracleer, Revatio, Adcirca, Opsumit and Uptravi since 2006. My time has run out even with the best medications. I know I am not a candidate for a lung transplant or now a heart lung. I am 71 and it would be next to impossible even if I was approved. First of all, I could not travel to a center that does transplants and live there while waiting and afterward to make sure I was healing successfully with no sign of rejection and have someone there with me for all that time. It is ok
No Im on 6 sometimes 7. I am on the transplant list for and lung transplant but still trying to decide if its worth it. I am on veletri 24/7 which is a pain to carry around all the time. Was your transplant worth it? How long since you had it done? You look great in the picture. Im 57 and the more I read about it the worse the odds are for me
Gosh Sheila, you are living dangerously. If you have PH you are probably on PH medications unless it is caused by a left heart condition that PH medication doesn't help. If your oxygen is dropping to 62 when you exercise and exert yourself, your doc should know and will probably tell you to turn your oxygen flow up higher so that your oxygen is above 90. I was down to 40 when my oxygen was first measured by a respiratory therapist. Aside from causing stress on your heart and the rest of your body, low oxygen levels deprive your brain of oxygen and you of your being able to think clearly.
Ken, we are told above 88 and aim for mid nineties, of course the closer to 100 the better.
You are so right. I thought you could get tanks already filled delivered. They make up to a 10 liter portable but they are like pulling around a piece of luggage on bigger wheels. Does the pendant help?
No I am going to talk to Drs. At Atlanta and New Orleans. I was turned down at UAB because of my pulmonary hypertension. You can buy a oxygen regulator on Amazon for tanks that will go 10 liters or higher. Your oxygen supplier cannot get you one but you can buy and put on yourself. Cost about $25.