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Are You Treated For PH But Not On Oxygen?
Since we all experience PH progression in different ways I thought answers to this question might be informative.
Are you taking medication for PH but not on oxygen? Perhaps you are using supplemental oxygen but only as needed?
Not everyone needs oxygen right away upon diagnosis. My son went years only using supplemental oxygen at bedtime. He eventually transitioned into, “As Needed” throughout the day. When he declined his doctor then instructed him to use it 24/7 because otherwise his lungs were working too hard.
What have you been told by your doctor?
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5 Replies
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So true, @colleensteele, each person has their own path and progression. I was on oxygen before at night and as needed with exertion, etc. But after my COVID, I am on 5 liters of oxygen continuously. The goal is to get back down to 3-4 as before. I am not quite there yet. My O2 stats are high 80’s and low 90s, now.
I know many who are not on oxygen at all, so this is an excellent question, @colleensteele.
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Hi Colleen and Jen, I have not had to be on oxygen but am on 3 meds for PAH, Remodulin, Letairis and Adcirca plus for high blood pressure and kidney issues. Back a year ago I was really sick when we were in Cottenwood AZ and I had to go to emergency then into hospital my oxygen levels were in the low 80s and I did have to go on oxygen. Normally my levels are around 96-97. It does go down while excersizing but so far I have not needed to be on oxygen. Fingers crossed.
Weekend coming up so time a take a break and take care of yourselves, be good to yourself and find a good movie or book that you can laugh out loud!!!
Hugs from WA. -
Hi @cdvol3gmail-com, I do recall that you were really sick right before COVID. I hope and pray that you will continue not to need oxygen. Fingers and toes crossed, too, lol.
Yes, Happy FriYay, Carol. Your kind words and support make me smile. I am certainly planning to watch something funny. Maybe I need to find that sub-topic to see suggestions.
You do the same. I hope that you and Colleen will see some sunshine. It has been sunny here the last few days.
-Hugs from Texas
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This is another important topic that I think many with PH are surprised to hear. Not all who have PH require oxygen. This is a positive in many ways. My goal/dream is to be off oxygen one day eventually. I’m working that way as I am almost to my pre-COVID oxygen usage most days. But then again, I’m thankful to have it to help me breathe and use it as long as needed.
What are your thoughts on this topic? For our newer members, are you surprised by reading that not all have PH require oxygen? Let’s talk about this.
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You are so right; we’re all so different. When first diagnosed my pulmonologist suggested c-pap when sleeping. My o2 levels go down at night, but I knew I wouldn’t be able to tolerate the c-pap after seeing my mom struggle with it. The Dr. tried everything to convince me but being a stubborn Irishman I’d have nothing to do with it. Finally, he cajoled and bargained with me even frightening me with the thought of heart failure. So after a sleep study I gave in to simply using o2, no c-pap. I’m still using the same o2 @2 liters. I think my turning point in giving in was when I traveled to Jerusalem with a portable concentrator and realized that I was struggling with breathing on the plane for awhile. Finally it sank in that I was really going to have to fight this thing. Happy to say my Dr. and I have a great relationship and we laugh about the opposition I gave him in the beginning.
Blessings to everyone. Keep up the phight.
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