I went on oxygen recently. I'm still scared. After a lot of tests, they said I have PULMONARY ARTERIAL HYPERTENSION. It is a big adjustment. But gets easier.
I first heard the term mild pulmonary arterial hypertension by looking at a recent echo report on the clinic patient portal - the cardiologist (EP) did not mention it. When I asked, they said they didn't address that issue and I'd need to see a lung dr. So I self-referred - he first thought maybe I had asthma causing this and prescribed an inhaler which I tried for a month and it didn't seem to make a difference. So next I knew I was prescribed oxygen during exercise and at night connected to my CPAP and he wants to do a right heart cautery to more definitively diagnosis. I was SHOCKED. I'm not at all sure this is the problem. Also just recovering (2 weeks ago) from an ablation for Afib. Yesterday I saw my primary for a severe sinus infection that has been going on for a month and she says she doesn't think I need to do the procedure because it is mild and she thinks it could be age related (I'm 81). I am thoroughly confused now. Have not used the oxygen during the day but am using it at night - can't tell a difference. I ordered a wearable O2 ring that I am going to use and track my O2 24/7 and see what it really is.
I first heard the term mild pulmonary arterial hypertension by looking at a recent echo report on the clinic patient portal - the cardiologist (EP) did not mention it. When I asked, they said they didn't address that issue and I'd need to see a lung dr. So I self-referred - he first thought maybe I had asthma causing this and prescribed an inhaler which I tried for a month and it didn't seem to make a difference. So next I knew I was prescribed oxygen during exercise and at night connected to my CPAP and he wants to do a right heart cautery to more definitively diagnosis. I was SHOCKED. I'm not at all sure this is the problem. Also just recovering (2 weeks ago) from an ablation for Afib. Yesterday I saw my primary for a severe sinus infection that has been going on for a month and she says she doesn't think I need to do the procedure because it is mild and she thinks it could be age related (I'm 81). I am thoroughly confused now. Have not used the oxygen during the day but am using it at night - can't tell a difference. I ordered a wearable O2 ring that I am going to use and track my O2 24/7 and see what it really is.
I was diagnosed 4 years ago with low oxygen levels with exertion after a mild case of COVID and a bad reaction to the COVID shots. My pulmonary lung function tests showed mild restrictive lung disease. Cardiac testing showed I had heart failure and pulmonary hypertension.
I started seeing a physical therapist regularly, and she taught me how to breathe correctly, improve my posture, and engage in home strength training.
I am now off oxygen as my fitness level has improved. My oxygen level will drop into the low 80s during exercise without correct breathing and will increase to 95 with correct breathing and posture.
I started out needing oxygen 24/7, but I am grateful that I have improved. With mild activities of daily living and moderate exercise, I don't need oxygen during the day or night.
Medicare has paid for all my visits during this time. I have multiple diagnoses -hypoxia, osteopenia, arthritis, neck and back pain, which helped with insurance coverage.
I was diagnosed 4 years ago with low oxygen levels with exertion after a mild case of COVID and a bad reaction to the COVID shots. My pulmonary lung function tests showed mild restrictive lung disease. Cardiac testing showed I had heart failure and pulmonary hypertension.
I started seeing a physical therapist regularly, and she taught me how to breathe correctly, improve my posture, and engage in home strength training.
I am now off oxygen as my fitness level has improved. My oxygen level will drop into the low 80s during exercise without correct breathing and will increase to 95 with correct breathing and posture.
I started out needing oxygen 24/7, but I am grateful that I have improved. With mild activities of daily living and moderate exercise, I don't need oxygen during the day or night.
Medicare has paid for all my visits during this time. I have multiple diagnoses -hypoxia, osteopenia, arthritis, neck and back pain, which helped with insurance coverage.
I first heard the term mild pulmonary arterial hypertension by looking at a recent echo report on the clinic patient portal - the cardiologist (EP) did not mention it. When I asked, they said they didn't address that issue and I'd need to see a lung dr. So I self-referred - he first thought maybe I had asthma causing this and prescribed an inhaler which I tried for a month and it didn't seem to make a difference. So next I knew I was prescribed oxygen during exercise and at night connected to my CPAP and he wants to do a right heart cautery to more definitively diagnosis. I was SHOCKED. I'm not at all sure this is the problem. Also just recovering (2 weeks ago) from an ablation for Afib. Yesterday I saw my primary for a severe sinus infection that has been going on for a month and she says she doesn't think I need to do the procedure because it is mild and she thinks it could be age related (I'm 81). I am thoroughly confused now. Have not used the oxygen during the day but am using it at night - can't tell a difference. I ordered a wearable O2 ring that I am going to use and track my O2 24/7 and see what it really is.
Regarding "pulmonary arterial hypertension" there are various levels/groups of pulmonary hypertension - depending on cause (see link below). It is important to have correct diagnosis to determine if there are medications and who should treat it. For example, I have pulmonary hypertension group 3 - caused by my pulmonary fibrosis so I have a Pulmonary Specialist in Interstitial lung diseases for that not a Cardiologist.
Right Heart Catheterization is the gold standard for determining if one has pulmonary hypertension and degree. If your transthoracic echocardiogram (TTE) mentioned pulmonary arterial hypertension then it is understandable why they are talking to you about a right heart cath. It is a serious disease. I am surprised your primary provider would voice an opinion as not qualified. You do not want it to get worse! I would look for a pulmonologist experienced in treating pulmonary hypertension (they all do not!).
Unfortunately, one has to find the Specialist with the right subspecialty. My first local pulmonologist signed off on a report that was confusing and said I had both restrictive lung disease and COPD which is an obstructive lung disease. But five more pulmonary function tests at different provider all say I don't have COPD! https://www.mayoclinic.org/diseases-conditions/pulmonary-hypertension/symptoms-causes/syc-20350697
Regarding "pulmonary arterial hypertension" there are various levels/groups of pulmonary hypertension - depending on cause (see link below). It is important to have correct diagnosis to determine if there are medications and who should treat it. For example, I have pulmonary hypertension group 3 - caused by my pulmonary fibrosis so I have a Pulmonary Specialist in Interstitial lung diseases for that not a Cardiologist.
Right Heart Catheterization is the gold standard for determining if one has pulmonary hypertension and degree. If your transthoracic echocardiogram (TTE) mentioned pulmonary arterial hypertension then it is understandable why they are talking to you about a right heart cath. It is a serious disease. I am surprised your primary provider would voice an opinion as not qualified. You do not want it to get worse! I would look for a pulmonologist experienced in treating pulmonary hypertension (they all do not!).
Unfortunately, one has to find the Specialist with the right subspecialty. My first local pulmonologist signed off on a report that was confusing and said I had both restrictive lung disease and COPD which is an obstructive lung disease. But five more pulmonary function tests at different provider all say I don't have COPD! https://www.mayoclinic.org/diseases-conditions/pulmonary-hypertension/symptoms-causes/syc-20350697
Thank you! I think I need to go ahead with the right heart catheter test in order to rule this in or out in spite of what my primary said. With it being said to be "mild" I would be happy to find out I didn't really have that! (Someone on this forum had that experience!) I think I would have to travel to Mayo in Rochester (3 1/2 hrs) or University Hospitals in Iowa City (2 hrs) to find a specialist according to my googling. I can't get the test for a couple months.
Thank you! I think I need to go ahead with the right heart catheter test in order to rule this in or out in spite of what my primary said. With it being said to be "mild" I would be happy to find out I didn't really have that! (Someone on this forum had that experience!) I think I would have to travel to Mayo in Rochester (3 1/2 hrs) or University Hospitals in Iowa City (2 hrs) to find a specialist according to my googling. I can't get the test for a couple months.
Call now to schedule an appointment since you don't know when either place will have availability. Mayo Rochester is of course the best hospital in the country and has specialized Pulmonologists in pulmonary hypertension.
I am on 02 24/7 my doctor told me to increase it to 3 leters when I am walking and when I sit down to go back to 2 leters . Thats usually what the dr tells you Good luck
Yes, we all do use more oxygen when we use our muscles . I go from 3 to 4ltrs. . I sleep with 3. Turn it up during the day , as I don’t sit still much . I am on 24/7 oxygen . Turning your machine up is not so simple with a portable. The most important thing is to use an oximeter. Use it often and be sure you stay above 90% saturation. I was taught to keep it handy and use it often. I was diagnosed with stage 4 Emphysema almost two years ago. I have not had an exasperation . My pulmonologist asked me , how long since I had a cold or the like . It was the fall of 2021. I wear a mask if I go out in public . I pull a cart with an oxygen tank on it . Portable concentrators will not deliver over 3 ltrs. The dial on them is misleading. Keep your oxygen over 90%. It will help you feel better and live longer . I do not care about people ‘s interest or stare. I just do what I need to feel good . Best to all of you . Crystalena (the one with the tank)
If you are getting an oximeter, I’ve found medical grade used Nonin oximeters on ebay for < $25, including shipping. Be sure to get a medical grade one so you can rely on the readings. The ones you buy elsewhere with other brands may not be as reliable.
If you are getting an oximeter, I’ve found medical grade used Nonin oximeters on ebay for < $25, including shipping. Be sure to get a medical grade one so you can rely on the readings. The ones you buy elsewhere with other brands may not be as reliable.
I have Lookee Tech continuous monitoring ring and I really like it. It blue tooths to my phone and they send a program to load on one's computer. It makes nice report with O2 and pulse rate. Great for tracking O2 during sleep and I use when exercising...but hard to get accurate reading with exercise, but better than nothing.
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I first heard the term mild pulmonary arterial hypertension by looking at a recent echo report on the clinic patient portal - the cardiologist (EP) did not mention it. When I asked, they said they didn't address that issue and I'd need to see a lung dr. So I self-referred - he first thought maybe I had asthma causing this and prescribed an inhaler which I tried for a month and it didn't seem to make a difference. So next I knew I was prescribed oxygen during exercise and at night connected to my CPAP and he wants to do a right heart cautery to more definitively diagnosis. I was SHOCKED. I'm not at all sure this is the problem. Also just recovering (2 weeks ago) from an ablation for Afib. Yesterday I saw my primary for a severe sinus infection that has been going on for a month and she says she doesn't think I need to do the procedure because it is mild and she thinks it could be age related (I'm 81). I am thoroughly confused now. Have not used the oxygen during the day but am using it at night - can't tell a difference. I ordered a wearable O2 ring that I am going to use and track my O2 24/7 and see what it really is.
meant to say "right heart catheterization" (can't figure out how to go back and edit a post)
I was diagnosed 4 years ago with low oxygen levels with exertion after a mild case of COVID and a bad reaction to the COVID shots. My pulmonary lung function tests showed mild restrictive lung disease. Cardiac testing showed I had heart failure and pulmonary hypertension.
I started seeing a physical therapist regularly, and she taught me how to breathe correctly, improve my posture, and engage in home strength training.
I am now off oxygen as my fitness level has improved. My oxygen level will drop into the low 80s during exercise without correct breathing and will increase to 95 with correct breathing and posture.
I started out needing oxygen 24/7, but I am grateful that I have improved. With mild activities of daily living and moderate exercise, I don't need oxygen during the day or night.
Medicare has paid for all my visits during this time. I have multiple diagnoses -hypoxia, osteopenia, arthritis, neck and back pain, which helped with insurance coverage.
Physical therapy may help you.
Thank you so much . I really needed these words of encouragement at this time .
Regarding "pulmonary arterial hypertension" there are various levels/groups of pulmonary hypertension - depending on cause (see link below). It is important to have correct diagnosis to determine if there are medications and who should treat it. For example, I have pulmonary hypertension group 3 - caused by my pulmonary fibrosis so I have a Pulmonary Specialist in Interstitial lung diseases for that not a Cardiologist.
Right Heart Catheterization is the gold standard for determining if one has pulmonary hypertension and degree. If your transthoracic echocardiogram (TTE) mentioned pulmonary arterial hypertension then it is understandable why they are talking to you about a right heart cath. It is a serious disease. I am surprised your primary provider would voice an opinion as not qualified. You do not want it to get worse! I would look for a pulmonologist experienced in treating pulmonary hypertension (they all do not!).
Unfortunately, one has to find the Specialist with the right subspecialty. My first local pulmonologist signed off on a report that was confusing and said I had both restrictive lung disease and COPD which is an obstructive lung disease. But five more pulmonary function tests at different provider all say I don't have COPD!
https://www.mayoclinic.org/diseases-conditions/pulmonary-hypertension/symptoms-causes/syc-20350697
Thank you! I think I need to go ahead with the right heart catheter test in order to rule this in or out in spite of what my primary said. With it being said to be "mild" I would be happy to find out I didn't really have that! (Someone on this forum had that experience!) I think I would have to travel to Mayo in Rochester (3 1/2 hrs) or University Hospitals in Iowa City (2 hrs) to find a specialist according to my googling. I can't get the test for a couple months.
Call now to schedule an appointment since you don't know when either place will have availability. Mayo Rochester is of course the best hospital in the country and has specialized Pulmonologists in pulmonary hypertension.
Yes, we all do use more oxygen when we use our muscles . I go from 3 to 4ltrs. . I sleep with 3. Turn it up during the day , as I don’t sit still much . I am on 24/7 oxygen . Turning your machine up is not so simple with a portable. The most important thing is to use an oximeter. Use it often and be sure you stay above 90% saturation. I was taught to keep it handy and use it often. I was diagnosed with stage 4 Emphysema almost two years ago. I have not had an exasperation . My pulmonologist asked me , how long since I had a cold or the like . It was the fall of 2021. I wear a mask if I go out in public . I pull a cart with an oxygen tank on it . Portable concentrators will not deliver over 3 ltrs. The dial on them is misleading. Keep your oxygen over 90%. It will help you feel better and live longer . I do not care about people ‘s interest or stare. I just do what I need to feel good . Best to all of you . Crystalena (the one with the tank)
If you are getting an oximeter, I’ve found medical grade used Nonin oximeters on ebay for < $25, including shipping. Be sure to get a medical grade one so you can rely on the readings. The ones you buy elsewhere with other brands may not be as reliable.
I have Lookee Tech continuous monitoring ring and I really like it. It blue tooths to my phone and they send a program to load on one's computer. It makes nice report with O2 and pulse rate. Great for tracking O2 during sleep and I use when exercising...but hard to get accurate reading with exercise, but better than nothing.