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    • #28954
      Anne
      Participant

      Hi all, I’m new here, currently undergoing workup for PH for the 2nd time in 10 years (was diagnosed with it by right heart cath with pressure of 45 back in 2011, later RHC in 2012 pressure was 26 so no further follow up). I’ve been having symptoms that could be the PH again, desaturated on 6 minute walk test and echo showed elevated pressure, though the CT angiography scan was clear. So tomorrow I go in for a V/Q scan.

      I hope to get some answers soon.

      In the meantime, I wanted to see if anyone else here experiences oxygen desaturation while walking? I have tw pulse oximeters to double check accuracy. Whenever I walk for more than a few minutes I start desatting. It can go down as low as 80. It goes back to normal once I sit and rest a bit.

      Does anyone else here have oxygen desaturations?

    • #28956
      Jen Cueva
      Keymaster

      Hi @anneleo, I am so happy to see that you can post and join us. I hope that you will get more answers after these tests. I think you answered this before but is this with a PH Specialist who is ordering your tests?

      You are not alone. I, too, and many others start to desat with exertion. For me, at times, just walking to the bathroom does it. Is this on or off oxygen? I am still on 5 liters of oxygen, 24/7. I bet several others also have experienced this and can share.

    • #28976
      Dennis smith
      Participant

      Yes, I saturate stv3vminutes and go down in the 60s . Also quick recovery. 6 minutrvwalk test yields 421 meters . The desat is probably due to pressure causing shunting . Just try to pace myself.

    • #28981
      Jimi Mcintosh
      Participant

      Every time, my oxygen level
      Has dropped into the low 80’s I have been gasping for air, about to faint.
      I had a telemedicine 6 minute walk test and my level never went below 90 and I was desaturated, gasping and faint. 10 minutes of rest and my level went to 98 and I could function.

    • #28982
      KRISTINE
      Participant

      I also have o2 levels drop upon walking. This is a relatively new development, that I have been waiting to get testing done to determine the cause of this.

    • #28983
      carol keilty
      Participant

      I have the same problem and when I seen the cardiologist last week he gave me a new fluid pill to take the fluid from my heart and lungs and it seems to be making me feel better. He doesn’t want my oxygen to go any lower then 90 but I can’t walk and keep it there. I tried oxygen last night on the treadmill and it went between 86 and 88 which is better then 74 to 78. I have to talk to him next week and see if that is acceptable. I can’t walk up even the smallest of inclines it just about takes me out so I don’t. I do walk up the stairs from the basement but I need to stop and get my breath I guess just one of those things. I want to know how hard should I push myself? Is it doing me any good to try to go longer then I am able? I want to know if my lungs and heart will strengthen if I push on. Can anyone tell me that. Thanks for letting me share my troubles
      Carol

      • #28990
        Colleen Steele
        Keymaster

        @carol exercise can be very difficult when you have PH. My son reached a point where he slept downstairs on the sofa because climbing the steps to his bedroom was too hard. Exercise in moderation is good but I suggest not pushing yourself. Most PHers will tell you that when you need to rest…rest.

        Remind me, are you seeing a PH specialist? If not and if it’s possible I highly recommend trying to get an appointment with one.

      • #29005
        Jen Cueva
        Keymaster

        Hi @carol, AS Colleen suggests, please do not push your body too hard. I am happy to read that the diuretic pill helped some with the fluid and your oxygen sats. We all must do what we can; some can only do chair yoga, etc. others can walk miles. Listening to your body and resting when you feel any chest tightness, increased shortness of breath, lightheadedness, or dizziness.

        As far as pushing yourself to improve your lungs and heart, that too is a question for your PH team. Some PHers have had some improvements with the heart and lung issue following their PH team’s treatment plan.

        You mention a cardiologist. Is he a PH specialist? Thanks for sharing. Please pace yourself and take breaks as needed. Keep in mind that each day may be different.

    • #29020
      Dawn
      Participant

      Hi, Anne. Not too long after I was first diagnosed with ph in April 2018, a 6 minute walk took my oxygen level to the lower 70s. My doctor at Johns Hopkins got me an oxygen tank, pulse oximeter, and we went for a ‘walk’. We found that while my oxygen level is fine when I’m sitting still as soon as I stand up my levels drop. We still don’t know why it happens, but it’s very noticeable to me. Even though I have a fairly small house, just walking around here without oxygen can make me light headed and off balance. I started with a portable oxygen concentrator, but it wasn’t giving me enough oxygen to keep me where my dr wanted the o2 rating, so I switched to oxygen tanks last year. I’ve had walk tests where my levels went to the upper 60s, but luckily I recover pretty quickly once I stop walking.

    • #29031
      Jen Cueva
      Keymaster

      Thanks, @dawnt, for sharing your experience with Anne. I am sure that she will appreciate learning that she is not alone.

      As I read your posts, Dawn, it reminds me of when I am in the hospital, and I take it off to step in the bathroom, which is only a few steps away. Mine would drop, and they swore it was not picking up accurately. Once in bed and back on oxygen, we could see it increasing, thankfully.

      I am happy that your team has you set for the best oxygen source for you. Do you also sleep with oxygen? I apologize as I may have forgotten this.

    • #29034
      carol keilty
      Participant

      Yes we are a strange lot. They had a hard time to figure out why my oxygen dropped and at on hospital I went to they thought that their machine was on the blink because that shouldn’t have happened. Finally I got to the doctor I am with now who knew it was that was going on. That was about 15 to 20 years ago. I am still trying to figure out how to keep my oxygen up to 90 when I am doing anything at all other then sitting. With that comes the loss of muscle and gaining weight. I have got to try yoga but when I put my head down like they do in yoga I almost pass out. I guess I will try to make some changes so I can do something like that. This is a good place to get good suggestions and it is really nice to talk to people who are more like me with the problems we have. Have a good day everyone.
      Carol

    • #29035
      Jimi Mcintosh
      Participant

      Yes, we are a strange lot, nothing about out disease fits in the journal of medicine. Slight incline, flight of 6 steps, picking up trash on the ground and we pass out. I have heard doctors describe it as a “imitator” disease, that is similiar to a lot of other things, but not quite.

      • #29052
        Jen Cueva
        Keymaster

        Hi @jimi, I have never heard of PH as the “imitator” disease. It sure fits. Sadly, that is why it is so difficult to diagnose and treat. This is when it is in our best interest to be under the care of a dedicated PH team and Specialist.

    • #29037
      Clyde
      Participant

      My o2 drops when I walk. I had Covid in November and it beat the mud out me. Each day I walk a little further. I do back and forth in the hallway. I’m back to pre covid levels. Exercise made all the difference.

      • #29043
        Colleen Steele
        Keymaster

        @clyde it’s good to hear from you and that you are improving. I love how you utilized your hallway. It is a great example of how you can get exercise without overexerting yourself.

    • #29046
      Teri Lewis
      Participant

      Hello PH friends!
      As a newbie to this site, it’s wonderful to know that many of us manage the same lung challenges. I was diagnosed with PAH nearly 10 years ago, but didn’t start a treatment plan until 2015, when I was also diagnosed with Limited Scleroderma and ILD. (Interstitial Lung Disease) My other autoimmune issues include (Crest–Raynaud’s,Gerd, Telangiectasis, sclerosis in lungs, Sjorgren’s)
      Like many of you, I have a great team of doctors that all work with me at Anshutz UC Medical Center in Colorado…that coordinate my meds, monthly and quarterly tests, 6 min walks, lung function testing, echos right heart caths, etc…Unfortunately I developed lymphoma last fall and have just finished Rituximab infusions and starting to feel great!
      Breathing with any exertion has definitely been a challenge for the past 7 months, recovering from the lymphoma. Currently, I’m on 24/7 oxygen; 6 liters resting and 8+ when moving around to do anything. Living at an altitude of 6800 feet certainly doesn’t help…but it’s home!
      My pressures are running high right now after infusions.. (150-200) so I started diuretics. Fingers crossed they will work! I’ve been taking Letaris and Adcirca daily since 2015. I changed my diet, fluid intake, and exercise routine significantly when diagnosed in 2015…vegan, minimal processed, gluten free, 500 mg salt and drinking green smoothies for breakfast and lunch…which makes a huge difference in reducing my pressures! I also started a special breathing technique to open my lungs and build my diaphragm muscles for 50% more efficient breath. I’m an active 63 yr old, with my own cookie decorating business and I am constantly on the search for new techniques to give more quality of life and certainly quantity of years!
      If I can share anything that has made this journey a blessing…it’s a great support team and my faith that it’s all in Divine order and timing!

      • #29053
        Jen Cueva
        Keymaster

        Hi @terilewis, you have had a lot of medical struggles, haven’t you? I am sorry that you are dealing with so much. I am happy that you want to join us and share your journey with others.

        Wow, my PH team told me not to fly to CO. I was sick at an elevation of 3000, so that is why. My daughter is currently near Denver for a few months.

        It sounds like you have an excellent care team; that is always a plus! I hope that the diuretics help you.

        It sounds like your hard work, research, and daily routines have helped you a ton. I would love to hear more about your tips and also what is in that green smoothie?

      • #29067
        Colleen Steele
        Keymaster

        @terilewis we are happy to have you here. Well, I’m sorry that you have PH but you know what I mean. It is always good to have people you can turn to who really understand what you are going through. May I ask, is your lymphoma in remission now? I’m so sorry you had to battle that in addition to everything else. You have a beautiful positive attitude and I appreciated hearing that in what you shared.

    • #29047
      Dawn
      Participant

      @jenc, yes I do use oxygen at night with my cpap. I was on that before they found the ph and scleroderma. No apology needed for not remembering! It took awhile to get used to the cpap, then they added the oxygen. I actually find a certain ‘security’ using the cpap and oxygen combo.

      • #29054
        Jen Cueva
        Keymaster

        Thanks, @dawnt, for refreshing my mind, lol

        I also can relate to feeling a sense of security, as you use both. I do that when I use my oxygen when I should, hehe

    • #29049
      carol keilty
      Participant

      Good for you Clyde that is quite a battle you fought. Do you have a team of PH doctors who help you? I was wondering how you know how much exercise to do when you have PH? Do you stop if you are gasping for air, pains in your chest, or oxygen levels drop? That’s the big problem with me right now not know when to stop or how hard to push. I guess we are all different but it would be nice to hear other’s experience.
      Carol

    • #29050
      carol keilty
      Participant

      That is sure a problem I don’t pass out I just get really dizzy and only can see black. Is it because your oxygen drops Jim? Or do you even know? I was also wondering if it was because of the medication I take. So many questions and so very few answers. It gets so frustrating at times. There is not one of us who are the same with the same reason that we have this or even the same things going on. I am hoping the longer we can all talk and share our illness we can get some sort of understanding here. It would make it a lot easier to have some mates along the way to really talk to and that can understand the frustration.
      Carol

      • #29055
        Jen Cueva
        Keymaster

        Yes, @carol, so sad and frustrating not to have those answers. With us all in different stages of PH, etc., our exercise tolerance is different As much as you want to push yourself. I suggest resting when you notice any lightheadedness, dizziness, increased shortness of breath, etc. Of course, as always, check with your PH team as far as what they allow you to do.

        When is your next appointment?

    • #29051
      Jen Cueva
      Keymaster

      Thank you, @clydedodge, for sharing an update and your experience. It offers me hope that you are back to your pre-COVID norm. Mine was late November through December, and I am still slowly getting there. I am happy to see you chime in. Please do not be a stranger.

    • #29062
      carol keilty
      Participant

      I will be talking to my cardiologist sometime soon. Soon for doctors isn’t always the same soon for us. I had my blood tests and ex-rays done and he will be getting them off the computer so he will see then anytime from today until next week I’m not sure. What mostly get is chest pain and my oxygen drops down below 90 even with oxygen. I have tried walking on the treadmill just to see what I could do. I am going to ask him about a PH clinic in Moncton see what he thinks about me going there once they have the virus under control a bit more. I guess for now I will just trudge along doing what I can do and hoping to get some good answers one of these days.
      Carol

      • #29064
        Colleen Steele
        Keymaster

        @Carol thank you for the update. I was wondering how things are going for you. I hope the results give you and your doctor some answers and a plan to forge ahead. I do think seeing a PH specialist is important and I hope you can get that worked out too. The waiting for answers is so hard. Hope you hear back sooner than later.

    • #29070
      carol keilty
      Participant

      Thank you so much Colleen. It’s great to have people to talk to. This a hard row to hoe at times. I get down sometimes but having people to talk to who know what I am talking about really helps. I am hoping to hears soon maybe as soon as today but who can tell doctors march to a different drum then most people do. Very understandable they have many people to look after and they do very well by me and I am very appreciative of everything they do for me. Thank you for your concern I will surely let you know when I get some idea of what is going on with me.
      Carol

    • #29071
      Jen Cueva
      Keymaster

      @carol, it is frustrating waiting for answers. I do agree that seeing a PH specialist will make a huge difference. I am hopeful that you will get there soon. With your chest pains and drop in oxygen, I would suggest waiting on the treadmill. You can bring this up at your appointment.

      I do hope that you will get some answers from your local doctor. We are always here for you as you keep you trudging alone.

      Waiting to get answers, especially with test results, can be difficult. I still have yet to have enough patience to wait for long periods. I usually call to follow up with the doctor’s office if I have not heard back soon.

      Please update us as you learn more.

    • #29114
      carol keilty
      Participant

      Good morning. I got a call from the cardiologist on Saturday. All of the other things he was testing were good liver kidneys and so on. He wants me to use oxygen when I am exercising and he is getting me lined up with a rehab right here close to us. So they will be able to show me good exercises to do to strengthen my body and when I should use the oxygen. I don’t know if I should use it when I go shopping and things like that. The new pill I am taking is really doing a good job for me taking the pressure off my chest which is great. Today is a beautiful sunny day but cold so I won’t be going out anywhere. Hope everyone has a good day.
      Carol

      • #29121
        Colleen Steele
        Keymaster

        @carol thank you for updating us. It sounds like progress to me. I think it’s great that your cardiologist is pro-active and didn’t just place you on o2 but is sending you to rehab as well. I think the shopping question is a goon one. If I may, I recommend charting out daily routine and the type of chores your routinely do, like shopping. Then share it with both your cardiologist and the rehab specialists and ask them if you should use o2 during any of it. Exercise can come in many forms. Hope you are having a good day too. It’s always nice to hear from you.

    • #29134
      Peter G Pierce
      Participant

      My O2 saturation falls significantly every time I get up or walk around. I’m on O2 24/7. Fortunately, I am asymptomatic. I operate quite comfortably in the 85 range and really need to get into high 60s before it’s noticible. My PHA did not manifest until I was 66 in Colorado; diagnosed initially as altitude sickness. Docs now suspect that I’d been operating on low O2 saturation for years and just acclimated to it. After all, I’d spent a week in Tibet in 2009 and Cuzco/Macchu Piccu in 2007 without incident. Presently on adcirca, opsumit, and subQ remodulin. Been in quarantine for close to a year, so very little exercise. Still had a good 6-minute walk in November. Just taking it a day at a time. I’ve had both shots (# 2 reaction was unpleasant for couple of days) and am ready to bust out of this gilded cage.

      BTW, Happy Mardi Gras Day. Laissez les bon temps rouler.

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