This topic contains 44 replies, has 16 voices, and was last updated by  Wilma Doan 3 months, 2 weeks ago.

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  • #11705

    The six-minute walk test is used to monitor patients with chronic heart and lung diseases, like pulmonary hypertension. By monitoring the patient’s vitals, pulse and oxygen saturation while they walk for six minutes, doctors can assess the patient’s tolerance for exercise.

    Check out our PH News website for more information about this test here: “What Is the Six-Minute Walk Test?

    Have you ever done the six-minute walk test? What was it like?

  • #11708
     Brittany Foster 
    Keymaster

    I have done many 6 minute walk tests and different variations of it. I have done a step test where you go up 3 stairs over and over again so it is as if you are climbing stairs. I only made it a minute before my oxygen dropped below 85. Usually when my oxygen gets below 85 my doctors will stop the test. I was involved in a research study studying the effects of female hormones on lung function and had the 6 minute walk test once a week for a month. I found that when I had more estrogen produced by my body, I was less winded on the walk test. Very interesting and I’m curious as to what the study shows. Has anyone else had differences in their walk test ? What were they effected by ?

  • #11716
     Kathleen Sheffer 
    Participant

    Okay, I’m just going to say it. I HATE the Six-Minute Walk Test. It’s the most easily replicable test to use to collect data across all centers, but I feel like the margin for error is really high. When I did the test at Columbia, my physician would clear the hallway and make sure no one crossed my path for the full test. In contrast, at Stanford, I had people walking in front of me all the time with no direction to make way for me from the technician. I walk fast and they got in my way! I covered a good amount of distance, but my oxygen saturation would drop to mid-70’s by the time I sat down. I felt okay, though, and they’d be back up to my baseline within 2 minutes. Once, a technician couldn’t get the machine to work for 30 seconds after I sat down and by the time she got a read on me my sats were in the mid-80’s. Not accurate! I would get frustrated because if I pushed myself to cover more distance, my doctors would be concerned about how low my O2 dropped, but when I walked at a slower pace to keep my sats good, they’d tell me I hadn’t walked enough distance. Maybe I shouldn’t be so competitive about these sorts of tests, but I think it’s natural to want to do better (and to not have people wandering the hallway interrupting your flow). Rant over.

    • #13371
       Donna 
      Participant

      Kathleen, I so appreciate your post! I had a 6MWT a couple of weeks ago, and ignored the advice given to slow down or stop if I was symptomatic. I walked very briskly (even the tech trotting along behind me told me I could slow down if I wanted to 🙂 and pushed through some pretty severe chest pain, which did stop me a couple of times anyway. I managed to make 375m, which looked impressive, but it would have been much less than that if I had done it “comfortably.” That was with my oxygen on, as well.

      Later, my pulmonologist kindly explained that I really shouldn’t have been pushing myself so hard, because as physicians they have to justify treatments they order. They do that with objective testing, like the 6MWT. So…I may have shot myself in the foot if my PH doc wants to order an expensive med and the insurance company says, “But look, she can walk 375m!”

      • #13375
         Kathleen Sheffer 
        Participant

        I feel your pain, Donna! They don’t do enough coaching on these tests to help us understand what they want to see. I’m still unclear on how they weigh the distance versus the exhaustion. It seemed like I always did it wrong. I hope your doctor is still able to order the meds you need, or if insurance rejects it, he will have you repeat the test with new information, and perhaps no oxygen.

      • #13376
         Kathleen Sheffer 
        Participant

        I feel your pain, Donna! They don’t do enough coaching on these tests to help us understand what they want to see. I’m still unclear on how they weigh the distance versus the exhaustion. It seemed like I always did it wrong. I hope your doctor is still able to order the meds you need, or if insurance rejects it, he will have you repeat the test with new information, and perhaps no oxygen.

      • #13388
         Brittany Foster 
        Keymaster

        Donna,
        I completely understand. Unfortunately with insurance sometimes it’s all about the numbers that they are presented with and not as much about how we are feeling while it is all happening. I wish they took into consideration what our symptoms are, but unfortunately it is mostly dependent on concrete data that they can see. Same goes for those that are trying to qualify for oxygen. For many insurance companies they need to see that the levels go below 89 in order to get approved, even if someone feels just as bad with a 90 oxygen level or low 90s. It’s super exhausting to have to fight with companies but hopefully your doctors will be able to get around this so you get what you need.

  • #11739
     Beverly Repouille 
    Participant

    I dislike the 6-minute walk test as well, but for different reasons. I have bad knees and a bad back. I don’t walk very often because my knees hurt so badly that I breathe harder which makes the breathing worse. The 6-minutes test is pure torture for me. I’m usually extremely out of breath and crying by the time we get done!!!

    • #11746
       Brittany Foster 
      Keymaster

      Beverly,
      That sounds so tough ! It’s one thing to not be able to breathe during it but to have difficulty and symptoms from other conditions sounds like torture ! Do you use supports for your knees or any support for your back ? I get a lot of back pain during the day from a spinal condition I have. I use heated back wraps and they give some relief! I hope you find something that helps ease your discomfort. Thinking of you !

      • #11747
         Beverly Repouille 
        Participant

        Thank you Brittany! No support for my back or knees. Cool makes my back feel a little better, but I don’t always remember to use it.

  • #11872
     Jolaine Cowherd 
    Participant

    I sympathize with many of the comments about the walk test, especially about the wide margin of error. I am an incomplete paraplegic from T6 (mid-chest) who can walk short distances using 2 canes. Yes, doctors ask me to do the walk test. This is what I know after quite a few of these ambling strolls down hospital hallways. How well I do is dependent on the time of day and how I feel. In general early morning is my best time when I am just off nightly oxygen and BiPAP. In the afternoon I’m lucky to go a quarter the distance. The same with my pulmonary function tests. Generally the results vary considerably depending on the time of day. Morning is good, noon looks worrisome, and afternoon is downright breathless. To get consistent meaningful results I ask for my pulmonary function tests as early as possible, because that way I get results I can compare. My advice to get tests you can use for monitoring your health is to figure out a plan: time of day, how long you’ll rest before hand, think about meals (what you’ll eat before the test), etc. Try to be your best going in, then definitely do not over do it, just push yourself kindly. Then get a copy of your test, put it in your notebook and you’ve begun getting information you can use as a marker over time.

    • #11888
       Brittany Foster 
      Keymaster

      Jolaine,
      I find it amazing that you are able to advocate for yourself and realize the different times of day when you are feeling your best. That means that you are in tune with how you are feeling and are able to recognize when you will have an “easier” time. Speaking up about that is truly great and shows that you are an active part of your health care team!

      I love your advice about getting a copy of your test. The techs usually have a copy right away, I always request a copy and that way if my doctors are asking for it (even if it’s not reviewed yet) I can still give them something to look at.

      Thank you for the pointers! We really appreciate it!

  • #11882
     Terry D. Blissett 
    Participant

    I’ve done the cardio stress test and passed it. I have a pressure of 36 for mild hypertension. I can exercise vigorously in my spinning class for 30 minutes. Yet when I do, I get extreme fatigue for two or three days after. I also get spikes in heart rate and shortness of breath when bending and/or lifting in the 130s bpm. Any ideas what’s going on? I am a active but overweight and otherwise healthy. Love to exercise. Help please!

    • #11887
       Brittany Foster 
      Keymaster

      Terry,
      like you, I also have loved and still love to exercise and am considered “mild” PH but get very symptomatic and easily tired and fatigued when exercising and post exercise as soon as those endorphins go away ! It’s like getting hit with a bag of bricks! As far as the weight lifting, I would ask your pulmonary doctor or PH specialist about that. I know many with PH are advised against lifting heavy weights. I have been told that it’s because it actually constricts movement of your chest wall and your shoulders and these muscles are used for breathing. Anything that hinders my breathing would cause me to be more symptomatic. Even simply raising my arms over my head when putting groceries away leaves me more out of breath. Definitely ask the doctor for some specifications about that ! I’m sure they will work with you and your fitness level and ability.

  • #11891
     Terry D. Blissett 
    Participant

    Great info! Thanks. I will let the doc know.

  • #11895
     Beverly Repouille 
    Participant

    I was told not to do anything that makes me hold my breath and/or bare down as that could cause me to faint. It’s taken me a while to notice all the things that I do during the day in which I hold my breath (like getting up out of a chair or bending over) or baring down (pushing something). I now try to blow out when I’m doing any of those activities that I find myself wanting to hold my breath or bear down.

    • #12028
       Brittany Foster 
      Keymaster

      Hi Beverly. Yes, anything that has me hold my breath is so hard for me. I immediately become dizzy. Sometimes I hold my breath without even knowing that I’m doing it with exercise!

  • #11896
     Terry D. Blissett 
    Participant

    Other than the pressure of 36, My Heart appears otherwise healthy by heart measurements and stress test results. Does anyone else have this? I had a saddle pulmonary embolism and was hospitalized 6 months ago. I am now clot free. Should I be having symptoms of PH when my heart and test results say I am normal or healthy.

  • #12026
     Jolaine Cowherd 
    Participant

    Hi, Some of you have wondered about the fatigue after exercise. Normal people’s lungs have the capacity to increase circulation during exercise, so pulmonary pressures do not increase. That mechanism is compromised in our bodies. We exercise and we can markedly increase our pulmonary pressures and consequently we can put more pressure back on our right ventricle. Exercise is vital but should be done with care to watch those PAPs.

    Also, fatigue is directly related to the oxygenation of our muscles. It’s a complex supply system. Air has to get in the lungs. Air has to be exchanged. Blood has to have the right number of transport trucks to move oxygen to the muscles, etc. Breathing is exercise. Serious exercise! Our muscles do not get enough oxygen as it is because there is a block in the supply system (the transfer system of oxygen and carbon dioxide in our lungs). So, even our respiratory muscles are going to get more tired than the normal person. When those muscles get tired, we get a double whammy of fatigue, greater than expected. Be gentle with your bodies.

    Any system that helps promote thoughtful breathing will help with PH. They did a study of integrative medicine and they found that meditation is the most helpful of all alternative medicine strategies. Second is Tai Chi. They are not sure it’s the exercise of Tai Chi or the meditation that goes with it. Both rated better than yoga.

    There are systems of breathing that teach a person how to breathe better, using different muscles such as back and side muscles to breath. These would be beneficial because they allow other muscles to pick up the slack and work as a team with the normal muscles used. Anything that helps our bodies move more efficiently and easier is a direct benefit.

    • #12027
       Brittany Foster 
      Keymaster

      You are right. Breathing alone is exercise for many of us. I think it’s a good idea to work to strengthen the accessory muscles used in breathing. Recently I had an episode where I had to be hospitalized because I was unable to take breaths in. After a few breathing treatments they said that I was lucky my body could recruit the other muscles like the back and shoulders to help with breathing because my chest muscles just weren’t doing it for me ! Practicing those breathing strategies could be very useful especially meditation where you are solely focused on that. Thanks for all of your input!

    • #18212
       Wilma Doan 
      Participant

      Terry,
      Less than a year ago I had a pulmonary embolism and all that goes with it. Later my doctor told me I was clear and would probably never have another clot. After about a month I was feeling same as before the embolism. After another scan it was determined that there were more clots coming and they did not know from where.
      Kind of a long story but point I’m making is, if you feel bad maybe something needs checked further. Best of luck to you.
      Wilma

  • #12029
     Jolaine Cowherd 
    Participant

    Hi, Brittany,
    People do not realize how much work breathing is for a normal person. How many people with PH are on BiPAP for respiratory fatigue? Or even know about it? CPAPs are often used for obstructive sleep apnea, but a BiPAP can be used as a respiratory aid to help rest those muscles. It’s like a mini-sort-of non-invasive ventilator.

    A CPAP is constant pressure all the time. A BiPAP is one pressure when a person breathes in and then the pressure drops when the person exhales, making exhalation easier but while still maintaining a certain level of pressure in the lungs. This is the same thing that we do when we get very tired and breathe out through pursed lips, like breathing out through a straw. For people with respiratory fatigue for any number of reasons, a BiPAP used occasionally during the day can be fantastic, giving those breathing muscles a badly needed break.

    The majority of medical professionals think of these devices only as aids for snoring, but they can be far more.

    While I’m on this subject, as our hearts fail we will generally develop sleep-disordered breathing. It goes with the territory. We need to be aware of this and request regular overnight pulse oximetry studies and when in doubt a polysomnogram (an overnight study in a sleep lab). I tried to get a top sleep specialist to write an article about this for people with PH and didn’t succeed. We need more information about this to reach people with PH. We need to know more what happens to our bodies over time and how we can be better prepared.

  • #12030
     Brittany Foster 
    Keymaster

    Jolaine,
    Thank you for this. I use a bipap machine during the day as well. Right now they are thinking an ASV might be good for me to help me when I stop breathing and have pauses in my breathing. I have developed central sleep apnea that is secondary to all these lung conditions. Using the bipap gives me that break that I need but as soon as I’m off of it , it is hard to adjust back to my normal! It feels strange to use it and then not use it. You’re right that we need more awareness for this and those with lung conditions need to be aware of how it can effect sleep and the much needed break that these muscles need.

    • #18164

      I am on a BiPAP and am growing tired of it because I have both apneas central and obstructive and the machine corrects the obstructive apneas but while doing this it makes me have more central apneas. So it appears that I am ready for the ASV machine. I had great help from my Auto BiPAP for about half a year then as I lost weight my needs changed. Even though I lost nearly 100lbs my numbers went up. I needed more pressure in my lungs. Now I use literally the highest setting on the machine and it wakes me up. I am not even getting one hour of straight sleep with it on. This drives me nuts. Now I am kinda fatigued of the machine. I really don’t use it, and I know I need to. I guess it’s just one more thing I have to get over again and just deal with. I am so tired of sleep studies, they make me just want to say “keep all this crap, I’ll just go without it.” Yet I know I need it and that my apnea is a large cause of my issues. I tried to have my family wear my mask so they could see what I have to deal with. They all laugh and kinda say “well this is your bag not mine” deal with it. I am going to get tested for the ASV machine. But then I worry what is the deal after this? My Dr. said surgery? I know the eventual thing is a tracheotomy. That is a no go with me… frustrated…

      • #18179
         Colleen Steele 
        Keymaster

        Christopher, I can understand your frustration! What you have to go through and put up with in order to stay well is a challenge that hard to explain to someone not going through it. I don’t have experience with the ASV but I think @brittany-foster has and when she is able I’m sure she will jump in and give you some advice on how to deal with it, physically and emotionally. This is a good place to vent and we welcome you to express your feelings here anytime! Sometimes just having a listening ear can make a difference in a day.

      • #18188
         Brittany Foster 
        Keymaster

        I’m sorry to hear of all your frustration on the BIPAP. I wish there was a machine that made things easier. I had an NIV machine (non invasive ventilator) that looked like a BIPAP but it had better settings and “smarter” settings similar to an ASV machine. The mask that I had was really comfortable for it and was made out of memory foam so it was like a pillow for my face. Way better than some of the other masks that I tried. What do you think is the hardest part about sleeping with it that is disrupting your sleep cycle? My biggest advice would be to be honest with your sleep doctor or PH doctor and let them know specifically what is bothering you about using the machine. They have worked with me a ton, especially in the beginning when wearing it reminded me too much of the hospitals and I started getting panic attacks while wearing it. After getting used to it during the day and getting advice from the doctors about how to manage my anxiety around it, I started seeing more benefits from it.

  • #12032
     Jolaine Cowherd 
    Participant

    Hi, I’m sorry to hear you have central sleep apnea, but it’s on the agenda as part of PH. I have it too. Last year I got a Respironics AVAPS BiPAP and love it! Mine has a backup rate, which won’t trigger a breath, but will provide a hint we should breathe when we stop. It’s a must for us. I would like two BiPAPs in my ideal world: an AVAPS for night and another with lower pressures I could adjust for a break during the day. It’s difficult to go back and forth during the day on the higher pressures I use at night. I know exactly what you’re feeling.

    We should share tips. My big one is do not get my breathing muscles overtired, because then the BiPAP is playing catch-up. This one might not apply to you. Potassium naturally drops at night, especially during REM sleep which is when I have central sleep apnea. My doctors suggested I take a potassium supplement when I go to bed to encourage my potassium to stay up. So, I have a prescription for potassium and also for spironolactone to help hold potassium in my body. I found it interesting that they are doing clinical trials with spironolactone for people with PH. I didn’t qualify because I’ve been taking the drug for years for this reason.

    Also, my internist said I must keep my magnesium up at the highest level, so for a long time I had standing orders for magnesium blood tests. Potassium and magnesium are partners. If one is short, the other will be. A person needs both at the normal level to keep both at the normal level. So, we keep my potassium at 4.4 (mid range), 4 or below is too low and my magnesium right at the top of norm. While we’re at this, I take sildenafil which interferes with B12 absorption, so I take B12 shots. That also keeps my red blood cells very happy. Warm baths also help my respiratory muscles. They can get so tight when they get over tired. By the end of the day they’re in rebellion. Nice chatting with you.

  • #12251
     Jimi Mcintosh 
    Participant

    The 6 minute walk test is the standard, for me, I suffer shortness of breath, climbing steps, walking a moderate incline. I look good on the walk test on a level surface.

    • #12280
       Brittany Foster 
      Keymaster

      Hi Jimi,
      like you, I also have trouble with walking on an incline. I have more fatigue in my legs and more dizziness when I try to do an incline or steps. At my office they do something called the “step test” which monitors your levels the same way they do a 6 minute walk test. Do they offer this at your PH office? May be useful to ask about this because it is testing you when you would be walking up steps and can better evaluate you if you become more symptomatic !

  • #13408
     Maureen 
    Participant

    I do well on a level surface, it’s the stairs or inclines that become challenging. The 6MWT on the flat doesn’t give an accurate picture.

    • #13411
       Brittany Foster 
      Keymaster

      Maureen,
      at my doctors office they do the 6MWT but they also have a test where you walk up a set of stairs (not a full staircase) more like a mock staircase they would use for PT and they monitor the oxygen levels and breathing during this test. Does your office offer something like this? I find that this gives better info for dealing with inclines and every day life. Something like a stress test where they adjust the incline on the treadmill might be worth asking about too.

    • #13414
       Kathleen Sheffer 
      Participant

      Good point, Maureen! It’s true there are other stress tests they can use, but unfortunately the 6MWT is the standard used across centers and used for transplant evaluation. Tests like the ones Brittany described can give you and your doctors a better picture.

  • #16449
     Robin Webster 
    Participant

    As a light-hearted side note to this topic, I keep telling my heart doc to develop the six-minute DANCE test, because everybody likes to dance and nobody likes to walk. I’m only half joking, because the truth is, it seems like I can do so much more when I’m enjoying myself and I’m not “in my head” about being measured for progression. If they didn’t have to constantly ask me to assign a number and quantify how I was doing (and if there was a little upbeat music playing in that hallway! wink, wink) I think it would more accurately represent how I do in my normal daily life. Sometimes I get as worked up emotionally before a walk test as I would for an invasive test, just because I feel like it’s going to reveal something bad that I hadn’t previously been aware of. Silly, I know.

  • #18167
     Charles Nester 
    Participant

    Great to know about the 6MWT. I don’t do it but have an experience of about it. My Dad was a heart disease patient, and when I take him to the doctor advised him to do so. After every procedure, he feels comfortable just for some days but doesn’t correctly get well forever. The doctor also encourages him to continue it in at home.

    • #18176
       Colleen Steele 
      Keymaster

      Charles, especially for those who see a PH specialist, the 6 minute walk is often done several times a year. It helps the doctors monitor how your PH is handling activity and I know for my son, a way to address the need for supplemental oxygen.

    • #18186
       Brittany Foster 
      Keymaster

      Hi Charles,
      is the walk test something that your doctors have discussed wanting to do for you? Like Colleen said too, this is how my doctors discovered that with activity my oxygen levels were dropping. The first time I had this test done, I was in the hospital being worked up for why I was experiencing syncope and passing out episodes. Sure enough, my oxygen was really dropping a lot ! It was a good start to getting some answers for me.

  • #18168
     Carol alexander 
    Participant

    I cam do only 3 minute walk after that my oxygen drops and I start to cough and cough and can’t breath.

    • #18175
       Colleen Steele 
      Keymaster

      Carol, do they let you use supplemental oxygen when you do the walk or do it without? I know the 6 minute walks are difficult and a bit confusing as to what information the doctors are trying to gain from them. If anything, I think one way to look at the 6 minute walk is that it is a great example to use when educating others about PH. How hard can a 6 minute walk be? Just ask someone with PH. Carol, what kind of feedback do you get from your doctor after a walk, especially since it is so difficult for you?

    • #18187
       Brittany Foster 
      Keymaster

      Carol,
      That sounds awful! Are you using your oxygen when you are doing this walk test? What are the doctors saying about the cough? I can imagine that all that coughing must hurt your chest too! I experience chest pains a lot when I cough and it almost feels like I am pulling tons of muscles when this happens. Are you discussing ways to improve your exercise tolerance? How has the medication been for you?

  • #18169
     DAVID PETERSON 
    Participant

    Hi! My Doctor could not find anything wrong with my lungs but definitely have pulmonary hypertension. He was thinking there was damage that caused my oxygen problems. I gradually went from nighttime oxygen to 24/7 oxygen. Then I went from 2 to 3 liters to keep my oxygen above 90 after I had pneumonia. I have systemic Lupus but I am thinking that I might have central hypoxia. That would explain why they can see no damage. Am I crazy?

    • #18177
       Colleen Steele 
      Keymaster

      Hi David, how is your doctor determining that your lungs aren’t damaged? If you are on oxygen 24/7 there are certain tests that should be done to look closer at the lungs as well as the heart. Have you had a right heart catheterization? That is the best way not only to diagnose PH but to evaluate the progression and determine treatment.

      I’m sorry that you are also living with Lupus. I can imagine how sick the two diseases can make you feel. Are you seeing a different specialist for each? Have you discussed your hypoxia concern with your doctor? I hope you get answers soon!

    • #18185
       Brittany Foster 
      Keymaster

      Hi David,
      I have something similar to what you are talking about actually. My PH pressures are higher because I am not getting enough oxygen on exertion. I have exertional hypoxia meaning that my oxygen levels drop with movement and when I am exerting myself. This is caused by a nervous system disorder that runs in my family that impacts the central nervous system. They found that my breathing conditons was central nervous system related when they did a sleep study that showed central apnea (which is also what happens when I breathe during the day) It happens without me thinking about it and sometimes I have to make a conscious effort to breathe. I would inquire about a sleep study or a way for them to monitor your breathing patterns more closely to look for things like pauses in your breathing.

  • #18196
     Jimi Mcintosh 
    Participant

    Six minute walk test, medical standard for PH. I have had numerous 6 min walk test and have scored well. Give me some steps a steep or gradual incline and the numbers plummet. I have been told that asthma, COPD and excessive weight is the primary cause of my oxygen decline. Enlargement of right ventricle and CHF also contribute. It seems that each person’s case is unique, there is a lack of hard facts and test to cover
    most PH cases.

    Stay positive and be willing to try multiple things. Science is baffled by this disease.

    • #18201
       Colleen Steele 
      Keymaster

      Good point, Jimi, about each case being unique. I think that contributes to the complexity of PH, the fact that people are often battling co-existing conditions and present a wide range of symptoms. Like it or not we are all part of an experiment of sorts. Doctors and medical scientists are learning from us and personally, I’m ok with that. If my son’s medical history can help the future of PH, then at least something positive has come from the experience.

    • #18205
       Brittany Foster 
      Keymaster

      Jimi,
      You give myself and a lot of people encouragement with your desire to try new things and in the process help others too! It is really hard when a lot of data still needs to be collected and research still has a long way to go but there has been such improvements that make me more hopeful for the future with all of this. Everyone is certainly unique and I really enjoy coming on here and hearing what everyone has to say especially because we all have different reasons and causes of our PH yet many of our symptoms and our outlook on this seems to be similar. So great to be able to share this space with others who know what its like.

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