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    • #18576
      Mark Koziol
      Keymaster

      About two months ago our own Charlene Marshall wrote a forum topic on the 6 minute walk test. I am piggybacking off of her topic for this forum post. In reading forum replies, I felt there were some who had different experiences with their walk test and needed answers. Yesterday while reading a Facebook post from a pulmonary fibrosis group, a post came up about the 6 minute walk test. The post included The American Thoracic Society’s (ATS) guidelines for administering the 6 minute walk test. I feel this document can explain some of the inconsistencies in forum member’s experiences. Although centers administer the test differently the expected outcome shall remain valid if they use the protocol instituted by the ATS.

      From my own experience I hated it, but it was necessary for me to receive a transplant. I had to walk 575 ft. using as much supplemental oxygen as I needed. No matter what I knew I was going to walk the required distance. For my last walk I required 25 liters of o2 but I walked over 1300 ft. Shortly after my last walk I received my transplant. Even though I had trouble walking, I participated in phase 3 pulmonary rehab; this was rehab on my own. All of my exercises were completed while sitting down. I focused on my legs, riding the bike and using the weight machines to strengthen my legs. I also used the weight machines to build up my strength in my upper body.

      The staff at the gym I went to were very accommodating and would bring my tanks in when needed. I feel the work I did in the gym spoke to my desire to receive a transplant. I looked at the walk test as a hurdle I must overcome. Thankfully I was able to perform well on the test and meet requirements. I have attached the article below. Please read and comment if you desire. Thank you.

      ATS Statement: Guidelines for the Six-Minute Walk Test.

      For our forum members who have experienced the 6 minute walk test, can you identify with the protocols set for the by the ATS?

      How did you prepare for the test?

      Did your supplemental oxygen needs rise as you exerted yourself?

      If you tested at more than one facility, how did they differ?

    • #18597
      John Marshall
      Participant

      Most important in my mind is what I read by Dr Noah Greenspan about not letting your SpO2 fall below 85 and ideally not below 90.

      From time to time I conduct my own on a flat promenade on Bondi. I use GPS in my phone to get the distance and also the app for SpO2 which uses the same tech as oximeter; it also measures bpm.  If I feel bad I slow and check SpO2 and if below 90 I slow more or stop. The results vary, but are within a range close but not as good as my hospital test last December. I do better on warmer days when there is sun and no wind. If its windy I tend to get a runny nose and that is bad for my breathing.

      Because I always start at the same spot I know as I am going where my best finish is and best midpoint. I know if I really push and get SpO2 below 80 I could beat my previous best but I don’t. My goal is to get as close as I can without dropping below 90. I am finding I can control my breathing a little better by this discipline and I now have a good feel for my limits, which is a good thing.

    • #18599
      Mark Koziol
      Keymaster

      Hello John, I still use my oximeter even after my transplant, at phase 3 pulm rehab I use the walking track. It is 160 feet and I try to complete each lap under 48 seconds. I use my phones timer clock. I feel the track gives me a better estimate of my walking abilities. I think you are doing a tremendous job monitoring your exertion and oxygen use. I agree totally with everything you are saying because you are basically completing a valid and reliable research every time you monitor you walking times. Thank you for valued input. Mark

    • #18605

      Hello Mark

      As I mentioned in a previous topic, 6-minute walk test was part of the full battery of tests undergone at the end of 2016 for the diagnosis of my IPF. I get follow-up visits every 3 months with pulmonologist and 6-minute walk test twice a year.

      I am quite comfortable with it … probably because I’m at early stage of the disease, I’m definitely considering it as a good indicator of IPF progression, probably the one which will tell me, one coming day : guy you need supplemental O². I’m mentally prepared to that, I know the day will come and I must admit that I consider this test rather like a good caregiver who will prevent me in time …

      I started daily physical training 2years ago and with the 6MWT I can visualize progress done with the increase of distance covered. A bit confused to say that but I’m always waiting the next one with great expectation to “beat my last record” 😉

      As I’m living in Paris (France), I looked closely to the ATS guidelines and can say that my french pneumologists are following it rigorously.

    • #18607
      Mark Koziol
      Keymaster

      Hello Jean-Michael, nice to hear from you. I glad your pulmonary center is following the protocols set forth by the ATS. To be honest every time I walk at pulm rehab I do a 6 min walk test even though I do not have to do them anymore. I feel comfortable knowing what I am doing. It’s good you are physically active, keep it up and if you are able to do weight training I would do that as well. Thank you for reading and commenting. I know the forum truly appreciates all of your comments and knowledge. Mark

    • #18614

      I’m doing daily weight training combined with elliptical trainer or outdoor cycling or golf depending on the days.
      In addition always walking instead of driving for short trips. I’m convinced that, combined with treatment, it is the best way to live with this disease as long as possible.
      For weight training i’m following Christina Hunt’s program you can find here :
      Arm Strengthening

    • #18639

      Hi @jeanmichelf,

      So nice to hear from you, thank you for sharing the physical exercise/activities you do on a daily basis. Amazes me, kudos to you! I hope this means the weather there is warming up nicely for you to play your beloved golf game regularly now. Enjoy!

      Thanks for sharing the link, I’ll have to check it out 🙂
      Charlene.

    • #19802
      Marianne
      Participant

      Hi all –

      I went today for evaluation for pulmonary rehabilitation.  I did a 6 minute walk test.  One time I dropped my oxygen levels to 85 but with pulse breathing was able to bring the up again quickly.  My prior 6 minute walk test in December 2018 I dropped my oxygen levels to 89.  I begin pulmonary rehab classes 3 times a week for the next 8 weeks.  They will watch my oxygen levels when exercising.  If they drop significantly  they will touch base with my pulmonary doctor.  I am post surgery 4 weeks and 5 days now and I am still having a bit of pain where my chest tube was inserted.  I believe it is healing well.  I have a call into my surgeon to check with her.  The nurse at evaluation today discuss lung transplant.  She stated we would be discussing this further during rehab.  She likes to get patients evaluated early for transplants.  Ohio State University has a cut off of age 70 in doing lung transplants.  I know some other centers have a higher age limit.  That’s all I know right now.

      Marianne

      • #19803
        Cynthia
        Participant

        I’m going to start the pre-evaluation process at Mass General in Boston soon. I’m pretty sure the Cleveland Clinic does transplants on patients in their 70s. That’s not too far from you, is it?

      • #19808
        Mark Koziol
        Keymaster

        Hello Marianne, that is great you will be starting pulmonary rehab. You will start to feel better after a couple weeks of the rehab. At rehab they will supply you with oxygen so don’t worry about your saturation levels dropping. Mark

    • #19806
      Marianne
      Participant

      Cynthia –

      Yes Cleveland Clinic is a couple hours drive from Columbus.  Good luck at Mass General in pre-evaluation process.

      Marianne

    • #19821
      Malcolm Mann
      Participant

      Hi all

      Thanks Jean-Michel for the link to Christina Hunts site, the breathing exercises there are also instructive.

      The pulmonary people here in NSW Australia  (in my experience) don’t rely on the 6 minute walk test to evaluate patients commonly, I’ve only done one in 4 years. Our dog & I do my own walk test weekly over a beautiful hilly fire trail through bush and farm land. It’s about 3km (<2 miles) and I time it on “map my walk”, a phone program, and record the times in my Ofev diary, so far no deterioration.

      Jan & I are away for a couple on months, house sitting four weeks in Brisbane and four in New Zealand, near Auckland.

       

    • #19826

      The destinations where you’re house sitting Mal sound amazing – do they need an international house sitter sometime? 😉 I’d gladly come down from Canada! So glad to hear you’re continuing to walk your dog without issue and not noticing any signs of deterioration, that is great news. I’ll keep my fingers crossed it remains this way for you for a long time. Thanks for checking in – it’s nice to hear from you!

      Charlene.

    • #19845
      Karen
      Participant

      Marianne, I have been listed at OSU for transplant since Feb 12, 2019.  Any questions you may have (and anyone else, too) I will be more than happy to try and answer for you.

      I do go to rehab twice a week and at my last appointment it was suggested to climb the 14 steps in my house 6 times a day! I am having a difficult time getting that accomplished. I must be stronger than my excuses shouldn’t I?

      Karen

       

    • #19851
      Marianne
      Participant

      Karen  ( @lks8081 )

      Do you take your rehab in the OSU network?  I will be taking my rehab at the Outpatient East location on Mon, Tues and Thurs.  I assume they want you to climb the stairs to get stronger.  I am not a fan of climbing stairs as it is harder for me to breathe.  I have only noticed the stairs affecting me in the past couple of months.  I did my own 6 minute walk test at home yesterday and dropped by oxygen levels to 90 so that wasn’t too bad.

      Congrats on getting listed at OSU for a transplant.  I hope you have a short time on the transplant list.  Are you listed on other transplant lists?  I have heard that some of the hospitals have a shorter time on the transplant list than others.

      How long have you been on supplemental oxygen?  So far I have do not require supplemental oxygen.  I feel it is not long before I will be needing extra oxygen.  Did you have a hard time accepting needing supplemental oxygen?  So far no medicine and no oxygen.  My pulmonary doctor wants me to go on either OFEV or Esbreit.   Right now under my insurance plan (SS, Supplemental and Prescription Drug coverage) the cost is very expensive.  I am planning to change my Prescription Drug coverage for 2020 to bring the cost down.  Since I am still working full time I do not qualify for any of the plans out there to help with the cost.  I am seriously questioning whether it is time to retire or go to part-time work.  Currently my energy level is way down.  I am hoping this is just from the surgery.  I have been able to work from home but get tired very quickly.  I am holding off making any decisions at the present time.

      Are you still working?  Full time or Part time ?

      Marianne

       

    • #19863
      Karen
      Participant

      @marianne

      Hope you are doing well.

      I go to rehab at an outpatient facility associated with Mount Carmel. I had contemplated switching to a regular gym but realized that it would be best to remain with this rehab facility as they are trained in case anything were to happen and they do have supplemental oxygen.

      I am having a difficult time accomplishing the stair exercise. I keep telling myself it will help in the long run but it definitely wears me out. But I will succeed.

      I began using oxygen only as needed 2015. I have recently had to increase my need for supplemental oxygen to 24/7 within the last 3 months. It really has been an adjustment to say the least, especially going out in public. I find talking to others that have to use supplemental oxygen helps tremendously.

      I had to stop working 2 years ago on the advice of my former pulmonologist. I moved in with my son and his family a little over a year ago after living in Kentucky for over 25 years. My condition was worsening and unfortunately I did not have family close by that could help me.

      I am only listed at OSU at the present time. Hopefully it will be a short wait. They have a great team. If you have any questions I  will be more than happy to answer them.

      Karen

       

      • This reply was modified 9 months, 3 weeks ago by Charlene Marshall. Reason: tagging
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