Exercise/weight loss with lung/heart disease

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Marguarretthe
Marguarretthe Posts: 14 Member
in Fitness and Exercise
First, I am not looking for sympathy... just some suggestions.

A bit of background first... I was a Zumba instructor, have a blackbelt in taekwon do and have done several triathlons, including a half-Ironman. The only reason I mention this is that I have had several people tell me that I just need to try harder, which I guarantee is not the problem. About a 18 months ago, I was diagnosed with primary Amyloidosis AL in my larynx, trachea and bronchi (don't worry, even my GP had to look it up before telling me what I had).

Now, my absolute top speed is 4km/hr, there is NO running, I get short of breath getting dressed in the morning, doing laundry and all of those other fun activities of daily living. I can no longer work, and oddly enough, I put on about 50 lbs since being diagnosed (I know, shocking!) which I am now working on getting rid of.

I have a personal trainer, with whom I do a lot of strength training, which also wipes me out. I try to walk around 4km a few times per week. I can swim about half the speed I could before, but only for about 20 mins. I can do Hatha, yin and restorative yoga, but not flow or any other ambitious form. I'll be honest.... I'm getting bored.

I am looking for some more workout suggestions.

My shortness of breath shows up like heart disease, with chest pain and all... I have had a CT scan, MRI, MIBI and a couple stress tests which all show that my heart is in good shape (mostly because I worked out so much before)... it is just my small airways that aren't allowing air to flow through. My SpO2 is stable throughout as well. My doctors have given me the OK for exercise as tolerated, and I do realize that losing weight will have to be primarily diet related, with little wriggle room.

Thanks
Margaret

Replies

  • wheezeybouncer
    wheezeybouncer Posts: 122 Member
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    mmm trying to think as I type and it doesn't always work. Do you take a releiver before exercise?

    walking isn't a bad thing. it's a good place to start and regain the fitness you once had. As is the swimming, even if it is slower than before.

    Last January I could only walk. Now I do other stuff but it took a while to get there. I still say I'm fit to drop most days! In my youth I used to trampoline several times a week and participate in karate (nowhere near as high a grade as you got to!) as well as teaching trampolining.

    I'm still trying to think.... I rather think that it's just listen to your body and give it time.

    Feel free to shoot me a FR

    Geina x
  • Marguarretthe
    Marguarretthe Posts: 14 Member
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    No, I don't take a reliever, as I don't have any bronchospasm (like asthma), so bronchodilators like salbutamol/Ventolin or Salmeterol won't do anything for me but give me a high heart rate.

    (The painful irony to all of this is that I was a Respiratory Therapist!! )

    I don't think that the walking or slow swimming is a 'starting point'... within 4 months of doing the half-Ironman my exercise tolerance dropped to nothing and I went off work... I think that this is just where I am with a slow decline and occasional improvement with surgery followed by another slow decline.
  • Marguarretthe
    Marguarretthe Posts: 14 Member
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    bump (sorry, I still need advice!)

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