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Oxygen
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Hi @reglois and @charlene
Thank you both so much for showing support and care ?
Regarding daily exercise and walks, my mom barely can walk inside the apartment but we make her at least walk from one room to another. It’s very hard for her to climb stairs so we had stopped making her do that. So my concern here is if we should make her walk or climb the stairs even if it’s hard for her? The question always is how much should we push her to walk or exercise?
About the Bootcamp that you suggested Charlene, it looks very productive. I’ll definitely check into it. Thanks a lot ?
Warm regards
Reshma
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Hi Reshma
If your mother hasn’t been exercising of course she is going to find it difficult, baby steps a couple of minutes at a time several times a day to start.
I can’t do stairs or slopes and I am used to exercise. Walking yes, little bit further each day, an oximeter, used at intervals, will help give her the confidence that her oxygen is not too low or that she needs to take a short break to get it back up and/or turn the O2 up a bit while exercising. You soon learn what real O2 shortage feels like. I sometimes feel very short of breath but when I check it is not true, I think it is when I have too much carbon dioxide in my system, I then practise pursed lip breathing, should do it more often really. Has she a garden she can walk in, looking at the flowers, checking on weed growth, look at the birds etc, anything to make the walking more interesting rather than a chore. She will find it hard, very hard at first. Even weight lifting a can of beans in each hand is good lung exercise, out to the side, the front and up. Supermarkets used to be a good form of exercise as they are very level but with Covid about that is out for most people, I am lucky in the fact that I live out in the sticks and around 1pm on a Monday or Tuesday I am often the only one in there, can walk a good km and a half or more round there just doing the shopping. I truly do believe that keeping moving has kept me going, but fighting the utter fatigue is hard, that is why I say try and make it as interesting as possible
I know I probably have different problems to your mother but mine does include fairly advanced pulmonary fibrosis
Wishing you all the very best
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Hi Susan
You’ve been so inspiring for us. We’re very grateful to you. I have read your suggestions very carefully and have forwarded to my sister also. We’ll be doing everything for our mother. We’ll track her exercise and walks everyday from today.
Will keep posting about her. Thank you for all the help ?
With love,
Reshma
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Hi Reshma
Only too happy if I can be of help
Have you got or can you get a finger oximeter, they are not very expensive and for me indispensable, if you do buy one make sure it is not coming from China, eg a company like Wish, very cheap + or – €10 and usually free delivery (will take a couple of months to arrive, if at all) prices vary for a goodish one between €20 to €30 UK and Europe.
Your mother is lucky to have such caring children.
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Hi Susan,
Yes, we have oximeter and we use it many times a day. Thank you for your concern again.
Susan one thing I wanted your advice on is we’re planning to buy a treadmill for my mom. In Nepal it’s not a wise decision to go out for a walk since it’s very polluted and we’re scared if it will harm her more. Also there’s a risk of corona these days. So is buying a treadmill a good idea?
With Love
Reshma
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@reshma,
Thank you for all your correspondence and wonderful conversation. I’m really hoping you find the forums helpful! 🙂
I do have to advise though: specific questions on your Mom’s care need to be directed from a physician. While many of us are patients and have a lot of advice to offer, no one on this site is qualified to answer questions on exercise, oxygen, titrating medications, etc. May I have your email and I can possibly connect you directly with Noah Greenspan (with his permission) to obtain professional advice on the question of exercise? We have grown to care about your Mom through the stories you’ve shared, and I would feel terrible if I (or someone else) provided information that was risky for your Mom’s condition.
Please let me know your thoughts.
Sincerely,
Charlene. -
Hi Reshma
A treadmill really is not something I can give you any advice on at all, only a physician that knows your mother and has access to all her notes can do that.
There are lots of exercises she can do that do not require machines, just music to make them more interesting.
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Dear @charlene!
I’ve done the best thing in my life by joining this forum. I’ll be eternally grateful to all of you ??
My email address is [email protected]
Thank you for being so kind. I’m very overwhelmed from all you guy’s support ???
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Stay tuned @reshma – I will facilitate that introduction to Noah Greenspan this afternoon. He gave me permission to connect the two of you! 🙂
I’m so happy to hear the forums have been helpful to you. We’re here for you, your sister and your Mom!
Hugs,
Charlene. -
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Hi everyone!
One quick question.. Can a patient with IPF have a coffee??
Regards,
Reshma
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Sorry can’t answer that.
Personally I can’t, seem to be allergic, but then I haven’t got IPF but CPFE
Sue
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@reshma
Hello Reshma, coffee is not forbidden but like with anything too much of a good thing is not a good thing. For persons who have acid reflux coffee is not the best drink for an ipf patient. Coffee is also a diareutic so you need to compensate by drinking more water to stay properly hydrated. I would still talk to your moms physician for further info. Even after transplant coffee still gives me a little heartburn. Take care, Mark.
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Hi @reglois @mark-koziol
Thank you for your reply. I’ll check into with her physician as well.
Best regards,
Reshma
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Grr Do wish security guards knew the new rules, I was stopped today entering a supermarket because I wasn’t wearing an actual face mask but a medical face shield, was told I had to wear a regulation mask, told him to go and read the exemptions. I wear a portable oxygen back pack and very obvious nasal prongs !! He came back and apologized but his supervisor grumpily said that it wouldn’t hurt me to wear a mask for 30 minutes. !!! she ought to try having severely compromised breathing, a mask actually will not fit properly because of the nasal prongs so not good protection anyway.
There is a debate as to whether masks or face shields are the best.
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Hi Susan,
I am so sorry to hear that this was your experience at the supermarket! You are correct, there seems to be a lack of understanding as to whether masks or face shields are best but here in Canada, either one will work. Glad the security guard apologized, but disappointed to hear the comment from the supervisor. You’re right – they have no idea how hard it is to deal with this while having compromised lungs. Such a tough thing to go through!
Take care,
Char. -
Hi Charlene,
Face masks became obligatory here in all shops and closed spaces as from the week end and recommended in all open spaces away from home. Did the guard stop the gentleman with his mask under his nose, no. Seems here it is the regulation mask or I have to educate, both should be allowed. I have, from day one of the pandemic worn a medical visor with the closed in top, I agree open topped ones are no protection, personally I think good visors are best as they protect the wearer and others whereas the mask, only if treated properly, protects the public. Love living out in the sticks but they are stuck in the dark ages here and act like sheep, order to wear a mask means a tissue MASK and nothing else.
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Hi Susan,
Thanks so much for writing and providing this update. How frustrating that despite the bylaw of masking, and the guard addressing your shield, he wasn’t even wearing it correctly! Sorry this was a tough experience for you, and hope you don’t endure this kind of treatment in future.
Sincerely,
Char. -
Hello everyone!
Hope everyone is doing well.
My mom got hospitalized yesterday. She was having problem with her breathing and her heart rate was very fast. We switched to oxygen cylinder with maximum level that is 11 but still her o2 was hardly 90. Then we decided to take her to the hospital. They put her in ICU for a whole night and shifted her to general ward today morning.
Her doctor said she has around 50-60% lung damage and gave us the same timeline as before. Can anyone please explain about this percentage of lung damage? Also I have read that a man can live to certain amount of years by having just one lung. How much is it true?
Any information can be very valuable to us ?
Warm regards,
Reshma
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Hi Reshma
Sorry to hear your mum has been hospitalized, hope they can stabilize her and that she come home soon
I also have 60% lung damage. What ever version of lung fibrosis one has, it is invariably progressive, with some people faster or slower than others and each form (mine is CPFE) different than another
Cordialement Sue
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Hello Reshma, sorry for the late response. When I had my lung transplant I was at 45% of lung function and was on 4-5 liters of oxygen at rest and 6-8 liters at exertion. I wasn’t doing to well. When doctors are making their treatment plans they will also use your 6 minute walk test and X-ray. It seems where the scarring is situated has a determining effect on lung function as well and the need for supplemental oxygen. As for living with one lung, most people can live a full life with one lung. They have to make modifications as their conditioning will not be as strong as someone with two working lungs. Best wishes for you and your mom, Mark.
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My dr wants me to keep my o above 90 as well Charlene. When I am exerting myself it drops to the low 80’s so she has me bump it up another number. I am having as issue with a runny nose since I am on o pretty much 24/7. Anyone else having this issue.
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