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Weather-Related PF Symptoms
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Thanks Susan. I am not a hypochondriac so I ordered an oximeter from Amazon. Will be here Thursday. I have a had a tough couple of days, curious to see what my saturations are doing.
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Hope you find it helpful, I do, as I have learned to recognise before my sats get too low, stop, breathe (I am on 5ltspm O2) and within a few minutes I can continue with my exercise. With this device I have so far upped my walking capacity by a kilometre, not a lot I know but I hope to be able to do more. Good luck
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HI Susan and Charlene,
I got my sat monitor yesterday. i have been testing it since, a bit obsessively. It was not an expensive unit and it is really picky about movement so hard to get accurate readings with activity which is what i really want to know so i have played around. Results are at rest 94-95% occasionally higher. It actually goes up when i cough which is weird. With normal activity it is 90-94, light activity it is good like 95-97. With strenuous activity it drops to 88%, walking fast(er) low 80s on a slight grade it went to 79 twice. I seem to recover fast. I guess i compensate good. I can usually tell if it is low, occasionally I am surprised. Any suggestions?
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With most non medical oximeters you need to stand still for the few seconds it takes to read. My resting sats are 97% just like a *normal* person !!! I recover pretty fast too, i.e less than 30 seconds usually, but I have to wait until the dizziness stops, even from a real low, once 46, fell over with that one, tried to get the shopping in without oxygen. On a walk with my dogs, I do 3 kms and now know when to stop and check (now down to three times) and rarely go down below 84 now, I cannot do any gradient even on O2. I never wear the oximeter continuously as you get a false reading that way I have found. Take note of what you feel, stop test, get sats back up, continue and check before you start to feel too bad, the idea is to take a breather before you go too low, I am trying to get my lungs fitter, walking on the flat, at a medium pace, used to be a fast walker, and I seem to be able to go longer before dropping to low 80s on 5ltrspm oxygen. Got myself a pedimeter too, I am amazed at how much I do actually walk, only have it on my coat so take outdoor readings and most days I register about 5kms. chuffed thought I did much less. Might take inside movement before next pulmonary visit, professor said I didn’t do enough !!!
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I am still not great at these forums lol i answered you Susan under the feather pillows and duvets thread. I got mixed up haha.
Charlene you talk about fog brain, i have been getting that sometimes lately too, not to fun.
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Hi Nan
Levels below 88% are not normal, so do a chart for your pulmonologist. I also headed the chart with what the weather was like of that particular day, ie, hot, raining so damp and humid, cool and dry etc. did the same sort of chart for each weather type. I did, showering and dressing, going up stairs, walking up an incline, walking dogs, picking up after dogs, ( I struggle to bend) funnily enough the very worst was getting into bed, I would drop to as low as 74 some times, no idea why that should be for such a simple task, sitting and digesting food was a surprise too.
Brain fogs, you would be surprised at where I find I have put things on occasions. Hope your cold stays at just tickly throat stage.
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Hi Nan,
Glad you received it – sounds like you’re doing all the right things in terms of tracking. I agree, it can feel a bit obsessive but testing your sats at different activity levels and noting the environmental aspects of those drops/increases (as Susan said) gives you a good baseline. It will be helpful to bring to Toronto in your January appointment if you track them, and have the “data” to show trends, or what bothers you most. This might help your physician determine your oxygen needs, and what types of things to avoid and/or will help reduce your SOB.
It should always be above 88 (ideally 90) so those low 80s numbers and 79 are really concerning. Make sure those are noted, because those numbers means your other organs are being deprived of oxygen. Recovering fast is usually a good sign, so note that as well when you can. I know this is asking alot, but the more information you can bring your January appointment, the better – in my experience anyways.
Have a great Christmas. We still need to go for coffee! Maybe in the new year?
Charlene.
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Hi Nan,
Sorry – I am a bit behind on replying, and see you did purchase an oximeter on Amazon which is great. Definitely start charting activity, as mentioned below by Susan and I. This will be very helpful for the ILD clinic in Toronto. I would imagine they will do the 6 MWT for you, though the first visit may be more of a consult to see if you “qualify” (not the right word, but the only one coming to me at the moment) for following there by physicians. It may not include a number of tests, though I don’t know. My experience has differed from others’ when it comes to the first time transplant centre meeting.
Hang in there this week – Christmas can be so chaotic! Don’t forget to voice what you need, and stand up for how you’re feeling. Others often don’t understand and that is difficult to navigate but ultimately, we’re the ones who pay the price physically if we overdo it. It’s important to find some balance 🙂
Take care,
Char. -
Thank you for the great advice. I have been monitoring my sats for 5 days now, I was thinking for doing it for a week. I am surprised by some of the low lows however I now know it is not all “in my head” :).
Merry Christmas, happy holidays to everyone!
P.S. Charlene, yes lets have coffee in the new year!
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Hi Nan
Hope the docs take notice of your charts, mine did and wanted me hospitalised that day !!
Left hospital a week late on O2, must say I was very very disappointed to find that even on 5ltspm I still couldn’t go up an incline and still felt breathless all the time, is it me, or is this normal, don’t know. Took reading on my daily dog walk today, within a minute I was down to 88% and after 1/4 of an hour 74%, stopped got back up to 94% started to walk again and back down to 75% after 10 minutes. Thought I was getting fitter as I feel able to easily do the 3 to 4 kms, 4 on a nice rain free sunny day like today. Resigned myself that I will have to stop before I feel so breathless and giddy and just wait, ignoring the looks from the dogs lol, until my sats get right back up, shall inquire at my next pulmonologists meeting as to why this happens, and if he says I don’t exercise enough again I think I might sock him.
Merry Christmas every one and a Happy New Year
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Sounds great Nan, we can connect in the new year! Maybe after your appointment at TGH? Tis an awful season for germs/viruses going around, I can’t believe so many people around me are so sick. Stay healthy and look forward to meeting up with you for coffee soon.
Char. -
Yes Charlene I look forward to it too. I may plague you with questions ;). My appointment is Jan 29 so just 4 more weeks.
Seems like I am like you Susan in that my sats go up and down and all over. Today I was eating and it went to 80% (good wave good reading on HR so accurate) I stopped and it went to 94. Most of my at rests are 93-95 but sometimes more. Today, other than when eating it has been quite good. I went for a short walk in the hallway of my building and it only dropped to 92% and I was not as SOB as normal for me. It was a flat easy surface I guess. I have not been as SOB today but I am coughing more and very very tired. IS this normal? I can tell when my O2 is down because I mouth breath, huff and puff and feel “off”. I am learning to take it a good pace and conserve energy (yet I am so tired). Is there such a thing as oxygen when needed? So now I am worried that when I go to the doc I will be having a “good day” and be sent on my way. This has happened to me before. I am having PFTs at my appointment but that is all I know at this time. Sorry for rambling I hope everyone can understand my questions lol.
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Hi Nan,
That is no problem – I’m happy to answer questions as best I can! I’ve been plagued pretty bad with serious illnesses since early November and now have a bit of a cold and am congested/coughing. Having a weak immune system sucks. Hope you had a nice new years?
Yes, it is possible to use oxygen only “as needed/PRN”. When I was first prescribed it – I didn’t have to fight for it, so I hope you don’t either – my script was to use as needed and on exertion. Of course they still give you the different litre flows to use for both scenarios. I’m glad you’re tracking your activity, 02 sats, how you feel etc to bring with you to Toronto because even if you are having a good day, this should give the physician some data which is important. Hang in there and I’m looking forward to hearing how your appointment goes.
Warm regards,
Charlene. -
Hi Charlene I was recommended to take (by a pharmacist) Echinacea drops, an immunity booster, they taste absolutely foul, but I must say they seem to be working, been on them for three months now and been in direct contact several times with the nasty chest virus that is around and also coughs and colds and touch wood, so far I haven’t caught even the slightest sniffle.
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Hi Susan,
Thanks for sharing – yes, I’ve heard that Echinacea drops can do wonders for our immune system. I should start taking this as well, mine has taken a significant hit the last few weeks. Glad they seem to be working for you — stay healthy!
Char. -
Charlene, so sorry to hear you are not feeling well. Please take good care of yourself.
Update on me, I never did get a cold, my sore throat cleared, so far so good, knock on wood. My good day was just that, a day. My sats have been quite low. Rest 92-95, slightest exertion it drops. New Year’s eve we went to friends house for dinner. A nice quiet time. The wife is a palliative home care nurse. When I was getting my coat and boots on I was huffing and puffing and she could not believe how SOB I was. She got out her machine and my sat was 84% and my HR 128. She was worried and told me I need to take it easy until i get oxygen. This scarred me more than anything as as long as it was me checking i could remain in denial. Now I can not. I have contacted my union rep today and letting my employer know i need to be on modified until at least assessed in Toronto. I cried a bit. They have been good so far letting me work mostly from home but now I need to work exclusively at home and not do home visits. I really need to look after me.
Happy new year
Nan
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Oh my goodness, i just watched the news and saw how bad the fires are in Australia. Malcolm I hope you are safe. It looks so bad for everyone but especially those with lung disease. Here is it mild, cloudy and dampish, not to bad for breathing. I coughed a lot outside but that is normal for me. I can’t imagine air filled with smoke. Do take care!
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Sorry to hear that you have been under the weather Charlene, please do take the drops, they are foul though, really foul but needs must
Sorry that you have had someone else tell you, you need oxygen Nan, must have been distressing but when you need it you need it, the need is to protect your other organs, it wont necessarily (suppose it depends on your disease) help with your SOB, it doesn’t help me as much as I hoped/thought it would.
Yes poor Malcolm, can’t imagine how bad that can be, my brother is also out there, he is not affected by the fires this time but I nearly lost him in the fires some 11 or so years ago.
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Hi Nan and Susan
We survived NY eves fires, the front came within 100m of our home, we and the town were saved by a massive wind shift at exactly the right moment, that blew the fire back on itself. Other villages didnt do so well with the southerly blowing the flank of the fire across the towns.All in all a horendous day, 40degrees c (105)f, down to 50m visability and smoke.
We woke up new years day and decided to get out, I couldnt breath.
The power, telephones, tv, radio, internet the national radio &tv broadcaster all burnt out and not working. Fuel being rationed, thousands of holiday tourists stranded, supermarket shelves empty.
Jan &I drove the 300kms to Sydney and because of the traffic and blocked roads it took us 12 hrs over two days, we stayed with friends last night and with my sister for the next few nights.the country where the fires have burnt is totally devestated, massive eucalypts smashed knocked over and still burning. The fires are to big and inaccessable to be put out, what we need is 6ins of rain, and thats the only thing that will stop the destruction. No rain is forecast.
Another really hot day is forecast for tomorrow.
Things are ok in Sydney, only low 30s, air pretty clear, and the beach not too far, my breathing is a lot better.
Cheers
Mal -
So pleased you got out Malcolm, do hope that your lungs recover, can’t imagine how you suffered. Hope when you can go back home that everything is OK. My brother is in the Victoria area and the fires, years ago, came within 100m of his house, too, I heard afterwards and he didn’t care, he had just lost his wife to cancer, the phones went out, several days of sheer panic and grief, BUT he had the heart to go and help another widow and so saved her and himself. They have since become an item so in a way the fires did him good. Rain stopped here over Europe so maybe you will get a miracle Amazing how the temperatures can vary over there Victoria has had record high temps, I think David said one day was over 45°
Stay safe
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Hello Malcolm, I am happy you got out safely. What a horrific experience to go through. Prayers are with you and your family, and everyone who has to experience this disaster. Take care and breath easy. Mark
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Hi Nan,
Thanks for writing – I continue to slowly get better, but this has taken a lot out of me. One day at a time when it comes to recovering from an illness with IPF.
Glad your symptoms didn’t manifest into a full blown cold. I’ll keep my fingers crossed that this continues for you! I wouldn’t be surprised in the least if the doctor’s prescribed oxygen for you in Toronto, given those numbers. In the low 80s can be quite dangerous for your heart, I’m glad you’re tracking all of this. You’re absolutely right about taking care of you — as hard as that is. I have yet to make the full step of resigning (or even going down to part-time hours, though I’m off right now due to being so sick) but know that isn’t far off. I’m really glad your workplace has been accommodating. That is great to hear!
Take care of yourself and keep us posted on how you’re doing, especially how the TGH appointment goes!
Char. -
Thanks so much Susan – I just ordered them on Amazon. Fingers crossed the help me stay healthy throughout the rest of this horrid cold and flu season. Take care! Char.
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@mal-com
Hi Malcolm,
Thanks so much for writing and letting us know you’re okay – I’ve been thinking of you! What a horrendous ordeal you must have experienced with the fires, I just can’t imagine. I’ve seen pictures of the “blood red sky” and it just makes my skin crawl with fear, then thinking of all those struggling due to health conditions (like IPF and being unable to breathe in the smoke) and the poor animals too, makes my heart cry. I’m so sorry this is happening to your beautiful country. I love Australia, spent lots of time there and I feel impacted by the fires so I can’t imagine how all of you feel.
Glad you took the steps to protect your lungs and to get to cleaner air! We’ll continue praying for Australia and hope the fires burn out soon. Thinking of you during this tough time – stay safe!
Char.
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