September 28, 2020 at 3:55 pm #25657
I have found an hour a day in therapeutic 93 degree water is wonderful in helping me exercise. I am on oxygen and can only walk about 20 steps before my O2 level starts to plummet and my Heart rate goes up and the huffing and puffing starts for over 5 minutes while sitting. But, in the water I can march, and run, and walk forwards and backwards and sideways using the water with breast strokes, regular swimming strokes, etc while attached to my O2 condenser sitting on the side of the pool… yes, I’m only able to go 6 feet in all directions, but hey!. I also bicycle on my noodle for 5 minutes going backwards and forwards. Every joint gets moved using arthritis very warm water exercises, too. I really dont get tired, except I slow down to a dribble after 40 minutes and then do all the easy barely moving arthritic exercises — like turning you head to the side and wiggling your fingers as if you’re playing the key board and box’s punches, jabs, upper cuts and slam-ins from the far side to center–zoom-zoom.
So, for us oldies who really have problems, but no lung transplant, the water is the way to go.
September 28, 2020 at 5:46 pm #25658
Lucky you Anne, wish I had access to water here but the nearest pool is many kilometres away and now not open to the public because *the season* is over and of course Covid 19 is putting a stop to almost everything. My O2 is now plummeting to the lowest I have ever gone, 55, with the merest effort, my appointment with the doctor that first put me on O2 isn’t until Nov 17th, think I will have to see some one before then as getting lower each week.
Keep up the good work in the water, sounds brilliant.
September 28, 2020 at 7:23 pm #25660
oh, my goodness, you’re O2 goes down to 55 while on your oxygen? What number is your O2 set for? I’m on 5 which works fine while seated — 93, but once I’m up and about it drops into the high 60s but goes back up once I’m seated. Is your heart acting up with lack of O2? What is your heart rate during your exertions? And what are your merest efforts?
Yes, definitely contact your doctor immediately. Anything under 90 is bad, but 55 sounds like an emergency number to be taken care of ASAP!!!!!
I live in a 100,000 person community that is a planned community. Each of the 9 “villages” has a strip shopping with a grocery and pharmacy plus other stores. There is an association building for information, weddings, anniversary parties, wakes, and games, etc. Also, they have either an indoor or outdoor pool. The indoor pools are in large gymnasiums. The closest one to me has the therapy pool which has leased out space for physical therapy to use, but we can use the other part.
September 29, 2020 at 3:32 am #25663
My back pack is set at its maximum of 5, when I went down to 55, all I was doing was going to the car, some 15 metres, back pack on, with a small bag containing a few groceries for my daughter. I try not to panic when I drop so low, I stand still and do my breathing exercises, trying to breathe properly from the diaphragm, nearly impossible, and blowing out. My heart does race a bit during these episodes up to about 120. I actually don’t need O2 at all when seated, can go for good couple of hours without it as long as I stay seated, brilliant because I need to drive here, I make sure I am on *full* before I even start the engine. Shops are 12 kms away so a car is a necessity, shops usually flat so can get what I need, getting it into the house is a different matter, wheelbarrow comes in handy. No such thing a deliveries out here. I experimented with turning up my static O2 recuperater to its max and went into the basement, 9 steps, no difference, couldn’t breathe, so think maybe a more powerful machine will not be the answer now.
I live in a little hamlet of 10 houses in mini mountains in a designated natural park, pure air BUT of course nothing is flat. I now rely on neighbours to walk my slightly larger energetic though elderly dog when they take their for a walk, my tiny three legged one is content with my huge 2,000m garden, can still mow as I have a ride on mower so the grass areas look good, can’t say that for my gravelled garden. Would have loved to have access to something like your gymnasium and pool, sounds wonderful. Nearest pool here is a good drive away and is now shut because the *season* has ended, rely heavily on tourists here.
I might have to see my local doctor before my appointment in November, just know I will be hospitalized again, no fun at the best of times but under Covid regulations not nice at all and scary, so trying to avoid until I really can’t cope any more.
September 29, 2020 at 8:10 pm #25678RandyParticipant
I would just like to add to this forum. I was diaginoised this past spring with IFP so everything is new to me about all the drugs, oxygen 24/7 and trying to exercise. By the time I was diaginoised, I was pretty. or should I say, am, below the 50% stage. I have already lost one lung and the disease is working on the other. So, I don’t get to do much. The drugs I am on, not sure are really doing anything to help slow it down. I have been reading alot of articles about the drugs that are being studied and some look pretty promising. I hope they become available will I can still get some use out of them. The two that are listed as being used now have lots of side effects I really don’t want to encounter. Everytime I bend over to pick something up or tie my shoe, I am completely out of breath. My oxygen levels goes from the 50’s to high 90’s and sometimes reaches into the 100’s. My oxygen consentrator is set at 5 for me just setting around, but I have to bump it up to 7 or 8 to breath if I try to do anything. Walking, I have an enogine. it is the newest one but only goes to 5 and am told by my lung doctor that that isn’t really true, It only puts out about half of what it says.
I too have arthritis in all my joints which doesn’t help the situation. Have had 1 knee replaced and my have to have something done with it. It feels like it is twisting. On top of all this, I have afib. sure you all know what that is.
Well, I think I have rambled on enough. If anyone can get anything out of this great. You can also write me an email for anything personal.
Have a great rest of your week,
September 30, 2020 at 12:16 am #25680Reshma JoshiParticipant
Hello @Randy and @reglois
Thank you for sharing your every day struggle with low oxygen level and heart racing problem. My mom has IPF and she has this heart racing like “asthma” quite often. Sometimes even while seating her heart is pounding and her breathing becomes very heavy like having asthma. Do you guys have any solution or recommendation while having such heart racing? Any tricks or hacks?
Have a good day both of you 🙂
September 30, 2020 at 2:18 am #25681
My back pack also only goes up to 5 and I have just found out that equals about 2 litres a minute, way below what I now need. I have an appointment in November to see if I can get one that goes higher as my ability to exercise has suddenly dropped to almost nil and I am not prepared to spend the rest of my life just sitting. I don’t know if any one else has high ish oxygen needs when up and about, I go down to 55 at times (suddenly in the last few weeks) even on O2 but when seated can stay at 95 for a couple of hours without any O2 on, is this just my disease CPFE or does any one else have this.?
I have also refused the two recommended drugs because of their side effects, I value quality over quantity, and I feel that they will not be of much help to me at the stage and age I am at. I cannot really bend much at all now.
Have you got elastic laces Randy?, they are a great help along with a shoe horn.
Hello dear Reshma, Sorry cannot be of any help with your question as I only have a racing heart with trying to exercise and low O2. and sitting down solves the problem for me.
July 13, 2021 at 9:12 pm #29223
September 30, 2020 at 10:16 am #25683
Thanks so much for sharing this with us! I completely agree re: the benefits of water and gentle exercise in the pool if you can. I love to do that as well, and kudos to you for doing this – I know it is easier said than done. I know a few members are regular ocean swimmers (lucky!) and find tremendous benefit in this type of exercise. Thanks again for sharing and keep up the great work!
September 30, 2020 at 12:58 pm #25689
I’m so excited to know that there really are other people besides me who go up and down so often with their O2 levels.
Again, where do you get your O2 readers that go below 60 in their readings and also, will read your low levels quickly. (I have tried 4 so far and none of them really work for me) I sometimes am so out of breath after climbing 3 steps and walking into my house I’m not sure if I’m ever going to breathe normally or just die……my O2 reader will not give me a number.
I only have my heart racing hear when I have been up and moving. With me, I cant go more than a minute or two of moving around with out my heart rate going up. I’m beginning to believe this is the normal for people like us who have their O2 go down and up due to moving about.
When I bend over to deal with my shoes, I run out of O2 also. I have problem feet and have to get very wide and high depth shoes—-all are velcro, but hard to get the back of the sandals on at the pool while sitting on my scooter. I try for a while and then come up for air for a while and rest; then bend over to try again. I think this is just the normal for me.
I use Respironics Simply Go Mini as my condensor. To get from my house into the car, I a have little tank with a special top that allows me to have as many breaths as I want (not limited to number of breaths the portable condensors let you have) and it gets me to the car and back in my garage. I keep it on my walker.while taking my mini with me for use in the car and on the scooter and in the pool.
I really prefer the O2 that comes out in spurts than the continuous kind. I know we’re told you get more O2 from continuous flow,, but I really feel I get more O2 when using my mini. What about y’all?
October 1, 2020 at 3:08 pm #25691Jonathan PolandParticipant
Hi Susan (and everyone else). I have PF and use O2 for sleeping and exercise. I am also an engineer, and it is that role that I’d like to explain the differences between home use and portable oxygen concentrators.
Don’t worry so much about the actual amount of oxygen they are producing, but the amount they are delivering into your body. The portable is more efficient so it doesn’t need to have as much going out the machine.
Home use concentrators measure true flow of O2 and deliver it continuously (just like in the hospital), even when you are not breathing in. Depending on how quickly and deeply you breath, a lot of that O2 is wasted back into the air. (When I exercise, I estimate that 75% is wasted & way more than than when I sleep.)
Portable units are way more efficient because they don’t sent out a continuous flow. That would make them too heavy to carry and would also drain the battery too quickly. Rather, they have a sensor that detects when you inhale and shoots the O2 into your nose so that little is wasted. This is why most portables are called “pulsed concentrators“.
So it is true that your portable unit is not producing the same amount of oxygen, but it is also very likely that it is delivering an equivalent amount into your lungs; depending on how quickly and deeply you breathe. The factory designed the portable so that a 2 setting gets the same amount of oxygen into the lungs of a typical patient as a home unit set at 2 lpm.
I am not a doctor. But I’m sure your doctor would want to see you right away if she understood that you feel like you aren’t getting enough oxygen when you are using your portable.
October 1, 2020 at 4:10 pm #25694
I had come to the conclusion that the number 5 on my machine (pulsed) wasn’t 5 litres as I had been led to believe.
I did see my doctor yesterday as I felt so bad, I am waiting on a call from the hospital, they said by the end of the week, have to have a stint in there as they are concerned about my very low levels at the slightest exertion even on O2.
Mine is also a Respironics Simply Go and is on its max at 5, it starts alarming as I end up breathing too fast trying to get enough air. Had to up my home recuperator to 3 1/2 without permission, just to be able to move around in the house, i.e shower, get dressed, loo, kitchen, feed dogs etc, as I live alone with my 2 dogs. Cannot exercise at all at the moment which is very frustrating cos lack of exercise I know will be a problem when I can hopefully get back to walking my dogs. I have also found that if I turn the house O2 down to 1 I can sleep better, very restless sleeper so probably my levels are now going down as I sleep but at 1 I can get a goodish night
Got my Oximeter on the Internet, got a fairly good quality one for about £20, three years ago, but you cannot keep it (or any of them, bar the massively expensive computer type ones) on your finger all the time, you will not get an accurate reading that way. I stop then put it on and wait for it to either decide to stay at the initial reading or as it does now, start to drop before coming back up, about 5 minutes to get back up to 92. No nail varnish either, they cannot read through that. I am in the 60’s mostly with the slightest effort, not good. I agree trying to bend is so very uncomfortable, and your description of lack of O2 is so accurate, couldn’t have put it better myself, scary isn’t it?
October 1, 2020 at 11:41 pm #25695
Wow, you all have an admirable attitude.
I was diagnosed with IPF around 2012 and I still don’t have the severe symptoms described above: you all seem pretty brave and your attitude is simply great, I don’t know that I could maintain such a positive attitude.
I do have arthritis, ankle, hand, fingers and lower back and it seems to be getting worse and showing up on more body parts. Seems a few of you have it too, is arthritis associated with IPF? As my IPF worsens will my arthritis get worse. One doctor told my I had “ILfuVd” rheumatoid arthritis, he said it was an autoimmune decease. I didn’t think much of it until I mentioned it to my IPF doctor who said the biopsy they did a few years ago didn’t not show any evidence of autoimmune issues. Is it possible for IPF to trigger an autoimmune response like arthritis?
- This reply was modified 9 months, 3 weeks ago by Charlene Marshall. Reason: formatting to remove code
October 2, 2020 at 2:41 am #25697
Hope you continue to not suffer severe symptoms from your IPF, brilliant.
It is possible that lung disease can trigger an auto immune disease like SSs (Systemic Scleroderma), OR for SSs be responsible for the lung disease, or rheumatoid arthritis or any combination, in any order I think, sure I read this somewhere. I have SSs with the CPFE, also mild arthritis but have always put this down to old age..
October 3, 2020 at 1:39 am #25702
Thank you for the information, it is so interesting that a lung disease may trigger autoimmune responses. In my case IPF preceded the arthritis so you are probably right. Also, I never had allergies until a couple of years before my IPF diagnosis. I suspect I had IPF before the diagnosis and that the allergies also are consequences of IPF and autoimmune responses. I accept what is yet I dread the worsening of my IPF and arthritis, I hope I can be as brave as you all.
- This reply was modified 9 months, 3 weeks ago by gil.
October 3, 2020 at 3:03 am #25704
My CPFE also preceded the SSs; it is of known origin from being poisoned at work, 25 years of breathing in zinc chloride fumes, now used in strong concentrations in chemical warfare, no health and safety in those days. I know I have a rarer form of PF. Keep getting the label IPF which is very different from CPFE, my original and true diagnosis
Don’t think it is a case of being brave, I accept what I have got and that some of my decisions will shorten my life but I want quality over quantity and that should always be my choice.
October 3, 2020 at 10:31 am #25706KristieParticipant
I have Pulmonary Fibrosis but it is of known cause. (Avian proteins and mold). I was diagnosed 12 years ago and have been on supplemental O2 for 2 1/2 years. When doing walk tests I am always made to sit down when my o2 levels drop into the 80s. At that point I’m not even breathing hard and don’t feel O2 deprived at all. I have always wondered what it goes down to when I AM breathing hard and feel that I’ve got to stop. When I’m breathing hard I’ve never noticed my heart pounding hard at all but I have to stop because I get dizzy and feel faint. My O2 is 98-100 if I’m sitting perfectly still, but any amount of movement, even talking, causes my levels to plummet. I normally use 4L of supplemental O2. I recently got a pulse O2 sensor and decided I would check to see what the level goes to when I work hard. So I did some stuff while wearing my backpack with 4L and when I was breathing hard and had to stop I put on the oximeter and it was 47 my heart rate was 50. As I sat, over the next 40-60 seconds the O2 climbed back up to 99. During the climb up, when it hit @70, my heart rate sped up to 139 and slowly returned to normal.
I learned that your heart has to have enough O2 to actually beat hard and my idea of working hard is actually doing too much. So, you are not alone in having normal O2 levels at rest and really bad levels when you do things.
October 4, 2020 at 10:01 am #25711
Thank you so much for explaining this and sharing your experience with us. I can’t imagine how it feels to have your 02 reading be 47! I think even seeing that number would scare me into having a physiological response to it, but I’m glad your 02 recovers so quickly with rest. Kudos to you for continuing to exercise, but please do be careful. The notion of your heart needing enough 02 to beat properly (thus reflective of your HR when exercising and at rest) certainly makes sense. Take care and thanks again for sharing! I’m going to look into this more, as we get a lot of questions on the forum about 02 levels and heart rate.
October 3, 2020 at 12:27 pm #25708RandyParticipant
Seems the talk is about exercise, heart racing and breathing. Yes, that is a big problem. If I am setting I can be on level 5 on the machine, but start walking around and my breathing goes from mid to upper 80’s, 90’s to the 60’s- 70’s. My heart rate goes crazy seems like all the time. With afib, you never know what to expect. I can have the oxygen/pulse meter on my finger and watch the heart rate go from the mid 90’s down to the 40’s and up to the 100+ and back down again. All I can do is set and wait for it to settle down. Breathing on my walks with the inogen is a little difficult. I can have it on 5 or 6 and walk about 1/2 block and have to set down. My oxygen gets down to the 60’s-50’s, I get spots in front of my eyes, my heart goes nuts. Again, set for a bit before going any further.
I have had degenerative arthritis longer then IPF. I was diagnoised with IPF this spring but have had arthritis for over 6 years. So, I don’t think is is connected. That’s my thought anyhow. I may be wrong. With 1 lung being gone already, the IPF may have started along time ago. When I was told how long I have, they didn’t give me a starting point.
We all have pretty much the same problems with this disease and I know I am hoping, as I am sure others are, that a cure is developed, if not in our live time, then the next group of people who get this terrible disease. I would at least like something that would slow it down. I still have some more living I would like to do.
To each and everyone of us. Pray and wish each other luck on getting a long life to do what we would like to do and fill our bucket list.
October 3, 2020 at 1:18 pm #25709
Like you I have never felt oxygen deprived when into the 80’s and no heart pounding until I have to stop because my eyes go blurry and knees to jelly, I know then I have gone down too low. ATM I am having a problem, suspected PAH (waiting to go into hospital but with Covid rules about, beds are a problem) and can hardly move without dropping into the 60’s and 50’s. Can’t imagine what 47 felt like 55 has to my knowledge been my lowest and I felt pretty awful with that. My heart rate jumps all over the place at the moment. Taking are fair time to get back up from low O2 rates, about three minutes, sometimes 5. Totally fatigued
I wish you well but please don’t allow yourself to drop that low again can cause organ damage.
October 3, 2020 at 1:32 pm #25710
Yes I would think you have had lung disease long before this spring. I was diagnosed with asthma for several years before my diagnosis, now on my third year since.
October 4, 2020 at 10:11 am #25714
Thanks so much for sharing your experience with us. I just read your post and wanted to share the part that really resonated with me…. about having more living to do! I always tell people I speak with it, be it doctor’s, researchers, advocates, etc. that the ideal would be finding a cure for this disease, of course. However, I’d be equally happy with something to slow down the progression of it, giving us more quality time. I can learn to live with this disease if it stabilized over a period of time. There are lots of researchers focused on finding a cure which is great, that is the ultimate success of course, however, something to slow down the progression or improve our quality of life would also be most welcome. Thanks for writing that.
October 4, 2020 at 10:17 am #25716
Thanks so much for writing, so nice to hear from you! Though, sorry to hear you’re also dealing with arthritis on top of the IPF diagnosis. Does it cause you much pain in the extremities you noted you have the arthritis in?
There certainly is a relationship between PF and autoimmune conditions. I’d like to understand more about it, so am setting out on reading some evidence-based literature on it, though not sure how much I can digest without being a trained medical professional. Oftentimes, IPF is caused by an autoimmune condition, and likely vice versa. I was attending a group on Thursday night where someone shared an astounding fact from a doctor in Los Angeles who specializes in lung fibrosis + autoimmune conditions: that it can take up to 6 years for lung damage to show after the onset of an autoimmune disorder, and sometimes that is the first/only symptom of it. I couldn’t believe it! I am going to look into this deeper, as many physicians say that I can’t have PF that is “idiopathic” due to my age, and yet, none of them have offered any other solutions and I’ve been diagnosed with IPF. I’m wondering if I have an underlying autoimmune issue? Not sure but I’m going to look into this more and will share any findings with you and the forum.
October 4, 2020 at 10:19 am #25717
Hi @anne-tarantino ,
I’m wondering if your 02 levels are too low that a store bought pulse oximeter might not be strong/effective enough to produce a reading? Just a thought: could you order one through your doctor’s office I wonder, that has more of a “medical grade” level reading? Not sure if this is an option, just a thought 🙂
October 4, 2020 at 1:15 pm #25718
I’m to go on a face to face with a doctor tomorrow. I’ll see if he knows how I can order a medical grade pulse oximeter—that is, if I remember!!! Thank you for your suggestion. I remember asking my oncologist’s staff about ordering one, but they didn’t know. Maybe my endocrine doctor will know.
October 4, 2020 at 2:12 pm #25719
The nearest one to mine that I can find on Amazon is Innovo Deluxe iP9000AP at 27€96, classed as medical grade. Just go to Amazon and you will find loads my other one, cheaper, is Avax, both work very well, you do not need expensive hospital grade ones at all. Don’t know what country you are in but both of mine were ordered from Amazon. UK.
Wish you best of luck with your doctor rendez vous.
- This reply was modified 9 months, 3 weeks ago by Susan Howitt.
October 5, 2020 at 12:38 pm #25721
Yes, the arthritis pain is mostly on the extremities but the most painful part is above my ankle.
“There certainly is a relationship between PF and autoimmune conditions. I’d like to understand more about it….”
So would I. I too think that autoimmune conditions may trigger IPF and vice versa. I am going to give this more research time, I am hoping IPF does not have a genetic predisposition, I have kids and grandkids. My two daughters have different autoimmune disorders and so do two of my grandkids. Almost three years ago I had a biopsy and there weren’t any autoimmune issues so I have many unanswered questions.
I hope the doctors are able to explain why you have IPF at such a young age and identify any underlying issues. But more than that I hope for something that stops the IPF progression without toxic effects. I suspect a DNA-based treatment is doable and will be available sometime in the near future; and I also believe that it will be safer than current drug treatments.
October 6, 2020 at 7:12 pm #25737
I was amazed that there are so many of us over 55 who have this disease. I also am surprised to read about the heart rates around 50 when O2 is in 50’s and then bounce up to 110 or 120 as O2 rate goes up, then go back to your normal rate. My hubby told me my heart rate of 50 wasn’t possible, it had to be an error with my tester. Now I know I test out similar with my friends or buddies in my pulmonary fibrosis group.
October 6, 2020 at 7:20 pm #25738
Goodluck Anne! How did it go with the endocrine doctor the other day and obtaining a pulse oximeter? Was thinking of you!
October 7, 2020 at 10:18 am #25747KristieParticipant
I saw my pulmonologist yesterday and told him about the O2 saturation of 47 and how my heart rate went down to @ 50 when that happened. He said it something he sees all the time, in the hospital, just before someone has a cardiac arrest. He said STOP doing that. It can make you DIE. If your oxygen drops down in the low 80s and stays there very long you are doing organ damage. There are some people who can adjust to lower oxygen levels, however, As a general rule, if it goes lower than that and your heart begins to slow, you are in danger of having a cardiac arrest.
So, your pulse O2 isn’t necessarily wrong. Don’t risk it. Stop before you drop low. I need to stop before I’m even feeling out of breath. This disease sucks so much.
take care of yourselves out there. Exercise can be deadly if we aren’t careful.
October 7, 2020 at 9:53 pm #25755Mark KoziolParticipant
Hello Kristie, I am relieved you spoke to your pulmonologist about your oxygen levels. Thank you for sharing the conversation you had with your pulmonologist with the forum members. Please watch levels and breath easy. Mark
October 28, 2020 at 9:04 pm #25951
So sorry for the delay in getting back to you!
How is your arthritis pain since we last spoke? It is still on my ‘to-do’ list to do some research about the correlation between PF and autoimmune conditions. That said, since it isn’t super time-sensitive, it keeps getting bumped on the list. Let me know what you find out, and I’ll do the same. Fingers crossed some new information will be revealed for all of us living with this cruel disease!
Hang in there, thinking of you.
October 31, 2020 at 9:11 am #25985Penny SpanoParticipant
Heck I can’t even get a couple of doctors to try and work together to help me figure all this out. My heart races just sitting in a chair. My blood pressure is all over the place from real high to all of a sudden it drops. If I start feeling hot when all this happens I just pass out it all happens so fast I really don’t have much warning. I can’t even get drs to see me because all my problems were caused by Covid. The drs that did take a test would come back tell me they aren’t sure what to do. I finally fought and fought to see some of my medical records and I now have several autoimmune issues, rheumatoid arthritis, IPF, now I’m having heart problems. I started ofev to try and slow things down. I had nothing show up in January with my physical. This Covid has like activated every negative thing in my body and it’s all happening since August. I can’t keep up with it all. My drs won’t even tell me what’s happening I had to go hunt down my medical files to find out well I mean my son had to do it. Now it’s starting to effect my mind and eye site. I’m not sure what to do I have been turned away from most of the drs around here. The drs I do have don’t seem to care about telling me the truth or who to see for what. They have me referred to another then they say can’t help and refer me on. Finally I have the Mayo Clinic in Florida to take a look at my files and none of the drs or hospitals will send them to Mayo. I have been fighting for everything with this crap and in January I was hard at work now I can barely get out of bed to go to the bathroom. If I feel kinda ok my exercise is just trying to walk to the kitchen with oxygen and I still have trouble it takes me hours to try to get dressed get to a car to go to a dr. I’m trying to remember everything I might need on a road trip to Florida so anyone that has left town with these problems what should I take. My luck has been so bad I’m afraid to leave my house. Any suggestions would help really new to all this and not getting much help. Thanks everyone
- This reply was modified 8 months, 3 weeks ago by Charlene Marshall. Reason: tagging
October 31, 2020 at 11:40 am #25987
All very well your doctor saying stop doing that, wish we could, I never know from one minute to the next what will cause it, ie carrying something little will sometimes do it, then carry something heavier wont !! I do know for me even bending a little will cause an instant large drop, so bought a grabber.
Saw my doctor yesterday for prescription renewal, she saw the state of my breathing and my swollen hard leg the scleroderma plaque has swelled and is full of fluid which is now leaking, I was supposed to go to hospital three weeks ago but no beds now with the country in full lockdown there is a bed available next Tuesday, so hopefully will get leg sorted and more oxygen if that is what I need, they think I have Pulmonary Hypertension. Still a bit scary going into a hospital under Covid conditions (had my compulsory test this morning)
Take care every one. Sue
July 9, 2021 at 12:45 pm #29180Nancy RunyanParticipant
I have been reading along since I was diagnosed with IPF in Nov.2019.It’s 2021 and I still am fighting with oxygen .The way it goes up and down.How much to use etc.Like many here sometimes it drops down in the 47 range but if I sit down it goes up fast into the 70 to 80s,then on up gradually.If I just sit it can be set at 2 or 3 and I get to thinking I am ok.I have a fib as well.Both of my Dr.s say My symptoms have not changed and give me a new appointment.My pulmonary Dr. says to use my oxygen at whatever number I need for what I am doing.My cardiology Dr. says I can not have surgery but he can give me medicine if needed.This is definitely a journey for all of us.I did not choose to take the medicines to slow this disease.I end up allergic to medicine and did not want to even try.I do hope they will find a treatment for it.I have learned a lot reading what everyone else who has this writes.Thanks all.Nancy
July 9, 2021 at 7:21 pm #29185ChristieParticipant
Hi Nancy @norunyan123, I would agree with your pulmonary doc and crank up that O2! I’m not a doctor, but 47 is very very low. Even maintaining in the 70s and 80s at rest makes me nervous. It’s not a sign of weakness to need more oxygen. In fact, using more so that your saturations stay higher will help with your overall health and make you feel better and more energized. Imagine putting a plant inside a box with a hole poked in it… the plant requires sunlight to thrive and grow. Just because the hole does technically provide the plant light doesn’t mean it will be healthy in the box. You wouldn’t leave it in there knowing it could thrive if you set it outside, right? Give the plant what it needs… give your body what it needs 🙂
Wishing you the best and I hope you can find a treatment plan that works better for you.
July 11, 2021 at 3:47 pm #29198Nancy RunyanParticipant
Hi Christie, thanks for the reply.I will talk more to my Doctors about these problems.I have always been healthy other than the usual aches and pains until this came along.Also have been used to grinning and bearing illness until it went away.I am 83 .
I just try to figure most things out myself.The low oxygen would come when I try to keep doing things and force myself to finish instead of sitting down and breathing.I will usually be in the 90s when I sit.If I am up and doing I need 4 to 4.5 .Then Still need to sit and rest when I start to get breathless.Thanks for your interest.I will keep reading what people have to say about
themselves.It helps me a lot.
July 13, 2021 at 9:06 pm #29222Steve DragooParticipant
That’s an inspiring story. I try to exercise but my heart doesn’t like that because of PAH. Yesterday my wife and I went for a walk but only a couple hundred meters as I was struggling. Later in the day, she wanted to take a short nap which is rare for her so I told her I wouldn’t make her walk so far the next time. – We laughed.
Did your doctor assign you PT at someplace with a heated pool?
Stay well – Steve
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