Karen Martin
Forum Replies Created
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I’ve never been told anything about an optimizer. I have IPF, emphysema and PAH. I use 15lpm with exertion which now means just about everything other than sitting. Even with pursed-lip breathing my SATs drop quickly into the 70s. My doctor’s office is looking into something called Life2000. Looks like a poc but has different levels of O2 depending on what you need. I realize that this is not what you are discussing but has anyone heard about this? Thanks for letting me drop this into the discussion.
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I’m also using two concentrators for activity. I need 15lpm. However, my doctor wants me to use the lowest possible amount of oxygen when I am at rest. That, for me, is about 3-4lpm. The POC isn’t enough so I have to use a tank, which still runs out fairly quickly. I really don’t want to have both concentrators right beside me because of both the noise and heat they generate. Any suggestions?
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For those who are on Medicare, once you hit the “catastrophic” stage, they pay all the cost. You will have no copay for the rest of the year. Finally, a good thing about being old! 😉
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You might try having your wife drink peppermint tea. Sounds crazy and too simple but it works for me. The pain and tightness just melt away, no gas or burping involved. Best of luck.
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Hi, Nate. Unfortunately it seems as if getting a diagnosis for almost anything these days takes a loooong time! Not to say your doctor is wrong, but is it possible the test reading was in error? Could the test have been faulty? I’m all for getting a second opinion. Crackles are nothing to be ignored and listening through your shirt is a waste of time that any good doctor should realize. I understand your anxiety over this. None of us want to have it but there are meds out there that can help a lot. Don’t give up! See about finding a different pulmonologist and take your concerns to him/her. Best of luck to you.
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I’m a 73-yo female and was diagnosed in January 2018. Like everyone else here I started off needing oxygen only when active. That progressed over time to where I am now using 15lpm when I am active and down to 2lpm at rest. I also use a CPAP at night with 3lpm oxygen. You have to get used to the idea of pulling/carrying along your oxygen. When my needs got so high, I learned to bring along extra tanks. I put a full one in the front seat of the car for driving to the doctor, to visit family or go to the library. I then switch to a full tank on the dolly that I have in the back of the car to go in and do whatever I need to do. Because I can lower my O2 when I am sitting down, that tank will give me a couple of hours time. Then, I still have O2 in my “travel” tank to get home. It has been trial and error to get here, but it can be done if you just get creative. Depends on how much you want to do something and how well you can accomodate your needs. I wish you well, Arjun.
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I’m wondering if anyone is still wearing a mask when going out these days. I have been vaccinated for COVID and had my boosters. Some people still wear masks working at the library but not many others do. Am I being overly careful?
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Here in southwest VA the pollen counts have been especially high this spring. Trees and grass pollens are fierce! Even using Zyrtec and Flonase regularly, I still have days that the drippy nose just won’t give up! These meds are cumulative in effect so it’s important to continue using them regularly if they are what your doc prescribes. I keep seeing articles about huge flower blooms across the US as well as fires to the west of me and with the weather what it has been, I’m not at all surprised at the thought that stuff is being borne many miles from its origin. I wish you luck conquering your runny nose!
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Pamela, I can’t speak to your scleroderma, but humidity does a number on most everyone who has breathing issues. I stay inside to avoid it! An exacerbation is any situation that causes you to have trouble with your O2 levels. I had pneumonia in September that sent me to the hospital and it took a while afterwards to get back to “normal.” You may need to make some adjustments to your treatment plan, but since you will see your doctor soon, she will be the one to make the call on that. Don’t hold back on your feelings about this!! The doctors are there to help you. She needs to hear what you are feeling and what you are dealing with. In the meantime, keep dreaming about wedding dresses and the future with your loving fiance. Looking forward with hope is the best thing for all of us. Best wishes to you.
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I can understand not wanting to repeat too often tests that expose a person to radiation unnecessarily. Still, I would think that the doctor should discuss the plan with the patient. I have felt as if perhaps it’s just a matter of knowing this will not get any better, so why bother?! Not the best feeling and I have struggled with it. I have an appointment with my doc this coming week and will be asking for more information about his approach to future testing and what I need to be on alert for as time passes.
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This is a little more at the other end of the spectrum since my question involves needing a much higher rate of oxygen. I currently need 15lpm when I exert myself. I have had people tell me that is “a LOT of oxygen.” I suppose that it is, but it is what it takes to let me get around. At rest I can manage on 2lpm continuous flow, but when I get up to move around, it has to be much higher. Does anyone else deal with this level of use? I can’t help but wonder what happens next. Anyone?
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SOB is also linked to accumulated CO2 in your body. This is usually the case where COPD or emphysema is involved. That may not cause your O2 levels to look particularly low. If you need your pulse-ox to tell you that you are SOB, be thankful. I have progressed to the stage that much activity causes my O2 to drop into the 70s or even the 60s if I persist. Be careful of those low readings. They cause damage that accumulates. Not a good thing.
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I have been on Tyvaso DPI for five months now. Before that I was using the nebulizer form. I also find that the first thing in the morning, both of these forms cause a good deal of coughing and fatigue. My O2 drops due to all the coughing, so sitting down is the best thing for me to do. I have found that excessive coughing often responds to a few sips of something carbonated. I was told that I would probably not feel any better when taking this, but that the hope is to control the pulmonary arterial hypertension. I also take Esbriet for pulmonary fibrosis and was told the same thing about that…no improvement in symptoms, but hoping to keep it in check for a while. It’s hard to continue taking these things when I don’t see any “progress” but what else can we do? I wish all of you well with your meds.
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Sunscreen with high SPF is important when startin Esbriet. It was suggested that I use SPF of 50 or higher. One day early on I hadn’t put any on and was talking to a neighbor in the sun for about 10-15 minutes and I could feel my skin begin to tingle. I was careful after that but found that about six months later it wasn’t a problem for me. I’m sure individuals vary depending on skin sensitivity but sunscreen is the answer without a doubt.
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Hey, Charlene. I’m dealing with the same issue as you, becoming SOB with exertion. Levels are falling into the 60’s and 70’s. I rebound quickly, but it is terrifying! I’m glad to get this topic in discussion and appreciate Margaret’s sharing her information. Looks as if I will be starting on some of those exercises myself. I hope you will soon be doing much better. Stay strong.
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I was also diagnosed in early 2018. Other than progression of SOB, things weren’t too bad. Then I ended up in the hospital on September 3rd, staying for five days. They seem to think it was mild/early phneumonia that I had. I had been afraid it was COVID. The doctor asked me if I have seen my films, which I have. He suggested I talk to my family about my wishes should I end up in the hospital with another infection. That will get your attention! I know my condition is not the best. I have lots of emphysema damage in the upper lobes of both lungs and fibrosis in the lower lobes of both of them. I’ve pretty much just been coasting along on the theory that as long as what I have is still working, I’m not going to worry too much about the future. That may not be the best way to look at it, but it is my way for now. Yes, we will discuss thoughts about the future, but it can’t take over every day from here on. I wish all of you the very best.
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Martha, I’m so sorry you are dealing with all of this at the same time and are so scared. It is a scary diagnosis that I also have. There are medications that can help to slow the progression of any scarring in the lungs and there are programs to help pay for them. I hope you are seeing a pulmonologist that you like and trust. Please go to him/her with your questions. There is a lot of information on this website, but you really need to speak with your doctor as well. I am 72 and have been living with this same diagnosis since late 2017. It is possible to keep going and have a fairly “normal” life.
I would also urge you to look for a support group, maybe online for questions about this, and a local one for help with your family issues. No one can do everything alone and I hope you will reach out to others who can help, even if it is only to listen when life gets too complicated. We all need friends. Sending you love and prayers for all of this.
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Sadly, I have been told by my pulmonlogist that the only way you can really decrease your need for supplemental O2 through PT is if you are pretty out of shape to start with. Otherwise, there is no “curing” the need for O2. I have recently been through a course of monitored PT and even though my stamina is better than it was and I can work for longer periods of time without feeling SOB, I still require the same amount of O2 when walking. Being in better shape is a great reward and I am enjoying it, but the need for O2 remains.
As for the luck with swimming, perhaps your breathing technique is better when you are in the water. That’s absolutely wonderful!! Enjoy it. 🙂
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Natalie, there is so much solid information here. Pete is exactly right about the difference in pulse and continuous flow O2. Of course we should follow our doctor’s orders, but they also need to be in-the-know about these things, too. Outdoor humidity as well as temps affect breathing, without a doubt. I am also not “consistent” in my breathing. I tend to become a mouth breather when I am stressed, which is totally self-defeating. Do you know about pursed-lip breathing? That can be very helpful, as is slowing down your pace. I don’t know what the situation in your area is in regards to available pulm docs but if your current fellow doesn’t give you what you feel is adequate support and information, I would look into someone else. Best wishes to you.
Karen Martin
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Even though I realize IPF is considered a disability, I guess I don’t think of myself as disabled most of the time. Being almost 72, I have been retired long enough not to always feel the need to maintain the pace I used to. Growing up, my two brothers were developmentally delayed, so “disabled” was a word I heard often, but they were just brothers to me and the way they were was simply unique to them so I don’t see “handicapped” as being awful, just different. If you look closely enough, I think you will find nearly everyone you see has some sort of disability/handicap. It is lovely when someone offers me help and I will accept it when I need it, just as I will offer help to others when that is possible. I’m grateful for all that I can still do and all the people who support me. In the end, that’s really what life should be about, isn’t it?
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Inhaled Esbriet? Really?! I hadn’t heard of that. I am using the inhaled version of TyvasoDPI for PAH, which is much less hassle than the nebulizer form. Lots less waste, too. Guess I need to do some research on the Esbriet. Thanks for bringing this up.
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Judy, the funny thing about having IPF is that there are lots of times I wish for people to want to be with me or be in touch and then, just as often, I want them all to go away. I don’t think that is awful! I think it is just our way of dealing with the adjustments we have to make. Tired is a large part of this for me as well. I saw my family doctor yesterday and when I explained how I was feeling, he asked me if I had ever thought of counseling. I have, but it would need to be someone familiar with terminal situations. I might have to do some searching.
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Joy, I understand your husband’s preference for the DPI. It is far less complicated and time-consuming than the nebulizer. I have to admit that I still feel resentful at having to always be aware of the time and taking medicines. Horrible attitude to have, but I do.
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Charlene, I suspect the doctor would be more likely to offer other patients Ted’s information than the other way around. That way they could make the contact without any problem with confidentiality. Or maybe Ted could ask the doctor if he could print up a handout that the doctor would leave in the waiting room for patients to pick up if they are interested. HIPPA is a real bear when it comes to making contacts between patients and doctors and other patients.