Karen Martin
Forum Replies Created
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Christie, thank you for your response. I admit I feel much like a y0-yo with the question of transplant. Until I see what my heart looks like due to the PAH, I won’t know if I can even be considered now, but I think about it. It is good to know these feelings are normal. I really appreciate this group. I have learned so much from reading the posts and am glad to know none of us is alone.
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I also have itching with Esbriet and I have been on it for two years now. Backs of my hands, back, legs, ankles…you name it. Lotion helps sometimes. When it gets especially bad on the backs of my hands I have used cortisone cream, which seems to stop it.
(George, aren’t you clever, noting Bob’s avatar is a pup!)
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Dennis’s comment about transplant being the only answer resonated with me. I have not had an AE to date, but have recently been diagnosed with not only emphysema and IPF, but also PAH. The idea of transplant has been very scary to me but when I was talking to a friend today, she said, “Not to be crass, but what have you got to lose?” Something to think about. May everyone be so fortunate.
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One more thing to consider right now is where you live. Although I live in SW Virginia, the smoke from the fires out west and in Canada has made it all the way here and affected the air quality. I have been staying inside because of it, but you might also want to be checking things like pollen counts and air quality reports. I have coughing at times too, but would never expected that the smoke from so far away would affect me here.
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This question is a little different, but since you all are high oxygen users I am hoping you will have some answers for me. I can use less oxygen when I am sitting quietly, but I need 10L when I am up and about. I have my home concentrator in a central part of the house, not right next to me because of the noise and heat it puts out. I don’t turn it down when I sit down to relax because I then often forget to turn it back up when I am up and about. My question is, do you think this is a problem? Am I making myself more dependent on higher rates of oxygen by doing this? Any suggestions?
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I love Aquaphor, but the main ingredient in it is petrolatum, which is “a byproduct of petroleum refining” Good for lots of things but maybe not here?
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I have also found myself coughing after eating, mostly in the evenings. I will sometimes take something like Tums and it seems to help. I regularly take Prilosec but it doesn’t always seem to cover the evening meal.
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Lnour/Loai, I have found cottage cheese to be pretty helpful with the GI issues. I also eat chicken and tuna fairly often as my protein. At other times I will drink Boost protein drinks. They come in handy when I don’t want much volume but still need something. I hope these suggestions will help you, too. 🙂
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I know that the thing that helped me the most was going to pulmonary rehab. I met other people with the same/similar issues as I have and realized it is far more wide-spread than we think. Seeing others getting on with life and being happy and helping themselves with exercise made me see the situation very differently. I will admit that one of the first things I said to my pulmonologist was, “I don’t want this!” I still don’t want it, but it is something I can live with.
I don’t always use the disabled placard when I feel energetic. I see that as a personal choice, but on the days when I am dragging it is a blessing. By the same token, I need glasses for reading and sometimes driving if it is late in the day. Do they label me as “disabled”? Maybe I would have seen it that way at one time, now they are just a part of who I am. I don’t think twice when I see others with glasses or walkers or wheelchairs or oxygen. Not now. Acceptance takes time, but it can come if we let it.
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Hi, Yoli. Love the shortened version of your name. I have been on Esbriet now for nearly two years. I also had diarrhea for a time at first as well as upset stomach. What I was told by the company was this: Eat a small amount and take one pill. Do this again and again for the second and third pills. But what they really stressed was the need to have protein as part of that food. Because Esbriet is an extremely fast-acting medication, you have to buffer it this way. When I started doing that, the problems seriously decreased. I wish you all the best.
Hugs,
Karen
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My daughter was diagnosed diabetic at a very young age. Being small anyway, she had difficulty eating as much as the doctors wanted her to eat. We were told at that time to look for “calorie dense” foods. Perhaps this same advice might help your husband. I wish you much good luck with this. (Alternately, I would be more than glad to donate some extra pounds to him.)
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Thank you Christie, Susan and Bill. It is wonderful to have so many people respond so fast to a question like this. I will definitely be calling both the electric company and the local police/fire/emergency departments about this. I feel that I am properly “armed” now to present my/our case.
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Susan, believe it or not, your reply made me laugh! That would have been the perfect response. I will admit that I was so stunned that all I could do was hang up. What I really need to do is call back and, if I get the same answer, ask to speak to the supervisor. I think that with your comment in mind I could do that without too much difficulty. Thanks for chiming in. As my brother would say, you made my day! 🙂
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When I called my electric company to tell them about my oxygen, they told me they base their jobs on priority and that isn’t necessarily one of them! Nice, right?
Bill, I know oxygen isn’t flammable, but I was thinking about some of the other things you mentioned. I secure my tank by tying it to the shaft of the headrest in my car, but still have thought about sparks creating a problem. You know, things like having to be cut out of a smashed vehicle. Not a peasant thought. Hence, my question about posting that info somewhere on the vehicle.
Marianne, high and low temps do cause us to need more oxygen and it is always a good idea to slow down when your sats start to fall. I think you should contact your doctor and see what advice you get about what lpm you should be using in this situation, too.
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Sue and Jill, I never even thought about notifying my insurance company about the oxygen. I was thinking more about informing rescue workers about my vehicle having oxygen aboard so if there was fire involved they would be aware of the potential for an explosion. Guess I need to notify some other folks about this. I also think I will call my local police and fire departments about a warning of some sort on my vehicle. I certainly don’t recall the oxygen provider saying anything about this other than providing the warning signs to post on the doors of my house.
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This is not really on the topic, but somewhat related so I hope someone might have the answer. For those of us who use tanks and carry them in our vehicles, should there be some sort of warning posted on our car in case of an accident? Since a spark mixed with the oxygen could result in a fire, that should be something police, firefighters or other rescue personnel would need to know, isn’t it?
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I believe that everyone has “something” that affects them to some degree or other. We might not know they are dealing with a broken marriage or depression or cancer or any number of other things. The automatic response to “How are you?” is “Fine, thanks. And how are you?” We really don’t know about most other people we meet in life are dealing with. As so many of the rest of you do, I try to stay as positive about life as I can. Every “good” day gives me hope that there will be more of them. Wishing all of you many good days.
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Marianne, in regards to your BP being erratic, perhaps it was your anxiety over doing the 6 minute walk test that raised it so much. I think most people have heard of “white coat syndrome” where you are reacting to being seen by the doctor, worrying about what they will tell you about your diagnosis or having some sort of test done. You might want to monitor it yourself at home under more normal circumstances. I wish you luck on finding a company that will work with you about your tank needs. I feel very lucky to have one that is very easy to work with here in VA. It really means so much to get the help you need without a struggle.
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Jane, when you get into bed with those awful chills, don’t neglect warm socks. They make all the difference for me, even warming the foot of the bed beforehand.
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When I first read this thread, I found it interesting but didn’t think it was a problem for me. Recently, I realized that I am so accustomed to turning a fan on and off to keep me comfortable that I was just not paying attention! I also take Esbriet, but this problem pre-dates that. I am fortunate enough not to have horribly serious extremes, but they are there. May have to try David’s amitriptyline. Thanks for the suggestion.
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Char, I hope you get some relief for your dry hands. Glad maybe I was of some help.
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When I use foam soaps, my hands dry out more. Wondering what sort of soaps you have been using, Char. The hand sanitizer also doesn’t help. Just as using Vaseline on your feet and then sleeping with socks on at night to soften your heels, coating your hands and wearing gloves (or even socks!) will give you a boost. Neutrogena makes a gel called Hydro Boost for hands that is wonderful as is Aquaphor.
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Christie, I think perhaps fear is also a factor for me. When I feel myself more often SOB, I wonder if it is my “fault” for doing/not doing something or if it is a sign that things are deteriorating. Then, like an ostrich, I just want to stick my head in the sand!
I like Conni’s comment about doing anything other than breathing exercises, even cleaning the litter box! I can relate and I do have a cat! I will also have to look into the che ghung idea. Even though there has been extensive discussion on this forum about the life expectancy misconception most of us are handed at diagnosis, as I approach my fourth year, I find myself wondering.
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I find routines that ask you to inhale for a “deep breath” make me anxious. I have trouble doing that. I also have trouble holding it for extended periods at a time. I don’t know if this is just my anxiety about being able to perform these tasks or actually my breathing ability (or lack of). I also found the harmonica exercise interesting and helpful, though. Maybe I was distracted by the music itself? I have always loved to sing and find I can still do that most days, so maybe the pressure on me to perform specific exercises just makes me self-conscious. I wonder if anyone else has experienced that.