Karen Martin
Forum Replies Created
-
Ladies, I also have leg, foot, hand as well as rib cramps. I have found that drinking 6 ounces of tonic water will help. I also take potassium in addition to the magnesium, which also seems to help. Staying hydrated is very important. The most helpful item I have found is a little pill called Restful Legs. I get it at Walmart. You place two or more under your tongue when the cramps start and they will stop almost instantly!! Not to be a commercial for a product, but this is the best help I have found. It is OTC. Maybe give it a try or check with your doctor. Best of luck to you!
-
The most help I get for dyspnea is through pursed lip breathing and visualization. You need to breath from your belly, not the upper lungs as we do when gasping for breath. Breathe in slowly through your nose as your belly expands and out through pursed lips. It is best to do this when sitting with a very upright posture. As you calm down and your breathing becomes better, it helps to imagine a scene that calms you. Maybe a beach or sitting with a close friend watching a sunset. Whatever it takes to calm you. As for thoughts of how long do we have to live and how much worse will it get? Why go there? Do you wonder what your odds are of dying in a car wreck every time you drive? I’d bet not. My point here is that stressing yourself out is not helping. As someone else pointed out, we do what we can with what we have where we are. I wish you the best as you find your way forward.
-
I was just offered the generic form of Esbriet with my most recent refill. I do qualify for assistance, but I will happily take the generic form for two reasons. Number 1, I have always found generics work just fine for me. Number 2, even though the cost is not a huge difference yet, any extra dollars this makes available for others to receive assistance has to be a good thing.
-
Everyone needs time to take in this diagnosis, even your children. I am in the camp that says tell them ASAP. I’m also old enough to remember Sargeant Friday’s “Just the facts, ma’am.” As was pointed out, they can (and very likely will!) seek out details on their own. Each one has the opportunity to do that at their own speed and comfort level. You may need their help down the line, so they will probably be thinking about that as well. None of us really know what is in store for us. Live each day as best you can, rest when you need to do so, exercise as much as possible…and love the hell out of your family! Good luck to you.
-
Unpredictable, sneaky, cruel and relentless.
-
I feel very fortunate that I am still able to do my own vacuuming. My daughter and son-in-law bought me a Dyson cordless. When you are dragging around tubing, you really don’t need to also have to deal with a cord! I only have a room-size rug in the living room, which helps. I use a grabber tool for many things. I also have an extending magnetic tool that I use to pick up stray straight pins and needles when I have dropped them. I use a telescoping Swiffer to dust. Makes it so that I can reach the low as well as the high areas without bending. I have a long-handled shoehorn to help with my shoes. Bending over is a big issue, so I try to squat as much as possible. Changing sheets is really a bear as Ron pointed out. Ages ago when they taught home ec in school, I learned to do one side of the bed at a time and so I use the technique when I change them, but I will say that usually constitutes my day’s exercise when I do! 🙂 This is one time when living alone is a mixed blessing. I don’t have to take care of someone else, but there is no one around regularly to help out. So it goes.
-
Wishing you all the best with the transplant surgery, Russel! Be strong! Be fearless! God bless you and speed your recovery. You will be in many prayers.
-
Hey, Christie. Before my condition curtailed my mobility so much, I used to help my neighbor walk her two dogs. It was a lot of fun and I think your suggestion of volunteering to walk someone else’s dog or help out at a shelter would be great. Between the companionship and the fresh air and exercise, you can’t help but boost your mood and health!
-
Richard, I love your explanation for the use of inhalers! It certainly is more helpful than anything my docs have ever told me. Always nice to get educated! 🙂
-
Like Wendy, I am an animal lover. My kids and grands have dogs who are a delight to watch romp and play. A good vacuuming after they visit is a must, but well worth it to me. I have a sweet cat who is my buddy. He is very gentle and seems to pick up on my moods and is extra cuddly on days when that is what I need. He is an indoor-outdoor guy, so a litterbox isn’t something I have to deal with, a good thing since I am a widow. It was hard enough to give up my feather pillow when CPFE came along so I am glad to keep Toby and do a bit of extra vacuuming. 🙂
-
I have a small container that I carry in my pocket. Just count out my nine pills in the morning (the bottle is beside the coffee maker) and I am all set. Never have to worry that I am not at home.
-
I have always found it fascinating to see both nurses and doctors smoking in the designated areas around hospitals. Or patients with their IV stands alongside. Not that this is any solution for your problem, Char, but I always have the urge as I wheel my oxygen tank past such people to say, “Keep that up and you too can have one of these!”
As a former smoker, I can understand people feel they have the right to choose to smoke. It’s unfortunate that there can’t be some sort of “cubicle” or “shelter” for those at your place of work where they could share their toxic by-products with only those of like mind. Perhaps that could be looked into? Who knows? Maybe with a concentrated enough dose, some of them might be encouraged to quit.
-
Thomas, I am also not excited at the prospect of suffocating at the end of my days. I will tell you that my husband was hospitalized in his final days for other reasons and was medicated to alleviate “oxygen hunger.” I would expect that if one is hospitalized or in hospice care at the end stage that this would be available. Or, as I tell my children, there is always the possibility that I might accidentally step in front of a bus before it comes to that. Stay strong. 🙂
-
Linda, after reading your post about the silent GERD, it makes me wonder if some of us who are taking anti-fibrotic meds might be in the same boat. It would certainly be less expensive to treat things this way. Sounds like something worth exploring with my pulmonologist.
-
I also use Zyrtec and Flonased (generic forms for both) for the drippy nose. (They are both OTC meds, Char.) The thing with Flonase is that you need to take it every day as it works best on a cumulative basis. Once I got that part figured out, it works much better. I still have some dripping, but it is much more manageable. The Flonase is also in regular spray as well as a fine mist that my daughter prefers. Best of luck with this issue.
-
What about a strip of the two-sided velcro that sticks to itself? That could be fastened around the “handle” of the concentrator or strap of the POC and then around the canula,
-
I’m on Esbriet and don’t know if this qualifies me for a third shot. Will ask my doctor. For those of you who get a sore arm, I was told to massage the area when it starts to ache. I did this when I got my first two shots and it made the soreness go away very quickly. Stay safe, everyone!
-
Jerry, I’m wondering if taking your restless legs meds at night might be more effective. Perhaps their greatest efficacy has worn off by bedtime. Just a thought.
-
You are very welcome, Pamela. I certainly have my share of panic when I am short of breath and have to remind myself of these things. I hope they will help you.
-
It has been my experience that the high-flow is linked to darker green tubing. Anyone else fine this to be the case?
-
Sounds simple enough. Thanks for the idea. I will be trying it as I also have a problem with this.
-
Earl, thanks for the reply. I will look into the idea of a bluetooth app for that. Who would have thought of it? Well, not me, evidently!
-
Linda, I wonder if your throat is irritated enough that you are getting tiny amounts of blood in your sputum. That might make it somewhat salty. Everyone’s body chemistry is unique, which might account for why it is so bad you get sores from it. If you are using any sort of inhaler, that might also account for the sores on your tongue. Be careful to completely rinse your mouth after using anything inhaled.
Elle, I had a similar situation with my pulmonologist. I decided to look for someone else in my insurance network and wound up with a phenomonal doc! Sometimes the bad stuff can force us to find something better. I hope this will work out for you.
-
Ben, I was happy to see someone else cite the odds and the post-transplant lifestyle as reasons to question whether or not to go this route. My daughters are adamant they would do “anything” for me. But I’m a widow and feel that whereas a spouse might be there for me, it is somewhat different to ask the assistance of other family members. My husband was an amputee and the things we went through together are not things he would have been comfortable asking of our daughters. That said, I find myself in agreement with you about taking my own path. May your path be long and filled with love.