Oxygen Therapy

[ellenw]

Are any of you on long-term oxygen therapy? How does it work out with RVing? Solo? Part of a couple?

I've had a scare. Respiratory crisis (head cold --> chest congestion --> bronchitis on top of moderate asthma) put me in the hospital Wednesday night and discharged on oxygen Friday afternoon. I'm holding onto an optimistic outlook that this will end when the cold & bronchitis are resolved, but I'm really worried about it turning into the beginning of long-term oxygen therapy. Those of you who have met me know I'm easily winded, especially when I talk -- which is always! And walking and talking at the same time are nearly impossible for me. Beth, remember our walk along the riverbank? So it's possible I should have been on some oxygen all along. The pulmonologist has never said so, but I think I've probably minimized my symptoms. I have a sense it's my own fault: smoked for 35 years, quit in 2001.

The guy from Lincare assured me I could get a concentrator for the RV with a 50' tether, but I how do I go in and out easily? Seems like that would have to be back and forth concentrator-tank-concentrator-tank. Is this really doable?

Of course I have to turn the O2 off while I'm cooking inside or grilling outside. And what about the packing and unpacking? There are quite a few loads that have to go up and down those 3 steps at the entry. I travel alone and this really has me upset. I'm a weekender for now, but I hoped to be a 3- to 4-months at a time a year from now. So many plans and dreams... And I was just getting started!

I'll know more after my pulmonology appointment on the 11th. Meanwhile, I'm trying to cope with the possibilities, while staying hopeful I can go off the oxygen in a week or so.

Anyone have any first-hand encouragement for me?

[Nasoosie]

Were you using any inhalers, like Symbicort, or anything like that, prior to your bronchitis and all? I, too, have a horrid time breathing now, and two puffs of Symbicort twice a day really has helped me----of course, I haven't had a pulmonary illness in a long while (KNOCK KNOCK) and do not wish to see what I would be like under those conditions.

I feel your anguish about traveling alone with breathing, and, in my case, heart problems----but I figure I will probably not be getting better as I age, so might as well do what I can now. It took me a long time to climb a teensy little mountain with Liz while she was here, but, thanks to her patience, I did make it-----and I plan to do some more this summer!

I know several of the women on here need sleep apnea machines to be hooked up to at night, but am not sure about oxygen----they will let you know. Meanwhile, hang in there and see if things improve as you get over your illness.

[JudyJB]

My mother was on a concentrator for a long time. The problem is that they need power. There are portable battery ones, but I don't know how long they last. With oxygen tanks, there would also be a problem with the water heater and your propane refrigerator.

HOWEVER, don't panic. There is a good chance this will get resolved. I know how you feel because I also often panic at the thoughts of something going wrong--remember my bloody urine problem? I was imagining all sorts of horrible being hospitalized and surgical outcomes!!

When the bronchitis is over and you have seen the pulmonary doctor, make sure you also get an evaluation from your asthma specialist. Your asthma may be contributing to the breathlessness and maybe some new inhalers or meds will help. (I also have asthma.) Colds often make asthma worse, as you know, so maybe all of this is contributing to your breathing problem.

Even though my mother was on a concentrator, that did not mean she was on it every minute. She went off it at meals and during showers and changing clothes, and even while I would take her to the doctor in my car. So even if you were on one, it would not necessarily mean you could not unhook from time to time.

[Bethers]

A gentleman I know has been on oxygen therapy and full-time for years. He has emphysema. I'm sure you're not at the stages he is. So, yes, it is very doable. He's even had oxygen tanks picked up and delivered in some of the strangest places - and they come to him. He doesn't need to be on it all the time - so picks and chooses - and can do this while boondocking also. Or traveling in the car - so while I'm not knowledgeable, I know it isn't always hooked up to electric.

Don't panic - cuz you can do this if it's necessary - and they have so many easier ways to travel with oxygen now.

And I'm so, so sorry you ended up in the hospital. Glad you are out. And will keep you in my thoughts and prayers for your recovery.

[ellenw]

Thanks, friends. My hopefulness feeds off of yours! Soos, yes, I'm on Advair diskus 2/day, Combivent 4/day and albuterol as needed. I hadn't needed the Albuterol rescue inhaler in a couple of years, but on Tuesday and Wednesday I was using it every 3-4 hours. It was as if I was continuously hyperventilating because I just couldn't gulp in air fast enough.

The pulmonologist is my asthma specialist. The appointment on Thursday is my routine 6-month checkup, so I have a lot to fill him in on.

And the Lincare guy said they can even deliver tanks and loaner concentrators to state parks so they'll be waiting for me when I get there! That seems amazing! My 4 adult kids, 2 grandsons and I have planned a special Weekend with Mom (5th annual! ) camping together at Dash Point State Park near Federal Way, Washington. I'm trying to sort out how to make that work.

But as you've each reminded me, I may not even have to worry about it. Too soon to tell. Thanks, Beth, for telling me about the man who full-times on oxygen. And Judy, you're right about not being on it all the time. The respiratory therapist said "when exerting myself." Problem is, I needed it just around the apartment -- making my bed, doing laundry, even cooking breakfast and putting away the dishes. I'm going to my office in the morning with some tanks. We'll see how that goes. My job is fairly sedentary, but it involves a lot of talking on the phone.

[judi]

So sorry you were in the hospital - that's never fun! You mentioned that it is your own fault because you smoked, but don't beat yourself up. You quit and that's probably a difficult thing to do. I hope you get better very soon!

[BirdbyBird]

We will be thinking of you and sending karma for a strong healing outcome! When we were in Dale Hollow in May, I watch a gentleman pull away from the dock in his fancy little motor boat...complete with his oxygen cannula....

[grammynmaggie]

Wishing you wellness...getting over this bout...
I am sure it will work out for you...donna

[Pooker]

Sorry to hear about your breathing problems, Ellen. My first hand knowledge comes from my Dad who was a dyed in the wool, no nonsense, no luxuries camper. He eventually was on oxygen 24/7 - long hose snaking through the house, etc. He had a truck camper. When it got too hard for him to climb in and out, up and down, he had to change is routines.

We hunted for a van camper that would be closer to the ground and had room behind the driver's seat for his tanks. With his supervision and a lot of help, the van we found was retrofitted to fit his needs. He couldn't take as much "stuff" as he used to, and he learned how to deal with parks that had electricity. He preferred to rough it and he had many friendly jabs at "people who need their electric coffee pots and call it camping".

I'm not saying the transition was easy. I'm sure it was hard for him to realize that he just couldn't travel the same way he loved. However, as each new difficulty arose, a little brainstorming with friends and family usually resulted in some sort of solution.

As we age and develop physical problems it seems we have to reluctantly give up one thing after another. None of us can do the things we used to do 30 years ago, or even 10 years ago. So, we adapt. Hope your fears of being tethered to the oxygen are temporary and your doctor will hit on a routine that works for you for awhile longer. But if not, keep trying to adapt.

Pooker

[sharon]

As Evie said, you'll learn to do whatever it takes to continue to do what you want to do. As in "Where there's a will, there's a way". Good luck and hoping for good news from the doc..

[havingfunnow]

I'm so sorry you've been so sick! I think not being able to get enough air is one of the most terrifying things that can happen. The brain goes into panic mode (and why shouldn't it?).

Do remember that you had a lot of different problems converging. Probably when the cold/bronchitis is gone and the asthma has eased off, things will be much better. Even if you need to continue on oxygen, you will find a way to RV. (Isn't Pooker's father amazing?)

I'll keep my fingers crossed for you on Thursday.

[Olive600]

Ellen, so sorry to hear that you've been sick but very glad that you shared it here. You'll work it out, and you won't be doing it alone. What a loving group of women you have here.

Nikki

[Sandersmr]

Mom has pulmonary hypertension and must use oxygen when exerting herself and when flying. She recently bought her own concentrator, one that is approved by the airlines, and can go up to about 8 hours as needed on a charge. She doesn't have to mess with the tanks. While not trying to RV solo, we did just complete a 2 week car trip. Her concentrator is fairly small and portable and she can do a lot with it - although I can see loading an RV would be more difficult.

But, and this is a big but, if you find you need O2, there are ways to work around it and incorporate it in your life so that you can still do the things you want to do. You just may have to think things through a little differently.

[mitch5252]

..
Boy, Ellen, I have nothing to add about the technical aspects of this, but I'll for sure pray for a good outcome where oxygen is not needed!!
..

[ellenw]

Thanks, everyone. I have new reason to hope - I think my breathing improved overnight. It's as if a whole lobe opened up or something. All your encouragement has been great -- I CAN do this! Still short of breath, but not gasping any longer. I'm on intermittent O2 here in my office today.