supplemental oxygen

[IndyDave]

Hi all, I'm still kicking, just haven't been on the forum much. I'm still fighting the tachycardia and the complications. My doctor believes its pulmonary hypertension, but we have not been able to yet find a scanner that my giant chest will fit into. Went to a cardiologist earlier in the week on referal towards getting a cardio catheterization done, but he was young and totally dismissed the idea for no apparently good reason other than he didn't want to. The lead physician in that practice is very good, and my doc knows him, so he's scheduled a new appointment for me - but since that guy is on vacation, it's a couple of weeks down the road. Meanwhile, treating it as PH, my pulse is coming down bit by bit - running about 110 today, compared to the original 130ish of 2 months ago.

I saw my doc yesterday, so we could both bitch about this rookie cardio. Navigating the hallways from the waitingroom to the exam room really had me gasping for breath badly. My 02 sat was still 93%, not great, but not horrible. So just to relax me, the nurse put me on the oxygen cylinder for about 5 minutes. I felt fine within a minute. I have the same problem at home right now, I'm ok as long as I'm sitting, but getting up and going across the hall to the bathroom leaves me panting for a couple minutes. Now that I started on lasix, that's every 45 minutes for about 4-5 hours. The doc put me on the lasix because he believes it will help my breathing - it's not apparent that there's fluid in my lungs or around the heart, its just that overall I'm puffy with edema. But in the interim I keep thinking back to how nice that o2 felt.

I know of someone that repairs and sells used medical equipment, and I'm sure I could rent an o2 concentrator from him for 1-2 weeks for a pretty minimal price, if he has one. I'm just wondering about peoples experience with those? Ideally I'd like to have a a canula setup - 25' would do it, so I could use it here, or across the hall in the bedroom, or in the bathroom attached to the bedroom, just as needed. But I'd also like to be able to hook it up to the bipap at night, just to help keep my sats up. I did some recording the other night, and while my AI is still overall pretty good, my night time sats are varying, I think its whatever position I move into. Do you need to change pressures between the two uses? can you get a "switch" and be able to swap from one to the other right from the bedsidew without swapping hoses? Just thought I'd tap into the forums experience before calling around. I'd rather be completely ignorant here!

Thanks, Dave

[mtn aire]

hi D, can relate. short of breath more than ever- (my heart doc kept saying i was fine* - he recently closed practice and left the country... no call no letter to me from office argghh)=
i asked the tech who set up my machine this week- about o2. said it could be hooked up to my machine if needed- need rx 1st. was told can;t get appt with pulmo till 2 months- something about being on the machine for that time and medicare (which i dont have).
any way---- would you not need to be tested to know how much o2 and rate etc?

i hope it works out for you--- i know what u mean about the sat %--- mine when upright , not sleeping is good at room air- however i am still so short of breath and fatigued. nurse prct. says =poss its ascites (ckd rather than heart?) causing additional shortness of breath.

is there any downside to getting supplemental O2? do our lungs get 'lazy' or dependent on it ?? i still would like to have some even if just at night.

[Goofproof]

I too can relate, and could probably benefit from O2. I have about 40% heart function. I can walk or move a max of 50 feet before I am out of breath, requiring 10 minutes of rest to keep going. I was put on O2 after the quad bypass. My heart Dr. is amazed I do as well as I do.

I wonder about the long term downside of O2 use, there must be some reason the plum Dr stopped it. (my O2 was 90 when he ordered it and was 90 when he stopped it???) Now it is 92... Jim

[-tim]

If your too big to fit in the machines, there are a few scanners in the mid west that were built for research. They can't offer then to you but you can ask to use them, you can get pictures taken.

I wrote some of the software that allows MRI images to work with people who don't fit so I do know a bit about the issues and to anyone read in this.... you don't have to be to big to fit in an MRI tube to get bad pictures. It used to be that if you weren't on the nearly unhealthy skinny side, a standard MRI would record fizzy pictures.

[IndyDave]

Hi Tim, do you have any idea what facilities these research units are located at? I'm willing to travel anywhere in the midwest just to get this done at this point.

And a refinement of my oxygen question to everyone, I did some reading and product searching on the web last night, and figured most of it out. But if you do hook up supplemental oxygen, do you need to change your pap pressures any, or balance the oxygen pressure with it? When I was at the docs, the cannula at 5L/min had me feeling great in less than a minute, so that's what I'd use for those quick daily shots to overcome my panting. I'm just trying to figure out how things would change if I used it on the pap to help up my overnight saturations a little - which might make me feel better during the day. My unit has an accessory fitting which you can use to feed oxygen in - it attaches between the pap outlet and the hose. Again, this is probably a short term thing of a couple weeks.

Dave

[Slinky]

A prescription is needed to buy or rent 02 concentrators. Your family doctor, if agreeable, can write the script. Usually 2L of 02 is all that is scripted to start if you haven't had a 6 minute walk test to test your pressure need.

25 feet is a standard 02 tubing length. The 02 is usually added to CPAP w/an inexpensive adapter between the humidifier and the mask tubing.

There is no need to adjust your CPAP pressure w/the additon of 02 supplementation bled in.

[Slinky]

A prescription is needed to buy or rent 02 concentrators. Your family doctor, if agreeable, can write the script. Usually 2L of 02 is all that is scripted to start if you haven't had a 6 minute walk test to test your pressure need.

25 feet is a standard 02 tubing length. The 02 is usually added to CPAP w/an inexpensive adapter between the humidifier and the mask tubing.

There is no need to adjust your CPAP pressure w/the additon of 02 supplementation bled in.

[IndyDave]

Thanks Slinky, that's what I needed to know. He wasn't sure. I see him again on Wed, and we'll see. He has another patient who refurbs and sells various bits of medical equipment, so he'll have a nurse call him first. I checked around a bit today, and most places only want to rent the portables - I dont want to have to carry something room to room, and the one that does rent the standard units charge more than you can buy a used/refurbished one for - and that's just looking online. There are a couple local ones on craigslist going fairly cheap.

[Slinky]

You're welcome. So far as I know the standard concentrators come in 3L and 5L models and are CONSIDERABLY cheaper online than local. Standard practice w/the local DME providers and insurance is rental of the concentrators which you never get ownership of, plus 2-4 E size tanks for emergencies and as many B tanks w/a regulator as needed for when you go "out and about" if the script is for 24 x 7. Insurances usually will NOT pay for both standard concentrator AND portable concentrator as today's portable concentrators can be used as full time home concentrators as well as portable when out and about. The cheapest I found a portable concentrator online was about $2800.

[IndyDave]

Update - aah, that sweet, sweet oxygen!

I saw my doc again last wednesday, and by then my O2 sats were pretty dismal , even on the bipap I was seeing occasional drops, though my AI was 0, and my HI was 3. But I did notice my breath volume was down from 2 months ago. His thinking is that this is reaction to the treatment for the heart tachycardia, that my pulse is slowing, and that's causing me to breath more shallow, plus he had just put me on lasix a week prior, and he said that can cause some problems before it begins to fix them. That things are shifting on me often enough, I haven't had time to relearn how to breath.

I ordered a refurbished AirSep Newlife Elite oxygen concentrator from a place called Altra Service Professionals in FL. It only cost me $295, with free ground shipping. They were really great people, someone answered some questions I had while researching, and then i ordered and sent them my prescription when I got back from the doctor on Wed. Later that night, I got to thinking how they ship via fedex ground, and I know fedex sometimes won't leave anything marked medical equipment at your door, or allow you to sign off for them to leave it... so I emailed Altra about midnight asking if they could please sign off that it could be left at the door, since it can take me 5 -10 minutes to get there, depending. About 6:00 a.m. I got a reply from the VP saying that would be no problem, and that it sounded like I could use this right away, so he was going to put my order at the top of the list for the warehouse so it would ship the same day. Right now I can't say enough good about this company. They sell all sorts of home medical supplies, and new and a limited supply of new and refurbished concentrators and cpaps. And the customer service is just outstanding.

So it shipped out Thursday afternoon, and was actually delivered here in Indiana a couple hours ago! I figured Mon or Tue. So I'm hooked up and breathing right now, and its already easier to move around, especially those every 45 minute trips to the bathroom due to the lasix. The plan is for me to use it most of the time for a few days, then taper down until using it when I'm moving around and likely to have trouble catching my breath. I got a couple different canulas, but also a long oxygen supply line, with a connector to a short cannula, so when I go to bed I can unplug the canula and plug it into the oxygen port on my bipap.