Re: Other

[Guest guest]

Bob,

Congratulations on staying stable!! That's always welcome news.

It sounds as though you have a terrific oxygen supplier. It just goes to show it pays to look around and see what suppliers are in your area and what they can offer you in the way of services and equipment.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Thu, January 28, 2010 10:23:02 PMSubject: Re: Other

Hi All,

I have been reading about many of you having trouble with O2 providers. I have been extremely lucky. The day I was diagnosed, a O2 supplier came to the house and gave me the old green tanks, a huge old concentrator, and a big green emergency tank for the garage. I didn't know any better so I lived with that for about a month.

Once I heard about other systems, I called to ask the supplier about them. They told me to stick to what they had given me its the best. I asked for a home-fill system and they said they didn't recommend it and it wasn't available. When I asked for a POC for travel they said I could get one but I'd have to call two weeks in advance and if they had one available, I could use it for $150 a week, but, they didn't always have one available.

So, I called another local supplier (Airway Oxygen) and they told me I could have home-fill anything I needed, so I switched Companies and couldn't be happier.

I got liquid O2 with a small stroller Helios, and a larger (back pack) marathon, a large reservoir and a small (20 liter) travel reservoir for short trips, and a large concentrator for home use. Plus, when I went on vacation they gave me a Sequal Ecipse (portable oxygen concentrator) and five batteries for two weeks at no charge. Its a local company (Airway Oxygen) with about ten branches in Michigan.

I'm going on a cruise again in March and they will supply a portable 50 liter reservoir to use on that trip and make arrangements to have it filled in Florida. I'll have to pay to have it filled by another suppler in Florida but, Oh well........ .....

I went to my Pulmonologist today, after having a PFT on the 14th. I saw Dr The PFT was basically the same as my April 2009 PFT. My DLCO aprox the same as before.Woo Woo! I'm happy. So far so good. We talked about alternatives and choices, going to MSU for another opinion etc. and decided to continue as is for another six months unless something changes between now and then. I don't think it would pay to get another opinion if I wasn't going to do any thing about it.

Bob, 70, IPF 1/09, 5 Bypasses 7/01

From: Dyane Billings <dyanebillings@ yahoo.com>Subject: OtherTo: Breathe-Support@ yahoogroups. comDate: Thursday, January 28, 2010, 11:01 AM

Stefani,I as so sorry to hear about all the bull...... I must be really blessed as I generally can just call my o2 supplier and tell them what I need. Once they got over the fact that I REALLY need more than 8 liters to walk and that there is not a co2 problem is wasn't so bad. They are a local small company which makes it easier to deal with them. Of course we are still having a problem with getting the extra concentrator paid for but I have gotten used to doing their jobs too. You can no longer trust A to get to B and fix C. Sad but what ya gonna do. Conservers don't work much over 6lpm real well. I now have a double E tank hauler so I always have a fresh tank to switch to. Twice as heavy though and I will never get rid of the tendonitis in my right elbow dragging that

thing around but oh twell

Dyane, 54, Phoenix, IIP 02 now NSIP 09, Breast Cancer, Psoriasis, Lipodermatosclerosi s, Diabetes, and now a RA like autoimmune component, yadda yadda yadda."Life is not a journey to the grave with intentions of arriving is a pretty, well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, chocolate in one hand, Margaritas in the other, loudly proclaiming "Holy **** What a ride!"."

[Guest guest]

Bob,

What great news that you appear to be stable.......keep up the good work and how wonderful that you are going on a cruise in March!

Patti Indianapolis PF 2007

[Guest guest]

That is wonderful news Bob. Keep truckin. Enjoy that cruise.----- "Patti" wrote:

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Bob,

What great news that you appear to be stable.......keep up the good work and how wonderful that you are going on a cruise in March!

Patti Indianapolis PF 2007

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