What's Taking So Long?

Cheryl here…

I thought it would be helpful to share my perspective on where we are in terms of getting Beth to Seattle and getting some of the large medical aids like the portable oxygen concentrator. Mostly we are waiting for the wheels of bureaucracy to slowly turn, very slowly turn...

We would really like to have the portable concentrator for when we go to Seattle since Beth’s oxygen use has increased a lot and carrying enough full air tanks isn’t really feasible. Linda and Beth are waiting for Blue Cross to give the go ahead for the Inogen One unit and to find out what percentage Blue Cross will cover.

As Beth pointed out the other day, we aren’t going to Seattle to get a diagnosis. She already has multiple diagnosis (orthostatic hypotension, Raynaud’s Disease, dying thyroid, anemia, unknown auto immune disease etc.). We are going seeking a comprehensive diagnosis and more importantly a treatment plan. I personally would rejoice to have some of the conditions addressed to improve Beth’s quality of life such as the extreme pain.

In preparation for the trip to see the doctor’s at the Booth-Gardner Center, Linda is getting copies of the many tests that Beth has had. That is also taking some time since it involves dealing with multiple specialist’s offices and the hospital. We are also waiting for HEALTH INSURANCE BC (HIBC) to rule on the referral request to go to Seattle. There is a precedent for the referral to be approved. It seems that British Columbia has a shortage of neurologists so the waiting lists to see specialists are really long and it can be many months to be seen. (Does any of this sound familiar?) For that reason HIBC has approved referrals to neurologists in Seattle for patients who have rapidly changing conditions. We are hoping that they agree that Beth fits that description. If we get approval then the out of pocket expenses for Beth and Linda will be less.

If the referral is denied we will still be going to Seattle, it will just require more money.

Once again, thank you all for your generosity and support. Beth and Linda couldn’t do this without you.

Getting our hopes up – portable oxygen concentrators

A couple months ago I did some research on portable oxygen concentrators. We really liked the Inogen One concentrator we used while we were in Japan so I called all the dealers in town to see who carried it and how much it would cost. All three dealers mentioned to me that the Inogen One is an inferior concentrator compared to the EverGo by Respironics. The EverGo has longer battery life and more oxygen per puff. It also stores more oxygen inside than the Inogen One. The EverGo sounded very good so I got a quote and submitted it to Pacific Blue Cross for pre-approval. They eventually, like 2 months later, approved the machine saying they’ll pay the first $4,200 and we pay the rest.

Ugh! The rest turned out to be $1,500 based on one supplier’s quote. Okay, don’t panic, I told myself. I just need to shop around. So I did, and found another local supplier that sold it for $700 less. Now that’s more reasonable, I thought.

Beth and I took a quick trip to the supplier at lunchtime today as I wanted to check the machine out, particularly the noise level, and the Oxygen Therapist wanted to see if the machine was suitable for Beth (if it could maintain her oxygen levels). Well, the OT turned on the machine and my first thought was ‘oh, oh… this machine isn’t much quieter than the honking big one we have at home.’ It was much louder than the Inogen One. The Inogen One, we used everywhere, and all I remember hearing was the puff when she breathed. I don’t remember a fan. If we had the EverGo I’d feel very conscious of the noise we were creating.

Beth also thought the noise was too much. There’s no way we could carry on a conversation with the concentrator going (it was annoying to me for the short time we had it on, imagine how much worse it was for Beth who has super-sensitive hearing). And there’s no way Beth would use it beside her for hours on end.

So, we’re back to square one with the concentrators. We want to go back to the original plan and get the Inogen One. We know it’s quiet. It also has a big handle like a curling rock and can be taken out of its carrying case. The EverGo needs to stay in its case so has all kinds of zippers and closures – which Beth pointed out would be hard for her to manipulate.

I’ve got to put a call in to Pacific Blue Cross to see whether I need to resubmit a quote and go through the approval process all over again. And then I’ve got to shop around for the best price. I want to use your donations as wisely as possible.