Tuesday, September 30, 2008

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.

Donation Update

Hi folks,

I just wanted to express my appreciation again to those of you who have donated towards Beth’s medical expenses. I feel a burden lifted off my shoulders – thanks for taking some of it upon yourselves.

I am ecstatic to report that we’ve received enough donations to go to Seattle and almost enough for the portable oxygen concentrator (see today’s other blog for more info on concentrators). I was astounded to receive one donation for multiple hundreds of dollars which said ‘Get thee to Seattle, Beth.’ ‘Holy crap’ I kept saying to myself over and over again, and to Cheryl, too. It is a wonderful feeling to know that despite all the bad things going on in our lives, specifically with the medicos, that there are many people who want to help and give as they are able.

We’re waiting on some paperwork from Health Insurance BC and also some medical records and then we’ll be booking our appointment in Seattle. It’s something I’m excited about, but also anxious too. Will they be just another specialist who says it’s not their inch or don’t know what exactly it is? Will they want to do a bunch of tests – and who’s going to pay for that? What if they know exactly what it is, and they confirm that it is terminal? There are days I delude myself that Beth is going to be around a long time and that she’s not going to die. How am I going to cope with a reality that she won’t be by my side for decades? And if she is terminal, how long do they give her? And how am I going to support Beth through all of this? So many questions and fears…

Cheryl is going to come with which is great. She’s been a real support for both Beth and I. And I know Beth’s readers will also be there in spirit. And rest assured, you’ll all be hearing about it on our blogs.

Friday, September 26, 2008

The Memory Challenge

Hi, Cheryl here…

I want to start by saying a huge thank you to everyone for all your support. This blogosphere family is made up of incredibly special people. Every week I bring the mail to Beth and watch the joy she gets from each postcard or letter she receives in response to those she’s sent. She delights in the emails she receives. In Beth’s world now she has limited connections with others so each time one of you makes the effort to connect via blog comments, emails, postcards, letters, or gifts it means a great deal.

With Beth’s changing memory Linda and I had discussed a potential new challenge for all of you. We want to make some memory books to help Beth when she is having trouble remembering.

What we would like from you is a picture of yourself, the moniker Beth knows you by (for example: Yanub) and a little bit about yourself. Feel free to add any messages to Beth you want to share. You can decorate/embellish the page and email them to Linda at Linda.McClung at shaw.ca or mail it to the Port Angeles, WA post office box. Email Linda if you need the address.

So have fun with it. Play dress up, unleash your inner or outer artist/writer, and create. Given the fun weekend challenge response I think you will all do great with this challenge as well.

Wednesday, September 24, 2008

Wheels, Wings and My Thanks

First off, I wanted to say thanks to everyone who has visited this blog – whether just to take a ‘look see’ or to make a donation. Thanks for caring about me and Beth. Already I feel less alone and the burden lighter.


Good news arrived in the mail – Beth’s new power wheelchair has been pre-approved by Pacific Blue Cross. What’s even better news is that Blue Cross says the full amount is eligible ($17,000+). We also have Triumph willing to kick in up to $4,000 for the tilt portion of the chair so we’re more than covered. Whew! Our physiotherapist at Queen Alexandra said she’d put in the claim and I didn’t think she’d have much success because Blue Cross generally only pays for a wheelchair once every 5 years. We bought the manual less than 2 years ago. But Janet, the PT, is very good at what she does. She said because of Beth’s deteriorating condition that Blue Cross would approve it. And she was right! So now we have to have another meeting to reconfirm the wheelchair components and then get it ordered.

And then I have a few weeks to make some space in the study so Beth can maneuver around better with the chair when it arrives. There’s always more to do, sigh… but it’s worth it. When Beth has an aura before her seizure she can tilt the chair back and between the tilt and the wide seat belt she will be safe and secure in the chair during seizures. The chair will also have interchangeable head rests – a small one for going outdoors and a larger one for indoors which cradles her head on the side. The larger one, because of its width, isn’t suitable outdoors as it blocks too much in her field of vision. At some point, I’ll also look into getting a portable ramp so that the chair can go into the van. There’s no chance I’ll be able to lift it! That’s one of the great things about the manual chair is its light weight makes it easy to put in the van without disassembling it.


In Beth’s blog yesterday, she showed pictures of the shirts Laura made for Beth’s pit crew (me and Cheryl) to wear to the races. Several have asked how to purchase the item and Laura has responded. She’s set up a website,
Of Wheels and Wings, where you can email her if you are interested in purchasing a shirt. She needs a minimum order of 20 shirts in order to make it cost effective. These shirts garnered some attention at the race – I know Cheryl had a few people ask about hers. And, being yellow, it was easy for me to spot Cheryl a kilometre away. Laura tells me it’s possible to change the colour to something less bright, but I think you’ll need to give her your suggestions for the colour. Thanks Laura for your creative gift.

Tuesday, September 23, 2008

Why a Girl's Gotta Fly?

My partner Elizabeth McClung at Screw Bronze has been battling Multiple System Atrophy (unofficial diagnosis) since December 2006. She has been writing about her experiences, frustrations and joys and many of her readers have been supporting her emotionally for which I am very grateful. She has been asked several times whether the readers can help in other ways.

This blog is in response to 'how can we help?'

As ideas arise (and feel free to send me yours!) I'll post them here. I'll also give you updates on how things are going whether it be Beth's health, the medical bureaucracy or just coping day to day.

Financially speaking, we have a two large medical expenses coming up - a portable oxygen concentrator and a trip to Seattle for a consult.

Since April 2007 Beth has been using oxygen in canisters. When she started, her oxygen saturation levels were above the threshold to get free oxygen, so we've been paying for oxygen canisters and the rental of the regulator which fits on the canisters. At first she only needed oxygen an hour or two a week, but as time has passed the need has increased to 3-6 hours a day. Even with Pacific Blue Cross paying the majority of the cost, it adds up. We got a break this spring when someone from the Canadian Red Cross came by to deliver some loaner equipment. Beth got to talking with him and he said it looked like she needed an oxygen concentrator and he'll bring one over. The CRC doesn't loan concentrators - he just wanted to give it away. It's a huge, loud, heat generating beast, about 20 years old, but has been a real life saver for Beth and a cost saver for me. We keep it in the living room and have a 50 foot hose that reaches the study and the bedroom so she can wear it wherever she goes indoors.

We still need the canisters though - as late at night I'm afraid the concentrator will wake the neighbours. We use a large canister for nights. And we need the wine bottle size canisters for when Beth goes outdoors. She can carry one canister in the pouch under her chair and it will give her about 40 minutes of oxygen. Needless to say, she can't go far or be out long unless she has multiple canisters. This means our weekend trips to visit our adopted sister Cheryl involve me carrying one large and 3 small canisters in my hiking pack.

When planning for our Japan trip this spring, getting oxygen was one of my greatest challenges. We ended up renting a portable oxygen concentrator and it was WONDERFUL. It was small enough to fit in the backpack on Beth's wheelchair, was quiet, and with 2 batteries lasted about 6 hours. We'd recharge it each night and we were always with oxygen no matter where we went.

We want to buy a portable oxygen concentrator and use it all the time - indoors and out. We've got pre-approval from Pacific Blue Cross to pay about 75% of the cost. We just need to come up with the rest. The unit we want is an
EverGo by Phillips Respironics as it has some of the longest battery life, is one of the smallest units and can be taken on board flights - it we ever manage another vacation which involves an airline.

Our second major expense coming up is a visit to the
Booth Gardner Parkinson Center in Seattle for a consult. We anticipate around $1000 for the trip, not including any medical tests. Our GP has agreed to fill out a referral to Health Insurance BC as they may fund the actual consult. Fingers crossed! The Centre specializes in Movement Disorders and Multiple System Atrophy, what we suspect Beth has, is one of the diseases they have experience with.

Several readers have asked how they could donate to these expenses so I've added a paypal link to the right. It's very easy to use - you need an email address and either a credit card or paypal account. You may also add special instructions if you want to specify what you’d like your donation used for and I’ll do my best to honour that request.

I want to say again, how much I appreciate the support you have given both of us. Thanks so much for caring – it’s so badly needed when you’ve been the human ping pong ball in the medical system.