We got a call this morning from the Booth Gardner Parkinson Center in the Seattle area. They are the folks we are asking to see for a comprehensive diagnosis and treatment plan for Beth. It’s the treatment plan we’re really after because even though we have all kinds of diagnoses from various specialists no one is willing to prescribe treatment. For example, it has been confirmed that Beth has peripheral neuropathy, anaemia, seizures and some sort of autoimmune disease.
So the phone call this morning was to open a patient file for Beth. They had received the test results from the GP (with the exception of the MRI’s) and the next step was to have the specialist review the tests and let us know whether any other tests needed to be done before we went down for the consult. My next step is to get a copy of the first MRI we did last year. I have the one from this year on a disc. Just means another letter and some more waiting.
Waiting seems to be something I’ve become accustomed to. Thirty days for accessing medical records, 6-8 weeks for Blue Cross pre-approval, 2-12 months for a specialist referral.
Speaking of waiting, I wanted to give an update on the portable oxygen concentrator (POC). I need to get a quote from a local supplier for the Inogen POC and then can resubmit for pre-approval from Pacific Blue Cross. I have two quotes from the US, one from the manufacturer and one from Oxygentogo, the company we rented from in April. They are giving us a great deal (about $700 cheaper than the manufacturer) and are throwing in filters and such for free. Trouble is, with the way the Canadian dollar is dropping the total cost is creeping upwards every day. Right now it is still a good $500 cheaper than a Canadian supplier, but by the time the approval comes through, who knows.
One of our dilemmas is do we wait for a concentrator before we go to Seattle. We’d be away for 3-4 days with a lot of activity happening during those days. How many canisters of oxygen would we have to bring? And what if we run out? When we visit Cheryl, we have a lot of chilling out time, which reduces the need for oxygen. In Seattle there’s the day at the specialists and then we’d want to spend a day shopping (Beth’s clothes keep getting looser as she shrinks). Then a day travel time each way. That’s a lot of activity.
I’ll keep you posted as things progress.
Showing posts with label Screw Bronze. Show all posts
Showing posts with label Screw Bronze. Show all posts
Monday, October 13, 2008
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.
Cheers!
Linda
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.
Cheers!
Linda
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