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.
Showing posts with label portable oxygen concentrator. Show all posts
Showing posts with label portable oxygen concentrator. Show all posts
Tuesday, October 14, 2008
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.
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.
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.
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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