Monday, October 13, 2008

A Call from Seattle

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.

4 comments:

yanub said...

Oh, get the concentrator. Don't wait for approval. You can get re-imbursed afterward, can't you? And if it doesn't get approved, this is still the concentrator Beth needs, and the one you'd get. So get it.

I'm delighted to learn that a patient file is now open for Beth and that soon she will actually be seen by someone who is not simply unfraid of difficult cases but stimulated to puzzle them out.

cheryl g said...

I am so glad things are moving forward. I do agree that we either need the portable concentrator or to make arrangements to have a place in Seattle where we can get more oxygen.

I hope the Blue Cross bureaucracy moves quickly so the POC can be ordered soon.

Neil said...

Thanks, Yanub, I as thinking the same thing; get the concentrator now, when BETH needs it, and dal with payments later, when necessary.

Hurrah that Seattle is starting to ry to help!

Thank you for the update, Linda. Oh, give Beth a hug and a kiss from me, please? I do wish, though, that I could deliver them in person...

Hugs to you both, and Cheryl too,
Neil

Donimo said...

I've been away awhile because of being flooded out of my house. I'm back online and trying to catch up a bit.Very good news about Seattle. You're such an amazing partner and ally, Linda.