The HeliOS Project is now.....

The HeliOS Project is now.....
Same mission, same folks...just a different name

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Sunday, June 12, 2011

When "minor" and "devestating" are used in the same sentence.

addendum:  Since we cannot find a single physical therapy place to take on Diane's treatment, (the cheapest we've found is 600 dollars a day) I've found a place that will teach me in-home physical therapy specifically for stroke victims.  The course costs $2500.00.  I was able to make the down payment of $500.00 and we will go from there.  Thanks to everyone who has helped us in this trying time. - Ken

I've had my share of health issues but I've never dealt with a stroke victim.

Until my partner suffered one.

Last week during the morning while watching TV on the couch, Diane felt an immediate need to lay down.  Once she did, she experienced an excruciating pain on the left side of her head.  When she became dizzy and nauseous, she tried to get up and go to the bathroom.

Her legs completely failed her.  She displaced her hip when she fell.

She had to crawl using her right arm and leg....her left side was useless. 

 She made it to the bedroom and was able to pull the phone off the desk and she called me at the shop.  I couldn't understand anything she said.  It was like she was talking with a mouth full of dry bread.

I knew immediately what happened. 

Her son Adam was able to get 911 notified and an ambulance on the way to our house and they were securing her to the transport when I arrived.

CT and MRI scans revealed an aneurysm at the bottom of the brain stem...an inoperable aneurysm.  The exact same location and situation that killed her mother.  The slight tear in the artery was what caused the stroke.

They called it a minor stroke...but the results were devastating.

 However they found that both arteries feeding the brain stem were either partially or almost fully blocked and the decision was made to place stents into those arteries and restore flow to that part of the brain.  Some of the tissue was already dead from lack of blood flow and oxygen.

The stents were the main plan of attack...

Until they found she was uninsured.

Diane is 64 and took Social Security retirement at 62 so she lives on 1200.00 a month.  There is a no-man's land of 3-4 years where she is not eligible for Medicare so she's just been hoping for the best and that her luck would hold.

It didn't.

So now instead of surgically placing the stents, the plan is to "passively" treat her condition.  Blood pressure meds, blood thinners....  The doctor said with any luck, those treatments would relieve the pressure that caused the weakening of the arterial wall.

Luck. 

We went from a good surgical solution to luck.

Because she does not have insurance.

So her son Adam and I are contacting various hospitals that do take on "charity" work.  So far, we've found some promising possibilities at Seton Hospital in Round Rock.

Not to be confused with Round Rock Hospital where "Luck" is considered a viable treatment plan.

She'll still need specialized in-home care.  Adam's twin sister is coming down from Portland to spend a few weeks.  She'll sleep on the couch and since she does from-home tech support for a living, I will set up a VPN for her so she doesn't have to lose any work time.

I am considering going back to work...I'm just not seeing any other way to help.  The HeliOS Project may have to sit idle for some time.  We have set up a fund for Diane's immediate and considerable medication needs as well as her physical therapy.  She will have to learn to walk again or at least regain the strength in her legs so that she can.  If you are interested in helping, you can do so through a paypal account we've set up.  The paypal email address is dianekfranklin at hotmail dott komm

Diane has been an important part of The HeliOS Project for a year now.  Not only has she organized our planning and logistics, she almost single-handedly did all the cleaning and prep work to get our new facility ready for the public.

I feel a lot of guilt in my quiet moments...thinking I let her work too hard, not knowing the results that would occur.

If you are prayerful, we would appreciate it.  If not, just send your positive thoughts this way.  We're going to get through this.

I'm going to see to it.

Ken

28 comments:

Azerthoth said...

Prayers and positive thoughts sent her way.

santam said...

Really sorry to know about this. Its perhaps more shocking as I had seen her online yesterday on facebook and thought of talking to her as the a small sum I had sent your way was returned back. I have transferred some more funds to paypal and would be sending them across as soon as I get them in my account. My wishes and thoughts are with you at this time.

Blog of helios said...

Santam, thank you.

Email me to make sure you have the right paypal email addy...that may be why it bounced last time.

You can just hit the contact us link at the top left of this blog.

Again, thank you.

Anonymous said...

Ken,
My thoughts and well wishes are with you and Diane. She needs your support and strength to help her through this. I have to believe that everyone you have touched over the years is sending their love and support to you and Diane.

Gavin said...

Wow, that is quite outrageous.

Well... I will have to see if I can do anything other than just thinking about her getting better. Strokes are dangerous beasts, even more so than heart attacks. I wish it had been something other than an aneurism.

Anonymous said...

Trip to Canada?
Just a thought,
I hope things workout for you both!

Richard Meyers said...

Ken, before I say anything else, let me state that I realize most private hospitals have a board of directors and most have shareholders. They have a "quota" of charitable services they can provide and once that quota is reached, many are just out of luck.

I am guessing that's the case with Round Rock Hospital, although, no one would ever tell you that.

Don't think for a minute that their are not doctors inwardly screaming at the system for its shortcomings. I would almost bet that her doctor is ragingly pissed he cannot do that surgery.

I don't want to drag politics into this but it is hard to avoid.

No one should have a price put on their life because they do not have health insurance. Let's say that the surgery costs 50K. If they deny her surgery because of not having insurance then they have indeed put a price tag on a life. "See to it that we receive 50K in compensation or you'll probably die."

This sucks and I have sent my meager offering to the paypal address in the blog. God Bless Diane and God bless you for standing with her.

Rick

onthelabel said...

I am really sorry to hear about your partner.

I have been following your blog for years (since the LTSP company install) and have found it an invaluable source of inspiration.

It is outrageous that lack of private medical insurance should prevent anyone from being treated.

My wishes and thoughts are with both of you at this time.

Anonymous said...

Ken, it's not your fault. This would have happened regardless of how hard she had or had not worked in the past few days. Other key factors such as diet, smoking and blood pressure would surely play a part in making this happen but rest assured, her physical activity did not bring this on.

Don't beat yourself up over this friend. Just do what you do best. Nurture her back to health. Many of us already know you as the kind and loving man you are.

NiteStar / PCF said...

Ken,

So very sorry to hear about Diane's (and your) health issues. I will definitely send healing & positive energies & thoughts her way.

Some things you should know:

Diane becomes eligible for Medicare the month before she turns 65. She should contact the Social Security Administration a few months before this time to ensure she's properly set up.

Diane should not try to go back to work right now, even from home. What she should do is go to her local department of social services and apply for Medicaid. As a stroke victim, she just might qualify (even though her social security income puts her above limits, some states provide for special circumstances when health issues are involved such as strokes). She could then get medical, rehab, and home health care services to help in her recovery.

I've been disabled and dealing with Medicare/Social Security for nearly a decade now. It will be quite the rude awakening when my classmates and friends reach retirement aid in a few decades and have to start dealing with this crap, too.

Best of luck to you both. And I'll get those positive vibes heading your way.

Jack said...

I am truly sorry for Diane's illness and the consequences the both of you are suffering. Hopefully Diane will receive proper training to neutralize the inflictet injury. All the best.

The US medical system is really a mystery to me. If you were living in Scandinavia like me, medical treatment would have been virtually 100% free.

The emergency is covered, recovery in hospital is covered and medication is covered while at hospital. When out of the hospital medication is covered as soon as it exceeds abt USD 200 a year.

Training like fysiotherapy and logoped is covered. Free training and recovery is widely regarded as very good economy for the society as it reduces long term care and returns a high number of recovering patients into a productive life. Not to mention the personal benefit of good health.

US healthcare is severely limited, and the funny thing is that it costs far far more than the scandinavian model.

The higher cost in USA is interesting because the average income per capita is far higher in Scandinavia whereas the polulation density is far lower which should have indicated lower efficiency thus higher costs.

Health and treatment is a part of our civil rights. FOSS and scandinavian healthcare principles share a lot of common ground.

isaac said...

Dear Ken,

Here is a link to Medicaid applications by state.

http://www.money-zine.com/Financial-Planning/Buying-Insurance/Medicaid-Application-by-State

Sorry for the "money zine" reference. It is the only page that I could find that had up to date information on it. God bless you and yours in this time of great trial.

P.S. You also need to take care of _yourself_ during this time. Or else your medical problems might come back too.

Caitlyn said...

Ken, my heart goes out to you and to Diane. I hope you find someplace that will give her the proper care that she needs. I hope she recovers fully and quickly.

I could write a long rant about living in the only western industrialized nation that doesn't have a national healthcare plan or guarantee heath care to their citizens. It's a national disgrace yet most Americans fail to see it that way.

You will both be in my thoughts.

Paul said...

If my comments are inappropriate feel free to delete them, that being said I agree with Richard Myers and Caitlyn. I wish we Americans would abandon the labels of conservative, liberal, and moderate long enough to get our priorities straight. We act as if our glory days are past, we have accomplished so much in this country and can still do so much more. There is no reason for anyone to do without health care, education, and opportunity. It's a matter of doing what is right. We can solve deficits,provide health care and many other issues that are so often turned into nothing more than empty political talk. Should we be Americans United in making a better country, or divided by the "hot political issue of the day?"

tracyanne said...

Stay calm focused Ken, and look after yourself, she will need everything you can give in the comming months.

Caitlyn said...

I have written about the situation Diane finds herself in for O'Reilly Broadcast at: http://broadcast.oreilly.com/2011/06/helios-project-director-felled.html This is pretty much a straight news story though it does include information on how members of the Linux community and others can donate to Diane's care.

I had to write it this way because the LXer.com TOS doesn't permit fundraising items to be posted and, at least so far, the site owner is unwilling to make an exception. I wrote a separate piece that really is a fundraising appeal which will appear later today on my blog and possibly on O'Reilly as well.

I'm doing all I can to spread the word. My business is in a down period (lost two major customers) but as soon as a check or two come in I will also send along a financial contribution.

If you read this and have a blog connected with the Linux community or any other blog where sharing the pieces I've written or if you prefer, simply asking folks to help, I encourage you to do so.

I'll leave my politics out of this for the moment. I'll write from that perspective after I've done all I can to insure Diane's needs are met.

Blog of helios said...

Caitlyn, thank you. I told Diane of this and she is humbled, tearful and grateful.

Thank you so much for your help.

Ken

Anonymous said...

You both will be in my prayers!

Caitlyn said...

Thanks, Ken, but what I've done isn't nearly enough. We keep talking about the "Linux community" but a real community takes care of one of it's own. I'm beginning to believe there is no such thing as a Linux community.

The major Linux portals all failed to pick up what I wrote for O'Reilly so instead of getting the word out wholesale to the "community" at large I'm having to do it retail. I wrote a much longer, much more personal, and much more impassioned piece in my blog at http://ever-increasing-entropy.blogspot.com/2011/06/its-time-for-linux-community-to-rally.html

I've managed to post the O'Reilly piece to the Linux Community group on LinkedIn which accepted it. O'Reilly has put it on their Linux news page. (Thank you!) I've posted links to both pieces in a comment on DistroWatch and Ladislav didn't moderate it out. (Thank you!) A friend of mine is putting it on her Facebook page and doing what she can to get the word out. Sadly this is all small potatoes compared to what the Linux portals could and should do. They seem to forget they are part of the community in a very different way than IBM or Red Hat.

Anyway, at least LinuxToday ran your original blog post. That will drive more traffic here.

I'm a more than a bit disappointed but I am not giving up. It may take a bit longer and more work but with a little help we will get the word out and get Diane the help and medical care she needs.

Folks, if you are reading this please also write about it. I don't care if it's in a blog, a community forum (whether for Linux or Austin or whatever), a Facebook page... It really doesn't matter where. If we get enough people who care about the work Ken and Diane do to give just a little we can make all the difference in the world.

Greg P said...

Speaking not only as a Linux user but also as a neurologist.

The neurologic problem here is uncommon, but part of what we deal with from time to time. Doctors don't like it anymore than anyone else that decisions about care come down to some financial factor. It's easy enough for me to accept that I might not be paid for some service, but in some institution there are bigger overriding issues.

I would add that in some particular circumstances stents might seem a good idea, yet be unproven and something that can be done in desperation but not knowing whether they will help.

This is part of why people need to care about health care reform. I don't suggest that this is an all-encompassing endorsement of the particular health care reform legislation already passed, but only that, as a physician, I think it is wrong that there is no way that we cannot ensure that everyone in this country cannot be entitled to health care.
So ask these anti-Obamacare people how they would propose helping Diane or someone in her same situation.

Ron Schreiner said...

Ken,

man...what can I say? Everything others have already said. get her on Medicade, SSI/Disability, and maybe even get a pro bono lawyer involved who deals with Social Security, etc. It is a sad situation. Do take care of yourself as well as her too. I have emailed everyone I know, and if I were near you, I'd be by your side doing chores, laundry, grocery shopping, whatever you need.

As was noted, politics are involved with the government, stockholders, insurance companies, et al; but don't let this deter you. In this nation, this should never happen, and yet sadly as we have seen, it does all too often ocurr.

Be positive, Take action steps. Do everything you do out of divine and pure Love.

be well.

Brad said...

New treatment:

http://www.cbsnews.com/8301-504763_162-20071070-10391704.html

Dale Wilcox said...

It is with great pleasure that I offer up prayers through the blood of my Lord and Savior Jesus Christ.

I also face the same issue as I lost my job a year ago doing desktop and network support.

Dale

CW said...

So sorry to hear of this. Didn't see the paypal link, but found the credit card donation link, so a bit came your way.

Anonymous said...

Hi Ken You have my prayers an positive thoughts! Though I am on a small fixed income, I have sent a small donation. The healt care situation in this country is deplorable, and will not get any better until the health insurance racketeers are eliminated!

Take care!

Blog of helios said...

Thank you very much. We appreciate it more than you know.

ken

L J Laubenheimer said...

Ken, I had a gran mal seizure, then had an AVM blow out, on the operating table (fortunately) and had a major stroke at the age of 33. It's after that that I changed careers to systems administration. I now type with one hand, and walk with a limp.

I'm one of the lucky ones - I was insured, I got care and months of PT. A friend of a friend, the same age, didn't have insurance, and ended up worse off.

Whatever you do, get her to use her brain. I was so bored in the hospital I begged for something to read. It took me several *days* to get through that first book - seeing double, having to re-read every paragraph multiple times to get it to "stick" - but I kept at it. I give that mental stimulation credit for why I'm able to work now.

Get her a laptop, let her surf the web, read email at her own pace. Let her see that there are other people out there. At first typing will be slow, and have lots of word problems, but a spelling checker covers a multitude of sins. Asynchronous media like forums and email work really well, since she can refine what she writes, and there's no "time limit".

Physical therapy is frustrating, for both the therapist and the patient, but it's worth the time to get back her independence.

I kicked a small donation toward you guys, as I'm between jobs, but I will definitely be rooting for you.

Blog of helios said...

LJ thank you. I will heed your advice as wise counsel. While I did not publicize it, Diane suffered another small stroke a few days ago but it seemingly did little to affect her.

I was able to get her out of the house tonight and actually, our next door neighbors took us to dinner. Unfortunately, this was a bit too much for her as her diet has been pretty bland up until now. I was afraid that awakening dizzy and sick was another stroke but it seems to be just an upset tummy at an inconvenient time. I am going to sit up with her tonight and monitor her sleep just to make sure.

Again LJ, thank you. I appreciate it more than you know