Jun

02

Posted by : admin | On : June 2, 2013

The following guest post was written by Lisanne St Onge Klute, a courageous women, who, in the face of a dire medical prognosis, chose to become an empowered patient and, with the help of social media, found the best possible treatment. It is a story of the power of social healthcare and the importance becoming an informed e-Patient as well as sharing one’s story.

In May of last year, I found out I had a Cavernous Malformation in the brainstem and it was bleeding, slowly disabling me. I was told by numerous neurosurgeons that it was inoperable. I went online right away and looked for support. I came across a support group where I met so many kind people, but nobody with the same condition as me, in the same location. I did learn from them to become pro-active in my health, to do more research.

One thing led to another and as my health was deteriorating and I felt myself literally hanging by a thread, I was desperately feeling alone. I had found stories of people who have had the surgery that would save my life, but they had lost all quality of life. In the meantime, one of my friends had found Dr. Robert Spetzler as one of if not the best neurosurgeons in the country, who is not afraid of operating in the brainstem. I sent him my MRI scans and he called back with a surgery offer. I was not expecting that. It was a very hard decision because to have the surgery, or not to have it, he could not tell me that one choice was better than the other. It was a damned if you do damned if you don’t. To not have the surgery meant that I could die or become severely disabled any day, and to have it meant that it would most likely save my life, but I would have deficits and a strong chance of being disabled now.

I needed more than ever to find someone, if only one person, that had been through this surgery. I kept searching, I kept not finding… but one night, I typed in Google a series of words I have not before. I don’t remember exactly what order of words I used, but it was something like “successful brainstem cavernous malformation surgery.” I stumbled on Akiva’s story (AKA iPatchman), I went back to his first post and discovered he had surgery in the same location of the brain as me! Not only that, but he also had Dr. Spetzler!! I was happily shocked when he shared that he was recovering and seemed to have a pretty normal quality of life. I sent a message to his iPatchman Facebook Page to both ask about his surgery/recovery, and to ask about Dr.Spetzler.

Before I even got his response, to make a long story short, I ended up in the hospital after having a worse bleed than the ones before. I now knew for sure that I needed the surgery, even if I had already decided it was best as a mother to ensure that I was going to be alive for my children, even if that meant i was going to be disabled. I was in the hospital when Akiva got my message and answered. He right away offered to call and I was amazed at the timing. I don’t think he knew at the time how desperate for answers I was. He was such an encouragement not only to me, but to my husband, and friends. Talking to him and hearing what he had to say gave me a lot of peace about my decision, and the fact that he had the same surgeon as me was just phenomenal to me. It really gave me so much hope at a time that I was made to believe I was going to either die or become a vegetable in the next week or so. He had had successful brainstem surgery and was ok, and it gave me more hope in one day than I have had in a year. It’s a beautiful thing.

Since then, I had the surgery, and I am still recovering, but I can walk, and I may not be able to work yet, but I know some day I will. I might go back to school. I have life goals and plans again. To have had a second chance like this was a feeling that I knew few people get. I also was contacted by 3 different young women that, like me, were desperately looking for someone. I know that reading the iPatchman blog encouraged them too. By letting me reach out to him, iPatchman made it possible for others to reach out as well, and it is amazing how many more people with “inoperable” cavernous malformation I know now, while I was all alone at first. Recently, Akiva told me, “Sometimes I feel like the reason we got so lucky, and were saved in the first place, is to help others,” and he is right. I truly admire that he went through this at a time when he was alone and came out so strong and positive, but by him sharing his journey, he made it so others are not going to be alone. It is like building an army. An army of fighters.

Follow Lisanne’s story on her Facebook Page: That Brain Fart. If you know anyone that was affected by a brain tumor  or a cavernous malformation please share this with them. 

 

Share

Jun

06

Posted by : admin | On : June 6, 2012

May was Brain Tumor Awareness Month and I was very busy spreading awareness.  On May 3rd, we held our 4th Annual CBTF Young Professionals Group Bowl-a-Thon fundraiser. Thanks to over 100 volunteers and fundraisers we raised over $44,000 for the Children’s Brain Tumor Foundation. The funds were put directly to good use to send young adult & teen survivors to Camp Make-a-Dream in Montana. A week later, on May 16th, CBTF held its 10th Annual Dream & Promise Awards Benefit Gala. As a board member of CBTF, it was a great honor to see so many people who were passionate about this important cause come together for this great fundraiser. Once again, CBTF raised around $1,000,000 to support our mission to improve the treatment, quality of life and the long term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors.

On May 19th I was invited by fellow brain tumor survivor/hero, Rick Franzo, as guest speaker at Catch the Brain Wave Brain Tumor Awareness fundraiser in the Poconos. You can see my full speech below:

 

 

Share

Mar

15

Posted by : admin | On : March 15, 2012

Definition of Ironic: My health plan hired a third-party administrator to collect medical records from a provider for an insurance claim I made. The provider needed a signed release from me to provide MY medical records to the third-party to then provide MY medical records to my health plan. The third-party contacted me to have me sign the release form which I did and sent back to them. I asked the third-party if I can also get a copy of MY medical records that they are obtaining, with MY signed permission, to give to my health plan (always good to have copies of records). Third-party’s response: “You can ask your contact at {Health Plan} about receiving a copy of the records since we are not authorized to release records to anyone but the requestor.”

Score 10 points to inefficient illogical health insurance industry.

Share

Mar

13

Posted by : admin | On : March 13, 2012

On May 30th 2008, a dozen brain tumor experts from over six different medical centers convened in Boston to discuss one patient’s treatment options. The patient, a 76 year-old man, had been diagnosed with a Glioblastoma Multiforme brain tumor, the “most common and most aggressive malignant primary brain tumor in humans.” What was astonishing here, according to NY Times writer, Laurence Altman, was this man’s ability “to summon noted consultants to learn about the latest therapy and research findings” – despite this being the most common brain tumor that has a relatively set course of treatment.

This man was able to solicit advice that anyone else diagnosed with incurable cancer could only dream of. How did he achieve this? Well, this man was Edward Moore Kennedy, or, to his friends, “Ted.”  As the NY Times stated:the ability of a powerful patient — in this case, a scion of a legendary political family and the chairman of the Senate’s health committee” was extraordinary. This meeting led to Ted Kennedy changing his treatment plan from what Harvard’s prestigious Massachusetts General Hospital advised and opting to have surgery at Duke instead. Kennedy’s ability to seek out more opinions from the leading exports in the field is what led him to extend his life by 15 more months and live long enough to vote for the healthcare reform law he worked half his life to bring about.

When I read this article back in 2008, I was surprised to discover that I knew several of the experts that Kennedy consulted with. In fact, I too had reached out to them to get advice on my “inoperable” brain tumor in 2005. While not rich, famous or politically powerful, I was nonetheless resourceful and sought to make the most informed decision possible before starting treatment. Afterall, if one were to buy a new car, they would probably go online and read dozens of reviews about the cars they were considering. They would probably talk to different people who owned those cars and get their first-hand experience. They would then go to several dealerships and test drive the cars they liked, and, only after all that, would they buy a car. However, for some inexplicable reason, when we are faced with a dire illness and need to make a choice about saving our lives, we are expected to settle for one second opinion? Ted Kennedy did not settle for that and neither should anyone!

Around the same time, another rich and famous person was diagnosed with pancreatic cancer and wanted to do everything he could to stay alive. This man had brought us the iPad and the iPhone and he had the ability to convene the “expert panel” he needed to make his decision on a treatment choice. Once again, a person’s ability to properly face a cancer diagnoses was correlated to his status in society. If Joe Schmo wanted to have a call with the same 12 experts he would be looked at like a crazy person.

Even getting access to reviews of treatments online is difficult. If you Google “iPhone 4s Reviews” you receive over 373,000 results full of reviews of the new gadget. You can find Consumer Reports, YouTube clips and experts all over the world advising you to buy or not buy. But if you Google “stereotactic radiosurgery review” you get only 2,240 hits, none of which will actually help you make your decision.  In a recent NY Times article discussing the lack of online reviews for doctors, the author quotes a spokesman for the American Medial Association as saying, “Anonymous online opinions of physicians should be taken with grain of salt and should not be a patient’s sole source of information when looking for a new physician.” The author also quotes the manger of a review site saying that doctors have told her that “patients aren’t smart enough to figure out whether I’m a good doctor.” With this being the approach of the mainstream medical providers it is not hard to see why only the rich and famous can get the best possible advice from multiple sources.

This situation is simply unacceptable. Everyone and anyone should have full access to a system that allows them to make the best informed decision before consuming healthcare, especially when it is medical care that is needed to save one’s life. There are many organizations approaching the information problem, as it is goes beyond the issue of informed treatment decisions. ClearHealthCosts is trying to bring more transparency to the prices of healthcare while FairCareMD aims at allowing consumers and provider of health to agree on a fair price for treatment. And of course, Health2Social is determined to help people get to the best care they need and make the best informed decision when choosing a treatment course.

Look out for our next post, titled “The Informed Patient:  A Manifesto.” This Manifesto will list the steps and conditions that will lead to everyone having access to the same decision making support Ted Kennedy and Steve Jobs had, and, at the very least, the same that I had, which ultimately saved my life.

What do you think should be included in The Informed Patient: A Manifesto? Leave us a comment and share your voice!

Share

Mar

11

Posted by : admin | On : March 11, 2012

Check out my guest blog post on ClearHealthCosts.com! Have you ever had similar issues with billing departments? I cannot be the only brain tumor survivor with crazy billing stories. Feel free to Like and Comment on this on my wall, ClearHealthCost’s wall and on the blog. Thanks. iPatchman

Share

Mar

07

Posted by : admin | On : March 7, 2012

The following post was written by Yitzi Zablocki, Akiva’s brother, in response to a recent inspirational story about a friend and her cancer diagnoses. We welcome your comments and insights. 

A friend of mine was recently diagnosed with stage 4 stomach cancer. It is too much of an understatement to say that this woman is full of life. There is no question that her gushing personality makes her by far the life of every party. Her diagnosis was a complete shock; as if the writer of this story was getting lazy and went for the absolute cliché. Her network of friends immediately went to work to find a hopeful possibility. Calling doctors, reading websites, leaving no stone unturned. 

I am a big believer in searching outside the box. My brother was diagnosed with a brain tumor when he was in his early 20′s. He was not given much hope by top doctors, but our family took an aggressive approach to research and did not take the doctor’s conclusions as the only final options. They put their bets on radiation, but that was clear to us as an irrelevant and possibly harmful treatment. We ended up defying all the doctors he saw in New York and took him to a rare doctor in Arizona who does successful surgery on the brain stem. All the top doctors in New York predicted my brother to be dead within a couple of years – but the tumor was removed and gone forever. He is alive and well at 32 expecting his first child this summer

This whole ordeal made me question the opinions of doctors. How many people like my brother have died because of limited medical advice by experts? What if my brother did not have the community of resources to look to beyond the traditional options? He would not be with us today. My brother has now dedicated his life to giving others ability to share the resources and information that most patients do not have. 

When my friend was diagnosed with stomach cancer, recommended a similarly aggressive and hopeful approach. Doctors do not have all the answers. Often they follow medical conventions that are forever changing. Doctors see many cases and most of our medical systems are based on what is best for the majority of cases. The beauty of humanity is that each case is very individual, and this means that the solutions doctors use are not always relevant. Doctors are tools to help patients make decisions.

In my friend’s case recent case, her doctors were not hopeful either. They gave her 6 months to live. After every test, the news seemed worse and worse. Developed stomach cancer is tough, and I was not finding too much long-term hope in my basic research. All the doctors could suggest was that she try some chemotherapy to prolong her life as much as possible. 

Another close friend took ownership of this case, seeking out even more developed options and helped manage her case, while my brother advised on insurance and healthcare and connected our friend to other doctors. Ultimately, there is not much you can do – doctors see cancer, they say chemo. And when they see stage 4 cancer, they are not very hopeful.

We know that my brother’s situation was a rare tumor and an even more rare solution. But I learned from that to not take doctors words as final. Push for more options, and keep trying until you have exhausted them all. This is life we are talking about here, not an online research for a new couch. This is what it is all about, this is what we spend our time denying; at any moment this can happen to your nearest and dearest. 

Not everyone can be as lucky as my brother, even with the best research team. And when there is not much hope, we go back to our distractions, because some situations are out of our control. We focus on our jobs, our TV schedule, our travel. Things that we can control.

My friend reluctantly started her first round of chemo and we played the waiting game. Buy some time and see what comes next. Her doctors did not bring much hope when she went back for her tests after she completed the round. The plan was to try the round of chemo and see what new options and opinions can come to the table. She had already seen quite a few doctors, but it’s always good to seek out more opinions. She managed to get an appointment at another leading cancer hospital. If nothing else, it looked like this hospital was better managed and her case was in more capable hands. They set her up for more tests.

Today, she went back for some results before she started her next round of chemo. Low and behold, the results show that despite the readings from the doctors in the original hospital, her cancer is in complete remission – practically undetectable. The chemo has been proven to be more effective than anyone could have imagined. She is not out of the woods, and cancer is normally not simply cured, but no doctor, nor any case we researched, predicted this level of remission. 

This case, like my brother’s, is rare but again shows the importance of not listening to just one or two opinions. Even when things seem hopeless, the unexpected is a possibility. The irony here is that the solution did not come from some alternative option. It came from the most basic treatment. No doctor would ever tell a patient that a treatment can cure them 100%. Any doctor who is that sure of what will happen isn’t taking into account cases like my friend’s. The lucky one who performed above and beyond, and from the depths of despair, has been given her life back.

Share

Feb

14

Posted by : admin | On : February 14, 2012

Check out my new blog post on Health2Social.com on the issues facing innovation in mHealth: In Fast Company Magazine’s February issue there is article titled “As Smartphones Get Smarter, You May Get Healthier: How mHealth Can Bring Cheaper Health Care To All.” The piece, by Adam Bluestein, is a survey of thenew disruptive innovations in the mHealth market that can potentially replace large, clunky, and expensive medical devices with small, elegant, and low-cost Smartphone accessories. The article touches briefly on one of the main challenges mHealth faces as it aims to grow its chunk of the $273 billion medical device industry from its current $2 billion market share.  As mentioned in the article: “At stake is the future of health care–and a share of the $273 billion medical-device industry, which is dominated by the likes of GE and Philips.” What is obvious here is that GE and Philips will not be happy with disruption from the startups which have the potential to replace their high cost devices. One of the biggest setbacks for innovation would be if these larger companies use their millions in cash reserve to lobby Congress to create more regulations that can potentially stall the influx of these new cheaper devices. As Bluestein discusses in the article, the “clunky-looking device eye doctors use to pinpoint your prescription–weighs about 40 pounds, costs $10,000” – and can be replaced by a similar functioning $30 accessory that can attach to your iPhone.

READ MORE

 

Share

Nov

08

Posted by : admin | On : November 8, 2011

Share

Nov

21

Posted by : admin | On : November 21, 2010

Check out pictures of the 5th Annual iPatch Design Contest Winners. You can check out the posts on Facebook:

Some of my favorites this year are:

The Rite Aid Circular iPatch by Amanda Zablocki (I do live Rite Aid):

The Van Gogh iPatch by Inbal Weinberg:

And The Flying Spaghetti Monster iPatch by Shuky Ehrenberg and Adi Bar-Lev:

Thank you all for contributing!

There are many references to “iPatch” now online, both on Facebook, YouTube and other social media. Ever since the iPhone and iPad came out, iPatch has become a pop culture reference. A good example can be seen in the latest viral clip TWEET IT where they reference an iPatch:

Please do remember that I had  coined the terms iPatch and iPatchman back in December 2005, 2 years before the iPhone came out (based on the iPod if anyone remembers what that is), and I have been having these Design Contents since November 2006.

Who coined the term iPatch?

Share

Nov

02

Posted by : admin | On : November 2, 2010

Follow the link below and read what happens when A Wedding, Bar Mitzvah and Brain Surgery get mixed up in Julie Gruenbaum Fax’s Cyberstalking Akiva and the Kippah Snafu

Share