Healthcare Hacks

Woman gets a new windpipe with tissue grown from her own stem cells

Lynn Truong — Wed, 19 Nov 2008 15:02:31 -0500

Claudia Castillo, a 30-year old Colombian woman suffered from tuberculosis for years and needed regular hospital visits to clear her airways. After a severe collapse of her left lung, doctors thought they would have to remove the entire left lung.

Dr. Paolo Macchiarini, head of thoracic surgery at Barcelona's Hospital Clinic, proposed a windpipe transplant instead. Only a handful of windpipe transplants have ever been done, and transplants carry the risk that the body will reject the organ.

This surgery however, was the first transplant of a windpipe with tissue grown from the patient's own stem cells. Doctors took stem cells from Castillo's bone marrow to create cartilage and tissue cells to cover and line a donor's windpipe.

The procedure was done in June, and so far Castillo has shown no signs of rejection. She did not need to take any immune-suppressing drugs, which can cause side effects like high blood pressure, kidney failure and cancer. It may take up to three years to know that the windpipe's structure is solid and won't fall apart.

The results were published on The Lancet.

[Source: Doctors transplant windpipe with stem cells]

Permalink | 1 comment | Lynn Truong's blog | Channel: Stem cells

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From Sickness To Stem Cells To Closure At Last

Amy B. Scher — Sat, 08 Nov 2008 20:32:34 -0500

By Amy B. Scher

This long journey has been full of so many things.....except one.

Closure.

But, today was my day.

I went back to finish what started so many years ago (covered in an obnoxious amount of tick spray of course).

I went back to the city where I now know that tiny tick bit me without my knowledge
In sunny Ojai, California, a place I still love
And stared at the crevices of a tree, deciphering which one could have housed the insect that changed my life forever
And then I kissed my days of illness goodbye in true Amy style

I ran around that symbolic tree as many times as I could (with my puppy following close behind)
Leaping over bushes and a broken sprinkler with an energy so all its own, I didn't know I posessed it until that very moment
I stomped all of those unpleasant memories back into the earth as hard as I could and put them to rest
Goodbye to the miserable days of pain and agony and longing for a cure or even a glimmer of hope

As I walked away, it finally felt over, like I was leaving even the presence of my energy there to blow away in the autumn breeze
I thought there would be sadness and maybe a few tears but there was nothing of the sort
Only pure joy as I ran and stomped on the feet that were too painful to even stand on at one point in my not so distant history

I breathe so many sighs of relief tonight
I feel lighter than I ever have
I would do this day over and over again a million times if I could
It's been one of the most healing of my life
The nightmare has ended and it is gone from my being
I'm awake and alive and well
And I have emerged a bigger, better person than I would have ever been if the disease that destroyed nearly all of me.....hadn't also allowed me to rebuild a life more beautiful than I could have ever imagined

Thank you to the person who journeyed with me to that tree today
And took pictures as I ran around it like a fool
You are an inspiration in more ways than you know
Nothing felt better than ending all of the pain and heartache there with you as my witness

Permalink | 9 comments | Amy B. Scher's blog | Channel: The India Story, Lyme Disease, Amy's journey, Stem cells

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Life as a Type 2 Diabetic - Part 1

Andrea Dickson — Mon, 06 Oct 2008 18:03:32 -0400

By Andrea Dickson

My name is Andrea. I'm 31 years old, and I've been a Type 2 diabetic since I was 17. I was diagnosed at 19, but I believe the trouble started when I was younger, as all the signs point to it.

It used to be fairly unusual to be under 20 years old and have Type 2 diabetes. In fact, when I would tell people that I was diabetic, they would immediately assume that I was a Type 1. These days, it's really common to meet kids who are Type 2 diabetics.

The difference between Type 1 and Type 2 is complicated, and often blurred these days. The main difference is that a Type 1 diabetic has a pancreas that doesn't produce insulin, because their immune system attacked their pancreatic cells. Type 2 diabetics do produce insulin, but for reasons not entirely understood at this time, their bodies are unable to use that insulin in processing their sugars.

I won't really go into great detail about what diabetes is like - there are many good resources for that on the internet, and I would likely not do an adequate job describing the vast array of experiences that diabetics go through. I can only tell you my story, and walk you through my attempts to beat this disease.

When I was initially diagnosed with diabetes, my doctor put me on a drug called Glucophage, which means "sugar eater". The generic name of this drug is Metformin. Metformin is a pill that helps a diabetic's blood sugar levels by reducing gluconeogenesis and prompting regular cells to absorb sugar from the blood stream. Metformin also reduces the risk of cardiovascular disease.

It also causes extreme gastrointestinal distress.

I was put on this drug, and not warned about the side effects. There was nothing on the bottle that indicated how severe the side effects could be. The usual "may cause dizziness" warning was there, but nothing else. The side effects took a long time to hit me, and when they finally did, I didn't connect the cramping and diarrhea to the drugs - I thought I was lactose intolerant. I became a strict vegan, but continued to suffer for 9 months before another doctor mentioned, offhandedly, that some people experience stomach problems while on Metformin.

This was sad for me. Not only did I spend months in agony, downing Immodium AD by the handful, but Metformin did such a wonderful job controlling my blood sugars. It didn't cause me to gain weight, and I never had hypoglycemia with it (that's when your blood sugars drop to low levels, and you feel dizzy, nauseated, and sometimes cranky or even violent). But I couldn't continue living that way, pretty much always staying without 50 feet of a bathroom stall. And the pain!

Anyway, after trying other oral medications, I decided to start taking insulin. The reason for this was simple: I wanted to be able to eat what I liked. I actually don't have a sweet tooth, and I never really have. I'm not the type to eat a box of candy in one sitting. I don't even like ice cream. What I do like is bread. Pasta. Rice. And these foods are so loaded with carbohydrates that a normal oral medication, such as Glyburide, can't handle the rush of sugars into my bloodstream. Over the long haul, sure, Glyburide can bring my blood glucose levels down, but I'll have to suffer through a few hours of elevated sugar, which causes damage to my cells.

Plus, I feel terrible when I have high blood sugar. Every diabetic has their own range at which they feel comfortable - my blood sugars have to be between 80 and 115 for me to feel good. Any higher, or lower, and I feel awful. High blood sugars result in sluggishness, splitting headaches, and general stupor. Low blood sugars result in cold sweats and fits of anger.

So, I have to carefully balance my sugars so as not to leave this 45-point range of good feelings. Insulin is the only medicine that allows me to do this. And I was satisfied with it until recently.

Recently - well, I can't really explain exactly what it is that happened. A weight gain. A lack of energy. But I suddenly realized that I wasn't getting anywhere. My A1C levels aren't ideal. I'm grumpy a lot of the time, and I went up a pant size (not good). I find myself easily winded, and I have hunger pangs when I shouldn't. I've never been a problem eater, although I am a bit heavy, but I find myself constantly eating.

I've decided to take drastic measures for what I consider a drastic situation. I don't normally believe in drastic diets, actually, because I find that anything drastic is almost a set up for failure. Human beings don't do well with rapid changes. We like things to be gradual, and I generally believe that gradual is the way to go.

But I feel as though I'm sliding down a very slippery slope towards terrible health, and I can't see how moving slowly towards a goal of weight loss and fitness is going to get me there. The problem with gradual goals is that they are easy to let go of. For some people, little changes are all that is necessary. For me, I feel like something big is needed.

That's why today, I'm starting on a 70% raw diet. In a way, it's a gradual form, because I will eat some cooked things in the evening before bed. But I want to decrease the amount of insulin that I require, and one very good way to do this is eat mainly raw foods, or at least, foods that CAN be eaten raw. Grains can generally not be eaten raw, although they can be sprouted and eaten.

But being a raw foodist largely means that you can eat fruits and vegetables - the kinds of vegetables that lend themselves to raw consumption. Eggplant is allowed, but not as easy to deal with as, say, celery.

In my next post, I will go into detail as to why I would embark on such a difficult diet. But first, I wanted to introduce myself and explain my purpose in blogging here. I will blog about more than diabetes, of course - there is so much more wrong with me! I'm an endless fount of medical maladies, so I'll have plenty of experiments to share with the readers of this blog.

Thanks for taking the time to meet me. Feel free to leave any questions that you might have in the comments section, and I'll answer them as best as I can.

Permalink | Comments | Andrea Dickson's blog | Channel: Diabetes

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The Happy-Birthday-To-Me Letter!

Amy B. Scher — Fri, 19 Sep 2008 23:17:50 -0400

By Amy B. Scher

Dear Me,

Happy Birthday!

I can’t believe I know that I will wake up tomorrow, on my big day, in no pain. It seems celebration days were always the worst. I’m not sure what kind of lesson that could have been but the dependability of the pattern was uncanny.

So many birthdays spent in bed and cakes I could never eat because of allergies....and some years, forks too heavy to lift to my mouth even if I could.

But now….. I can stand up. Eat pizza and cake. Jump up and down with a party hat on if I want to. Go out of the house and walk for miles. Not worry about painkillers and medicine bottles and timers for taking it all. No nausea from medicine and no headaches either. No tears for moments I know I am missing, and guilt for the happy ones I see that are absent from the faces of my oh-so-patient and dedicated loved ones.

But do you know what the absolute best part of my 29th year is?

I am alive.

And that for the first birthday in a very long time, there is not a thought in my mind that I might not be here for many, many, many more years to come.

Love,

Permalink | 11 comments | Amy B. Scher's blog | Channel: The India Story, Amy's journey, Stem cells

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Medical Freedom: Hand Delivered

Amy B. Scher — Thu, 11 Sep 2008 18:53:26 -0400

By Amy B. Scher

I have the strangest feeling of complete freedom; despite a normally fear-inducing circumstance.

I lost my health insurance this month.

The details aren’t important, but I will state it isn’t my fault and there is absolutely nothing I can do about it. Nada. Zip. Zilch. I don’t usually contend well with these sturdy inabilities to change things, but it is what it is.

I got the notice in the mail. It didn’t make sense so I was a bit confused. But more perplexed than by the words within the envelope, I was stunned by the noticeable missing pit in my stomach. Where was that rock hard feeling that sits in my gut when I deal with anything medical?

My family has gone nearly broke trying to sustain my healthcare in the last few years, so why was I not completely scared of a future without my beloved Blue Cross buddy? It certainly isn’t for the lack of understanding the negative impact of having NO INSURANCE. I keep saying it aloud to see if it starts to terrify me. Everyone who knows me, is well aware that I am the biggest proponent of insurance. Yes, it’s expensive and still often doesn’t cover what you need (you can argue with me till you’re blue and my reasons for having it will always win), but it covers a lot more than your cash would or should.

All that is irrelevant though at this point. It’s gone. I am on my own.

And in the most transparent revelation that I’ve had since I can remember, not being bound by the safety net of this bureaucracy feels as if I have just been set free from chains. It is the absence of the invisible walls of the medical system prison I am used to living in. It is simply that I am finally not a hostage of thoughts so tightly impacted by what has always been (sickness), that I am not consumed with “what might be” (more sickness).

I am not high risk anymore in the same sense.

I am not a “sick person” who needs care on a daily basis.

I am normal to the point that this risk I am forced to take, is no worse a risk than if anyone else took it.

I don't fit in some special category labeled "FRAGILE" anymore.

I am healthy.

And I am ecstatically and undoubtedly free from a kind of fear I never even knew was possible to live without.

Thank you Dr. Shroff and Dr. Ashish. Thank you for giving me embryonic stem cells, but infusing me with just as much hope. Thank you for giving me the strength to inspire others. Thank you for a pioneerism that is unmatchable.

As I make my way through my eighth month in my incredibly strong and healthy body, I realize that what you gave me was an unthinkable gift of so many things I can easily name; but more importantly, some that I didn’t even know I was missing.

Permalink | 3 comments | Amy B. Scher's blog | Channel: The India Story, Lyme Disease, Amy's journey, Stem cells

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This Little Blog Is Growing Up!

Amy B. Scher — Tue, 02 Sep 2008 11:59:05 -0400

By Amy B. Scher

After many months of solo blogging, I’m happy to introduce a new fellow writer (and more on the way!). Andrea Dickson, a talented blogger from Wise Bread (an easy and fun to read personal finance site), will be joining me in the ranting, raving and informing of all things healthcare related. This will be a tremendous asset to the site as I’m eager to let her showcase her skills on many of the things I haven’t written about, while focusing my writing on my embryonic stem cell treatment in India.

Please visit Andrea's profile when you get a chance to see what she's all about. Healthcare Hacks will be recruiting still more bloggers to come, so let the fun begin!

In other news, after receiving what seems like a million e-mails about the treatment in India, I’m thrilled to have a user's forum set up, where I can communicate more effectively with readers, and they can communicate with each other. Please make sure to join the forum to get involved in the conversations and read some of the tips and tricks in there. You can get to it easily from any page, using the VIST OUR FORUMS banner at the top. We promise we won’t spam you or use your e-mail address for anything you wouldn’t approve of.

May this growth spurt in Healthcare Hacks be the beginning of many wonderful and giant steps in the right direction toward your own health!

Permalink | 1 comment | Amy B. Scher's blog

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The BIG Question Of A Chronic Lyme Disease Cure

Amy B. Scher — Fri, 22 Aug 2008 17:20:04 -0400

By Amy B. Scher

It seems I have to answer this, totally emotionless, once and for all. I may paste it on my forehead and the signature tagline in my e-mail. I get asked it so many times that my answer seems canned. And despite absolutely loving that I can inspire hope in so many via the phone and e-mail, prospective patients need a place to go and read this for themselves. Over and over if they wish.....

Question: “Are embryonic stem cells a cure for Chronic Lyme Disease?”

Short answer: I believe (disclaimer: Atlhough I am not in any way a medical professional qualified to advise, so please consult your own...) that in conjunction with antibiotics, embryonic stem cells can be a cure for debilitating symptoms associated with Chronic Lyme Disease. I feel that this can happen in two ways. One, by pumping up the immune system to better cope with the infection and other issues and diminishing chances of a relapse (with the help of adequate antibiotic treatment and possibly supplements and alternatives); and two, by helping to repair the body's degeneration which can be causing many symptoms because of damage to the body systems (such as nerve damage, heart damage, etc.).

Long answer: In my opinion, nothing kills the Lyme bacteria and other co-infections except antibiotics (and anti-parasitic medication, etc.). However, the bacterial load is not the only problem with Lyme Disease. And often after one has gone through rigorous treatment protocols, it may not be any part of the problem. The degeneration of the body due to having an untreated or undiagnosed infectious disease for so long is a huge challenge (arthritis, brain lesions, a damaged nervous system, heart problems and the list goes on). Western medicine is there to help treat the actual infection (even if it’s near impossible sometimes thanks to this nightmarishly “smart” bacteria). But, what can we do to repair our tormented bodies once doctors have helped us erradicate the bacteria?

As well as all of those lovely issues of degeneration, a severely compromised immune system makes things worse by allowing the body to become a sponge, soaking up every little germ, chemical and whatever else might be floating around an environment. To take it a depressing step further, a patient's system can’t detoxify properly so they becomes stuck with all of that inside of them. Even the simplest of ways most people detoxify such as urine and sweat, are not reliable. Many Chronic Lyme patients over time, will become unable to sweat since it is a function of the nervous system, causing a further problem with detox. If the kidneys don’t work right, then toxins may not be excreted through urine. An immune system that doesn’t work though, goes far beyond that, keeping the body in a state of inability to control the Lyme infection, as well as often becoming misdirected, turning on your body instead of the infection (autoimmune diseases).

Ok, I’ve successfuly kept all Amy-isms out of this (which was excruciating for me). As a consolation prize to myself, I’m now directing you to my mushy, heartfelt post: What’s In A Cure?

Permalink | 1 comment | Amy B. Scher's blog | Channel: The India Story, Lyme Disease, Amy's journey, Stem cells, Learn about Lyme, Co-infections, Complications

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The Joy Of An Ordinary Cold

Amy B. Scher — Mon, 18 Aug 2008 20:36:54 -0400

By Amy B. Scher

I have a cold. I’m sniffling and sneezing and coughing so bad I’ve seriously choked three times today. I hung up hacking to death, mid-phone call, on the woman at the American Express customer service number. I am semi-pouting because I may not be able to go out of town tomorrow like I had planned. My head feels like it’s stuffed with rocks. My body aches. Driving five hours doesn’t seem in the cards.

I cannot believe I ever lived in an uncomfortable body for so many years (and this, by the way, is still nothing in comparison). One that needs constant attention and even when doted over and attended to, still doesn’t feel better.

I was teary this afternoon. This cold has kicked off some inner emotional turmoil. It’s a reminder of how bad it was to be sick and how much I never want to be that way again. I know it’s over now but it was apparently much more torturous than I realized at the time. I always joke that I have Post Traumatic Stress Disorder now from being chronically ill. It’s kind of funny, but maybe not such a far off theory.

I always had a hard time explaining to people what it was like to be sick, all the time. And now, as a healthy person (minus the temporary germ infested being I am now), I finally have a very inferior analogy that the general (non chronically ill) population will understand.

Imagine having a cold (but tenfold the symptoms and pain and whatever else) and doctors telling you it will never go away. Or better yet, doctors telling you it will, but then year after year, you have the same cold without so much as a 4 second break. Everything hurts all the time. Your nose won’t stop running. You have to keep getting up to run to the bathroom to blow it but you cough and sneeze all along the way. You are too tired to keep getting up but you have to; your nose is in charge here. You try to sleep when night finally comes, because that’s the only time you can escape the cold, but alas, it keeps you up. Your sinuses hurt, your throat is on fire and your ears ache constantly. You can hardly breathe so you can’t lie down. No position is comfortable. And, there isn’t a cold medicine at the drug store that has done a thing for you except flood you with side effects.

Ok, visual nightmare over.

I’m smiling now that it’s all in perspective. I’m grateful that all I have is a cold. Thank goodness this will be over, for sure. No doubt. When I go to bed tonight, I won’t have to lie awake wondering if I will sneeze and choke and have compromised breathing for the rest of my life; or if any of that will eventually kill me.

Who knew one could be so thankful for the sniffles? I’m so elated that I might even call the American Express rep back just to tell her I’m okay. And that, yes, I’ll be paying that bill on time this month.

Permalink | 3 comments | Amy B. Scher's blog | Channel: The India Story, Amy's journey, Stem cells

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The Embryonic Stem Cell Proof Is In My Brain (Scan)

Amy B. Scher — Tue, 12 Aug 2008 14:17:40 -0400

By Amy B. Scher

I am still marveling at the color copies of my SPECT brain scan, although somewhat in disbelief. My passion for photography does not come close to producing pictures like the ones that manifested from last week’s scan, just days before I left India. In fact, I could not intentionally capture colors so vivid, or an image so real and telling of an illness that has now officially lost its battle, little by little and day by day since my first stem cell injection December 11, 2007. I hold in my hands not only pretty pictures; but proof so substantial that I dare to invite even the most mainstream, by-the-book, anti-embryonic-stem-cells-because-it-just-can’t-be-if-I-didn’t-invent-it-doctor, to contest.

When I got to Delhi in December of last year, my brain scan revealed three lesions in the frontal lobe of my brain (both sides). That was two more than I had after the torturously aggressive treatment in the U.S. to try to stop the progression of Chronic Lyme Disease, and subsequently, the degeneration of almost every body system in my 28-year-old being (including my brain tissue). The embryonic stem cell treatment has now completely demolished two lesions, and near but eradicated the last one. I study the images of my brain trying to locate the last part of the one remaining lesion. It’s improved beyond recognition, so much so that I’m having a hard time deciphering where its exact location is.

The part that stuns me the most I suppose, is that I left Delhi with two lesions in February of this year. One disappeared during my two-month treatment there. But consistent with the research that embryonic stem cells continue to work for months and years, they were repairing my body long after I left India and stopped receiving daily stem cells shots.

Dr. Geeta Shroff’s embryonic stem cells are the future of treating incurable and terminal illness. Like it or not Western world, here they come. You can try to slow down this remarkable technology, but you can’t stop it. And if you ever met the two doctors behind this, you’d silently laugh at anyone who thought otherwise.

After failing the mini-round of IV antibiotics due to boycotting veins in India, we decided a month of oral antibiotics would suffice. This is just to make sure the infection stays under control, if there is any still left at all. I hate the pills and the pills I have to take to make sure those pills don’t hurt me (my liver, kidneys, etc.). And I despise worrying that my stomach will just one day decide it hates me, enough to fall completely apart. But, I have this healthy, vibrant, functioning body and the inconvenience of the medication is a small price to pay for big “insurance.” I feel like sometimes I’m holding on so tight that I’ll crush the mere possibility out of a far-fetched theory that this disease could ever do again to me, what it once did.

This might just be the shortest blog post in the world for a girl as wordy as me. But, what can I say? My overcomplicated life has become so simple that it takes less and less words to describe.

And in all fairness, compared to the indisputable proof that embryonic stem cells regenerated an otherwise progressively degenerating 20-something-year-old brain -- does anything else really even matter?

Permalink | 5 comments | Amy B. Scher's blog | Channel: The India Story, Lyme Disease, Amy's journey, Stem cells

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Caregiving In The Name Of A Miracle

Amy B. Scher — Sun, 03 Aug 2008 21:15:34 -0400

By Amy B. Scher

Note: The following post is meant to provide praise and validate the importance of caregivers who come with the patients receiving treatment. However, in no way is it meant to denigrate or be critical of those friends and family members who want to come, but due to their own circumstances such as job commitments, health reasons or family obligations, are unable to do so.

To those of you who are not here: You are the glue that gently holds together pieces of the beautiful lives we had to part with to do this, so when our missions here are complete, we have arms to run home to. You are irreplaceable motivation every day to push further, become stronger, and live bigger. Not even for a second, should you ever forget that.

Being in India for the second time in the midst of all of these new patients (I'm a veteran now!) has made me more aware than ever at the important, undeniable, heroic role of the caregivers here with patients; especially those here for the first treatment round. Each patient must come with one because even though the nurses and doctors are wonderful, there is nothing like the love of a mother/brother/husband/wife/friend/parent/partner/you-get-the-idea. It is actually a requirement for the treatment program and a wise one at that. Even the bravest fall apart under the circumstances and when you are sick or injured, emotions are high and tolerance can be low. It can be survived alone for sure, but the warm hug of someone to fall into when you really need it, is some mighty important medicine.

Blessed are the caregivers who sleep on a fold out mattress instead of their own cozy bed; swelter in the sticky heat outside just to search for the comfort foods of home; work from a laptop at odd hours in a totally different time zone just to make money to get here and be here; adapt to life without the assisted devices they are accustomed to (like handicapped bathrooms); smile along when things go well and cry too when things are tough; rarely complain because they want this as bad as their loved ones; make the best of everything and even manage to have some fun; relocate the pets for months at a time until they return; use a small counter and a lonely teapot as a full-service kitchen; laugh over the silly things when frustration is the first response; never give up; dry the tears when the days seem too long and hard; forgo Starbucks and happy hour for afternoon tea and melted evening ice cream from the market; get soaked in the fierce rain of Delhi; are there for first steps or first days of no pain; use the time to catch up on their reading when they have a million more productive things to do waiting at home; cheer in physio; brave the tuk-tuk rides that make them nauseous; peel and wash and disinfect the fruit to make sure the baby stem cells have enough nutrition; and embrace not only the hope of this incredible treatment, but the often rough and wild experience of an unfamiliar life with a person they hold so close, they could not imagine it any other way.

Miracles happen all the time here. The best seats are rightfully reserved for the cheerleaders that stand on the sidelines unwilling to let anyone tell them something different.

Permalink | 4 comments | Amy B. Scher's blog | Channel: The India Story, Amy's journey, Stem cells

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