Hi all- I’m Sara, the new summer intern at change:healthcare. I’m only two weeks in, but it has been great so far! Katrina asked me to write a blog post about anything my heart desired involving healthcare. So, I’ve decided to share some of my experiences from the last four weeks I spent doing medical work in Kampala, Uganda. This blog presents a unique opportunity to express some of what I experienced because most people only want to know if I saw a lion or if it was scary. While both of my stays in Africa have been full of adventures (like a safari during which I did see a lion, bungee jumping over/rafting the Nile, and climbing Mt. Kilimanjaro- no big deal), these in no way sum up my time there. This summer my work helped me understand the flaws and successes of the Ugandan healthcare system. I worked at a place called Meeting Point (MP), a rather unique site assignment. It is hard to sum MP in one or two words because it provides so many services to the surrounding community. The assistance MP provides includes adherence counseling; home visits to their HIV positive clients; a welcome home for 40 AIDS orphans; vocational education for older children who never received any formal education; and primary level education to local children. They also supplied food to many of their clients until the resources they received from the World Food Program (WFP) were cut due to the need in the Northern region of the country. Obviously, they cover quite a bit of ground.

Part of my daily routine consisted of accompanying an HIV counselor on home visits in the communities surrounding their offices. Over the course of four weeks, I must have visited over 70 homes and families. The complaints of most involved hunger due to the lack of support from the WFP or the need for school fees to keep their children in school (MP also sponsors hundreds of children’s school fees). I learned so much about the indirect effects the HIV/AIDS epidemic has on the lives of those affected. I met numerous parentless families where children were fending for themselves or families run by grandparents who are now responsible for multiple generations of children. I often met women left caring for as many as eight children on their own due to abandonment (Uganda has the third highest birthrate in the world with a fertility rate of 6.6 children per woman, so large families are the norm). Talk about being a single parent. It was not until I visited a woman named Miriam on my third day of home visits that I saw firsthand the devastating effect HIV/AIDS could have on a person physically.

Miriam is a woman in her mid-twenties who is HIV positive and has developed tuberculosis because of her weakened immune system. She has been taking both antiretroviral drugs (ARVs) and TB medication for the last four months. The combination of ARVs and TB meds has had a significant effect on her mobility and strength. When I visited Miriam, she could only sit up in her bed and her entire collarbone and all her ribs were visible. The combination of both powerful medications has resulted in peripheral neuropathy (paralysis) on the left side of Miriam’s body and she said she could feel the right side of her body succumbing to paralysis as well. Sitting up took nearly all of her energy. She knew she needed to get to the hospital because of her weakened state, fever, and because her lungs were filled with fluid, but she didn’t have money for transport or any phone credit to call a MP counselor (keep in mind, transport to the hospital would cost roughly 5 USD and a phone call 20 cents). She simply had to wait for someone to visit her. Luckily, the day after our visit the staff arranged for Miriam to go to the hospital to receive care.

While Miriam was the first of many HIV/AIDS patients I met who were suffering a great deal physically, there was a common thread connecting all of their situations- a lack of access to care due to physical and economic barriers. Without the help of the MP counselors and community workers, it is unlikely many of the clients would be able to access the care they need. While numerous HIV/AIDS programs throughout Kampala provide free clinical services and medications, (the running joke is that there are more NGOs than children), what good are they if the services are not accessible? This issue of access does not pervade only the developing world. US residents of urban areas with poor public transportation systems or of scattered rural areas also experience difficulties accessing care. Citizens of both countries face varying levels of economic struggles to receive healthcare services as well. An HIV test at one of the private hospitals in Kampala costs 20,000 Uganda shillings (roughly 9.50 USD), but the average Ugandan makes less than 30 USD each week. If the choices are getting an HIV test or feeding their children, which do you think they will choose? Luckily, MP has worked to overcome both of these barriers by getting out into the communities and ensuring their clients can gain access to the services and care they need.  This practice of meeting people where they are has been the hallmark of the work and projects of Partners in Health, who initiated a similar project here in the US to assist marginalized HIV patients in Boston. Learn more here. (Remember, HIV/AIDS hasn’t skipped over the US. A report published by the District of Columbia’s HIV/AIDS Administration just a few months ago estimated that 3% of people residing in the nation’s capital are HIV positive. Check out the report here.)

While the US healthcare system is anything but perfect, my time in Uganda made me appreciate our system as broken as it may be. The battle against HIV/AIDS in Uganda is one of the continents greatest successes with a national infection rate of “only” 5.4%. Rates, however, are increasing and experts are working to understand why. While I can do a fair bit of complaining about the cracks and flaws of our system, witnessing the healthcare struggles experienced by those in the developing world has definitely given me a new perspective as to how lucky I am to have access to the 37^th best healthcare system in the world. (Uganda is ranked 149^th out of 190 by the WHO.) To learn more about the current HIV/AIDS situation in Uganda and worldwide, you can check out the UNAIDS 2008 Report on the global AIDS epidemic.

Some of the students who attend MP's primary school.

My place of work for four weeks in the district of Namuwongo.

I have learned not to put complete blind faith in my Insurer. I do NOT blindly pay outstanding balances from providers and assume that my Insurer processed the claim properly, and neither should you as this story will show. Even though I’m a pretty savvy healthcare consumer (this IS what I do for a living – understanding the healthcare industry), this one had me confused for while.

My wife took my kids to a Clinic for their flu shots (No, I didn’t go and get mine, and that makes me far less of a person than those of you who did). Flu shots fall under “well care” on our plan, so there is no charge.

But then I got a bill from the clinic, an in-store deal – very convenient (I know, I should have gone too, stop already). The bill must be a glitch I told myself. I decided to wait and see if they figured it out rather than spend time on the phone with them and with my insurer. Then I got a statement for the bill again. Odd, I thought.

And then, I got a nice letter from Insurer asking me to confirm if I had another insurance plan. I procrastinated, was moving residences, etc. and did not answer that letter. I did not make the connection.

Doing something else entirely, I logged in to the online view of my insurance account (which I must say is a weak “silo” view of the information my insurer has). They only had two claims for the past year. That was wrong, I knew. Hmmm. Must’ve logged into the account for our previous policy (still active 2 years after moving off of that plan – can you say “we never update”). Yup. Logged out and logged in with the other username/password combo and suddenly, there are my claims for the year on my current plan.

Only then does it dawn on me. The clinic submitted the claim on the old insurance and did not confirm new insurance, or if they did, they simply accepted that my insurance info was current with them. My previous plan and this plan were with the same Insurer, so it’s an honest mistake.

So now my Insurer has denied the claim on my old insurance plan. The clinic wants their money because the Insurer denied it. Now I’ve got to go and straighten out both of them because my insurer who had BOTH policies is not able to do a simple lookup on my SSN and determine yes, I do have another policy AND LO AND BEHOLD IT’S WITH THEM!! Who’d a thunk since they only have 65% of the entire health insurance business in the state.

It’s only $60 bucks – 2 flu shots at $30 each, but it’s my $60. It’s money they planned on spending in the plan, so it’s paid in. Most folks would have simply assumed that the shots weren’t actually covered and paid the $60.

Thankfully, I called the Clinic’s 1-866 number, and Mona was very helpful and walked through things with me and resubmitted the claims.

Don’t put too much faith in your Insurer.

Went for the third of the four surgeries for varicose veins in my legs. Tweeted the whole procedure again (see below). And since this procedure was soooo much more graphic, I got the pix and video to go with it. To bring everyone up to speed, the first two surgeries were laser ablation from the front and back of the legs. That sealed off the problem veins. The last two are the actual removal of visible veins which have proven to be painful. The pain was the result of phlebitis. As Dr. Bonau removed the veins, he asked if I had ever had phlebitis. The veins showed signs of it and the pain that I have had would be consistent with that diagnosis.

Fair warning: the pix and vids are pretty graphic. Not for the squeamish. All pix and vids were shot by me personally while they did the work on my legs. The areas were deadened so I felt nothing, but it was still a bit unnerving to watch the doc tugging on my body like he was.

Thanks agin to all of you following along and thanks for the supportive messages before, during and after surgery. A special shout out to @MindofAndre twitter and blogger trailblazer.

The tweets (messages on twitter) was so popular last time, I did it again for the follow up laser ablation surgery done on the back of my legs for varicose veins. You can catch the first installment here if you missed it.  And once again, I went through the trouble of reverse flowing the tweets so they go in order as you read down. For the record, I saw Dr. Roger Bonau at The Surgical Clinic in Nashville.

The discomfort this time may be a little bit more apparent from the posts. But the post op has been better. Luck of the draw, I guess.

The award for best tweet to me during the surgery comes from good friend and health care law blogger, Bob Coffield (catch his tweets @bobcoffield on twitter):

@robert_hendrick another twitter use. Monitor real time malpractice. Going to start including tweet requests in discovery

@bobcoffield doc found no humor in tweets in discovery. I did though.

@Robert_Hendrick did you tell him that I am on the defense side?

Enjoy!

Live from surgery part 2. Tweeting my surgery starting around 9am

Sooo. Valium $2.63 last time. $2.29 this time at same kroger. Must be on sale. Purely for research. Going drug free.

Uh oh. The staff at the doc’s office is following me on twitter now.

Getting quick ultrasound on previous surgery spot. Healing nicely.

Smearing betadine on my legs now. COLD.

Waiting for the rock star doc to show for surg. Country music playing in operating room. I love Nashville.

Doc walked in “what the hell are we listening to?”

First stick. No big deal. Still feel the flush and warmth in my body. Nerves.

Man I’m sweating. Stress of recent days ha heightened my apprehension over this. Doc in canulating (trying to get needle in vein)

Dr. Bonau says of the canulating “This is a bit tortuous.” Mmmmhmmmm.

Doc jinxed us when he said “this will be easier than first one.” Getting more lydocaine right now.

Wondering where the health content 08 tweets are. Not seeing any.

@dian_luffman the adrenaline rush has abated. Still on leg #1. Searching…searching…searching

Left leg canulated. FINALLY! Going for other leg and planning to laser both at one time.

@bobcoffield thanks for the distraction.

Doc is giving me his entire educational background. Been at tulane, NY, sloan kettering, st thomas, vandy…

No more pain than the first time. Far more tedious. “Worst is over.”

Firing up the laser…

Lydocaine going in around laser site. Flattens the vein a bit by putting pressure protectsthe vein from the heat.

Ooooooooow. Bad stick. Bad bad stick. Ow ow ow ow ow

Taste of burnt blood in the back of my throat from laser

Right leg hurt like shit up in the hammy. Left leg done and no pain at all.

Oh so glad to be done. Cleanup to ensue. More COLD stuff on my legs to clean.

So doc goes in at calf. Runs catheter up leg about 12″ and then lasers 12″ of vein shut.

Only getting compression wrap on calves. w00t! No behind the knee wrap.

@bobcoffield doc found no humor in tweets in discovery. I did though.

And done. Thanks to everyone!

8 hours after the surgery, the lydocaine has worn off.

Ah. Now I’m getting the feeling of little bee stings up the back of my left leg. This is fun (sarcasm noted).

First off, thanks for all of the concern and support from so many people over the past few days WRT my surgery. It seems I’m telling people things and repeating myself and I hate to bore anyone, so I’m putting this together to give folks the details and use my own experience as a personal example of why change:healthcare does what it does.

Why change:healthcare Does What It Does:

The business end of things…My doc will bill my insurer somewhere around $6,124. However, the allowed amount with my insurer is $2,904. Per the FANTASTIC staff at Dr. Bonau’s office, “double check with [insurer] to be sure and I don’t even know if they will tell you an exact number but you can try… The procedure codes are 36478/36479″

They also pointed me to the insurer’s financial counselor complete with the phone number.

Had I been uninsured, the amount would have been $6,124. On a different insurance, the cost would most assuredly been something OTHER THAN $2,904. And had my surgery not been Medically Necessary, and I had simply done self-pay without submitting a claim, I may have been expected to pay $6,124. Keep your eye on the peanut, now which shell is it under?

change:healthcare helps people sort through all of that.

My Status:

I’m doing well. 48 hours out of surgery the wrap is off, I have to wear a support sleeve on the leg, but I got on my bicycle on the stand in my home office. Rode for an hour at a moderate pace on an easy gear. Felt great to move again. Doing well.

So well in fact that I failed to take the prescribed ibuprofen today (day 2 post surgery). Should have taken some on waking up at 6 AM. After lunch, I started to feel it a bit, and finally got the anti-inflammatory into my system at around 2PM (Kids, do NOT try this at home).

The Procedure:

The procedure I had is called laser ablation or a phlebectomy. It beats the living crap out of the other option which is the traditional vein stripping I had done 25 years ago (I describe the traditional method below).

With laser ablation, they do a local anesthesia and then they insert a catheter into the leg near the vein. they run a fiber optic cable into the vein and use a laser to cauterize the vein closed. I literally stood up from the procedure and walked out the door. The other method would have left me bed ridden for several days and as much as 6 weeks from any significant physical activity (Boooooooooo).

The degree of discomfort during the procedure was less than that of getting some ink. Post-op, the discomfort is minimal and far less than the discomfort that I used to live with on a day to day basis. I did not realize how much pain I was living with day in and day out.

History:

I have a long-running history of varicose veins. My first surgery was at age 16 on both legs. Had a second surgery at 18 on the right leg. That would have been 1983-85 time frame. There was no ultrasound in those days to see what was going on inside, so they did what they thought was best, but in fact it turned out to create future problems. So here I am today some 25 years later dealing with it again.

I went to Doctor N., Head of Vascular Surgery at a large academic hospital which shall remain nameless. I told him the procedure I wanted - laser ablation. He told me the veins were not big enough and that the method would be the traditional vein stripping.

In vein stripping, they put you under general anesthesia and make numerous small (1-2 inch) incisions all down your legs, tie off the veins at those spots, cut them and pull them out. Bad news. Long recovery times (6 weeks) and severe bruising of the legs all along the path of the veins. That’s what Doc N. wanted to do to me. I declined.

A good friend of mine I ride bikes with had the same condition and recommended Dr. Bonau instead. My buddy told me that he did not realize how much pain he was living with until after surgery. Pre and post, the relief is hard to believe. I am ever so grateful to my fellow cyclist.

Had a bit of outpatient surgery done on my legs today. Laser ablation on my legs to eliminate varicose veins. Basically they numb the site, locate the vein using ultrasound, insert a fiber optic cable and cauterize the veins closed at the faulty junction. I was awake and on no drugs for the whole procedure. Opted out of the Valium to calm my nerves. And I “tweeted” (used twitter) the entire experience in real-time. Some of those who follow me suggested I post the tweets. So here they are. For the twitter-savvy, the order is in chron order - went thru the trouble so it would read from top to bottom.

Alrighty now. Get ready for live tweets from surgery. Getting laser ablation on my legs this am.

Got some great paper shorts. Then they french cut them up the side. Gr8!

Pre-op ultrasound.

I’ve got 10mg valium just in case I get nervous. So far no drugs.

Betadine on the legs. Damn this room is cold.

Ah, the joys of medicine. All dignity is sacrificed

Enter the rockstar…erm…doc

Oh crap. The ultrasound is running thru a laptop running windows platform.

To clarify. Having laser ablation to remove varicose veins.

First stick. Little bit o lidocaine. No biggee. Laser in.

2 lasers in top part of left leg. Little bit of sting not bad. Getting a tattoo is worse.

Doc explaining procedure and pointing out what’s going on on the screen.

Looking at ultrasound, doc says,”That’s the sheath and this is the laser” blown up to several times actual size this looks painful. But its not.

Lydocain and sodium bi-carb going in around site for laser. Provides better contact and numbs. Extreme laser heat next.

Head down to make vein smaller. First shot of laser stings a bit. Getting more numbing med.

Getting a bit of a burning taste in the back of my throat. Normal perdoc. No pain now from laser.

2 veins down. 2 to go. 1 lower left leg. 1 lower right leg. Top left leg done.

FYI there will not be pix of this one. Will bring cam next time. Back of the legs in a couple of weeks.

“Lower leg harder to anethesize” yeah thanks doc. Noticing that.

And lasering the lower left. Much quicker set up.

Dr. Bonau rocks! Gr8 sense of humor about all of this. He’s not sure what twitter is but he’s indulging me.

Feels like a bad windows program – searching…searching…searching. Looking for something on left leg. Left is all in back so will get it in 2 weeks. Done.

Now its time for cleanup. Wiping down the betadine from my freshly shaved legs. Maybe I’ll b faster on the bike now.

@bobcoffield @matt_mueller @georgesibble and others. Thanks for all of the support. @caparks. Thanks for the ride.

Leg wrapped tight. Stays bandaged for 48 hrs. No bath. Hmmmm.

Kroger pharmacy - healthcare consumer shout of the day! They have $4 generics but 3x 10mg valium generic only $2.63.

@jenmccabegorman I’m sure its even cheaper in the netherlands.

@bobcoffield had this done at ages 16 and 18. Now at 41. Have watched options evolve. Laser ablation is best imho.

@georgesibble Yep. Normal routine. Movement is good for circulation in lower leg. No heavy lifting. Ibuprofen o’ plenty.

Transparency: Dr. Bonau has performed this surgery 2500 times. 2 cases w complications. Both successfully resolved.

Check out Robert’s story and My Healthcare Is Killing Me featured on CNN’s Empowered Patient.

(Click on the story title in green to view the video!)

Great article from a freelance writer in The Morning Call. Richard has some of the ledgers from NY and Pennsylvania banks the 1950s to 1960s showing how household expenses were distributed. Of particular note is that the family paid all of their medical bills in cash. When someone came down with a more serious illness, there were more and more payments finally totally a whopping $1084 for a fairly serious medical condition. It offers a great idea of household life during those times prior to privatized medicine and reminds us as we see the shift to consumerism in healthcare that history always repeats itself.

We’ve got a hero in our midst.

Well, we always knew he was a neat guy and great boss, but now he’s an official, bona fide hero.
The Nashville Business Journal has just named our own Christopher Parks one of a handful of Healthcare Heroes. In a market like Nashville that arguably has been a healthcare Mecca for several decades now, that’s a pretty big deal. CP was tapped in the “Innovator” category — a professional who is breaking new ground in the medical arena through a new advancement or an improvement of efficiencies or a current initiative.

Many of you are well familiar with Christopher’s story… which is intertwined with the change:healthcare story.

In 2006, Christopher lost both parents to cancer. In working through the piles of medical bills, invoices and EOBs that accompanied their care, he found himself unable to make heads or tails of all the paperwork. Despite having worked seventeen years in the healthcare industry, CP learned that sorting through mountains of medical bills and related documents was more than frustrating. It was almost impossible. And not nearly as much fun as a colonoscopy.

After reasoning that the healthcare system shouldn’t be this confusing, nor its paperwork so overwhelming, he united a variety of programmers and created something he called MedBillManager, a web-based tool aimed at helping consumers organize, track and manage their medical bills. Those of you who have been with us since the early days will recall this product, which also helped users compare healthcare costs and quality with peers in secure confidence.

The product put consumers back in the healthcare driver seat just as the new dynamic of consumer-driven healthcare was gaining traction. So joining with fellow entrepreneur Robert Hendrick, who had his own story to tell concerning challenges with the industry, Christopher created change:healthcare and transformed MedBillManager into the “change:healthcare bill management tool.”

With a focus to promote transparency in the healthcare industry by following the dollar for the consumer.

You know the rest. Today, the company provides cost and quality information about providers, prescriptions, health issues and insurances to consumers to help them better understand and navigate the healthcare system. But Christopher has also been lead us toward employers, as well, to help them help employees take control of their healthcare benefits… and make smarter decisions that save everyone time and money.

A little over a year later, more than 15,000 users are sharing vital information concerning more than 2.5 million providers and 10,000 medical services through the change:healthcare platform.

And it all started with a guy who didn’t like the way the healthcare system overwhelmed him. A healthcare hero.

And I knew him when…..

The best thing about this job is that we get to meet some really great people. Today we met some outstanding folks who are going to make a difference.

Cover America made a stop right here in Nashville today and a few of the change:healthcare team had a chance to catch up with them. The cross country trek to capture stories of consumers’ difficulties with the healthcare system is part of a Consumer Reports effort on the healthcare front.

We really enjoyed meeting Meg, Blake, Pauline and Liz. Even got our photo with the RV in Centennial Park, in the shadow of Hospital Corporation of America (oh, how we love the irony of that one). Many thanks to these folks for what they are doing - fighting for the healthcare consumer.

Meg is getting a much deserved break after three weeks on the road, and we wish her a happy mini-vacation.

The rest of the crew is headed on to eastern Kentucky before hitting Virginia. We are going to try and hook them up with our favorite West Virginian, Bob Coffield of the Health Care Law Blog when they hit Charleston.