Sunday, November 08, 2009

Walking with Wes: Our Health Care Story


At the top of this post is an amazing picture. It may not look amazing; after all it's just a picture of me walking with my 22-year-old son, Wesley. But it is amazing. It's very amazing. And I'll tell you why.

Less than a month ago, Wesley was suffering so badly from degenerative disc disease that he could not walk more than a dozen steps without severe pain.

If that seems odd to you, it's only because it is. Severe spinal problems usually don't strike someone so young. But Wes somehow managed to draw the genetic short straw. Wes' father has the same condition, although his didn't really get severe until the last few years, when he reached his mid forties.

For Wes, the problems began when he was in high school. He complained of intermittent leg pain and the family doctor he went to always attributed the problem to muscle strain from athletics. It never occurred to him to check a kid presenting with leg soreness for a back problem.

So the pain continued off and on and then over a year ago, the problem got so bad that Wesley finally went to see an orthopedist who scheduled an MRI. The results were devastating. Two discs in Wesley's back were so extremely herniated that the doctor said his spine looked more appropriate to an elderly person than to a young man.

Subsequent doctors used words like "awful" and "horrible" to describe his condition.

But the doctors he saw were reluctant to schedule surgery. Back surgery is a serious matter, especially for one so young. The standard therapies were tried first. Wesley got painful steroid injections in his back. He got an inversion table. And then there was the pain medications - Vicodin. Percocet. Neurontin. They kept him in a daze and altered his mood.

When he tried to go out and do all the normal things other kids his age did he found that he simply couldn't. One night Wes and his sister, 25-year-old Jessica, went to a downtown club with some friends. Everyone was dancing and Wesley - for once - wanted to join in. Jessica told told me that when she missed her brother a few moments later she went looking and found him keeling by a wall near the restroom, crying.

He told her, "I just want to be a normal guy and do what everyone else does. But when I try to do what everyone else does, it hurts."

We hoped and prayed he'd be cleared for surgery. It seemed to be the only way he'd ever get relief. And finally, finally he was. Nothing was working - the therapies had all failed - and the doctor he was seeing at the time said that surgery was the only hope if Wesley were ever to have a normal life. What's more, we were told, Wesley's back was getting worse. If he didn't get the surgery, he was at risk of becoming permanently paralyzed by his condition.

But then came word from the insurance company. Wesley had a very basic policy through work with a very small cap that had already been exhausted by the tests and pain management he'd undergone. They would not pay for the surgery. Wes was devastated. We were frantic. Every physician approached wanted more money than his dad and I could come up with on our own, even together.

Do you know what it's like to stand by and watch your child suffer knowing that an operation could give him back what he's lost? Do you know what it's like to jump when the phone rings because you fear it's the hospital calling to say your son has been admitted, made dead from the waist down by what was a correctable condition?

I hope you never do.

In August, Wesley's father had back surgery. Ironic, huh? That's what we all thought, even him. Wesley needed it worse, but his dad was fortunate enough to have a better insurance policy through work. The surgery lasted a couple of hours and Wes' dad was home the same day. And the relief from his back pain was so immediate he became more determined than ever to see that his son got that surgery.

So when Wes' dad went back for his check-up a few weeks later, he told the doctor who'd fixed his 46-year-old back about his 22-year-old son's problem. The doctor listened and then asked if he could see Wes' MRI films. After taking a look at them, he called Wes' dad and told him something Truly Amazing.

The doctor said if we could come up with a thousand dollars and the pre-surgical consultation fee then he would do the surgery and set Wesley up on an affordable payment plan.

We couldn't believe it. Could it really be true? The figure was well within reach for us. We went for the consult and Wes was scheduled for a three hour surgery.

The surgery took place on October 15 and lasted four hours - four long, tension-filled hours. Afterwards when the doctor called us back, we knew right away that it had been tougher than any of us expected, even him. Wesley's discs had been so swollen and herniated that during the process of removing part of one and extricating it from the nerve it was pressing against, the nerve sheath had torn. Fortunately the damage was not permanent; when Wesley woke up he was able to move both of his legs.

Then the doctor told us something else. He said that once he opened Wes up, he realized that his back was worse than even he had imagined. He said because of the state of herniation, Wesley had been in danger of imminent, permanent paralysis.

Think about those words for a second. Think about them in the context of a 22-year-old man.

Imminent.

Permanent.

Paralysis.

I still get chills when I ponder those words, and not just because it's my kid we're talking about.

Wesley went back to his dad's that same afternoon. I'd have never thought it would be possible, but the doctor said he'd do better recuperating surrounded by family than in a hospital bed. The first night was rough. Wes suffered muscle spasms and little could be done to relieve the agony. Recovery was painful, but Wesley soldiered through with remarkable strength and resolve and each day brought improvement. Three days post-op he was walking. He went back to his apartment two weeks later. Tomorrow he goes for his first post-surgical visit. He's hoping the doctor will give him the all clear to go back to work.

Today he and I took a walk and he told me he's still getting used to getting his life back. For so long he's been looking in on a window of an existence he used to have, watching his friends continuing to do all the things he used to take for granted - dancing, hiking, surfing, walking through downtown. These things that seem so mundane to the rest of us now fill him with excitement. To see him hopeful and happy again....words fail me. I have none to describe how this makes my heart sing.

Every day that goes by, every time I see Wesley walk and laugh and tell me how happy he is to move without pain, how relieved he is to live without pain medication, I say a silent prayer of thanks for that wonderful doctor.

And then the sadness sets in. Because while we found a merciful doctor through what really amounted to a quirk of fate - through chance, really - there are hundreds and hundreds of families out there who aren't as fortunate.

My son, my 22-year-old son - a young man who is otherwise healthy and vital in every way, came dangerously close to being permanently paralyzed for life. He is walking again not because of this health care system, but in spite of it. It was the mercy of one good man - not this health care system - that has given him a new lease on life.

And in an world where profit and greed are the prevailing motivators, I don't have to tell you that Mercy is in short supply. We were among the lucky ones, but somewhere tonight parents are huddled together crying in fear over what tomorrow holds for their child. And there's no one coming to save them. For them, there is no Good Doctor. They are facing a different kind of mercy - the mercy of the insurance companies. In short, they are at the mercy of the merciless.

I watched the health care debate this weekend with interest. I was terribly disappointed that my congressman, Democrat Mike McIntyre, did not vote for the bill. After Wesley's surgery, I called his office and spoke to one of his aides, a young man named Ned. He seemed genuinely sympathetic.

I wish Ned was my congressman instead of Mike McIntyre.

Like so many other Blue Dogs, McIntyre's fear of the tea baggers has him tucking tail and rolling over in submission. Or perhaps he's hoping for a big campaign donation from the insurance lobby. Who knows. I suppose when you're a Congressman with excellent insurance benefits yourself the story of some 22-year-old man's brush with a lifelong disability isn't moving enough to get you to stick your political neck out.

Had we simply relied on the system Wesley would be in a wheelchair, a permanently disabled ward of the state. I'm not sure how that is cost effective; perhaps some of you worried about the "cost" of health reform can explain it to me.

It seems ironic to me that when Congressmen like Mike McIntyre - who cite costs as the "real" reason" they're opposed to reform - don't seem to stop and consider cost when sending our sons and daughters off to war. They seem all too willing to spend billions getting people crippled or killed; when it comes to war the motto seems to be "Spare No Expense." Yet they are strangely reluctant to spend billions to prevent disabilities or save lives here at home.

Maybe that's because for those congressmen it's easier to see people who need health care reform as faceless statistics. But we aren't faceless, Mr. McIntyre. Behind every statistic is a family. A family with a story. And this is ours.


23 comments:

Anonymous said...

Damned fine piece. As a physician myself, I can see it all - from beginning to end.

Affordable health care is in reach for us all, if Congress will do the right things. What they have done is a good thing, but because they - like your representative - were afraid to take on the real causes of high cost - such as this crazy malpractice lottery that benefits no one except the lawyers, or these insurers who are "too big to fail" but continue to rape the public, we are stuck with an extremely expensive program that will probably go bankrupt itself. At least more folks can get health care in the meantime.

Jim

Morgan said...

Thanks, Jim.

I'm not completely in support of the bill as it is. But we need to remember that it has to go through conferences and then the Senate before anything is enacted into law.

Even those who've voted in favor of the bill admit that what comes out of the Senate will look nothing like what went in. Perhaps the Senate will wise up and enact the kind of reforms you're talking about in lieu of what the Congress just pushed through.
My thinking on this is that had the Congress done nothing then we'd be back to square one. At least with the passage of this bill we're closer to something.

And don't we need something?

Personally I'd be happy with strict insurance reform and malpractice caps that would make the system so easy for insurance companies and lawyers to loot like their own personal piggy banks.

At least now there's some momentum. Let's hope that clear heads prevail. Perhaps if we framed it militaristically as a "War on Poor Health" we'd get some support.

michelle said...

Absolutely wonderful for Wes (: His sister often wonders if she will need the same surgery one day. I tell her she'll be fine and to keep her hopes high.

Morgan said...

Yeah, I know. I think after what her dad and brother have been through she's going to be careful not to strain herself, just in case.

Randy P. said...

Thanks for this. I completely agree. McIntyre is all for McIntyre. The right wing even has Democrats abandoning their principles now. I'm sure they're proud of themselves. Did you see one representative using a baby as a prop? That's who they are. Can't believe Mike's joining ranks with these clowns.

Morgan said...

Randy
I can believe it. When I was a staff writer on a daily paper, McIntyre was always polite and responsive. Now that I'm a Common Constituent I can't even get the time of day from the guy. Another case of the arrogance of incumbency. And to think he was the last politician I actually had real faith in. I guess he showed me.

Anonymous said...

Thank you for sharing your family's story. I am so glad Wes had the good fortune to have a loving, caring family and the phenomenal doctor he did.

I went right from your page to Senator Lieberman's website and asked him to switch his vote to "yes" on health care because he always talks about how important his faith is in his life. However, his faith speaks to compassion, to helping those less fortunate, to caring about others and his stance now is stark contrast to what his faith tells him to do. It is high time he put his faith in his votes.

I am so tired of politicians not thinking twice about endorsing money to kill and maim strangers in foreign lands, but those same politicians refuse to spend a dime on helping Americans survive and live meaningful lives.

They seem not to care whether or not those without their power, their wealth, their own cushy insurance policies suffer or die. Those people have no concern for others and should be removed from office.

I have no doubt that the pressure we the people put on politicians over these few months made a difference. Thank goodness for the internet and its power to enable us to make our voices heard and to communicate with each other.

Blessings to you and your family. Thank you for caring enough to share your story. May it touch the hearts of millions of Americans.

Anonymous said...

As to malpractice lawsuits - it is not the settlements that are horrendous not is it the attorney fees, it is the cost of the malpractice insurance that makes the system so expensive.

The insurance industry is milking both ends of the system. It pits the health care providers against the patients - making the doctors and nurses afraid and suspicious of patients.

Statistics show that patients are less likely to sue doctors if the doctors spend time with them, actually touch them, listen to them and follow-up to see that the care prescribed is making a difference but how many doctors have that time?

It is a vicious circle. Doctors have to have huge practices to cover malpractice insurance costs and then are less likely to have time to spend with patients.

Insurance began as a gambling industry in the coffeehouses of London. Just like casinos, the house never loses - we do - the doctors, the nurses, the patients.

It is time to regulate the insurance industry as we do casinos - a limit on profits, a demand that most of the premium dollars go to providing health care services and reducing doctor's costs.

Don't forget either that groups of doctors often own or are large investors in hospitals. Hospital costs are passed on to patients for a reason - profits and the cost of insurance. I will wager that the insurance costs (from basic such as fire or liability to malpractice)tally up as one of the major debits for hospitals.

There is a reason that the banks and the insurance companies have the largest buildings in most large cities - they reap the most profit. Profit, for insurance companies, that comes from the pain, suffering and financial ruin of everyone involved in the health care system.

Every one of us must keep up the pressure via emails, faxes, letters and phone calls to make politicians care about this. They must drop their greed. They must drop their fear. They must listen and respond to what the majority of Americans need and want. They must. They will if we all keep the pressure on.

It is still too early to claim victory. We have a win of sorts with the House. But this is only one battle. The Senate is where the real action is now. Keep up the good fight.

Curiouser said...

Beautifully written...great ending...powerful point about the cost of inadequate healthcare!

Morgan said...

To Anon at 11:17:
Thank you for your kind comments,and for urging Lieberman to put his actions in line with his faith. I wish I had a penny for every "believer" who is opposed to health care reform. I actually had one Baptist friend tell me that no reform was needed because anyone in this country could go to the ER if they had a problem. Such reasoning is asinine! Emergency wards are fine for triage, but a person with a chronic condition can't get treatment there!
Take my daughter for instance. She's twelve and has asthma. She's under the care of a good allergist. It's expensive, but the treatments keep her from having the kind of attack that these clowns are suggesting I wait and take her to the ER for. When it gets that bad it can mean a hospital stay! I'm lucky that I can afford her shots and medications.

People using the ER's for primary care is part of the problem, yet the same "Christians" who think the ER is a hunky dory place for you to take your sick relative or child also bitches about having to pay for others' indigent care.

For so many of these people, it comes down to this: I've got mine so screw my fellow man. That's pretty sad considering that these same people look you right in the eye and profess to be people of faith.

I think not.

Morgan said...

Anon at 11:25, I completely agree. It is far too early to rest. I think the Senate fight is going to be far more ruthless than what we just saw with the Congress. I just hope for the sake of the families pushing for a fairer system the politicians vote for what is right instead of what is politically expedient.

Morgan said...

Thank you, Curiouser. I appreciate your kind sentiments.

Anonymous said...

I understand how marvelous it must be that your son has been given the possibility of a better future.

But a dangerous spinal surgery, with complications, and the hospital didn't keep him in even overnight? Nerve damage in the spinal column, and they sent him home within hours to *spasm* without medical oversight?

Huh. A few years ago, my ex-boss, a doctor, needed a hysterectomy. As did a woman down the street -- same problem, both in good shape. The doctor got keyhole surgery, spent four days in the hospital, and came home with two bandaids and a months worth of meds. The other woman? They sawed her in half, sent her home the same day, and refused any pain meds beyond the third day. Two months later, she still couldn't straighten up, and the scar was horrendous. The doctor? Please.

Your son -- and your medically untrained family -- was put through hell, and denied adequate medical attention -- I'm sure the doctor did what he could, but the hospital and insurer should be sued for negligence.

But since you'd have to deal with attorneys, and that's worse... I'm glad things are going well.

Morgan said...

Wesley's dad had a similar surgery and went home the same day. As hard as it is to fathom, many patients go home the same day:

http://health.yahoo.com/back-treatment/percutaneous-discectomy-for-a-herniated-disc/healthwise--hw225848.html

The muscle spasms Wesley suffered are a common after-effect of surgery. Wesley had researched his own surgery, in fact, that he knew what was happening before anyone else. His dad, having not had them, was more afraid than he was.

In the hospital, they could have given him something stronger; that would have been the only benefit. But given that Wesley recovered so quickly at home I think the doctor in this case was correct to release him. It was his decision; the public hospital could not have denied him a bed if the doctor had ordered it. And given the lengths this doctor went to in order to help our son I have no doubt that he wasn't acting in what he considered Wesley's best interest.

I had the same misconceptions about back surgery before my son had his. Is it risky? Yes. Can it be complicated? Yes. But it can also be done with the patient going home the same day. Pretty amazing.

Launce Rake said...

Thank you for posting this, Victoria. It is so important that people understand that this is an issue that could affect almost ANY family. Unless you have many millions in the bank, sickness can break you and your family - forever.
There is endless debate over the statistics, but no one can deny that millions of Americans go into interminable debt and bankruptcy due to medical crises in their families. Worse, treatable medical conditions such as Wes experienced are left untreated until they become catastrophic problems. That means higher costs for everyone.
And here's a very frustrating bottom line: We are near (usually AT) the bottom of all industrialized nations in terms of quality-of-care as measured by outcomes in the total population. And no one disputes that we pay per capita more than any other nation on earth for this less-than-stellar health care.
Those who simply parrot the canard that "America has the best health system in the world" are either speaking for their personal experience - which means they are getting rich, or elected, on other people's suffering - or they are simply deluded.

Anonymous said...

I had tears in my eyes while reading about Wes. I was in similar straits with an eerily similar prognosis. I put a second mortgage on my house and used up most of my savings and my surgeon agreed to do the rest on his own dime.
All cases are unique, and in my case, I ended up needing the same surgery a year later, again being denied coverage, but Wes is a kid with his life ahead of him, I was in my 40's and pretty much resigned to being paralized at some point.

I hope and pray that no other family has to face this in the future. And the good this Doctor did for your son will certainly come back to him tenfold- that's how the universe works.

Good Luck, Wes, go leave your mark on the world and walk proud!

Celia Harrison said...

People heal better at home. Getting out of the hospital as soon as possible is always a good idea because of the resistant bacteria which could cause infections in incisions and hosptial costs.

Morgan said...

Launce, you really hit the nail on the head.

Maybe I'm just really simplistic in my thinking on the matter, but I can't understand what all the debate is about. People in this nation - many of them young and otherwise healthy - are being disabled or die from illnesses simply because they are uninsured. I don't understand how people - especially people who claim to be Christians - can turn their eyes away simply because they aren't affected.

Sometimes I go into the neighborhood convenience store and see a donation jar on the counter plastered with a picture of some kid or young adult who needs surgery or treatment for cancer. The fact that the suffering among us are reduced to collecting coins for some life-saving treatment is a national shame.

But as you said, the same people who look away from the suffering will look you in the eye and say this is the greatest nation on the planet. Really? I'd hate to see the worst.

Morgan said...

Anon at 7:20, thanks for you comments. The doctor said if Wesley were 42 instead of 22 he'd have fused his spine. But he said such an extreme measure was not an acceptable option for one so young.

We don't know if Wesley will need further surgery. It remains to be seen; he's committed to following his doctor's orders - living healthily and staying active through moderate exercise - so that his back will remain healthy.

I hope you will not become paralyzed. The great thing about medical advances is that they continue to make leaps and bounds. Perhaps in another few years there will be a new surgical technique that will be a game-changer for you as well. It's amazing what they can do with such minimal invasiveness now. I'm still in awe of what that doctor did for Wes in just four hours.

I do believe Wes will use his second chance to do great things; he's a great kid. And I also believe that the doctor who treated him will reap the benefit of the good will he has bestowed upon Wes, our family and everyone who has heard our story.

Morgan said...

Celia, you are exactly right. The doctor never said mentioned the infection risk, but it's always a concern. He said that keeping Wesley overnight would give the spinal block more time to wear off and make his getting up and into a car to leave even more painful should he wait an additional day. Also, he said the hospital beds aren't really designed for back patients and that his own bed at home would be better.
I'm completely convinced he was right on all points.

thimscool said...

Hi Morgan. I'm relieved to hear that Wes got some help. I hope it works out well.

How is he feeling?

Morgan said...

He's feeling great, Luke. He's back at work and is starting to exercise to rebuild the strength in his legs since he only walked when he had to for the last year. It's just amazing to see him pain free.
This has been life-changing for him in more ways than one. He's decided he wants to go back to school to be a nurse.

Jackie said...

Great post. I hope your son is doing well. As a UK national now living in the US I see how much people in this country suffer because the health care system in place is about money. A price should not be put on health. Basic health care should be available to all regardless of race, age, gender, socio-economic background etc. I wish you all the best.