A Heart-Wrenching Letter from A CLI Patient Recently Amputated

The most advanced stage of PAD is deadlier than all cancers combined except for lung cancer.

Yet, PAD patients are treated with less respect.

In fact, there are medical professionals, insurance companies, and the media who are unknowingly advocating for policies that increase their mortality rate.

They're using skewed data without context to highlight doctors who may be performing a high number of minimally invasive procedures...and not distinguishing:

1. Whether the treated patients were on deck for amputation anyway.

2. Those handful of physicians who are wrongfully code crawling from those well-intentioned physicians practicing in the most vulnerable communities with a high number of severely ill patients that rightfully deserve the best chance at saving their limbs and lives.

3. Those patients who may be claudicants, but have fast-progressing, debilitating disease and require a kiss of the balloon or a bit of plaque removal to get them back on their feet without pain so they can walk more.

This data, riddled with holes, is being presented as unarguable fact to the public and the Department of Justice without any concrete evidence by those who have little experience on the frontlines performing these minimally invasive limb salvage attempts successfully as compared to their CLI fighting colleagues.

As a result, patients are being denied treatment that would provide them with a small increase in blood flow, bringing much-needed relief and allowing them to regain their ability to walk.

This denial of treatment hinders their progress and exacerbates their peripheral artery disease (PAD), significantly increasing their risk of amputation and eventual death.

In their misguided efforts, they're giving more authority to doctors who choose amputation without first attempting to save the limb through valiant efforts.

Why am I bringing this up today?

A CLI patient with a recent above-the-knee amputation came to me early this morning pacific time with a concern.

You must read her story below....

She said:

I wish I would've found your site sooner. I didn't. Now, I don't have one leg and my life may be next. I will need your help to figure out if there's someone who can help me keep my other leg. I'll give you some background that maybe you can share with others so this doesn't happen to them.

This summer after the NY Times article came out, my surgeon told me to read it to better understand why I shouldn't get a procedure to clear a blockage despite horrible pain that prevented me from even walking to my baby's bedroom without stopping twice to rest.

He said if he did a procedure, it would only bring me one step closer to amputation.

Well...I ultimately had an amputation because he did absolutely nothing!!!

I'm not a lazy, sit on my couch all day person even with my pain.

I'm typically on my feet all day chasing after my kids and doing errands.

I did what I was told and went on a vegan diet, took my medication, and I tried to just live with the pain and keep walking.

I trusted my doctor that no surgical action was necessary, even though my gut and legs said otherwise.

Since summer, I just kept trying to push through my day.

But I couldn't walk further than our garage because one time I had to call my husband to get me as the pain was so great I couldn't even stand up anymore.

So, I would try over and over to walk back and forth with as many stops as it took along the way.

I struggled to keep my kids from seeing the tears in my eyes with all this pain.

Well, last month while my family was out looking at Christmas lights, I felt extra sharp pain in my toe.

When I got home, I saw the skin had cracked and split.

I went to the podiatrist who gave me a salve.

But days later it got fiery red.

Then it started oozing.

Within a week or so, I couldn't even stand on it and I started to see a black color forming on other toes.

I called my surgeon's office and he immediately scheduled a consult.

I got a CTA and he told me I only had one stream of blood to my foot.

I had two streams of blood during the summer.

I asked if he could open at least another vein up.

He said it would only close now so he convinced me that amputation is the only option.

I did.

Now I'm laying here in rehab without my kids getting more and more depressed every day wondering if I'll ever see them grow up.

And I wonder why my life is less valued by doctors than my friend who was recently diagnosed with cancer.

She didn't have symptoms.

But in a regular cancer screening they found a malignant tumor in her breast.

They said it needs to be removed to prevent progression.

Now, that's interesting because I had symptoms and my PAD was progressing, and fast, as was why I asked my Doctor this past summer if I should get angioplasty to just help get rid of some of the pain so I could walk more...

But he said, "No."

Cancer progresses. We know that.

PAD progresses. We know that.

And I hear that when it progresses it's deadlier than most Cancers?

So why can't I, as a PAD patient even with symptoms showing it's progressing despite my personal efforts, get treated?

My surgeon says it's because studies show that most PAD patients never progress.

So, I can't be treated as an individual?

Some researcher is sitting between four white walls crunching numbers...

and I am at their mercy?

I'm just a number.

And because I'm part of that 10% percent that progress, suddenly my life is worth nothing?

This isn't right!

Do all cancer patients die from the disease?

No.

Do all PAD patients die from the disease?

Actually, if you think about it, yes.

If they have PAD, they have heart issues likely too I heard.

So, if we can't walk at a pace that gets our heart rate up, we will die.

So, why can't we get the same respect as cancer patients?

All I needed was just a little bit of relief to get me moving faster and with fewer stops.

That's it.

And because I couldn't move faster than a shuffle at 51 years old, not only do I not have a leg, but I just found out my heart is in jeopardy, too.

So, once I get out of rehab I'm going to have to back to the heart lab to get opened up.

Do these newspaper people understand what they're doing to people?

Do they understand that they are having an impact of lives, MY LIFE!

I should hold those newspaper people and those people quoted accountable for my amputation.

They should pay my extensive medical bills.

They should pay for my lost salary.

They should put money into my kids college funds because I now can't.

Why won't they listen?

Why do they keep fighting for me to lose my legs and my life!

Why don't they understand?

Why don't they care?

I think you are my only hope Kim. Please help me! Please help!

She's asks some great questions here.

I don't have the answers.

Do you?

The reporters on this beat for both NY Times and Propublica have only asked me for the stories that support their argument that too many limb salvage attempts are being made in a minimally invasive way...

They have ignored my attempts to send them patients like this one who represent the majority of PAD-related amputees.

I, too, don't understand why.

I would love to hear your reactions, comments, and insights.

Let's save life & limb together.