Dirty Little Secret: The Uninsured Sick

No pulling cards today or jumping on a soapbox about my deadbeat ex.  Today I’m angry at the system. Now, I don’t know much about politics and don’t care to get too far involved so as to further raise my already high blood pressure. Why do I have high blood pressure you ask?  I’m so glad you asked!  I have Polycystic Kidney Disease (PKD). Never heard of it? Neither had I until I was diagnosed almost 17 years go by the Baylor Nephrology Department in Dallas, TX.  And by that, I mean the ENTIRE team of Nephrologists at the Baylor Health System stood in an exam room trying to convince me (with x-rays, CAT scans and IVP results in hand) that I had this disease. I was in such shock and denial that I went home and decided that they were all wrong and had made a huge mistake. Kidney disease, are you serious? Get real…

At the age of 22 I passed my first kidney stone and that same year was told I had high blood pressure. I spent the better part of a year going through every possible test to find the source of the pressure in my blood when I was finally referred over to Baylor by my Primary Doc. Another battery of tests and viola! The source: swelling kidneys due to seedling cysts on both filtering organs. Doc’s said my kidney function was fine, the disease was genetic and there were no treatments or cures…just go home, take your blood pressure meds and live your life.

So I did. For 12 years, during which I passed another 6 stones, at least.

Then the bottom dropped out. One day out of nowhere, I began to have a feeling of dread, then pain in my lower abdomen, then doubled over and couldn’t get back up. I was taken to the Baylor Emergency room where I was told that a cluster of cysts had ruptured in my left kidney.  WHAT!  You never told me they could do that!  And further, you certainly left out the part where there would be excruciating pain! I was in the hospital for 7 days while on a morphine drip to ease the pain. No other treatments or meds or cures, just pain management. WHAT! There’s NOTHING else that can be done? Are you kidding me? You guys can cure cancer and you can’t make my kidneys stop doing this?

Anyway, back to my original issue. Here it is several years later and I now live in daily pain from a chronic illness that has no cure, no treatment and will cause my kidneys to fail within the next couple of years. Did I ask for this? Hell’s No. Are you serious?  Who would ask for this shit? I’m no beauty queen but for several years my dance card was full, people. I can’t be diseased!  LOL!

The much bigger issue is that I have recently lost my insurance. If you don’t know how this story goes I’m here to tell you:

After the deadbeat, bastard husband left, I was to move back home to TX to a small town with family to collect myself, which at that point had completely shattered. Did my disease go away during this process…of course not. So off I went to try to find a health clinic or hospital or Doctor who could see a chronic patient with no insurance.  Anyone care to take a guess at what I have found?

Not even the county health department could treat me. Why, you ask? I’ll tell you: the ONE Doc that the Gregg County  (where I live now…in HELL) Health Department  has, does not believe in pain management for the chronically ill.

I’ll say that again for the cheap seats in the back…THE ONE DOC IN THE GREGG COUNTY HEALTH DEPARTMENT DOES NOT BELIEVE IN PAIN MANAGEMENT FOR THE CHRONICALLY ILL.

You see, I haven’t the time or energy to go in to all the legalities of pain management, that’s another story altogether. But I will say this: nearly 5 years ago my good Doctors at Baylor and I noticed that I was having more frequent ruptures of cysts, the cysts were getting larger and larger and I was living in pain, every day. The natural course was to recommend me to their Pain Management Department. I went through another battery of tests, tried every alternative therapy, signed consent and release forms and was required to attend regular Psych evals to make sure I didn’t become a drug addict, due to the fact that the ONLY treatment that would work on intractable pain, was opiod therapy.  I’ll say it again: The only treatment for intractable pain is opiod therapy. ARE YOU KIDDING ME?

Intractable pain is more commonly known in the medical profession as “organic” pain, or pain that no other meds can get to. Tylenol, Advil, Motrin, Aleve and the like, don’t work on that kind of pain. The source of the pain is actually inside and around the organ itself. It’s not nerve pain like other illnesses. And, it’s not like headache, joint and muscle pain. It is ORGAN pain, typically from swelling of the organ due to growing cysts or infection from passing stones, or both. Either way it’s a lose/lose proposition with this disease. Most kidney disease patients need a transplant by the age of 40…I’m 39, and very fortunate that I still have kidney function. My father had it and died at the age of 42.

I spent nearly a year with the Baylor Pain Management System trying to get the meds and dosages right. They were understanding and worked with me very closely to help manage my pain so that I could live a normal life. After all, I worked full time, had kids to raise and did a lot of volunteer work. I couldn’t just miss a few days while my kidneys did their thing. I wanted to live. And live I did for the next 4 years. While I had insurance. I even spent a year in Jacksonville, FL with the Mayo Clinic, who also monitored my disease and pain management, again telling me there was nothing else they could do but ease the pain so’s I could live a more normal life.

Here’s where it gets really good. Now that I have no insurance, I am the uninsured sick. Our great country’s dirty little secret. All the hoopla going on about the health care bill this and the health care bill that, is really for the INSURED. Since losing my job and insurance and moving back to TX I have seen 5 Doc’s and they all say the same thing: We can see you for your disease, but we don’t treat pain. And, you will have to pay cash (anywhere from $150 to $300 per visit). And my regimen of meds costing anywhere from $500 to $800 per month makes visits to a Doc quite a joke. A very painful one.

I have been referred to 5 clinics who are supposed to help the uninsured. And they do, so long as you only need a shot or you have a cold. Maybe you have diabetes or a heart condition and need a refill on your heart pill. But if you need anything more than that you are SHIT OUT OF LUCK.  A nurse actually compared her diabetes to my kidney disease.  Lady, diabetes can be controlled…kidney disease can’t.  ARE YOU SERIOUS?

I became so frustrated that I actually asked one Doc if he could just remove the offending kidneys and replace them with good ones so I can go on living a semi-normal life. I figured if he couldn’t help me in any other way, that must be the solution.  He grinned and walked out of the room.

Now, I have some confidence that I will again have health insurance someday. I’m not one to sit around and die a slow and painful death by kidney disease. But I tell you this: I would pay DOUBLE my own health premiums if it meant that not another person has to go through what I have been through over the past month.

I had made a Myspace post several months ago about the legalities of pain management in this country. I’d love to rehash it here, but that’s for another time. I’ll leave you with this: If you were told you had an incurable disease that would cause you crippling pain on a daily basis, there was no cure for it, no treatment for it other than opioid pain management therapy…what would you do? What if it was your child? Your mother, father, sister or brother? What if it was your best friend?

Does any of this make a difference in how you view the political BS of the new health care bill going on in Washington?  It should…  Why? What would you do if you lost your job and health coverage for your family and someone became seriously ill or was already being treated for a serious illness? Where would you go?

Companies are still laying off, our economy isn’t bouncing back as fast as first thought and there are thousands and thousands of people in my same predicament. You could be next!

And, one last thought (my opinion): Our health care system is set up to keep people ill, not cure them. Go ahead and compare our system to other countries..even underdeveloped countries and third-world countries. They at least attempt to heal their sick and use preventative care on a scale that we may never see.

Diabetes? Get real… You awful, sonofabitch health care worker. You should be so lucky to only get kidney disease and lose your job and insurance, after the nasty karma coming your way, my dear!

The ire I have spread on this post and thrust at you also comes from the fact that I have a semi-friend who has a chronic pain illness. And she had to resort to street drugs when she lost her job and insurance BECAUSE of her disease. The doctor visits were too expensive and again, no one will treat chronic illness with pain management, on a sliding scale or at a discount, when there is no insurance.  This is a travesty. It is humiliating, degrading and can have dire consequences.

<Gwen jumping down from the soap box>