As of midnight, November 1, I am finally insured! Yay! It’s been a long road waiting for this to happen. My doctors have wanted me to have another sleep study, which costs $1850. My pulmonologist wants me to have another V/Q exam, which is a nuclear exam, and was quoted at $3200. I also need a right-heart catheritazation, and we have no idea what that will cost. I need another echocardiogram, and I need a full spine MRI. I need a chest CT angiogram. I need a sonogram of my liver. I’ve been putting all these things off for a year to two years now, because I can’t afford them. My doctors have been wonderful with me, making sure I only have to take the tests and studies that were absolutely critical to my care, and letting me put some of these off until I was covered. They’ve felt their hands were tied, and it’s hard to treat a patient when you can’t send them in for the tests they need.

My doc wants to monitor my congestive heart failure, by doing a BNP test, but that test costs $220 bucks a pop. He wants to do one about once weekly. Then I need my PT/INR checked weekly, which is $90 bucks for the test and the visit. That’s over $300 bucks every month, just for two little tests. That’s not including the cost of the doctor or any other tests.

We’re also awaiting a confirmed diagnosis that will allow them to start the workup to see if I can even remotely qualify for the potentially life-saving surgery called PTE that’s available in San Diego. If I can be made eligible for this surgery, it might actually save my life. Without it, the CTEPH is going to kill me. It’s just a matter of when.

This is scary stuff. To sit back and realize that I’m just basically waiting to get better or die, and that all that might stand between the two extremes is a card in my wallet that says I have insurance.

WE DON’T WANT YOU

I was looking for a cardiologist at one point and called a doctor who came highly recommended. We were willing to pay cash to see him and we knew he wasn’t cheap, but when his office asked, “What insurance do you have?” I said, “None, we’re cash pay.” The receptionist said, “Oh, I’m sorry. Dr. So-and-so doesn’t take uninsured patients.”

There was no discussion. Nothing. Just thanks, but sorry we can’t schedule you. She pretty much hung up on us. It was crazy.

Now, we did find some awesome doctors who were quite willing to work with us. The cardiologist I found to do my echo made me a quote of over half the cost of what other docs were quoting me. He’s the one who first diagnosed my pulmonary hypertension.

I went to five different doctors before I was hospitalized. Every one of them who saw me should have put me in the hospital. By standards of care, every one of them should have admitted me. But not one of them did–why? None of them wanted to be responsible for admitting a cash pay patient into the hospital, for fear that I would not pay my bill and it would come back on them as the admitting doctor.

When I was finally admitted to the hospital, it was after I went to the ER myself and I was having ischemic attacks and in the ER I was diagnosed with active advance diastolic heart failure and massive multiple bilateral pulmonary embolisms. They were so bad, my pulmonologist said, “Massive. Acute. Scary. Very scary.” He scared me.

The immobilized me at the hospital. They put a heart monitor on and had leads running to all part so of my body. For six days, I lay flat on my back while they pumped me full of medicine to get the fluid off my body and injected me with blood thinners hoping no more would go through my heart and cause more damage. It was miserable. I was miserable.

And I had seen a doctor just two days prior to that hospitalization. I told her how much weight I’d gained, how puffy I was, how much fluid I was retaining, and how my feet were swollen so badly that I couldn’t even wear my clothes any more or put on shoes. I went to her office wearing house slippers. And you know what she said to me? Maybe I should go to a weight loss doctor.

WTF?

I lost 66 pounds in the hospital after they pumped me full of Lasix via IV. I was so full of fluid it was hard to breathe, even. Weight loss clinic? Are you fucking kidding me?

So yeah, I’m bitter about this all. I am. Fortunately, the hospital stay got me in with some good doctors who, because of continuity of care, continued to see me after the hospital stay. But I also have to be very careful–I can’t tell my doctors I don’t want to try a treatment or adamantly advocate for myself, because if I do, I run the risk of being discharged from their service.

When you’re uninsured, you watch every move. You do everything they say, sometimes even when it’s not what’s best for you. It’s tough.

HOW HAVING INSURANCE CHANGES THINGS

Now, I can choose my own doctors. I can go to different clinics. If I don’t like the way one doctor is treating me and he or she won’t work with me, all I have to do is go to another doctor and try his services. I have choices now. I have options. I get to be a true advocate in my own care.

Also, I no longer have to sit around and debate whether or not my current illness is bad enough to warrant going to the ER–without insurance, I have to debate, Do I want to go enough to have to pay an exorbitant bill? Can it wait until three or four days when I can see a doctor in the office or do I need to go now? How much money do we have coming in this month? Can we afford for me to be sick this month or not?

Now, I can go to the doctor when I’m sick and go right away, and maybe, just maybe, prevent some bad things happening that permanently worsen my condition.

PALLIATIVE CARE

When you’re paying cash for your medical care, and when medical care is so expensive, doctors and patients often avoid medication and treatment that will help relieve or alleviate pain and other symptoms that aren’t life threatening but that affect quality of life. Pain management treatment is not cheap. With insurance, I can now seek pain management without worrying about breaking my bank. Treating symptoms that make me feel like crap but aren’t life or disease threatening is now an option for me.

The relief I feel from this… wow, just amazing.

To have choices. To have symptom relief. To let go of the financial worry. This is amazing to me. You have no idea how it feels if you’ve never been there–you can imagine and you’d come close, but you’d never truly get it unless you’ve been here, where I am.

I am so very grateful.

I have five doctor appointments set up for next week. I’m seeking a pain management clinic and looking for a spine doctor and maybe I can FINALLY  see the neurologist I’ve been trying to get into see for two years.

I’m really stoked about this. I”m hopeful that with all the tests I can finally get where doctors can finally see what’s really going on and be able to treat my condition better, maybe my quality of life will drastically improve.

One can hope. One can hope.

So thanks for sharing this gratitude and joy with me this morning!

Happy All Saint’s Day!

Love and stuff,

Michy