Posted by Michy on Jan 20, 2016 in Health | 6 comments

So after meeting with the cardiologist at Baylor, I then met with the pulmonologist I’d been waiting for over a year to meet with. And she spent less than five minutes with me and put me into the hospital straight from clinic: Do not pass go, do not go home and pack a bag, go straight across the skybridge to the hospital across the street and check in.

It was a whirlwind. Crazy. I was scared, because these things don’t happen and I don’t know the hospitals there or the doctors or anything. So they put me in the hospital at Methodist Houston. I had to wait forever for a room and in the meantime, I ran out of oxygen in my tank. They brought me a tank to supplement until I got a a room where I could hook up to the room oxygen. Silly me, I dropped the tank on my foot in the room, and I broke my foot. Seriously, fractured a bone in my foot while at the hospital. They even took me down to x-ray and everything. It was hilarious. Well, I guess you had to be there to laugh at it. The bruising was amazing! See?

But that all said, I have a lot to get off my chest, so stick with me, ’cause this is going to get long, if I know me at all (and I do, so it’s going to get long):

THE VALUE OF A SECOND OPINION

Look, it flat-out comes down to this: If you aren’t happy with your healthcare, you have the right to go somewhere else. More than that, you owe it to yourself. Even if you are on Medicare or Medicaid, you are allowed, by law, a second evaluation and opinion. They MUST pay for it. Find a provider that accepts your insurance and get a second opinion.

Being the codependent that I am, I don’t give up easily on any relationship, and that included a doctor/patient relationship–which SHOULD be a strong bond relationship of trust. The doctor should trust you to do what he or she prescribes and do it right and you trust the doctor to treat you in the best interests of your health and well being and you trust also that he or she knows what they are doing and HOW to treat you properly too. That IS what you pay them for, after all.

I can write volumes about how our health system is so fucked up it’s unbelievable, and I don’t use those f-bombs lightly. It’s unreal. We pay doctors, whether they do anything or not. I can’t tell you the number of times we’ve gone into a doctor’s office, spent less than 15 minutes (sometimes less than 5), paid an average cost of $300 bucks, just to be told that my labwork looks fine, there’s nothing they can do for me.

Seriously. I can read labwork. The new laws even allow me, if I’m willing to pay for it myself, to do almost any labwork on myself that I want. I can take blood tests and see the levels all come back in range, and I don’t have to pay some guy for that privilege. A doctor is a lot more than that–or he or she should be, anyway. A doctor should look at your symptoms. He should listen to you when you’re telling him why you are there. He should make connections between labwork that might be at the right level, but is a little bit off and sort of leans toward matching something you’ve told him about yourself. He should coordinate with your primary care doctor and other specialists to ensure that treatment is consistent and not at odds with any other treatments. He should know your medications and verify that none of your medications will interfere with any of your other medications he prescribes you and that none of them will cause or worsen any of the symptoms or conditions you already have. There is so much that she or he should do, and you can’t do that in 5 minutes and a blood test. And you sure as shit don’t deserve $1200-1800 bucks PER HOUR for doing that.

No way. No how. No, sir!

I can’t tell you how many offices I sat in where this is the scenario and how many times I left, staring straight ahead, blinking rapidly, numb and angry and disillusioned, one more time.

So when I found one doctor who sort of tried to do something different, I jumped at him and stuck like glue and refused to let go.

And he almost killed me.

Seriously. I believe with all my heart if I’d stayed with him, I would have died. If I’d listened to him and done what he wanted me to do, I would have died. But I didn’t know what else to do. I didn’t have the strength to start over again.

My salvation came in the form of an appointment with a doctor I’d been trying for over a year to get an appointment with–a specialist in CTEPH, a doctor who I just learned is building a CTEPH center to do PTE surgery here locally in the Houston area–and with one appointment, everything I’d been wanting for the past four years, everything I’d been asking the other doctor for… everything. She gave it all to me, without even having to ask.

Of course, it resulted in a 12-day hospital stay, but I know I needed it. I probably still need to be in the hospital, but like she said, they can’t keep me in there forever, and I have a life I need to try to live here at home, but she’s given me hope.

For the first time in four years, I have a lot of hope.

And if I had stayed in the bad relationship I had with this other doctor–who wasn’t a BAD doctor, per se, but it WAS a bad relationship–I’d have never found this help and I wouldn’t be improving.

And I am improving. I have a new primary care doctor who truly coordinates my care and sends me emails asking me how I’m feeling every so often, just to check on me even when I am not coming to see her. She also does a lot of work via email and phone, which saves me trips to the office and saves me co-pays. Sweet. She cares about me as a patient, not me as a potential billing client. My pulmonologist is straightforward, to the point, direct–almost abruptly and rudely so, and I love her. She’s honest with me. I will always know where I stand with her, and that helps me build trust.

After that absolutely horrible procedures I had at the other hospital, I had three major procedures at the new hospital while I was there and all three went perfectly smooth. There was one small glitch with an IV that blew so I wasn’t getting any sedating medication and my blood pressure was super high because I was super nervous, but the procedures themselves were so easy. They went so quickly too. It was amazing.

I think of all the fear. I think of the tears I cried. I think of the failed right-heart cath at the other hospital and how the doctor had BLAMED me for it, saying it was my fault he couldn’t advance the line. But then I saw the bruises all over my chest when he did it, and then not a single bruise on me when the other docs did it. I know now it wasn’t my fault. THEY screwed up, not me.

My mother asked me, “Do you wonder now why you stayed with that other doctor for so long?”

And I do wonder why. It’s sort of like when you break up with someone and you realize the relationship was over WAY before you actually ended it, and you’re relieved when it’s finally over.

I’m relieved.

But unlike a romantic relationship, I absolutely cheated on my doctor. I went and got that second opinion BEFORE I left his office. I sneaked around, got my own records and took them instead of doing records requests, and I read through them and saw all the things that were said about me, and I took what the doctor needed to see, and left that other stuff out.

And now, I need to do one more thing before I move on with my life and put this part of it in the past…

I need to break up with my doctor.

And much like many relationships end up in court, this one just very well might end up there too, because I’m seriously considering legal action. I’m not a sue-happy person, but I think I’m more than justified, and this new doctor is helping me feel well enough that I just might have the strength to fight for myself.

And thankfully, gratefully, *I* will be fighting for myself instead of my family fighting a wrongful death lawsuit, which is very well where this could have ended up.

I’ll share more on this as I go along, as I’m hoping to write and update here more regularly now. I’m no longer blocked on writing here because I finally took a stand and moved away from the numbness, the stall, the anger, the fear… I’m moving in a positive direction again.

But I want you all to really take a lesson from this: If something doesn’t feel right about your doctor, get another opinion. Go to another doctor. Yes, that might mean you have to see 5, 7, 10 doctors. See as many as it takes to find that one that believes you, that sees what you see and is willing to work toward a solution with you. Don’t settle for one that only makes your tests on a piece of paper look good–find one that helps you FEEL better. You are more than a piece of paper. You are more than a patient number. You are more than a patient payment.

Keep looking until you find a doctor who is willing to value your life as much as you do.

And just because your doctor was good in the beginning doesn’t mean you’re obligated to stay if things change or you feel his treatment isn’t aggressive enough or proper protocol or you want to try something that he doesn’t, etc. Changing doctors is expected. It’s not personal. It’s your life. You have that right.

You deserve the best care you can possibly find. Keep looking until you find it.

I’m glad I did.

Love and stuff,

Michy