Musings as a patient, not impressed

I have been putting off this blog because I don't know where to start. There's so much to say, so much has happened, I feel like I could go on and on writing a book. So I guess the best thing to do is start at the end and work backwards.

I am experiencing a new life as a patient with a chronic illness. And it has scared me to death. Not because of the illness itself, or the treatments, or even the thought of death, but what has scared me is the exposure to the world of medicine I have had as a patient. Sure, I've seen the good, the bad, and the ugly as a nurse and a midwife. But when you are sick and vulnerable, it is amazing the verbal and mental abuse you are subjected to.

I am writing this speaking from someone with medical knowledge,I simply cannot imagine how many people have died from receiving poor treatment, people who were blown off, misdiagnosed, mismedicated, blown off, who either died or suffered because of it. the number must be simply staggering. And yet, we, as a whole put up with it. We forget we are hiring the doctors. We are the consumers, doctors are not god, they aren't better than us, smarter than us, it is simply their job. But many of them abuse that power and we stand by while grandma dies.

My experience today is such an amazing one, it's going to sound unbelievable. Iknow when it was happening and throughout the day I have been simply stunned, replaying the scene, trying to make sense. And I'm going to mention the doctor by name, hey, if he decides to prosecute for slander, I would love to go head to head. I already have the forms to file the complaint against him, so bring it on!!!

I saw this particular doctor, Dr. Behnke, of Cumberland Valley Endocrinology during my last pregnancy when I developed gestational diabetes and was put on insulin. We had a good relationship, I thought he did a great job and was pleased. I didn't need to see him since because my thyroid problem was stable on medication and my diabetes disappeared.

Then my health went downhill this fall. I will comment more on that later, that's a whole post or two itself, but basically I had to go to yale university to get some answers. And the doctors there were great, they did an amazing thing: THEY LOOKED AT MY MRI THEMSELVES AND LOOKED AT MY LABS! Wow, what an interesting concept. And the conclusion was made that my pituitary tumor, although small, is in a bad place, in the lower rear portion of the gland, where cortisol is produced. The endo there told me I was just unlucky because many people have these tumors and they are harmless.

Yale told me to follow up with a local endo, so I called Dr. Behnke back and made an appointment. When I saw him today, I had pulled out some letters from other doctors addressed to him, my mri reports, and hormonal lab work. Seems simple enough, I just need to take the medicine for now since surgery isn't really an option. I have developed diabetes insipidus, secondary adrenal insufficiency and my hashimotos antibodies are up. This appointment was to establish treatment with him to follow my meds and labs.

He didn't look at anything I gave him, told me he didn't understand "the whole Yale thing", and then wheeled himself over to me, and told me I should seek psychiatric care. Uh, what? OK, my first thought is that anyone going through hormonal issues and chronic issues might suffer depression and anxiety, maybe that's what he is talking about.

No,he thinks I am seeking attention,that I don't need an endo, I need a shrink. Wait, I say, did you see the notes, the lab results, the tumor. He begins to do probably the most annoying and patronizing thing any doctor has every done: He begins to shrug his shoulders with each question and say things like "i don't know", "what do you want me to do", "what do you think this means", OMG, what is going on.

here are the difficult questions I threw at him (remember, he is an endocrinologist, by definition someone who studies and treats the endocrine system!!!!!)
-He says why are you here, what do you want me to do? Very rude tone. I tell him what yale docs say about following with meds and labs. he tells me he doesn't know how to do that? OMG
-I ask how to know if my dose of hydrocortisone is right or needs adjusted, he shrugs and asks one of above questions.
-I ask about the DI and whether I should go on DDAVP, the standard treatment, recommended by Yale, he shrugs and tells me he knows nothing about DI and doesn't know what DDAVP is, IAM NOT MAKING THIS UP, I SWEAR
-He tells me that he would want to run all the labs again if I came to his care, I ask why,since I had them done, but if he felt it necessary, I would consent. He agains say maybe a psych consult would be more appropriate than an endo visit. I tell him the list of hormones the neurologist and yale said could be affected with pituitary misfunction: FH, LSH, Testosterone, Prolactin. Honest to God, he tells me his is not familiar with FH, or LSH, and doesn't understand why they would run a testosterone since I am a woman, now I am starting to think he is screwing with me because that's impossible he wouldn't know, so I decide to play the game and ask several more questions:
-what about growth hormone, should that be tested (over exaggerated shrug, "why, what do you think that means")
-ask him difference between addisons and secondary adrenal and how do I know my adrenals are OK (good question, I'm afraid I don't know, what do you want me to do?)
-tell him Yale mentioned a water deprivation test and wrote an order, did he want me to go ahead and do that or wait and do that with him (what's that test, why do you think you need that, I dont know why you would need that? for DI? I'm not familiar with that)

This goes on several minutes, I am so angry, I am ready to explode, cry,curse, I don't know what. But I tell him I will have the Yale docs send him a letter explaining their finding and recommendations (they can do that, but I don't understand what you want from me, what you are seeking here)

I tell him that I only have 30 days worth of hydrocortisone and need a refill, he says "if you really feel you need it, I guess I can give it to you", Huh, what am I? drug seeking, who the hell drug seeks for that?????

I tell him they increased my armour thyroid, he tells me he wants me on synthryoid, I remind him we tried that before in his office and my blood pressure kept going up, and didn't he write the script for synthyroid (why do you feel the need for armour? what are you looking for with that med?)


He tells me I am unstable to work,not because my health is in the toilet, but because he thinks I need to see a shrink and example the meaning of why I am doing this (uh, what, having a tumor? or autoimmune problems) and asks where I think Jesus fits in (whoa, there, buddy, where did that come from). I tell him I have a pastor who is helping my family deal with the spiritual realm, thank you, but what I really needed from him was meds!!!!

So that's it in a nutshell, I know those reading this are going to be like "no way, that's absurd". yeah, and either he was being an ass or he really doesn't know, either way, I am filing a complaint against him with the state board and the association of endocrinologists. I mean, if this is over his head, or he doesn't feel comfortable treating the complexity of it, say so, let me know, tell me that, but DO NOT treat me like a mental patient and then start shrugging and nodding like I am 2 years old.

My mother suggested that i take a tape recorder to all future doctor reports and a notebook, where I write their responses, obnoxious, yeah, maybe, but necessary, seems like it is absolutely necessary. I wasn't going to go back to him at all, but I think I will with tape recorder and my husband, it's amazing the difference in how I am treated when my husband is around, isn't that a sad, sad, thing. As a midwife, I encourage my patients to write down questions, I write out my instructions, give tons of handouts so they don't forget, and would have no problem with a tape recorder.

I seriously think that this illness and all these doctors (I have other horror stories I'll save for another day) are God's way of pushing me into becoming a family nurse practitioner to help others who are mistreated. Hasn't it always been throughout history, the hysterical woman will all the problems, including asthma as late as the 50's and 60's. That women are just fragile beings seeking attention at the doctors, incompetent of being able to judge their pain level, normal fatigue from abnormal. Why do we put up with that? We need to have a group, similar to PETA, a group for the ethical treatment of women, perhaps even volunteers to go with the elderly, mentally challenged, heck, even me, who will act as advocates.

I am totally OK with doctors who tell me they don't know what's wrong, who tell me they need to call another doc, or refer me, thanks for the honesty, i do the same thing. I don't expect doctors to have the answers or the magic pill, by dammit, I expect to get my money's worth during my 15 minute visit, and being made fun of is totally not appropriate.

If anyone reading this has copies of sample letters of complaints, organizations that advocate for patients in situations such as this or any other ideas, let me know!!!! I hate the idea of suing people, but unfortunately in this society, especially in the medical field, it seems the only time change is made is when someone is sued and exposed!!!

OK, that's plenty of reading for tonight for everyone. I hope to continue this saga, backwards over the next week or two, but I can't promise anything, I am not consistent, I know that.

TTYL,
Barb