What is so hard about sharing medical records?

July 11, 2013

I put a file into Dropbox on my computer, and suddenly I can access it on my phone or on another computer’s browser, as long as I have the password. The technology is there, so why can’t we share medical records?

My last rheumatology appointment was good, but it could have been better. It would have been nice if she knew what blood tests I’d had done lately. Unfortunately, she had zero information on that. I have some info, but it was at home. I hadn’t thought to bring it. Digitalization of medical records has been spreading and I love it. Unfortunately, at best it has been happening within individual medical practices and hospital systems, but not across them. This means that if you see 5 doctors at Beth Israel, they can all see each other’s tests, notes, comments, etc. However, if you see 4 doctors at Beth Israel and 1 doctor at Mass General, the Mass General doctor can’t see anything from the others. And this is what happened to me at my rheum appointment. She had just switched to a new hospital. The old hospital was supposed to send my records over months ago, but they’re backlogged and hadn’t gotten to it. Even worse, none of my other doctors are in this hospital system, so she can’t see their notes, either. We were stuck.

As for me, I can only see certain things from one hospital. Thankfully, that hospital realizes how useful it is for patients to see their own medical info. I can’t see everything, but I can see most test results. That’s fantastic! Unfortunately, I can’t see any other information, and the other hospital networks I’m using don’t have this option as far as I know.

I’m certain it doesn’t have to be this way. Yes, it’s important to have security measures in place. I definitely don’t want random people seeing my medical information! But should I be able to access my records whenever I want? Why must I make multiple phone calls, pay a fee (paying a fee to see my own records is absurd!) and wait for weeks or even months just to see my own records? Why can’t my doctors all see each other’s notes and labs? It would improve my healthcare greatly!

It is unrealistic to assume a patient will only see doctors in one hospital network. In fact, that’s one reason my original diagnosis was delayed for so many years – my PCP refused to refer me outside of his network, and they didn’t have the right specialist. If I’d been sent to the right specialist, I could have potentially been diagnosed many years earlier and had very different outcomes.

I have been going to the trouble of getting copies of all of my labs over the last several months. It’s a big effort, bigger than it should be, so far, it’s been worth it. And that’s why later today, I’m going to head over to the library to copy those labs (yes, I know photocopiers save images, but what choice do I have?) I’m seeing a new doctor in a new network in a few weeks. I’ve been waiting for months to get into this particular practice and I finally have an appointment. Unfortunately, he won’t have access to any of my medical records, so it’s up to me to bring them. I will spend time, energy, and money to make copy after copy. Then I will bring the large stack of papers with me, and it will be up to the doctor to find the relevant ones, since there won’t be any easy sort or filter options as there would, or at least should, be on a computer.

This system is harder than it needs to be and it’s hurting patients. It needs to change. If the goal in seeing doctors and other medical professionals is to get healthy, then shouldn’t this be considered a priority?

1 Comment | Educating, Expectations, Frustration, Healthcare, Limitations, Politics, Rants | Permalink
Posted by chronicrants

Don’t punt me

July 10, 2013

The best thing a doctor can say to me is, “I don’t know.” Well, ok, that’s a lie. The best thing is, “Here’s a cure.” But if they don’t know the answer, then the best thing is, “I don’t know.” As soon as a doctor says that, I know I want to keep seeing them.

The problem is, too many won’t admit when they don’t know the answer. Of course, this isn’t a problem that’s unique to the medical profession. I know plenty of people who do this in their jobs and outside of their jobs, because they think that there’s something wrong with admitting they don’t know absolutely everything about a topic. I’ve had a lot of problems because of that kind of attitude in the past, so now I know to watch for it and avoid it.

Last week I mentioned that my finger was swollen and painful and that I was happy to ignore it. Well, after a few days it got numb and changed colors, so I thought maybe I should get it checked out. My primary care physician (PCP) wasn’t in, so I saw a physician’s assistant (PA) in her office. The PA said it was infected and prescribed antibiotics. She didn’t seem completely confident, but it did make sense. She told me to come back if it wasn’t much better in 48 hours. Three days later I saw her again. The discoloration was worse and the skin had hardened. She said that she thought it was healing, but clearly she wasn’t sure. She got a nurse practitioner and the NP told me that she thought it was getting better, and if it didn’t get better by the time I finished my antibiotics in 4 more days, then I should let her know and they would send me to a “hand doctor.” Yes, she actually said “hand doctor” to me! I didn’t like her lack of confidence, and when I mentioned that I was seeing my rheumatologist this week, she was clearly relieved. She exhaled and said that I should definitely have my rheum take a look.

She punted me.

She didn’t know what was going on, but instead of saying it, she told me to wait and see what happened, then to go to someone else if it didn’t heal. What kind of attitude is that?!? (And yes, I plan to leave this office after I get some insurance issues worked out – clearly they are not the right ones for me.) If she had told me she wasn’t sure what was happening, I would have respected her honesty. Instead, I found myself distrustful of both the PA and the NP, and nervous about what was happening with my finger.

I did see my rheum. She didn’t know what was happening, but she was honest about it. She felt that it was an infection that was healing, but the spread of the discoloration made her wonder if there was an infection under the nail. She said that she didn’t have the tools to check that, and it wasn’t her field anyway, so she wanted me to see my dermatologist. She asked who I saw, and was pleased that it’s someone she considers to be very good. I asked her if I should wait until I finish the antibiotics to see what happens and she said no, that I should be seen as soon as possible. Now THAT’S how you handle an uncertainty! She told me what she thought was going on, admitted that she wasn’t sure, told me which specialist to see, and insisted I address it immediately. BINGO! There are many reasons I love my rheum, and that’s a big one.

I’m going to see the dermatologist later today. I have seen many people in that office and liked them all. I am seeing a PA today who I have never seen before, because she was the only one with a last-minute opening. Still, I trust that they will treat me right, as they have before. And I refuse to be punted again. I want answers or recommendations, and I won’t accept anything else.

2 Comments | Expectations, Frustration, Healthcare, Medication, Rants, Unpredictable | Permalink
Posted by chronicrants

And the insurance nightmare continues to wreak havoc with my life

June 19, 2013

I haven’t updated you on the insurance nightmare in a while. Sorry about that. I guess I’ve been trying to ignore it. And now that I think of it, it’s funny that I chose to describe it as a “nightmare,” considering how it’s been messing with my sleep.

For those who don’t know, the short version is that I left my job a year and a half ago when my health took a nosedive and I received payments from short term disability insurance. I expected to return to work long before that ran out, but my health was worse than I’d wanted to admit to myself, so I used up STD and then applied for long term disability. LTD denied me, so I hired a lawyer and appealed. The company’s response to the appeal was due more than 4 months ago, so of course they haven’t given it to me yet.

Now that you’re caught up to everyone else, here’s the latest: I still don’t have a response. The company wanted me to see an independent medical examiner (IME) and a field investigator. If I said no, they’d deny my claim. I guess they’re still looking for some way to deny me? I don’t know. I saw the IME. I met with the investigator. Both went well, I think, but it’s hard to really know.

Of course, both appointments were horrible and exhausting. Both involved local travel. Both were long, a combined total of 4 hours split over two days. And both were incredibly stressful. What if I said the wrong thing? What if they didn’t believe me? What if they thought I seemed to healthy? I need the money, but it’s also the principle! How dare they deny my legitimate claim! Especially when so many fraudulent claims go through. It’s just so wrong! So I had to make them understand.

When the time came for each meeting, though, it wasn’t hard to be convincing. I didn’t sleep well before each one. I was pale and puffy. The stress wore me out. By the end of each meeting, I was so fatigued that I had trouble focusing. I could barely understand what was being said. By the end of the second one, I was having trouble sitting up. How observant were they? Did they notice the way I rubbed various joints while I spoke? Did they see my twitching fingers? Did they realize that I didn’t stand up to say goodbye not to be rude, but because it took too much effort? I may never know.

I’m still in wait-and-see mode. I don’t know how long they will take to respond. I hope that it’s quick, because in a month and a half I will lose my health insurance if they haven’t made a decision. I suppose that’s a story for another day. Still, it’s all part of the same thing.

So instead of hanging out with wonderful friends tonight, including the one I mentioned the other day, I am home alone. Instead of having a fantastic time (because in our 20+ years of friendship, I don’t think I’ve ever seen them and not had a fantastic time,) I’m sad and lonely. Instead of feeling bad in the usual way, I feel much worse.

I need to get healthy. I need to get healthy so I can see my friends, date, and go back to work. And so that I can find a way to change this barbaric insurance system.

2 Comments | Fatigue, Frustration, Healthcare, Isolation, Limitations, Rants | Permalink
Posted by chronicrants

Those three magic words: “I believe you”

June 12, 2013

I saw a new doctor today and now I’m beyond exhausted. Sitting up is unpleasant. I feel like my whole body is screaming at me to go rest on the couch with the tv and some popcorn. And who am I to deny my body what it wants? So this will be short.

The doctor I saw specializes in hard cases. He also sees a lot of patients with fatigue. Still, I was doubtful, and I think he could tell. He asked a lot of question – the most thorough questioning I’ve ever received (and I’ve received quite a bit!) At one point he asked if I ever get pins & needles anyplace. I said yes, and told him where. Then he asked if any of my doctors had ever addressed it. I was shocked to realized I hadn’t discussed it with them. Well, I had told one, but he said it was nothing. This guy disagreed. I tried to explain that I always filter what I tell doctors, trying to focus on the biggest issues, so they don’t think I’m a hypochondriac or something. He immediately understood, and said that he knows it’s common for patients to be ignored if they mention too many symptoms. It was amazing! He got it!

But there was one thing that wowed me more than any other. More than once, he uttered those three little words that every patient with a hard (or impossible) to diagnosis illness wants to hear: “I believe you.” I can’t tell you how amazing that felt. Here was a doctor who had read a 2-inch thick pile of my medical records, listened to my story once, and believed me! I don’t think this has ever happened to me before! Sure, I’ve had doctors believe me, but usually I don’t know that they believe me until after several visits, or maybe months or years of treatment. I know that my parents believe me. So do some friends. Other so-called friends (now ex-friends) did not believe me. Employers did not believe me. Strangers did not believe me. And yes, doctors and other medical professionals did not believe me.

I don’t know if he saw my tears. I didn’t want to call attention to them, but I didn’t want him to think I was upset. I was just so relieved! He believed me. He believed me. THE DOCTOR BELIEVED ME!

Since this is a short post, here’s a related bonus. I am so sick and tired of trying to convince people that my illness and disability are real. I am also tired of trying to convince them that ableism is real. Same with sexism and biphobia. So while this article is about sexism, I think it can be equally applied to all of the other -isms. I’m looking for justice and equality. I am happy to educate the uneducated. I will not tolerate the hateful.

2 Comments | Educating, Expectations, Fatigue, Frustration, Healthcare, Isolation, Milestones, Pain, Raves, Support, Symptoms | Permalink
Posted by chronicrants

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