Navigating healthcare services?
March 17, 2012 3:49 PM   Subscribe

How can I be the best advocate for myself getting the best health care possible with a myriad of complicated chronic health problems and symptoms while on medicaid?

I have been having a lot of difficult health problems prior to and after having an emergency gall bladder removal. After the gall bladder removal I had symptoms such as turning yellow, vomiting after any large meal or processed high fat foods, extreme headaches followed by vomiting, severe back pain and difficulty walking, dark urine, muscle aches, extreme fatigue, difficulty moving, stomach bloating and rashes on my stomach particularly the right side near the surgery but on other areas of my body as well, mental confusion particularly associated with stress and with large meals.

The symptoms come and go and I have found that reducing stress and eating a very healthy diet with a lot of fruit and vegetables and quality protein seems to reduce-- but not eliminate, the symptoms. I have been losing a LOT of weight which is hypothetically good but it's not happening because I'm doing anything much differently and I'm a little concerned as that can be a symptom of liver problems as well (And I just keep losing it, I'm not trying to do anything, I'm down to 125 from 180)

I went to the doctor in the year after the surgery to discuss the symptoms but I only got a few symptoms in (vomitting after heavy or poor quality meals) before the doctor dismissed my concerns as being "normal" for post gall bladder removal.

I don't feel like this is normal and I have a lot of friends who have had their gall bladders removed. It sounds like there is more going on with my liver and possibly kidneys (or who knows?) than just usual gall bladder removal issues. It's been three years now and I still have bouts with severe stomach bloating and rashes, occasionally turning yellow, severe headaches with vomitting, mental confusion after meals that are not really that big, chronic fatigue, daily back pain, not ever being able to sit up without pain, and dark urine.

When it's the worst I am usually not able to get to a doctor and by the time I get to the doctor the symtoms are better and I forget them and have a hard time advocating for myself how bad they are. (I get easily intimidated by doctors and start thinking I'm exaggerating everything and forget what the symptoms even are.)

I'm writing a list of symptoms so that I will not forget and I want to have a try at getting better response from a doctor, but I am wondering if anyone has any advice if the doctor minimizes my symptoms or declines to want to do any tests. I really want to know what is going on in my body and have professional opinion on what I can do to improve this. I would also like a professional diagnosis so that I could potentially get home health services when the fatigue is so bad it's hard to move. My family is helping but I have a young son and we could all use some additional services.

As you might imagine I have been struggling to work and do school with these issues and I'm not sure how to improve my economic situation without addressing these health issues. I'm planning on sitting down with the social services at the local hospital to ask about what services might be available and how to access them and I am wondering if anyone who has done this or worked with this system could offer any pointers for how to best advocate for the kind of help I need or knows what might be available for these kinds of conditions so I can try to assert I get the best that could be available if possible.
posted by anonymous to Health & Fitness (11 answers total) 3 users marked this as a favorite
Here's what you say to a doctor:

I am having symptoms X, Y, and Z (from your written list). I cannot focus at work/school (or I cannot attend work/school), I cannot perform my daily activities, my relationships are suffering, etc.

So, instead of "sometimes I vomit after eating" it's "I can't do a, b, or c anymore because this is how much my vomiting is affecting my life."

If the doctor says "well, that's normal, take these pills and see how you do," you say "no, this is severely impacting my quality of life right now, we need to figure this out. I need a referral to a specialist today."

Do not be intimidated, do not minimize your symptoms. Bring an advocate (mom? partner?) with you. Your suffering is valid and important! You deserve to have this treated. These last two items should be your mantra.
posted by desjardins at 4:07 PM on March 17, 2012 [1 favorite]

Medicaid is going to be an issue here. What they decide to pay for is entirely up to them, and though you can potentially appeal some things, you may well need a lawyer for that. Further, a lot of providers either won't take Medicaid at all or limit the number of Medicaid patients they'll take at any given time. Illinois in particular is having trouble with this, but all states have it to one extent or another. Medicaid only pays something like ten or twelve cents on the dollar, so providers generally don't like it.

Medicaid does have some provision for home-based care, but there are a lot of restrictions, e.g., it generally can't cost any more than providing the same care on an in-patient basis.

I think you might actually want to consider applying for SSDI benefits. If your medical condition is truly interfering with your ability to work, you're going to need to do something about that.

But without knowing where you are, it's going to be almost impossible to give more specific advice about institutional and community support. Medicaid is significantly a state-run program, and there are social services which are actually done on the county and even municipal level.
posted by valkyryn at 4:35 PM on March 17, 2012

i'd suggest trying to separate the things you are noticing into symptoms (things a patient reports, like pain and nausea) and signs (things a doctor can see, like yellow skin and dark urine).

doctors will often consider patient-reported symptoms to be "subjective" and doctor-observed signs to be "objective". this way of thinking maybe isn't always best for everyone involved, but it is what it is.

try see a doctor at a time when you are able to both talk about symptoms and demonstrate signs, and try to give both equal emphasis.
posted by sanderman at 5:16 PM on March 17, 2012

If you say you've been having intermittent jaundice, dark urine, confusion, and your doctor doesn't want to do ANY tests, you need a new doctor.

Agree with sanderman that you need to focus on the more objective symptoms initially. You can get into the other stuff later, but if you open with "I've been having headaches, muscle aches, back pain, nausea, vomiting, and chronic fatigue for the past 3 years" - I'm not saying this is how it should be, but a lot of people will then have less concern for whatever the rest of the story is. In medical speak we call that a "positive review of systems" and I can tell you that in emergency medicine it definitely seems to correlate with not having an emergent condition (i.e. the likelihood of having an emergent condition decreases with the number of symptoms the patient is complaining of) and with personality disorders.
posted by treehorn+bunny at 6:44 PM on March 17, 2012 [1 favorite]

one other kind of tracking you may want to do is in journal form, day by day: how was your level of functioning at work? how were the symptoms? anything else very out of the ordinary that day (way too little sleep or stress, for instance)
posted by spbmp at 6:51 PM on March 17, 2012

I don't know whether this is something you can come up with a name for and present it up front after a little research: "I think I'm having liver problems following a gall bladder removal because (symptoms)."

I suggest this approach because I spent about 15 years telling doctors that after having a cold or in cold weather, I would wake in the night for WEEKS coughing till I puked plus having attacks during the day sometimes. They'd give me cough medicine that didn't help. Finally after some research I said "I think I might have asthma because ..." and then I got some tests and an inhaler.
posted by Occula at 7:04 PM on March 17, 2012

What would happen if you called 911 when the symptoms are severe? "I'm vomiting severely and can't even drive myself to the doctor." You might want to look into the costs that could result, but honestly, your health is more important than your finances. At the times that you're too sick to even seek out medical help, you may actually need emergency medical help.
posted by salvia at 7:14 PM on March 17, 2012

This is just Google-fu, but part of this sounded familiar with stuff my SO got warned about when she had hers done, so I found this. Question 7, at the bottom. Given that? Get a new doctor.

Chances are *very* good that Medicaid will cover an ER visit, but that's going to depend on your state; if you get a mod to indicate maybe someone can help look, or you can message me. If they don't, call your nearest hospital. You probably don't have to go in to just ask. Most hospitals are not-for-profit and provide a certain amount of charity care to people who are low-income. I'm not a doctor, but I have a feeling that "vomiting and jaundiced" is going to be seen as potentially emergency enough to warrant the visit.

But stick with those symptoms. Chronic pain is something that unfortunately is pretty prevalent even in people who don't really have a medical condition causing it, and doctors are wary lately about people who are just looking for narcotics. Fatigue is just really common in general and a symptom of so many things, including just 'life' and 'stress', that it doesn't help to differentiate. Ideally, get to a doctor at a time when they can see the rash, the jaundice. If you can't do that, take pictures if you can.
posted by gracedissolved at 11:12 PM on March 17, 2012

Also, photographs and physical evidence. Yes, I know, but.

Turned yellow? Picture of yourself, preferably where you're the darkest yellow against something that shows the color.

Dark urine? Tupperwear a sample.

Your goal is to prove there is something wrong. You need evidence. You are a detective, the case is your health, the judge is your doctor, and you need to give him something to stop him from dismissing you.
posted by mephron at 12:18 AM on March 18, 2012

And track the weight loss. Unintentional weight loss is an important symptom.
posted by Sidhedevil at 7:07 AM on March 18, 2012

Lots of good answers above.

Consider taking a polite but assertive friend when you go to the doctor, someone who can help you when you're feeling intimidated & shut down. Both of you should focus on being firm but polite.

Definitely take your written list of symptoms & signs, including the weight loss but also take your Questions & Goals in writing to help you make sure you get through them all.

Finally, I would say that you are doing a great job so far. It must be frustrating to be dismissed and ignored by the medical system, especially when you're exhausted and in pain, keep at it and trust yourself.
posted by Heart_on_Sleeve at 5:01 AM on March 20, 2012

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