Becoming your Own Patient Advocate

Once I was diagnosed with primary hyperaldosteronism, I thought I was home free. I had a diagnosis after all, what more was there going to be besides a prescription or two and some follow up visits? Boy was I was wrong. There was so much more, including endless blood work, AVS tests, saline suppression testing and urine screening tests. And then there were the doctors, health insurance companies, prescription medications, family discussions and my job. I needed help trying to balance everything.

What you Need to Know

After having not one but two horrible experiences with endocrinologists being rude, insensitive, uninformative and generally unhelpful, I knew I was going to have another battle on my hands. Luckily I found the right one, but I had to do a lot of shopping. My advice is to start your research on-line. Yahoo groups has an hyperaldosteronism group where a lot of patients exchange doctor recommendations or those to avoid. The second way, which can often the the best, is to ask anybody and everybody you know that has or had an endocrine problem if they like their doctor. If that doctor only specializes in certain diseases, i.e. diabetes and not P.A., ask that doctor if he knows another endocrinologist who would. Personal referrals are the best--it's how I get most of my business and it's also how I found 2 very good doctors of my own. My third endo came to me by way of a well-known surgeon I had done translation work for. Distraught and desperate, I called him one day for some advice and not only did he give me the name of a good endocrinologist, he also said he knew my condition well and could operate on me if that was my option. It worked out perfectly.

Research~
After you get your endo, the next step is to go back on-line and research as much as you can on what this disease is about, including treatment options. This can get a little tricky since P.H. is rare. Some sites may have descriptions that don't include all the tests you'll need to take, while others don't list the many side-effects you may be experiencing. You just have to be vigilant and keep looking. Joining two support groups educated me about medication options and helped me realize I wasn't alone with all that I was feeling. (Support Groups listed on the front page of this blog). Having someone to complain to who understands can be so helpful. Sometimes it's easier to talk to strangers who are experiencing the same things as you. The more we communicate with each other, the more we can learn.

Health Insurance Coverage~
The next thing you need to do is find our what your health insurance provides for. If you've lost your plan (we all have done this, don't worry), contact their human resources department and they will send you out a copy. If reading all the medical terminology is too hard, contact this group, http://www.patientadvocate.org/
It's their job to help you understand your options and your health plan.

Get Copies of your Test Results~
Always ask for copies of all your test results, they are yours and by law you have a right to them. This can help also with the mountains of paperwork you'll receive from the insurance company. The more information you have the better equipped you'll be if there's a billing discrepancy. If you don't like the treatment you received from your doctor (he has to be very bad mind you), don't pay the bill, contact first a patient advocacy group (if he is in a hospital, they will have one). If he's not in a hospital, contact the patient advocacy group listed above, hopefully they can help. You may also call your insurance company and explain your story. You may not have to pay or at the very least may get a discount. Remember, you would complain if your service was bad at a restaurant, why stop at food when it's your body at stake?

Talk to Your Family and Close friends~
This can be hard for many of us to do. Originally I wasn't going to tell my family for a variety of reasons, one of which being I have an ailing, elder parent that requires constant attention. But when I kept missing family events because I was so exhausted or had muscle spasms, they had to know and I'm glad I was honest. You owe to yourself and your loved ones to let them know that your electrolytes and hormones will be off-balance and things can get scary. You will miss events, you will be very tired. If you don't tell them, your disease will come out sooner or later by you either passing out, or acting aloof or in a fog. So talk to them and hopefully they will support your journey to wellness. If they don't, join those support groups I mentioned or confide in one good friend. We all need a shoulder to cry on, no one is exempt.

Treat Yourself Well~
You will have off days, this is a fact. But don't be hard on yourself, it will only make you more discouraged. Try to do nice things for yourself such as massage, manicures, spa days or a girls nite in with a movie or a martini. The better you treat yourself the more positive your attitude and the better you can fight those aldosterone blues.

Act as Normal as you Can~
Get back to your old routine as quickly as possible. This may sound weird but it helps. There was a time that I let this illness take over my life, it was hard stopping it. But I got so tired of being tired, I decided to do something about it. I started to work out again, it had been at least a month and I felt it. At first I really had to push myself, but now it's very normal. Even if I'm exhausted, I'll get on the treadmill for at least 25 minutes 3 times a week to give me some much needed endorphins. This helps with the high blood pressure part of the disease too. As well, I try and get together with friends/family when I have my good days. It may just be one day a week, but I still make the effort. Try to be positive, you will get better... the tests and results seems to take forever, but you will get there. I'm almost at surgery and I feel very hopeful finally.