OpenNotes Improving Quality of Care Video

I was recently interviewed for a video highlighting OpenNotes: http://bcove.me/c9qan6ld

Patient Blog Post for BIDMC

Here's a blog post I wrote for Beth Israel Deaconess Medical Center from a patient's point of view regarding Open Notes, where patient can read notes from their doctors:  http://www.bidmc.org/YourHealth/BIDMCInteractive/Blogs/HealthFirst/2014/July/OpenNotes-Eileen-Hughes.aspx

Feeling Better

Do you know that old saying that without good health, you’ve got nothing?   I finally see that it’s true.

 

One of the medications that I take for my hypocomplementemic urticarial vasculitis takes three-to-six months for it to work so in the meantime, I’ve been taking Prednisone.  Prednisone, if you don’t know, is a steroid and a powerful drug – it works to keep my weird reactions to a minimum by suppressing my immune system but, the side effects are tough. I’ve had nausea, loss of appetite, insomnia and huge increases in my blood sugar levels.  I had to increase my basal dose of insulin by 30 – 35 percent to keep my blood sugars under control. The more insulin I take, the greater the chances of weight gain. The higher blood sugars also cause nausea so with nausea already being a side effect of the Prednisone and nausea from the elevated blood sugars; I haven’t had much of an appetite for the last few months. For someone who loves good food, this has been very challenging. I’ve had little or no interest to dine out or to cook. Fortunately, I got the okay to start cutting back on the Prednisone a month ago and hope to be off of it completely by late February.  I’m sleeping better, my blood sugars are back under control, I’m cutting back on the amount of insulin I’m taking, I’m getting my appetite back and instead of gaining weight, I’ve lost a little weight which I’m happy to see.  I still get hit with waves of exhaustion so I try to keep my activities, responsibilities and interests in check, but sometimes, I just have to cancel everything, crawl into bed and rest – not an easy thing for me because I always have a long list of things I want to do (not necessarily things I have to do). Recent blood tests/CT scan/eye exam/chest x-ray all show that my kidneys, liver, lungs and eyes all seem to working properly with no complications. However, my white blood cell count is still low as are two out of the nine complement levels in my immune system. The complement system is a group of proteins in the blood system that works as part of the immune system. 

Type 1 diabetes and Hashimoto’s disease have their challenges but once I got diagnosed and started to treat them, I didn’t feel sick.  The addition of hypocomplementemic urticarial vasculitis into my health repertoire has definitely made me feel more vulnerable.  A big reason for this is that HUV is rare so there isn’t much known about it.  I did some investigating to see if there have been any research projects and there have been but almost all the research results found were inconclusive.  With a suppressed immune system, I have to focus on staying healthy.  I’m eating better – more fruits and vegetables and whole grains – less animal proteins.  A good night sleep is a priority every night.  I try to keep stress at bay.  Regular exercise is crucial but I admit I haven’t been exercising regularly – the insomnia was brutal and I never had any energy or desire to exercise so this is something that I definitely need to work on. 

None of this is rocket science.  Even with so little information about HUV, the best way to treat it is to stay as healthy as I can -  much of this is in my own hands. I'm finally starting to feel better. 

Happy Anniversary

30 years ago today, I sat on the floor in my college dorm room drinking a gallon of water.  I was parched.  I could not satisfy the thirst I had been experiencing for a couple of months.  It started off slowly but the last two weeks were awful.  I had lost 20 pounds, had no energy, was drinking liquids all the time and constantly running to the bathroom to pee.  My skin was dry and cracked and my hair was falling out.  I didn’t have health insurance at the time and was reluctant to see a doctor but something was very wrong.  The next morning, I went to the infirmary at school.  It was full of students.  Flu season had arrived.  I told the nurse some of my symptoms and she looked concerned and brought me right in to see the doctor.  She asked if I could give her a urine sample, which of course I could since I was drinking and peeing constantly.  As I was talking to the doctor, she came back in, showed him something on a piece of paper and he turned to me and asked, “Does anyone in your family have diabetes?” 

The next day I was admitted to the hospital for a one-week stay with the diagnosis of type 1 diabetes. I didn’t know at the time if I had any relatives with diabetes although I did learn over the years that several relatives had it. No one spoke about it so I didn’t know the symptoms.  I quickly learned that I had a classic, textbook case of type 1 diabetes and started to take insulin right away.  The average blood sugar level of a non-diabetic is around 80-100 mg/dcl.  When I was admitted to the hospital, my blood sugar was 850 mg/dcl.  A very astute medical resident asked me “You must feel pretty crappy right now.” And he was right.  I had never felt so run-down and sick in my life. I didn’t know much about diabetes other than it could be managed with medication. In my case - insulin.

There was no question that I had to use insulin.  My blood sugars were far too high to try oral medication.  I quickly learned that there are two types of diabetes.  Type 1 diabetes (previously know as juvenile diabetes) is an autoimmune disease where the beta cells in the pancreas stop producing insulin and type 2 diabetes (previously know as adult onset diabetes) is where the pancreas still produces insulin but the body is not able to use it effectively.  Insulin helps breaks down carbohydrates into useable components that the body can use for energy.  About 5% of diabetics have type 1 diabetes. 

At the time of my diagnosis, my family doctor was getting ready to retire.  He was a lovely, older gentleman who took care of my mother, brother and me for over 20 years.  I had to find a new doctor and decided to see one that I saw when I was hospitalized.  All the literature I read indicated that diabetics should see their doctors regularly – every three months until blood sugars stabilized.  I went to see this doctor and wanted to check in and ask some questions.  He was dismissive.  He told me I did not need to see him unless something was going wrong.  I told him I didn’t’ know enough about diabetes to know if something was wrong.  He asked how I felt and I told him fine but I didn’t know if in fact I was fine. He told me I really didn’t need to be there and didn't need to come unless I was feeling sick.  I quickly realized I needed to find another doctor. 

Luckily, I learned that one of the secretaries at school had type 1 diabetes and she told me I had to go to the Joslin Diabetes Center.  I had been avoiding this in part to denial – I didn’t really have diabetes….it was just some weird phase I was going through, but finally admitted that I wanted/needed to learn more about diabetes and made an appointment. 

The doctor I got seemed nice.  He was young and just finished his residency at the Joslin and recently became a staff physician.  During my first appointment, we spent 90 minutes going over my health, my care plan, and all the tests I should have to get a baseline reading on my overall health.  When the appointment was wrapping up, he told me something that I thought was profound.  He said that his job was to help me learn more about diabetes, to give me the tools to manage it, but ultimately, it was my disease.  It was my choice to take insulin.  It was my choice to watch my diet.  It was my choice to exercise and it was my choice to stay healthy.  He told me he expected me to come in to our next appointment ready to talk and to ask questions. This was a new concept for me – I thought you weren’t supposed to question doctors.  If I had to get diabetes, I’m glad I got it when I did.  I was old enough to understand the complications that would likely arise if I didn’t take care of myself. But, I was young enough to dump any bad habits I had.  And, I was fortunate enough to get a doctor who showed me that I had a major role to play in my health.

30 years later, he is still my endocrinologist and we continue to work together to keep me healthy.  

Hypocomplementemic Urticarial Vasculitis

I know what you're thinking  - what the heck is Hypocomplementemic Urticarial Vasculitis (HUV)?  It is a rare autoimmune condition/syndrome/disease where my body attacks my blood vessels. I use all three of these terms because it's so rare, there doesn't appear to be any agreement on it's classification.  It initially manifests itself like a food allergy where I get swelling of the lips and hives -  lots and lots of hives - hundreds of them at a time.  For most people when they get hives, they'll fade with no mark in a few hours.  Mine hang out for several days and leave a mark that looks like a small bruise. This is because the blood vessels are attacked and bleed out.  If this goes unchecked, all my blood vessels - including those in my organs, eyes, connective tissue......can be permanently damaged. 

Hashimoto's disease/ Hashimoto's thyroiditis or chronic lymphocytic thyroiditis is an autoimmune disease where the thyroid gland is attacked by a variety of antibodies.  Luckily, my thyroid is still working but is compromised.  Currently, I take low level thyroid medication to reduce the strain on the thyroid and to see if it will help keep it working for as long as possible.

Type 1 diabetes is a an another autoimmune disease where my body attacked and destroyed the beta cells in my pancreas that produce insulin.  Insulin is a hormone that is needed to convert sugar, starches and other food into energy needed for daily life. Only 5% of people with diabetes have this form of the disease. I'm on an insulin pump where I get a continuous dose of insulin throughout the day and then take some more when I eat. 

All of these involve my autoimmune system going out of whack.  The hardest one of all for me is the recent diagnosis of Hypocomplementemic Urticarial Vasculitis (HUV).  There is little known about HUV but it is common for people who have it to have another autoimmune disease (I'm "very special" according to my doctors because I have two others). There hasn't been much conclusive research - doctors think it's genetic but what causes the body to turn the switch on/off for it to begin?  There is no cure.  Treatment options and medications are limited.  Side effects from the medications have been difficult - nausea, upset stomach, insomnia, headaches, elevated blood sugars (not good for a diabetic)....... but, I'm working with a great team of providers and we're trying to figure out a way to manage the symptoms and get me back to a place where I feel healthy again.