Friday, October 1, 2010

5 Tips for the Newly Diagnosed Chronic Illness

As a Health Activist who tries to be active in several online areas, I have found through the years that I find myself saying many of the same things over and over again. It's not that I'm being pushy or have an agenda... well, perhaps I guess I do.

I see patients suffering, especially in the initial stages of diagnosis. When I've been there and done that I don't want to see them have to go through the same trials and errors, so I try hard to pass on the information that changed my own life, and could change theirs...

My 5 tips for the newly diagnosed chronic patient

1. Ask for and keep paper copies of all doctor's office visits, but especially lab reports and imaging reports.

Stash them away in a special folder with your name on it, or a three ringed binder for future reference. Because you have done this, you will no longer have to wait for precious records to be transferred in case of emergency or physician change. Sometimes labs and records are misplaced. Sometimes bloodwork accidentally wasn't run at all. With this information you can check back knowing what labs should have been done and cross reference with those that you have results for. You may notice flags that were not seen in your doctor's quick once-over and this gives you the opportunity to ask about them. You will know nothing has been missed or overlooked. Two weeks is usually plenty of time for all labs to come in and be reviewed, so make it a habit to call for copies then. You can keep an eye on your progress and will be more likely to notice patterns than either your doctor or their staff. You are the expert of you. My doctors know that when my labs come in, I will ask for a faxed copy to be sent to me. It has become automatic for them to do this.

If you have trouble getting these reports, usually asking the staff "Have you read the HIPAA laws recently?" ... is all that is necessary to get quick action. That being said, I've had to go as far as hold payment of my bill hostage more than once, and even contact the CEO of the major metropolitan hospital in order to finally get the needed records. Don't be afraid and don't be intimidated. Sometimes making like a bag of cement in a doctor's office (show up, sit down, and don't leave until you get what you came for) and standing up periodically in the busy office (full of other patients) to politely ask "Are my records ready yet?" is enough. Office staff will not want to be impolite to you in front of other patients.

For more information how to make your own Personal Health Control Journal, see this series.

2. Maintain a list of current medications and allergies, or past or present medical conditions.

As a first responder this is always the second thing we ask for. Knowing what medications are being taken, when they were last taken, and any allergies (yes, this includes foods, inhalents, contact allergies etc) can be life-saving. Keep the list as the front page in your records binder or folder for quick and easy reference, and don't forget to update them regularly. The list should include current dosages and the times these medicines are usually taken too. Medical history is vital, vital, vital. Knowing that an out of breath patient had chest pains a month ago, or that a stroke patient banged their head last week could be vital clues you may not think are relevant, but your doctor will be able to piece together to determine appropriate testing or treatment.

If you have had adverse reactions (not allergy) to medications, keeping a list of these reactions and what caused them can also be very important. Knowing what medications you have had in the past that didn't work for your condition may seem superfluous, but after 10 yrs time goes by, you will be hard pressed to remember them yourself without prompting. This knowledge can save much time and money later.

3. Take a list of questions and/or concerns to your office visit.

Tell your doctor the list, or give it to him/her at the beginning. At the end of the visit, go back through and very quickly reiterate the answers from top to bottom to be sure you understand instructions correctly. Don't hesitate to ask the doctor to write the answers for you as you run thru the list, or write them down yourself.

The average office visit is from about 7 - 15 minutes. A little small-talk is important so you and the doctor can get to know each other, but the biggest mistake most patients make is in waiting until the doctor's hand is on the doorknob before getting to the real reason for the visit. This is exasperating for your doctor who at once wants to be helpful to you, but is also trying to be mindful of his other patients and their needs. This list will help to keep you both on task.

4. Bring a personal advocate with you... or a micro-recorder.

A personal advocate is a friend or relative, or even a neighbor. I've written about personal advocates in more detail here. In short, an advocate's job is to sit by you during the visit and write things down. They should be able to help you remember questions to ask and any important details. They can hold your hand if you need it. They are there to back you up when you tell the doctor something that may be confusing. Doctors who tend to be rude will be less likely to show that side when there is someone else in the room. The same goes for patients. Advocates can help to make the entire visit go more smoothly.

If you have no one to go with you as an advocate, be sure to bring a micro-recorder. Each state has different laws dictating the use of these devices for legal purposes, but most doctors will be very open to their use if you tell them at the beginning of the visit that you are using one to help you remember what is said. If the doctor is not open to using one, my advice is to get another doctor.

5. Remember that your doctor is a human being first, and a physician second.

Being human means we make mistakes. We get frustrated at times, even angry. We appreciate being appreciated. We have lives outside our work, and families too. We need a little off-time every once in a while. Sometimes we need to vent. We have good days and bad days. We are not perfect, although we all do try.

I urge all chronically ill patients to remember that most doctors want to heal us. When we have a disease or disorder that can't be cured, it is frustrating for patient and their doctor. It is common for a doctor to see particular names on his schedule for the day and begin to dread those visits - not because he dislikes the patient, but because he feels helpless to fix the problem. His job is to fix things, and he can't.

Patients, use small-talk to find out your doctor's birthday and send him a card or a batch of cookies. When his anniversary rolls around, drop off a rose to the office. When Christmas/Hanukkah/Quanza etc season is here, thoughtfully wrap something up and give it to your doctor and his staff. Cards are great too - anything to acknowledge the people and the effort that goes into your care.

Got a difficult doctor with disrespectful staff? These are the offices that need these personal touches the most. You want to be remembered for good things, so do something memorable! You want them to look forward to your visits? Then do something that gives them a moment of joy and happiness while you're there. It's not difficult!

This post is my September entry in the Health Activist Blog Carnival. If you're interested in participating too, you can read all about here:
Comment by Amy K on October 3, 2010 at 1:10am
I LOVE this post Ellen! I especially love number 5!
Thank you for posting this.
Comment by Ellen S on October 3, 2010 at 3:41am
Thanks Amy :)

I'd love to pass along some of the feedback from my Facebook page too:

Rebecca says" Read everything you can get your hands on because there is much more about your illness that your doctor won't tell you. Whenever a new drug is prescribed, ask about side effects and if it will interfere with anything else you are on. Ask for recommended readings on how to live with it. Ask about local support groups. Find online support groups."

Pam's tip: "Now if only *doctors* could remember they're human beings first ;)"

Carolyn says "Get a good doctor one who listens....... support groups...get counceling if needed,get your family involved with appts etc...don't stop your meds when you feel better unless the dr says...."

Patty's tip: "And don't take medication that is worse then the disease!"
Comment by Marie on October 5, 2010 at 2:05pm
Love these tips, Ellen - thank you! Your 5th suggestion reminded me a lot of Doc Rob's letter to chronic patients posted earlier this year. His letter got a lot of comments (235!) and response from all corners of the online health world, but if anybody missed it back in July, definitely check out the link above!
Comment by Amy K on October 5, 2010 at 11:31pm
Fabulous post that you linked to... so transparent and brutally honest, from the doctor's perspective! I love opportunity to see the humanity behind the MD that is always there, just so easily missed or often hidden. Thanks for sharing that.
P.S. I am in awe that you could recall a post like that from so many months ago! =)
Comment by Ellen S on October 7, 2010 at 3:04pm
Marie - I'm with Amy .... Love it, love it, love it!! Thanks for sharing that. I KNOW I will have a use for it again somewhere... Hmmm.....

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