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Welcome to the Patient's Voice

Discussing the good, bad and ugly experiences patients face in healthcare today.

Friday, May 20, 2011

You don't always get what you want.......

Tagging onto Chelsea's post:
At Karyn's PCP visit, she went armed with a list of concerns and questions.  Knowing that she probably wouldn't be able to discuss everything, she prioritized. 
  • when would she get an appointment to have her test redone to determine if her cancer was back?
  • why did the Neurologist order an MRI, additional blood work and give her a medication without adequate information on what it was for, risks, benefits or side effects?
  • could the dose on her medication be changed to provide better pain control?
There was much more, but you get the picture.  Fortunately, Dr. V. is familiar with the multitude of problems Karyn has.  While no physician or care provider is perfect, Dr. V. seems to get it and took action.  Instead of the expected "I don't know why he ordered these", she agreed that the MRI and blood work did need to be done, BUT she explained why.  She also discussed the new medication and again felt it was an appropriate choice.  The side effects vs. the benefits were reviewed along with an alternative dosing plan.  Taking the new med would hopefully address the neuropathy pain that just increasing the dose on the old med would not.  The list of questions and anxiety level would have been less had the other physician taken the time to explain

So she didn't get to increase her med dose, didn't get out of having the tests, which is what she wanted.  But maybe she got what she needed.  We're certainly hoping so.

Count your blessings
Debbie 

Wednesday, May 18, 2011

Pharmacies, Shmarmacies, and What To Do When Your Doctor Leaves You (Or Vice Versa)

Things to do at the pharmacy while waiting on your prescription:

1. Do crossword puzzles. When it becomes boring, try to do them upside down or involve the people sitting around you. Mom and I used to do them all the time while waiting for her radiation appointments.
2. People watch. Make up stories in your head about where people are from, what their job is, and, of course, what kind of medication they're getting.
3. Start conversations with strangers. They're often relieved to have someone interesting to talk to.
4. Don't wait. Drop your prescription off and go run errands, or better yet, get a sno cone! Our favorite is the Snowflake Factory in Arlington, TX!

So, not long ago, Mom had an experience with a doctor that ultimately made her decide to switch. The doctor was completely inappropriate during a visit and rude over the phone while giving bad test results. Mom had already had issues with one of the nurses on her staff (a different can of worms,) and I had encountered another doctor at the hospital who, after I explained to her that I felt she had been really rude to me in an emergency situation, referenced Mom's doctor and said, "She's my colleague - she wouldn't say anything bad about me. She knows I'm not rude." Insert nasty smile here. 

Mom spoke with her primary care doctor, who said she would refer her and get the proper tests done as quickly as possible. You have to stand up for yourself and your well being. If a doctor is unprofessional or doesn't seem to have your health in his or her best interest, you have the right as a patient to speak up and find another doctor. When you do that, you also have to follow up to be sure the proper documents have been sent to the new doctor, and that appointments have been scheduled. Sometimes, you have to take charge of the system. It's hard work getting good healthcare!

A few days ago, I had a follow up appointment with my new primary care physician. She had prescribed me a bunch of meds for Fibro and anxiety that not only made me feel worse, but were meds that I just didn't want to be on day to day. When I went back, I let her know how the meds made me feel, and that I didn't necessarily want a daily med for pain or anxiety. I asked if she could prescribe something for when the symptoms get bad, and she was happy to. I thanked her for being so thorough - asking lots of questions - and for caring about my health and pain level. She smiled and said thank you, then paused and said, "You know I'm leaving, right?"

Sigh. Of course she's leaving. I found a good primary care doctor who knows about Fibro, is caring and inquisitve, and she's leaving. So, I asked if she knew anything about the doctor who would be replacing her (and, jokingly, if they were any good.) I now know that the new doctor is a woman, about the same age as my current doctor, with experience in hospitals and family practice. She's nice, as far as I know, and I'll have to wait to see what her bedside manner is like. Just asking a few simple questions gave me some peace of mind about the changes in the near future. It's early in the game, and I can always choose another primary care doctor if this one isn't a good fit. Everyone has a hard time living up to my first family doctor, anyway, who treated my mom as a teenager, and treated me throughout my childhood and adolescence. That man was a great doctor!

I guess what I'm saying is - it's okay to change doctors if you have that option, and if your current doctor moves on or retires, ask questions about their replacement, or for referrals. It may take some work on your part, but it's worth it to find a doctor who truly cares for you.

Wishing you wellness,
Chelsea

Sunday, May 15, 2011

I like to move it - move it!

For anyone who's ever had an health issue that kept you from exercising, you know what I mean when I say it can be a big issue. If you're not able to exercise, it can cause more problems. Other people don't understand why you can't do simple physical activity, or why you can't do as much of it as they think you should. It's frustrating to feel physically limited, like you can't keep up with everyone else. Lack of activity can bring on depression, fatigue, and weight gain. If the health problem lasts long enough and is severe, it can make you not want to move at all, no matter how good exercise is for you. Mom cried when the cardiologist (who had just put several stents in her heart) told her she needed to exercise. The FMS and Lupus had been so bad and she was in so much pain that she thought exercise was impossible. He said that if she wanted to live, she had to exercise.

The truth is, you're not in competition with anyone but yourself. Talk to your doctor about a safe exercise routine you can commit to, and start small. Even if you're doing resistance exercises with a band or walking 5 minutes a day, you're doing something, and chances are you'll be able to increase the amount of physical activity you do over a period of time. Mom started out walking to the next house and back, and worked her way up to a mile a day. Her Fibro pain became much less severe, her heart was healthy, and it definitely helped when she was diagnosed with Diabetes. I can say that when I exercise more, I get better sleep and have less pain. Don't worry about others' expectations, or comparing yourself to other peoples' fitness levels. It's about you and your well being. If you have to, stay away from gyms (unless being around others is what motivates you!)

Set realistic goals for yourself and find what works for you. Don't overdo it. You'll quickly learn when you've exerted yourself too much. Don't beat yourself up over it; just back off and give yourself a break. Be sure to stretch before and after any activity, breathe steadily and purposefully during exercise, and give yourself time to rest between workouts, whatever that means for you.

Some low-impact exercise ideas that require no equipment, can be easily modified to your fitness level or injuries, and can be mixed and matched:

Walking. If you're able, this is a great exercise that you can take at your own pace. It's easy and fun to do with a partner (it's a great time to chat,) and can be scenic if you're not using the treadmill. To find out if your neighborhood is walk-friendly, go to walkscore.com and enter your address. You can even enter a specific commute to see how long your walk will be.

Biking is a good alternative to walking, especially if you're running errands and don't want to have to carry bags around. WalkScore also gives estimated times for biking trips.

Yoga. You'll learn how to breathe with each movement, you'll stretch, and you'll use your own body weight to strengthen muscles. Try Hatha yoga for a stress reducing workout, and, my favorite, Ashtanga for cardio.

Tai chi. Again, breath is very important, and can be a little less intimidating for those who associate yoga with turning into a pretzel.

Pilates. Using repetitive muscle movement (usually lying down,) you focus on core strength, which is helpful no matter what your health issues!

Water aerobics or swimming. This is about as low impact as you can get, but be careful! The weightlessness you feel in the water alleviates pain in joints and muscles while working out, but that same weightlessness can sometimes result in overexertion that you will definitely feel the next day. Even walking in water that's waist deep is a workout!

Dancing. You don't even need a partner. Just turn on the music and move your body! You can also check out a local college for dance lessons in their continuing education course list, or check the YMCA.

Wishing you wellness,
Chelsea

Saturday, May 14, 2011

Communication - Communication - Communication

What do patients want from their healthcare providers?  They assume that we are competent to provide the service they are seeking.  However, most will tell you, that first and foremost, they want to be treated as a person and not a diagnosis, number or an inconvenience.  They want us to not only listen to them, but "hear" them.  Treat them with respect and courtesy; answer their questions in a way that they will understand; explain what we are doing and why; explain why we are giving a medication and what side effects they need to be aware of.  All of these topics and more come down to communication.

It's not just direct patient care givers who need to communicate effectively and appropriately with patients and their families, but everyone within the organization.  The scheduler who is rude and uncaring about the patient's urgency for an appointment; A receptionist that says "we're out of wheelchairs, you'll have to walk" when it's clear that the person isn't able.  Both are examples of a culture that isn't tuned into "caring" and sets the tone for the whole encounter. 

Unfortunately, Karyn and Chelsea have experienced this recently.  You have an abnormal test result for which you are waiting for an appointment.  Two weeks pass, three weeks and no appointment date.  Karyn calls to enquire when she can expect an appointment and is told "I don't do scheduling, you'll just have to wait like everyone else."  Imagine the frustration, anger and anxiety this type of response caused.  You are waiting to find out if your cancer is back and you're told to wait.  While it may be true that this individual doesn't do the scheduling, wouldn't it have been better to say:  "I'm sorry that you haven't been contacted yet.  I don't do the scheduling, but let me check with them to see what the delay is.  Can I put you on hold, or would you prefer I call you back?"  The outcome may not be any different (she's STILL WAITING), but at least she wouldn't feel like nobody cares and that she is inconveniencing them.

Unless you or a loved one has gone through a major illness, you might not understand how every contact shapes the patient's experience and perception.  We have an obligation in healthcare to do the right things, the right way for the right reason.  Patients are not an interruption to our work, they are the reason for our work!

Friday, May 13, 2011

The Ultimate Tool For Life Changing Events

Some friends of ours who are about to have a baby have introduced me to a great site! Carecalendar.org is a free tool for those looking to recruit and organize helpful family/friends/church members to help their loved ones through stressful times. This is a wonderful resource for those who are going through a life changing event like short term or chronic illness, having a baby, or losing a loved one. The calendar is customizable depending on the specific needs of the recipient - meals, transportation, house work, errands, you name it! You can let people know exactly what is needed and when, the calendar shows which needs have been met and which ones still need to be fulfilled, and the site even sends email reminders to those who have signed up to help.

I hope you can use this site as a tool to alleviate stress, maintain wellness for yourself and/or a loved one, and promote the sense of community that we all need throughout different stages of our lives!

-Chelsea

Your Daily Dose of Inspiration

Meet Carly, a teenage girl who's changing the world of autism (Spanish subtitles):

http://www.youtube.com/watch?v=M5MuuG-WQRk&feature=related

To learn more about Carly:
http://carlysvoice.com/

Wishing you wellness!

Chelsea

Wednesday, May 11, 2011

Happy Fibromyalgia/CFS/ME Awareness Day!

2 out of the 3 authors of this blog have Fibromyalgia - my mom (Karyn) and I. Promote awareness by wearing purple and telling everyone why. Be sure to give lots of gentle hugs to your loved ones with Fibro and/or Chronic Fatigue/ME today!

To learn more about these syndromes, visit this informative and easy to read fact sheet: http://fmcfsme.com/documents/fmcfsme_factsheet2011.pdf

-Chelsea

Tuesday, May 10, 2011

I'm no expert.

My name is Chelsea, and I'm not an expert. At least not in the medical field. I went to school to become a licensed Massage Therapist, I did well in science in college, and I've had my share of health problems, so I'm not totally ignorant to the way the body works and how to fix it when something goes wrong. I can't say, though, that anyone is ever prepared for their mom to have as many health problems as mine has had (many of them secondary issues caused by Lupus,) and then to be diagnosed with cervical cancer.

My mom did the right thing. She hadn't been to the OB in a long time, because she'd taken care of me and my Nana. I began having seizures in 5th grade, was finally diagnosed a few years later, and was weaned off medication in my mid teens. At the same time, my grandmother was suffering from heart problems. There was a time when my mom was literally sitting in between my grandmother, who was having a heart attack, and me, having a seizure. Then, after the three of us moved into a beautiful house together, Nana was diagnosed with small cell lung cancer. So, you can see why taking care of her own personal health wasn't my mom's top priority - until she had a heart attack after her mom passed away. (That's a story for a different day, titled "How My Mom Stopped Smoking Cold Turkey.") She began going to the doctor regularly, found out she has type 2 diabetes, and began eating accordingly, exercising on a regular basis, and being the patient every doctor wants. I was so proud of her!

Nana and me.

To continue the trend of taking better care of herself, she made an appointment for a well woman exam. The doctor saw something, but assured her it wasn't cancer. Obviously, he was wrong. I went into "taking care of business" mode, like I do in most emergency or stressful situations. We went to every appointment together, then every treatment. The treatment was intense - 6 weeks of chemo assisted radiation, where, you guessed it, they give them both during the same time period. I learned that there are as many combinations and types of chemo and radiation as there are flavors of Jelly Bellies. I learned that ginger ale can be a miracle, and that my mom really does have that much hair. (She lost half of it during treatment, and you could barely even tell.)

Mom walking me down the aisle. After the wedding, I donated my hair to Locks of Love,
and she donated hers to chemo.

I also learned that I will speak up for myself and my family when it comes to their well being, no matter how high up in rank that person is - or thinks they are. I calmly and respectfully called the radiologist a liar when he insisted he told us one thing when he told us another. I wrote a long letter to the Quality Care department explaining that the radiologist was only at half the appointments, and that his PA was either too busy or not qualified to stand in for him. I explained that my mother didn't even know that she should have seen a social worker until her last day of treatment, at which point it was too late for her to receive any benefits. I recounted the times we were lied to, ignored, and mistreated. I praised the radiology nurses and techs and the chemo team, who were all kind, compassionate, and funny. I praised the oncologist, who carried a rolodex of all her patients in her pocket and made phone calls after hours to check on them. And you know what? I saw results. Suddenly, there were a bunch of very concerned people who had read my letter. Suddenly, people were being "reassigned."

I'm no expert, but you don't need to be to stand up for what's right. It helps to educate yourself and ask questions, because other people won't always do it for you, but you don't have to know everything. You just have to care. You just have to make your voice heard, because you may be the only one speaking for hundreds who can't speak for themselves.

Monday, May 9, 2011

Where to begin?

The biggest challenge in starting this blog is where to start.  Start at the beginning (about 6 years ago) or what's happening now?  To better understand the complexity of this, here are a few more background details. 

Our mother was a strong, professional and very prideful person.  The last years of her life she endured many major health problems including cardiovascular and cancer.  She wasn't the easiest patient to deal with.  She demanded respect and expected all of her caregivers to provide excellent, TIMELY and effective care.  If you didn't meet her expectations, she had no problem letting you know.  Over a period of time, mom's health declined to the point that she no longer felt safe living alone.  Always at mom's beck and call, my sister Karyn and her daughter Chelsea moved in with her.  Living in another state, my ability to provide daily assistance wasn't an option.  Karyn became her primary caregiver until she passed away.  We developed a very close bond with nightly phone calls and visits as frequently as possible.  Being in healthcare, I frequently was the interpreter of all the medical gibberish.

After Mom's passing Karyn, Chelsea and I dealt with all of the usual issues with the estate and some very disfunctional family members.  This only served to bring us closer together.  Of course the majority of the estate concerns fell to Karyn.  As many of you know, this is a very stressful and emotional process.

Flash forward a few months, and I'll never forget the phone call.  "I'm having chest pains, trouble breathing and feel like I'm going to pass out...."

You're too young to have all these problems....

Heart attack, Cardiogenic shock, 3 STENTS, Epilepsy, Lupus, Fibromyalgia, Type II Diabetes, 3 knee surgeries, Aortic Valve Insufficiency, Cervical Cancer and Polyneuropathy. Oh, and throw in a broken toe to boot!

The list of diagnoses is to represent all of the different specialities that Karyn has encountered and to show that the behaviors good and bad cut through all areas of this healthcare system. I wonder how their patient satisfaction scores look? Think I will look them up on Hospital Compare.

If you go to the following website, you can see how patients rate specific hospitals.   Last updated on 4-11-11.  http://www.hospitalcompare.hhs.gov/  Sadly, the healthcare system Karyn is using is below state and national averages in all areas except one.  Clearly we aren't the only ones that have had less than stellar experiences.  Do they not know that starting as early as the end of 2012, that their reimbursement is going to be reduced and they will have to earn it back based on their Patient Satisfaction scores in addition to other quality criteria? Regardless of payment, treat patients like they are your favorite family member or friend, it's the right thing to do.