At A Loss ...

I have never seen such a lack of empathy as I have in the past several months. It seems like doctor after doctor is pushing my mother away because her health problems are just too serious for them to deal with (or there are too many of them to remember.) Friday, I went with Mom to her primary care appointment with Dr. V, and it was bad from the beginning. The nurse was nice, joking with us and saying that she hoped Dr. V's attitude was better than it had been at her last appointment. (We mentioned something to a different nurse at the previous appointment, who tried to help us get answers from the doctor, so word evidently got around that we weren't happy with Dr. V's bedside manner.) Then, the doctor came in and was instantly on the defensive. Mom first asked for the results of the blood work the doctor insisted on last time (testing for some pretty serious stuff), and the doctor immediately dismissed her, saying that they only had a limited amount of time and wouldn't be able to talk about everything, so to just tell her what Mom considered important and they would address that.

It was obvious that someone had spoken to her about how she didn't address all of the things that my mom talked about in her last appointment, and it was obvious that she had no intention of owning up to her mistakes. It was also obvious that she no longer considered the bloodwork important enough to talk about first. She knows Mom's long list of health issues, and is aware that she's struggling with several of them right now. Everything Mom spoke to her about during the last appointment was important. We both just sat in silence for a second, not believing what we heard.

For the second time, Mom said that the severe shoulder pain she's been having since a fall a few weeks ago was important. She repeated that she had a previous injury, a torn rotator cuff, and that's what it feels like; the pain is sometimes so bad that it makes her feel like vomiting. She told her that she has to hold her elbow close to her side to be able to lift anything, and that she has been babying the shoulder as much as possible - not lifting anything heavy, etc. This is all info she gave Dr. V at her last appointment, which was never addressed.

So, after talking to Mom about her shoulder, she painfully tested her range of motion and ordered x rays, but only after asking if any x rays had been done on her shoulder recently. (This baffled us. X rays would have been done had the doctor addressed that during the last appointment, and Mom wouldn't be requesting them had they already been done.) Then she suggested that Mom stretch her shoulder to regain range of motion, keep her elbow close to her side, and that she shouldn't lift anything heavy. Somehow I don't think that will be a problem ...

She also said that someone ordered the wrong test as part of her lab work last time, and that she would have to make sure they did the right test this time. We believe this was a mistake on her part, because of what the lab paperwork states from the last visit. The correct tests should have been for the various types of Hepatitis, so Mom asked her to clarify which one (we couldn't remember the different causes for the different types of Hepatitis.) Dr. V's reply was blunt and didn't answer the question: "Hepatitis B is Hepatitis B. They ordered the wrong test." Mom asked again what the causes were, and she did answer the question, no less bluntly than her first answer.

After telling her that she had written the requests for x rays and new lab work, Dr. V stood up and started walking toward the door. She didn't ask if there was anything else Mom wanted to discuss, so I asked Mom if she wanted to ask some questions about the medication she had been prescribed last time (as well as some she asked the doctor about, but wasn't addressed) which made the doctor pause. Before she could even answer, though, Dr. V was walking out the door. Of course, Mom said she didn't want to talk to her about it, because, let's be honest, who would want to continue a conversation with a doctor that makes you feel completely uncared for? As the doctor walked out, Mom answered "No, I don't think so. She already made it clear that she doesn't have time for that, " as I agreed. Dr. V nodded and said "Yeah, the nurse will be right in," and closed the door.

I'm in the same healthcare system, and it's my understanding that after your first primary care visit, which is usually 45 minutes to 1 hour, the time frame decreases to about 30 minutes per visit. Dr. V spent between 10 and 15 minutes in the room before rushing out. There's no reason the appointment should have gone the way it did.

It so happens that this new medication the doctor switched her to (from a med that was working, but the doctor didn't approve of because it's highly addictive) makes her unsteady on her feet, sleepy, and makes her feel "drunk." The medication makes it impossible for her to drive, adds to the possibility of her falling, and makes it even harder for her to work productively to make some kind of living. In other words, the medication is making things worse, and she won't be able to see a specialist for another three months. 

The same nurse we spoke to at the last appointment came in with Mom's paperwork, made it very clear that we were not the only ones having problems with Dr. V, and that even the staff was being treated the same way we had been treated. She suggested some different options Mom could try, assured Mom that it was her right to find a different doctor, and was very apologetic. We thanked her for all of her help and told her what a good nurse she is. She was obviously busy, but took the time to talk with us and attempted to help.

All in all, I'm at a loss, here. Should Mom just wait three more months to see a specialist she's needed to see since last November? Should she attempt to find another primary care doctor within the system now, who may or may not be able to prescibe her medication while she's waiting to see the specialist? Should she find a new primary care doctor, which could also take months, after her specialist appointment? It's so frustrating to start over completely with a new doctor, no matter how much better they are, when they aren't yet familiar with your extensive and complicated health history.

I know this is a long winded post, but I'm just at a loss for what to think, say, or do at this point.

Wishing you wellness,
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

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.

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.