Welcome to the Patient's Voice

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

Saturday, June 25, 2011

Make June Cancer Survivors Month!

Join us in signing this petition to make June "Cancer Survivors Month:"


They say that every day you live with cancer, you're a survivor! If cancer has touched your life, though, you know that a cure would change the term "survivor" radically. So, let's make June the month to raise awareness for all kinds of cancer to help find a cure, and celebrate those who are surviving cancer with strength and grace.

Have a great weekend!

Thursday, June 9, 2011

An Angel Named Annabell

Yesterday, Mom went back for the second time to get x-rays done, and the machine was broken - again. So, she waited and waited for the machine to be fixed, and waited some more. At the point she thought she couldn't sit any longer, she stood up to wait. After standing up, a sweet, little employee of the Quality Care department came over and asked if she could ask Mom some questions. Mom's reply was, "Oh, honey, I don't think you'll like my answers." Annabell started asking about her waiting experiences at the hospital, which are normally not that bad, considering the number of patients. She asked about her other experiences, and Mom began to tell her about the terrible situations with her OB oncologist and primary care doc. She explained about the letter she wrote and mailed to the hospital's main office, and that she's never received a reply. She explained that she's in limbo, waiting for the doctors to do something for her. Annabell took notes, was kind, and very concerned.

She couldn't have shown up at a better time, when Mom feels like there's no fight left in her, and I'm feeling like I've had to write one too many letters. Hopefully, Annabell will be able to help us see some resolution, and help Mom get well!

Wishing you wellness,

Sunday, June 5, 2011

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,

Wednesday, June 1, 2011

How To React When A Loved One Is Diagnosed With A Serious Illness

I'm sure many of you have experience with this one. A friend or family member is diagnosed with chronic pain, diabetes, cancer, lupus, epilepsy or another chronic, potentially life threatening or fatal disease. How should you react?

The truth is, there's no right way. I mean, the wrong way would be to laugh in their face or never speak to them again. I know that mom and I have lost friends because of scary illnesses - friends just couldn't handle it, so they disappeared. If you're feeling like you can't deal with your loved one's diagnosis, be honest. Let them know that you're not sure what to do, but that you can simply be there for them. Maybe you haven't had to deal with something this severe before, and that's okay. Just be sure, however you react, that it's supportive. So, beyond that initial reaction, what can you do?

One of the first things you can do is either ask them about their diagnosis, or do some extracurricular research. Webmd.com is a good, realiable place to start if you're looking up a specific illness. You can also browse bookstores or your local library for information. This will show your loved one that you care enough to educate yourself on what they're going through, and will give you the peace of mind that comes with knowledge.

Another thing you can do is listen. Just listen. Don't try to compare what they're going through with what someone's cousin's dog went through, just listen and respond appropriately. Sometimes a "I can't even imagine what that's like," or "that must be so frustrating" is enough.

Lastly, you can get off the topic. Life goes on no matter how we're feeling, right? So, if possible, take your friend out for a quick shopping trip, bring lunch by and have a picnic in the living room, rent a movie - do something that doesn't involve his/her health problems. If your loved one isn't well enough to do something active, you can always read to them, do chores, or run errands for them and recount what you heard and saw when you get back.

Remember that people respond differently to bad news. Some handle it with tears, some with humor, some with a practical, straightforward attitude. You can take cues from your loved one to see what responses are appropriate to them. A great resource that I'm currently reading with my husband is the book The Five Love Languages by Gary Chapman. (Click the link to go to the official website, where you'll find quizzes and other info.) It's a book about discovering your husband or wife's "love language," or the way they express and receive love. Even though the book is designed for couples, the concept translates to family and friends easily. Find their love language, and you'll learn how to show them you care in the best way. Sometimes it's with gifts, like bringing what Mom and I call "happy day gifts" (gifts without special occasion,) or it might be with quality time, just sitting and talking about what's going on in life. Whatever your loved one's love language, you can assure they feel loved by you when you come to visit.

A side note - if you're having difficulty dealing with your loved one's diagnosis, or are just looking for advice or kinship, look for a local support group. Support groups aren't just for people with illnesses, they're also for the people the illness affects indirectly. So, while you're printing out a list of support groups your loved one could be a part of, find one that you can be a part of, too.

Wishing you wellness,

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

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,

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,