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Archive for the ‘after the diagnosis’ Category

If you follow me on Twitter (@GregKatz2), Facebook, or on these posts you know I have a black lab named Tashi that was diagnosed with MRSA (Methicillin-resistant Staphylococcus aureus) about seven years ago. Half her life has been spent visiting doctors, taking a host of medications, and having numerous tests where she’s been poked and prodded to get cultures. Throughout this process she has endured pain and discomfort, never giving up her loving nature.

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After fighting her most recent infection for the better part of a year, I’ve had the chance to be grateful for her doctor (Dr. B). He’s dedicated to her well-being. He took her case and as a result changed the infection control policies at the Veterinary Hospital. Most of all, I’ve watched him spend time with Tashi, never giving up on her and always trying to make her as comfortable as possible. What could he teach medical students who will eventually be treating us in doctor’s offices and hospitals?

Meet the patient where they are. I’m fortunate because I feel as if I’ve become partners with my medical providers. I always ask questions and I’m aware of the latest research on my own conditions. There is no power play in the exam room. Our vet is very sensitive to the power dynamic and when he examines Tashi he sits on the floor so he can see her eye-to-eye. He will often bow his head so that she knows that he doesn’t have to be dominant, in theory. He’s also the keeper of the treats, always a way to endear himself to her.

Follow-up is very important to the health and healing process. I feel like I’ve attracted patient positive doctors. They’ve been concerned and their follow-up has been extraordinary. One of my doctors had ordered some lab work and I didn’t do it within a timely manner. I received a phone call from him saying he hadn’t seen the results come across his desk and wanted to make sure I had gone for the lab tests. I felt like he was definitely looking out for me. Dr. B goes above and beyond the call of duty. After Tashi has an office visit, the phone rings about 8pm a couple of days later (after the vet office closes), the doctor checking to see if she’s making progress. Wouldn’t you like a follow-up call from your doctor to see if you’re making progress?

Dr. B always dialogues about side-effects and outcome strategies. He’s clear about what I’m willing and unwilling to do for treatment. Some of the medications Tashi has been on have had such horrible side-effects that they have been removed from the repertoire of possible treatment strategies. Minimizing suffering while seeking treatments that work is paramount to us working as a team. Dr. B doesn’t make it a “my way or the highway” session.

What can you take away from my experience with a vet that treats Tashi as if she were a person? Never allow your doctor to talk down to you. Be clear that you may not have gone to medical school, but it’s your body, your health, and your journey. Let the doctor know what’s important to you regarding the relationship. I always share with the doctor my professional background in healthcare so he knows from the start I’m going to be very involved (sometimes too involved when I begin to self-diagnosis. Read my post on anchor bias).

Select a doctor that makes you feel like you’re a priority. Unfortunately I spent five months taking Tashi to the vet a minimum of three times a week for treatment so I had a lot of time to ask questions and discuss her progress. Stay in contact with your doctor so he has up-to-date knowledge of how you’re doing. Many healthcare systems have email for their staff; use it! Don’t be afraid to ask questions in between appointments.

Lastly, find a doctor who has a strong commitment to compassion. Dr. B has always treated Tashi as if she were his own. He has done amazing amounts of research on her condition and is always looking for the latest and greatest treatments for her condition. I wish he saw humans because I’d be his first patient!

Looking to explore how to select a physician that is willing to partner with you?  Looking for education, support, and inspiration when facing a health challenge?  Visit http://www.survivingstrong.com

Want to explore how art improves healing?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

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You may be wondering is there really a pink sea; Google it and see what comes up. The truth is there is no Pink Sea, but today is October 1st and you may be experiencing a Sea of Pink. Today begins Breast Cancer Awareness Month. The use of the color pink has brought enormous attention to the Breast Cancer community. It has become defining, creating a community of those diagnosed with breast cancer, those living beyond breast cancer, and their families.

I was in Houston in April at the annual conference of the Arts and Health Alliance. While I was in town walking the main road an army of pink passed me. They were in the midst of their annual Avon Walk for the Cure. Women, men, and children all wearing pink to show their support for the Breast Cancer community.

The color pink linked to the breast cancer community has created a link and a way for community members to show their connection to the community. It becomes more prominent this time of year when buildings change out their white bulbs for pink bulbs shining a pink glow against their buildings in support. Pink ribbons are in full bloom like a field of wild lavender. It’s truly amazing that an illness has gone beyond the diagnosis and has created a community of hope, inspiration, and education.

The breast cancer community has created a culture and that’s not an easy thing to do. They have brought together the medical community, the corporate community, and individuals for a common cause. We’ll see a month filled with news stories about mammograms, treatment updates, and news of new medications such as Perjeta (a drug given FDA approval this past week).

You may not be a fan of the pink culture. Barbara Ehrenreich, noted author, is anti-pink. On an NPR interview she was clear that she didn’t want to be buried with a pink Teddy Bear. She doesn’t want to be defined for having an illness. She may not want to be defined by the pink culture, but it has served many raising money and pressure to find a cure and new treatments.

It doesn’t matter if you support the pink culture. It does matter that you support those facing Breast Cancer and all other illnesses. Perhaps we can find ways for other illnesses to find a culture that will help make their need more notable!

Are you or a loved one facing Breast Cancer?  Looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Want to heal through art?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

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Last week I wrote my 900th post for this blog. When I wake up in the morning I’ve started thinking about what could I possibly have left to say about health and healing, life and death, and overcoming adversity; and then a story pops up that all I want to say is, “REALLY?”

The Riverside Unified School District has banned John Green’s book The Fault in our Stars. The book has been cited as a book that will last the test of time because it’s a story about love, relationships, quality of life, and death. I read This Star Won’t Go Out by Grace Esther Earl, a real life account of a teen with advanced stage thyroid cancer. Earl and John Green had become friends and although there are similarities between the book and the memoir, Green’s book is fiction.

What was the reason for the Riverside Unified School District removing Green’s book from the middle school library? They didn’t want kids this young 11-12-13 to face mortality. They believe that reading about a teen dying would be too much for these kids to handle. Are the kids in Riverside living in a bubble like the Buddha prior to embarking on his journey to enlightenment?

Do you think that the principal of the school, the librarian, and some parents who voted really believe that children don’t get sick and die? I don’t know about you but if you ever watch television you can’t help but see a commercial for St. Jude’s Children’s Hospital. We have an entire network of hospitals in this country devoted specifically to the care of children and the Children’s Miracle Network. We have the Make-A-Wish foundation, giving children with life-threatening illnesses the opportunity to fulfill something on what we would call their “bucket list”.

I understand that death is difficult to speak about even for adult, but it does happen and denying it only causes greater pain. My hope is that no child has to personally experience illness and death, either their own or that of a loved one, but it will happen.

I’m disappointed that a school district would remove a book like this from their library because they are queasy about the topic. What I know about kids, maybe more so than adults, is that they are extremely resilient. They are inquisitive and would take these topics and want to discuss them, not shy away from them. When I was in high school, one quarter of health was devoted to death and dying. A progressive move on the part of our school district. Perhaps I should give Riverside Unified School District the name and number of my high school so they could temper their own resistance and fear.

Children die and it’s terrible. Removing a book that raises important questions is a travesty. The school should be ashamed of themselves.

Facing a chronic or life-threatening illness and looking for education, support and inspiration?  Visit http://www.survivingstrong.com

Want to discuss difficult topics with children through creativity?  Visit http://www.timetolivecreatively.com

Follow me on Twitter:  @GregKatz2

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Colorado Public Radio interviewed a woman who recently wrote a book about her experience with the medical community. What happened? She was wrongly diagnosed with Multiple Sclerosis. I’m sure you’re going how does that happen, but unfortunately doctors aren’t perfect. We should always remember they say that doctors “practice medicine”; it’s not a perfect science. Unfortunately the troubles are on both the doctor’s and the patient’s sides of the fence so we have to develop strategies to overcome these upsetting outcomes.

The new director of the University of Colorado Health Sciences Center, Dr. Matthew Wynia, MD, MPH, talked about in the age of Google many patients are coming for medical care with their own diagnoses. On the flip side, Jerome Groopman, author of “Second Opinions”, and “How Doctors Think” shares that doctors have been trained to make a diagnosis in the first twenty second of their interaction with the patient.

Information is great, but too much information can be harmful. Wynia talked about a phenomenon called Anchoring Bias. Anchoring bias is when we lock our thoughts and decision around a particular fact or group of facts to the point that we become unable to hear any other opinions or possibilities.

Personally I have been guilty of self-diagnosis. I’ve taken all my symptoms, entered them in the computer and waited for the diagnosis. I know that it’s not definitive because I may be experiencing certain symptoms, but without further testing or exams I can only account for those I can see or feel. However, I can see where it would be comforting to walk in thinking you know what’s ailing you because the unknown is quite scary.

On the doctor’s end we also need to address anchoring bias. Doctors are trained to believe that A+B=C. Unfortunately, there are too many variables in the human body. Groopman recommends that after receiving a diagnosis asking the doctor, “If it weren’t X, what else might it be? What other organs are nearby that may influence your decision?” The key is dislodging the provider’s stronghold on the diagnosis they believe is 100% certain.

Unfortunately diagnostics are sometimes fluid. It’s important to remember that healthcare is a team effort. We, the patient, have to be forthright with our providers and the providers have to be willing to listen to the patient’s entire story. Detectives can’t solve cases without all the information and the same is true for medical diagnoses.

The one thing I encourage you to anchor to is the idea of optimal health. I had some major pulmonary issues earlier in the year. It would have been easy for the doctor, knowing I have an asthma diagnosis, to simply go with the pulmonary diagnosis. Instead, he ran a plethora of cardiac tests to rule out the possibility that cardiac issues didn’t spark my pulmonary issues. It was interesting because on my annual visit with my dermatologist I told him about the numerous cardiac tests I had and he was glad that my primary care physician expanded his sights beyond my obvious breathing issues, reinforcing my confidence in my doctor.

Be aware that we’re all subject to anchor bias, and not just in medical care. You’d be surprised how we can all be like a dog with a bone when it decreases our anxiety. Health and healing requires that we not look at healthcare as a one-way street. There are often many avenues to be explored and getting to the heart of the matter increases the accuracy of diagnoses!

Diagnosed with a chronic or life-threatening illness?  Looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Want to explore possibilities of health and healing through art?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

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On Monday I talked about my visit to the Medical campus at The University of Colorado Heath Sciences Center’s monthly ethics discussion. This month they discussed Physician Assisted Death (PAD). The first thing that caught my attention was the shift from Physician Assisted Suicide to Physician Assisted Death. What caused the shift in terminology? Is it a way to make the legislatures in our country look upon these actions differently? Does it take away the stigma of suicide? Does it differentiate between suicide as we traditionally think of it and as a choice in dying?

The speaker presented some very interesting statistics that has been collected since 1997 about those who choose Physician Assisted Death. The most startling was that of all the prescriptions written with the intention of PAD only 64% actually follow through on taking the medications to end their life. Here are some other interesting statistics:

*74% were over 65 years of age

*54% had a college degree or higher

*85% were enrolled in hospice

*94% were insured

*65% had a cancer diagnosis

*94% were Caucasian

*62% were men

I share these statistics because we need to understand the outcomes when we institute societal, cultural, and legal shifts related to end-of-life care.

I’ve spent over twenty years sharing the journey of those facing chronic and life-threatening illnesses. I’ve always had a copy of Derek Humphry’s book Final Exit on my bookshelf. I’ve had numerous clients ask to borrow the book as they think about end-of-life care. In each of the cases I have always found that having the book available didn’t encourage taking one’s own life, but it did take the taboo out of the topic. It opened up many dialogues about suffering, pain, depression, assumptions about life, and a host of other topics.

When we de-stigmatize PAD we can begin to have open and honest conversations concerning advanced directives. These directives are important not only between the patient and the medical provider, but for the person who is your Durable Power of Attorney for Healthcare. Everyone needs to be on the same page. There are only four states that have PAD in the United States. I know that many more states are going to begin these conversations and that’s an important step, allowing us all to have options in our end-of-life care!!

Are you and your family facing a diagnosis of a chronic or life-threatening illness?  Looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Looking to explore your views about end-of-life care through art?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

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I’m fortunate to live near the University of Colorado Health Sciences Center. The school has a medical school, nursing school, dental school, and pharmacy school. Having these four disciplines on one campus affords them the opportunity to create programming that cuts across all four professions. They recently started a monthly ethics discussion raising issues the staff and students may/will come across in their careers.

Yesterday’s talk was about Physician Assisted Death, a topic that not only cuts across cultural and religious arenas, it is also being debated in many state legislatures. The presentation focused on two cases, both women, a twenty year old with end stage ovarian cancer and a forty-eight year old with leukemia. The cases were both interesting, but what I found particularly interesting were the responses by some of the students about the ethics involved.

I’ve been a mental health practioner for over twenty-five years. I’ve spent most of my career working with those diagnosed with chronic and life-threatening illness and I can tell you, you never know what how you’re going to react until you’re in the situation. Training is good because it gives you a basis for your decisions, but it’s the things not in text books that float around you like a cloud waiting to rain down at any given moment.

One of the things that caught me off guard was one student who was quite vocal. He was responding to a question from the moderator, but his sense of surety was a bit unsettling. I believe in having conviction but when it shuts off the possibility of anything contrary entering one’s consciousness I get concerned. My hope is that when these students enter clinical work and throughout their careers they will have the awareness that nothing in ethics is black or white. If you’re not comfortable with the “gray” zone, then perhaps medicine is not the right field for them.

What can I tell you after participating in yesterday’s dialogue? Create operational definitions with your physician about what you mean when you use words like suffering, distress, and control to describe your health. Have as many things written down in your medical chart about your wishes about care, especially end-of-life care. Don’t’ leave it up to the medical staff to assume, guess, or translate your wishes, make it know and do so with conviction.

The less you leave up for interpretation. Give yourself the peace of mind you need and deserve by having the hard dialogues with your medical providers. It will save you a lot of trouble and will reduce the risk that your wishes won’t be honored!

Facing a chronic or life-threatening illness?  Looking for education, support, and inspiration?  Visit http://www.survivingstrong.com

Want to express yourself through art?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

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Illness is a difficult experience and is usually something that is dealt with in the privacy of one’s home. I guess that times are changing because there seems to be a new trend on television; shows revolving around illness. I guess the networks and cable have had a topic epiphany; it’s chic to be sick.

Don’t get me wrong; I’m watching the two shows that have come to my attention. While watching the shows I’m riding on the coattails of the writers looking at the themes they are bringing to consciousness giving the public an insiders view of illness.

This summer saw ABC Family launched Chasing Life, the story of a twenty-four year old just starting out in her career as a reporter who is diagnosed with leukemia. Of course there are a few side stories that make it a drama, but it does touch on the process of being diagnosed, going through tests, the social ramifications of the diagnosis, and at the end of the season the start of treatment.

The show punctuates the common themes of denial after a diagnosis, how illness interrupts life’s plans, and the importance of having a support group/team to help you through the process of health and healing. I commend ABC Family for taking on this precarious topic. It’s not a mainstream storyline, but the cable network is exploring real life scenarios giving us a glimpse of the world of illness.

The other show that began this past week is the Red Band Society. Fox is taking on the topic of illness amongst kids who are in a long-term inpatient Children’s Hospital. The show has only aired one episode so it’s difficult to know how the storylines will progress. We’re only getting the back stories of the patients and it may take some time to see how the writers attack the multiple issues related to serious illness.

I’m glad that shows are beginning to emerge around the theme of illness. Illness is something that will touch all of our lives. My hope is that these shows will give us a platform to discuss these topics that are usually taboo. I hope these shows will give those facing a chronic or life-threatening illness to seek support from groups, a therapist, a coach, or spiritual director.

Making illness the central theme of a show takes guts. I hope the shows make it because we need this type of cultural exposure to the issues surrounding illness and healing!

Facing a chronic or life-threatening illness?  Searching for education, support, and inspiration?  Visit http://www.survivingstrong.com

Want to explore health and healing through creativity?  Visit http://www.timetolivecreatively.com

Follow me on Twitter: @GregKatz2

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