Professional Patient Skills Learned from Coping with a Chronic Disease

 

Learning to Navigate the Health Care System as Parents of Children With Chronic Disease

Video taken from the channel: AAPexperience


 

Chronic disease self-management support of clinicians Video Abstract ID 121626

Video taken from the channel: Dove Medical Press


 

Introduction – Living With Chronic Disease

Video taken from the channel: Arthritis Foundation


 

Learn more about chronic diseases

Video taken from the channel: Transforming Health


 

Teaching Patients How to Manage a Chronic Disease

Video taken from the channel: Lee Health


 

Living with a Chronic Disease

Video taken from the channel: hankschannel


 

What Chronic Illness Taught Me About Life

Video taken from the channel: Kevin Jubbal, M.D.


Professional Patient: Skills Learned from Living with a Chronic Disease. By Katie M. Golden. Created: 08/09/2017. I should get some credit for the battle scars I have earned since becoming chronic, and the term professional patient just seemed appropriate. I had to not only go through the grieving process of a dramatic change in my life.

Professional Patient: Skills Learned from Living with a Chronic Disease. April 19, I should get some credit for the battle scars I have earned since becoming chronic, and the term professional patient just seemed appropriate. I had to not only go through the grieving process of a dramatic change in my life, but I was hit with having to. The Chronic Disease Self-Management Program is an interactive workshop for people with all types of chronic conditions.

Stanford University developed this course to help people with one or more chronic conditions learn the strategies to manage. Breathe out slowly, being mindful about releasing all the air from your lungs. Breathe in through your nose as you slowly count to four in your head. Be conscious of how the air fills your lungs.

What words of advice would you offer someone who just learned they have a chronic condition? Take a few deep breaths. Don’t panic.

Feel sad, feel angry, feel whatever you feel. Write it all down, but don’t show it to anyone. Catch your breath.

Write down your questions for your doctor. Start learning the skills. We have learned over the years at our center that effective chronic illness care requires two things.

First, it requires a team with the patient at the center. tion of professional treatment. The patient’s role was largely passive. living with chronic illness to flying a small plane. If it is flown well, chronic disease.5 More recentl.

Chronic obstructive pulmonary disease (COPD) is a serious health problem that has significant effects on the life status of elderly persons. Use of the empowerment approach is necessary for health promotion in older people with COPD, but little attention has so far been paid to all the dimensions of empowerment in the management of COPD, which would provide useful knowledge. • Addressing the physical and psychological effects of chronic disease (including fatigue, pain, depression, and frustration) • Exercising, getting proper nutrition, and using medications appropriately • Communicating effectively with family, friends, and health professionals.

Continue to learn about your medical condition outside the doctor’s office. Try to familiarize yourself with common terms and the organs involved in your condition. (If you have diabetes, for instance, learn about the pancreas and kidneys.) Investigate your treatment options, different medications and important diet changes.

List of related literature:

For example, physicians skilled in managing illnesses such as amyotrophic lateral sclerosis (“Lou Gehrig’s disease”) or multiple sclerosis learn to listen to patients’ discoveries about how to live with their illness and often pass along suggestions from one patient to another.

“Alternative Modernity: The Technical Turn in Philosophy and Social Theory” by Andrew Feenberg
from Alternative Modernity: The Technical Turn in Philosophy and Social Theory
by Andrew Feenberg
University of California Press, 1995

Dealing with chronic illness To deal with the illness, the individual needs a high level of health literacy to understand the disease and the treatments, and the sequelae of both.

“Lewis's Medical-Surgical Nursing EBook: Assessment and Management of Clinical Problems” by Di Brown, Helen Edwards, Thomas Buckley, Robyn L. Aitken
from Lewis’s Medical-Surgical Nursing EBook: Assessment and Management of Clinical Problems
by Di Brown, Helen Edwards, et. al.
Elsevier Health Sciences, 2019

Creating realistic expectations about the patient’s abilities and behaviors can also help with family adjustment to the illness (Mioshi et al., 2013).

“The Oxford Handbook of Adult Cognitive Disorders” by Michael L. Alosco, Robert A. Stern
from The Oxford Handbook of Adult Cognitive Disorders
by Michael L. Alosco, Robert A. Stern
Oxford University Press, Incorporated, 2019

Based on the antecedent variables of UIT, Northouse and colleagues (2000) suggested that health professionals should keep in mind individual characteristics of patients, social environments, and methods of illness appraisal when caring for patients with colon cancer.

“Middle Range Theory for Nursing, Second Edition: Second Edition” by Patricia R. Liehr PhD, ARNP, Mary Jane Smith PhD, RN
from Middle Range Theory for Nursing, Second Edition: Second Edition
by Patricia R. Liehr PhD, ARNP, Mary Jane Smith PhD, RN
Springer Publishing Company, 2008

These skills could include focusing on the process of communicating about health and illness with providers and family, as well as developing a self-efficacy in negotiating what you need or want in your health and illness care (Parrott, 2004).

“Storied Health and Illness: Communicating Personal, Cultural, and Political Complexities” by Jill Yamasaki, Patricia Geist-Martin, Barbara F. Sharf
from Storied Health and Illness: Communicating Personal, Cultural, and Political Complexities
by Jill Yamasaki, Patricia Geist-Martin, Barbara F. Sharf
Waveland Press, 2016

• Helping patients understand how to deal with different symptoms related to a chronic disease and its treatment and how to communicate with family, friends, and health care workers assists patients in making lifestyle changes required by their chronic disease.

“Fundamentals of Nursing E-Book” by Patricia A. Potter, Anne Griffin Perry, Patricia Stockert, Amy Hall
from Fundamentals of Nursing E-Book
by Patricia A. Potter, Anne Griffin Perry, et. al.
Elsevier Health Sciences, 2020

Thus, providers, including advance practice nurses, should try to communicate in a manner that fully explains existing symptoms and their relationship or lack thereof to cancer recurrence (Clayton, Dudley, & Musters, 2006).

“Middle Range Theory for Nursing, Second Edition” by Mary Jane Smith, PhD, RN, Patricia R. Liehr, PhD, ARNP
from Middle Range Theory for Nursing, Second Edition
by Mary Jane Smith, PhD, RN, Patricia R. Liehr, PhD, ARNP
Springer Publishing Company, 2008

Living with these diseases presents its own challenges for both the patient and his or her family.

“Marriage and Family Therapy: A Practice-Oriented Approach” by Linda Metcalf
from Marriage and Family Therapy: A Practice-Oriented Approach
by Linda Metcalf
Springer Publishing Company, 2011

Providers certainly may have the knowledge to tell people what they should and should not do to improve a health issue, manage symptoms, or what lifestyle changes would benefit a patient.

“Motivational Interviewing in Nursing Practice: Empowering the Patient” by Michelle Dart
from Motivational Interviewing in Nursing Practice: Empowering the Patient
by Michelle Dart
Jones & Bartlett Learning, 2010

Written instructions help patients understand the disease process and learn to optimize quality of life while managing the symptoms of a chronic disease.

“The Electronic Health Record for the Physician's Office E-Book: For SimChart for the Medical Office” by Julie Pepper
from The Electronic Health Record for the Physician’s Office E-Book: For SimChart for the Medical Office
by Julie Pepper
Elsevier Health Sciences, 2019

Oktay Kutluk

Kutluk Oktay, MD, FACOG is one of the world's foremost experts in fertility preservation as well as ovarian stimulation and in vitro fertilization for infertility treatments. He developed and performed the world's first ovarian transplantation procedures as well as pioneered new ovarian stimulation protocols for embryo and oocyte freezing for breast and endometrial cancer patients.

Mail: [email protected]
Telephone: +1 (877) 492-3666

Biography: https://medicine.yale.edu/profile/kutluk_oktay/
Bibliography: oktay_bibliography

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23 comments

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  • The hardest part is regularly being fully active and feeling energized and making plans for the following day and 3 hours later your basically bed ridden for the following two days

  • Just found your channel, but I’m really glad I did. I’ve got a couple of strange chronic illnesses that I’m still working on getting diagnosed after 7 years, and finally getting somewhere. I often forget that the doctors trying to help me can also fall victim to the same illnesses; while in my mind, they’re some immortal being lol. So thank you for being transparent and open about the conditions you face and assisting others in their journey with chronic illness. It truly sucks, but we can either do the best we can to get healthy; or we can give up and never have a chance of being healthy again.

  • Thank you for this great reminder! I’m battling gvhd as a side effect of my transplant,however, I’ve beat AML twice �� attending nursing school currently with a long term goal of DNP i believe having experienced acute care personally will help me to understand the patients better. To answer your question i would rather receive the colonoscopies lol

  • I am also a Crohn’s patient and had to go through a total proctocolectomy surgery with a permanent ileostomy

    since I was diagnosed I looked at things from this perspective.. and tbh Crohn’s has taught me A LOT of things since I was diagnosed in 2011

    I believe having Crohn’s is the main reason that got me to being accepted in medical college rn (Im a medical student btw)

    Im trying to explain what I want to say without using your exact same words.. it is too hard because I agree with what you said from the bottom of my heart

  • Thanks for watching! If you enjoyed this video, consider signing up for my newsletter. I send out weekly lessons learned, like the ones I mentioned in this video. https://medschoolinsiders.com/newsletter/

  • Thank you for sharing your story. I am a medical student living with SLE, and I hope having lupus will make me a better and more empathetic physician. I really admire your discipline and your videos inspire me every day. Keep going!!

  • After random autoimmune hepatitis resulting in acute liver failure, I felt like I had been turned into a zombie. I have barely any energy to do things and live in constant brain fog. Despite exercise, a good diet, sleep, and even taking heart failure supplements, I usually feel so enervated that I lie in bed whenever I can, sometimes for days at a time. If I try to soldier on, I faint and hurt myself, and develop deep muscle pain. I was diagnosed with fibromyalgia, but because lots of people don’t think that’s real, I just keep quiet about it. I’ve found that there are some plus sidesfor instance, I was never before so motivated to become so organized and driven towards a goal, and I get to walk around with a cane* and take elevators. I’ve also discovered through experimentation that compression wear helps with the muscle pain. I’ll be damned if I don’t try to make a positive difference in this world before I’m entirely useless, so I went back to school and finished the premed courses with perfect grades. But now, COVID-19 has made it infeasible for me to adequately address my fatigue and brain fog through diet and exercise (only non-load bearing cardio has reliably been able to boost my energy without resulting in a crash), I’m scared that I’ll drop the ball at the crucial moment with my impending MCAT. I feel like I’m slowly marinading in Hell. I put so much work into getting those grades.
    *I do feel silly with the cane, but I have osteoporosis due to the steroids from the autoimmune things, so I started carrying an umbrella-cane after I fainted outside and fell down the stairs. It’s pretty handy, actually! I’m never caught outside in the rain unprepared!

  • I have Ehlers Danlos Syndrome which for me has caused a lot of bowel issues so have been in your shoes many times! Had a lot of endoscopes and gastroscopies too.

  • We started a new group that allows discussion in a more relaxed tone. Its not proanything but progetting everyone better! No one will be banned from our group. We want to help people thats all. We have pointers for fighting fatigue through vast experience https://www.facebook.com/groups/460858997999634/

  • I like how YouTube is suggesting the colonoscopy video after this as if we’re catching up on a certain part of his life but in a good way

  • In my country they do it without anesthesia… You are so lucky to have such a opportunity

    I might have IBD and I’m mentally preparing myself for my first endoscopy and colonoscopy

  • Just wanted to say thank you for this video, and your honesty and encouragement. I am in the process of getting diagnosed, and IBD seems the most likely at the moment (family history). I’m also having a particularly bad flare, while also under a major deadline to submit a paper for graduate school applications. After my sixth trip to the bathroom tonight I was feeling hopeless and like I couldn’t do the thing. And then I remembered you and this video specifically. And I realized, maybe I can’t work the way I’m used to working, but I can still find a way to do this. So I am now working on my paper, from the toilet. Not something I expected to do, not how I’m used to working, not how I would prefer to work, but I realized that, in part thanks to your honesty of sharing your experience, I’m figuring out how to find a new normal. And I can do this. Thank you.

  • just bt-dubs, everybody would shit their pants if they shot themselves in the head cause you automatically evacuate your bowels when you die, so its normal.

  • 🙁 Shit we need Communism Atleast you are rich, I wish I could go to the USA and get the best of the doctors available in the world.

  • I’m finally coming to terms with the fact that I’ll have to take four giant horse pills every morning for the rest of my life. 3 years after my UC diagnosis. I’m lucky that it’s mild I guess, but it’s still terrifying to poop blood every day for months. I’m still embarrassed to talk about it; there are much sexier illnesses to have, like diabetes or sciatica. The hope I cling to is that my UC may have been asymptomatic for a decade before diagnosis, wreaking havoc on my body silently. If I get my UC truly under control, which seems possible for me, I may see improvements in my ADHD, anxiety, depression, eczema, joint paint, and diffuse hair loss. I hope this is the case for all my fellow UC sufferers. There’s a lot of new research out there. I hope we all feel better.

  • Why is Crohn’s disease so common in Bengalis? I know 4 people personally all who are bengali that have Crohn’s (1 including my cousin). I now know you too and Mr Beast! Good luck with everything, your approach to life is unmatched and I hope to be able to apply this to my final year in uni studying chemistry! My productivity is very poor unfortunately.

  • thank you for your honesty, Kevin. you were very funny and open in this one, just being yourself. <3333 I've been living that ibs life for about 15 years now, and i share a lot of your sentiments regarding the positivity. have a great day!

  • I’ve heard that hundreds of people who suffer from IBD went on the carnivore diet and they are completely symptom free and stopped all their medications.

  • Try adapting to a new normal when your whole nervous system is inflamed and constantly producing anxiety, depression, fatigue… I’m just jealous of people who can at least do something in life and not be halfor fully bedridden. Suffering really puts everything into perspective.

  • Dude, I love the way you’re so happy in these videos. Really agree with your message, to have a positive outlook on a chronic illness, it does make you appreciate life a little bit more when you’re on remission. *what doesn’t kill you makes you stronger ��! *

  • I think it would be really interesting to see a collaboration between Hank and Hannah Witton. Both have colitis but seem to have similar but very separate experiences with their disease. I think it would be really cool to see them discuss the impact on them and their lives and the differences between their experiences.

  • I utterly empathize with you, Hank, But I have a small amendment I’d like to add to something you said early on in this video. You said that there’s nothing worse than incurable. I’d like to add that there is only one thing I’ve found worse than incurable, that’s incurable AND untreatable. My daughter has UC, amongst other things, and this is what I try to tell her to help. “At least your is treatable.” I have Charcot Marie Tooth disease, and the worst part of it is the fact that, currently, there is not only no cure, but there’s no official treatment, either. I’m not looking for sympathy, just thought I’d share a little tidbit. Thanks for sharing!

  • My sister had it long ago. It was just part of every day life. We all made changes to ease her life. She made changes and took medication to minimize symptoms. Hers started nearly 40 years ago but eased up about the last 5 years of her life.
    On the other side of that is the young man who worked at a gas station near our house. His had reached the point he opted for the ostemy bag. It let him reclaim his life.
    My best to you