the afternoon nap society: Dr. Mike Sevilla Has Left The Virtual Building

Bravo Afternoon Napper! Dr. Sevilla is a leader and an ethical mentor to many. He leaves behind a legacy of of empathy, compassion and defines what participatory medicine is. Many have learned from his wisdom and knowledge. 

the afternoon nap society: Dr. Mike Sevilla Has Left The Virtual Building: Hearing of Dr. Mike Sevilla's decision to leave the realm of healthcare and social media was like stumbling across the obituary notice o...

Rare Disease Day 2013

I have not blogged in awhile, but today has been an incredible day! I have little energy to write so here is my video blog:

Thank you President Obama for addressing rare disease with our nation!

To my elected officials:
President Obama
Representative Walz
Senator Franken
Senator Klobuchar

We need funding for Fibromuscular Dysplasia (FMD)/ Ehlers Danlos Syndrome
(EDS) National Institute on Aging/NIH's Connective Tissue Disorders;
Clinical and Molecular Manifestations of Heritable, Disorders of
Connective Tissue Study, Principal Investigator: Nazli McDonnell, M.D.,
Ph.D. NIA

Please support rare disease research.

Warmest Wishes on Rare Disease Day 2013!

Kari Ulrich

Fibromuscular Dysplasia and Ehlers Danlos Syndrome

The Patient Movement

Last night was a challenging night for me. I have been off social media for sometime. Oh I will pop on here and there but mostly I have taken a step back.

Tomorrow morning I am scheduled for a test, which as a patient with a chronic illness I am use to. But this test requires me to be off all my medication for several days except my blood pressure meds. I forgot how bad my daily symptoms are without these meds. I have a better appreciation for pharma, because without these medications my quality of life would be a constant struggle.

Back to the topic... The Patient Movement. I thought during my night hours of dealing with my symptoms I would visit twitter. I wanted to get my mind off of what I was going through. What I read at first made me angry, then very sad and disappointed.

So I spoke up. I spoke up publicly and called out 2 doctors for reprehensible behavior. Yes, these doctors have been called out before, and one has a disclaimer basically stating to read his tweets at your own risk.

If I look back at my tweet history I think there was a time I actually defended one of the docs stating they needed an outlet too. I was naive.

Well what I read last night left me feeling vulnerable as a patient. So, I know I can't change the behavior of these two doctors only they can. I just hope they take the time an consider what they say in public does impact patients. It impacted me. I hope I never have to cross paths with these two doctors, but how will I know? They hide behind being anonymous. They are cowards. It is time for them to choose a new profession.

Funny thing is they both have a lot of followers both patients and doctors, what does that say for the patient movement?


Dr XXX ‏@DrXXX

@XXXDoc my personal fave: The Gram stain of phlegm from AIDS pt with pneumonia... showed SPERM.

COUNTRY MUSIC SUPERSTARS TRAILER CHOIR, CHUCK WICKS AND KEITH ANDERSON TEAM UP WITH THE JOE NIEKRO FOUNDATION AND GO TO BAT FOR ANEURYSM RESEARCH

Country Music Superstars Trailer Choir, Chuck Wicks and Keith Anderson have teamed up with The Joe Niekro Foundation for a weekend of festivities in Houston, TX, April 27th and 28th. It’s all in celebration of the 3rd Annual Knuckle Ball...A Pitch for Life, with proceeds benefitting brain aneurysm research, treatment and education.

Friday, April 27th will kick things off at Dan Electro’s Guitar Bar with a special acoustic, in the round performance, beginning at 8P. Patrons will hear hits like Rockin’ the Beer Gutt and Shakin’ that Tailgate from Trailer Choir, Stealing Cinderella, All I Ever Wanted and Old School from Chuck Wicks, and Every Time I Hear Your Name, Pickin’ Wildflowers and Lost In This Moment from Keith Anderson. These hits plus many more will fill the stage and make country music memories, while attendees experience an up close and personal view of these country megastars. The festivities continue at Minute Maid Park on Saturday, April 28th as the entertainers will be joined by athletes from across the country at the 3rd Annual Knuckle Ball...A Pitch for Life, as they pay tribute to the beloved 13-year Houston Astros All-Star, Joe Niekro. At the peak of his Major League Baseball pitching career, Joe Niekro was famous for his command of the knuckleball, a baseball pitch with an erratic, unpredictable motion. Like a knuckleball, Niekro’s life took an unpredictable path on October 27, 2006, when he died suddenly from a ruptured brain aneurysm.
Niekro served 22 years in the Major Leagues, 13 of those with the Houston Astros. He became the team’s first 20- game winner, and remains the all-time leader in wins among Astros pitchers. Teaming up with his brother, Hall of Famer Phil Niekro, the two combined for 539 wins over their respective careers making them the most successful brother combination in Major League history.
In honor of his memory, daughter Natalie Niekro created The Joe Niekro Foundation, with a mission to raise funds for brain aneurysm research, treatment and help bring public awareness to this devastating condition affecting as many as 1 in 15 people.
A number of Astros players, along with former MLB, NFL and NBA Stars, will be on hand at the black-tie gala, featuring a reception, formal dinner, silent and live auction (for a list of previous attendees, click here). Joe’s brother and Hall of Fame pitcher, Phil Niekro will serve as the evening’s Master of Ceremonies, with a special presentation of The 2012 Joe Niekro Humanitarian Award to Haynes and Boone, LLP Partner and current Chairman of the Board of the Harris County - Houston Sports Authority, J. Kent Friedman.
We invite you to join us for a weekend of fun as we raise money for a condition that is killing thousands every year. For tickets and more information on both events and The Joe Niekro Foundation, visit www.joeniekrofoundation.org/knuckleball.

WHEN: April 27th – 8P – Country Music Concert
Dan Electro’s Guitar Bar, 1031 E. 24th St. Houston, TX 77009
Tickets: $75


April 28th – 6:36P – Knuckle Ball...A Pitch for Life (Joe Niekro’s #36 symbolizes the start time) Minute Maid Park, 501 Crawford Street, Houston, Texas 77002
Tickets: Individual Tickets start at $336, with table sponsorships ranging from $5,036-$25,036.

Chuck Wicks

Trailer Choir

FMD have you seen me?

Brain & Tina Sapp

Guest Blog: A unique perspective about the importance of vascular imaging from a Vascular Technologist and a husband of a FMD patient. 
By Brian Sapp, Lead Vascular Technologist and PACS Administrator at Piedmont Medical Center

Are you finding FMD at your facility? If you are not, chances are that you may not be looking for it. FMD or fibromuscular Dysplasia is a disease that effects primarily the renal arteries, carotid arteries, mesenteric, and iliac arteries in young adults.

 The disease process is most common in women who present with controlled or uncontrolled HTN, TIA, or CVA between the ages of 30-55. The mean age is 36. FMD is not an arteritis and has no known etiology, however it is believed to be triggered by hormones (women and age). FMD usually is left side dominant.

On ultrasound usually you will see laminar flow at the origin of the renal or internal carotid artery then abrupt bruit with increased diastolic velocities in the mid or distal renal/internal carotid artery. On arteriogram a string of beads is the classic sign of FMD. In severe cases the beading is seen on ultrasound. FMD is often overlooked in the carotid artery due to the lack of b-mode plaque visualization and sampling is not performed far enough distally to see the turbulence. Being aware of the patients history and age should key you in on FMD.

Three main things to let you know to look further are :

• Young female with bruit.

• On HTN medication.

• Elevated diastolic velocities bilaterally without plaque formation.

All of these should point to the technologist to look as far distally as possible. FMD is treated by angioplasty and patients generally have very good outcomes. Dissection of the carotid artery and aneurysms are ramifications of undetected FMD.

Tina's story:

Eight years ago I started a job with the Vascular Institute of Georgia, a large vascular surgery practice in Atlanta.  Tina was the manager and lead technologist.  She had taken blood pressure medicine for a short period the year before during a personal time of stress.  Working with such a large group of technologists the subject came up one day, I of course asked to scan her renal arteries.  She stated that they had already been looked at earlier by another tech and that they were fine.

I don't take no for an answer and insisted to take a peek.  Her left renal artery had an unusual look to it had very laminar flow proximally and then took a sharp turn when her diaphragm was relaxed. Her velocities were elevated with her diaphragm relaxed and reduced when she took a breath in and the artery appeared to straighten.  I told her it was FMD she said it was a kink and that the velocities were still well under a 3.5 ratio. When Tina said it was due to a kink, well that was the end of it (if you have ever met her she is indestructible and tough as nails).

The story moves to 18 months later, I have moved to my current employer and we became involved.  Tina had been placed on Diovan and her BP was well controlled.  One evening we went to the local fair and the kids asked her to ride the scorpion, well she got stung.  Upon leaving the ride she looked gray, was sweating profusely and became very nauseated.  Needless to say she has never ridden another ride at the fair, thankfully she did survive.  I immediately asked to scan her renal arteries as we had a trip to Disney planned in a couple of months.  Her left renal artery had developed a full time bruit and the end diastolic velocity was very high, even though the systolic was only moderately high (borderline 3.5).  She had also developed an increased color bruit in the distal right renal artery.

At age 37 the diagnosis of FMD was made and confirmed under arteriogram, she had successful angioplasty and is currently being monitored every six months and is on Cozaar.  Tina fit all of the parameters as far as age, being of the female sex, having a bruit on the left renal artery.  However being a vascular tech herself, she didn't want to accept her condition initially because of her ability to control her blood pressure with one medication.  This is the most important facet to her story.  Anyone who is female and develops a need for blood pressure and fits the age group in my opinion should have a renal artery duplex. 

About Brian:  I have been performing Vascular Ultrasound for 15 years.  I am a very busy person and currently hold several hats. I am a full time employee of Piedmont Physician Group as the administrator of the radiology PACS system and Non-invasive vascular laboratory. I am a working manager, meaning I scan patients every day. I am also a consultant for both CareFusion and Registered Vascular Solutions Inc; a company I founded 5 years ago.  I am married to Tina Sapp who is the manager of Saint Josephs outpatient vascular lab in Atlanta Georgia and a recent graduate of the University of West Florida with a Masters in Health care Administration. Her laboratories produce approximately 14000 high quality studies a year. We have three children together ages 16, 13 and 8. We both are very passionate about vascular testing and vascular education.

Follow Brian:
Blog
Linkedin
Facebook
Twitter
4mylegs.com

Experienced from both sides of the bed

The November 2011 Issue of Readers Digest reads in big, bold print  “50 Secrets Nurses Won’t Tell You”

Articles like this create fear and mistrust in the patient community.

The front of the article states “Doctors are clueless about what really happens in the beds, rooms and halls of our hospital” Really? In my experience physicians are very well aware of what is happening in the bed. I had just had a major vascular surgery in 2009, when I developed chest pain in the ICU.  Who was there at the side of my bed reading my EKG and ordering the Nitro Drip? The ICU nurse? No the Intensivist.  My nurse was amazing. She monitored my pain, adjusted the drip while monitoring my vital signs. It was a team effort.

The next time I am admitted to the hospital should I be suspicious of my vascular surgeon who held my hand and informed me how my surgery went? He drew pictures so I understood and patiently listened to me while I asked questions about my prognosis. What about the fact that the surgeon listened to my suggestions on what I thought could make my recovery successful. Together as a team we made decisions about my discharge. My surgery and all that accompanied it was a positive experience because participatory medicine was taking place.

The Readers Digest states that they “...went to the experts.” Now don’t get me wrong, I have been a Registered Nurse for almost 2 decades, and many nurses are exceptionally intelligent, and dedicated. But I disagree with the light Readers Digest put nurses in. We are part of the team, there are no experts. The doctor nurse relationship is not “them against us” like this article makes it out to be. I am member of The Society of Participatory Medicine who’s mission is to bring together e-patients and health care professionals. We can do better both as health care providers and patients, telling “secrets” is not the answer.

Personally I found a few of the "secrets" offensive and not true of the nursing profession. The article “50 Secrets Nurses Won’t Tell You” is a small representation of nurses, many who are professional and work with values and a code of ethics.
Whatever it takes to sell a magazine right?

I could go delve deeper into this article but I suggest you read the article judge for yourself, let me know your thoughts.

Kari Ulrich,  FMD e-patient, RN
Experienced from both sides of the bed

Getting ready for Surgery

Join FMDChat on Facebook For a Special Chat like no other!

We are doing something a little different in our patient community, and I wanted to share it with all of you.

FMDChat is holding a facebook chat, but instead of doctors telling patients about Fibromuscular Dysplasia (FMD), we are giving patients the opportunity to educate physicians what it is like living with FMD, what our challenges are in health care.

Please join us in our conversation, I hope this is the first of many more to come. I am grateful to the Dr. Sevilla and my husband, Dr. Ulrich for taking this leap of faith and making a difference in our patient community.

Thursday, November 10th from 7-7:30pm CST

Patient voices are an under-utilized resource.

FMDChat wants to raise awareness in the Family Practice Community. Join us and our special guests:

Dr. Mike Sevilla & Dr. Mike Ulrich

As we open lines of communication and educate physicians by communicating through the patient perspective.

This is an opportunity for patients to tell Family Practice Physicians what we need from them!
About our Guests:

Mike Sevilla, MD (@DrMikeSevilla on Twitter) - Family Physician and Social Media Enthusiast since 2005. Topics of his blog and podcast include commentary on current medicine and social media news. To learn more about Dr. Sevilla visit: http://www.familymedicinerocks.com/

Mike Sevilla, MD

Mike Ulrich, MD - Family Physician for Mayo Clinic Health Systems in Albert Lea in Minnesota. Dr. Ulrich is the Division Chair for Family Practice and Medical Director of Emergency Medicine for Mayo Health Systems in Albert Lea, Minnesota. He serves on the Medical Advisory Board for The Joe Niekro Foundation.  He is also husband to FMD patient Kari Ulrich and has a unique perspective on coping with FMD.

Mike Ulrich, MD

Chat Moderated By: Sarah E. Kucharski and Kari Ulrich