Midwest Women's Vascular Advocates April Meeting

MWVA invites you to our next support group meeting!

Saturday,  April 30, 2011

10:00 am - 3:00 pm

Mayo Clinic Health System: Albert Lea Medical Center
404 West Fountain Street
Albert Lea, MN  56007

Meeting Room 20


“This ISN’T What I Signed Up For”

Guest Speakers:
Mark Patrick, Licensed Marriage and Family Therapist
Polly Patrick, High School Teacher, Teacher Instructional Coach Inspirational Speaker


Come share your experience with others. A light lunch will be provided.
Meeting FREE of Charge.


Please Register by April 23, 2011: email us with the number attending and updated contact info:
mwva@me.com



MWVA will be collecting new and gently used items, to be sold on ebay for the Joe Niekro Foundation. Proceeds to benefit brain aneurysm research, education and awareness.


For questions please email Jennifer or Kari at mwva@me.com

We hope you can join us!

March 3, 2011 Transcript from Twitter FMDChat

Midwest Women's Vascular Support Group

Twitter FMDChat is Tonight from 7pm-8pm CST! FMDChat is a Twitter Community to open communication and expand knowledge of FMD. #FMDchat

We will break down our chat into twitter questions- T1,T2, T3 so please reply according to the the tweet question. #FMDchat

FMDChat
FMDChat is open to the public and will cover topics related to Fibromuscular Dysplasia. #FMDchat

mdulrich Michael Ulrich
test #fmdchat

jenniferm7373 Jennifer Moreen
test #FMDChat

FMDChat
Welcome to FMDChat FMDChat is a Twitter Community to open communication and expand knowledge of FMD. #FMDchat

FMDChat
Our Chat will start in a moment, please take a moment to introduce yourself remember to use #FMDChat

FMDGirl Kari Ulrich
Kari here- FMD pt- carotids, renal, femoral and Mals! Looking forward to meeting you all! #FMDChat

FMDChat FMDChat
Welcome Roxy Girl! #FMDChat

jenniferm7373 Jennifer Moreen
I'm Jennifer Moreen in Minnesota, have FMD in coronary arteries, corotids, vertebrals, illiacs and right renal. #FMDChat

mdulrich Michael Ulrich
Michael Ulrich MD, Family Practice doc here for FMD chat. #fmdchat

FMDChat FMDChat
I want to remind everyone Brain Aneurysm Awareness week is March 14-20, 2011 http://joeniekrofoundation.com/ #FMDchat

FMDChat FMDChat
Welcome Jennifer! #FMDchat

FMDChat FMDChat
T1- How has FMD changed your life? #FMDchat

FMDGirl Kari Ulrich
T1- I have a lot of pajama days!! #FMDchat

mdulrich Michael Ulrich
T1- FMD has changed life significantly. Learned there are good days / bad days. #fmdchat

FMDChat FMDChat
I get it roxy! I think it has invaded every vascular bed in my body! #fmdchat

jenniferm7373 Jennifer Moreen
My life has changed significantly -- lots of meds, lower energy, a new "normal" that is hard to get used to. #fmdchat

FMDGirl Kari Ulrich
I am on 4 blood pressure meds and my BP still is not in good control, very fatigued- biggest complaint I have #FMDChat

FMDGirl Kari Ulrich
Jennifer and Michael- how much do you think the side effect of BP meds contribute to fatigue vs the disease? #FMDChat

jenniferm7373 Jennifer Moreen
That's a good questions. I think meds are a big factor - the b.p. meds slow everything down. The disease itself? Not sure.. #fmdchat

FMDChat FMDChat
@RoxyGirl1013 I understand be scared being by yourself! #FMDChat

mdulrich Michael Ulrich
I think that BP meds can contribute to fatigue in many ways. But every person with FMD is unique. #fmdchat

jenniferm7373 Jennifer Moreen
For me a good day is: no headache, enough energy to work and get things done and stay up until 10 p.m. #fmdchat

FMDChat FMDChat
T2- What do you want Doctors to know about your disease? #FMDchat

jenniferm7373 Jennifer Moreen
Not sure if this is the right forum, but Michael, I'm curious of your thoughts on adding CoQ10 for energy and cell health. Risks? #fmdchat

FMDGirl Kari Ulrich
I would like for docs to understand FMD is a VASCULAR DISEASE, we need close monitoring, we need a team of physicians #FMDChat

mdulrich Michael Ulrich
My understanding is that CoQ10 is a natural substance produced in the body. Statins deplete it. Thumbs up! #fmdchat

mdulrich Michael Ulrich
I also think that a good omega 3 fish oil is important. #fmdchat

mdulrich Michael Ulrich
Agree Kari - patients need a doc who knows FMD and can follow them regularly. #fmdchat

jenniferm7373 Jennifer Moreen
Good to know, thanks! I've been told by my cardiologist and other docs to take fish oil supplements. Very helpful. #fmdchat

FMDChat FMDChat
@RoxyGirl1013 FMD patients are very knowledgeable in their disease, many docs learn from the info we bring them to the office #FMDChat

CuteNicuNurse Jen W.
Very!! :)RT @mdulrich: I also think that a good omega 3 fish oil is important. #fmdchat

FMDChat FMDChat
T3- What helps you get through a day with FMD? #FMDchat

FMDChat FMDChat
Welcome @CuteNicuNurse- we are chatting about FMD a vascular disease- just curious have your heard of it? #FMDchat

FMDChat FMDChat
@CuteNicuNurse FMD can affect infants too! It can lead to stroke, kidney problems- depending on the vascular bed #FMDChat #FMDchat

mdulrich Michael Ulrich
I also think diet important - specifically diet low in too many "quick carbs". #fmdchat

PracticalWisdom Lisa Fields
Sorry for the interruption but wanted to give my Blessings for your Chat tonight. #fmdchat

PracticalWisdom Lisa Fields
I'm Lisa Curious Adult Education Scholar who morphs the ho-hum into compelling. Speaker, Trainer, Presentation Designer, Rascal. #fmdchat

jenniferm7373 Jennifer Moreen
Michael, I agree 100% about diet, but curious why specifically quick carbs. #fmdchat

mdulrich Michael Ulrich
In terms of diet - I am speaking of general cardiovascular health - not just FMD! #fmdchat

FMDChat FMDChat
Thank you @ParticalWisdom for joining us! #FMDchat

FMDChat FMDChat
I disagree with the quick carb having anything to do with FMD #FMDchat

jenniferm7373 Jennifer Moreen
Got it. So true because quick carbs drain our energy overall, which is the last thing we need! #fmdchat

mdulrich Michael Ulrich
A diet balance of too many quick carbs leads to high insulin which is bad - need to avoid insulin spikes. #fmdchat

FMDChat FMDChat
Jennifer that makes sense to me. #FMDChat

jenniferm7373 Jennifer Moreen
I'm curious if anyone feels that FMD has had any positive influence on their life... any new, good things to come of it? #fmdchat

mdulrich Michael Ulrich
Too many insulin spikes could lead to insulin resistance and type 2 diabetes which can increase to heart disease risk - #fmdchat

mdulrich Michael Ulrich
All FMDers need to minimize ALL risks for heart diease. #fmdchat

FMDChat FMDChat
You are right @cuteNICUNurse, very rare in infants, I am curious if SIDS could be connected to FMD in some cases #FMDchat

FMDChat FMDChat
@CuteNicuNurse FMD is not commonly looked for on autopsy #FMDchat

PracticalWisdom Lisa Fields
@jenniferm7373: That's a great Question. I'd also like to know if there is any new research coming out. Where do you find hope. #fmdchat

FMDChat FMDChat
Jennifer- positive influence- YES! I am much more proactive in my health and respect my body much more #FMDChat

jenniferm7373 Jennifer Moreen
@PracticalWisdom Many of us are in various studies, not much is known yet about FMD but we're trying to change that #fmdchat

FMDChat FMDChat
Great Question @PracticalWisdom! http://bit.ly/fxZon7 #MCCSM #FMDChat

PracticalWisdom Lisa Fields
@jenniferm7373 I'm impressed that you and @FMDGirl are working so hard. We must get the word out I"m impressed with the efforts. #fmdchat

mdulrich Michael Ulrich
one big source of research will be the FMD patient registry through FMDSA. #fmdchat

FMDChat FMDChat
FMD Research: http://bit.ly/e9jMLO - More money is needed for research #FMDchat

mdulrich Michael Ulrich
much of the research has been driven by Dr Jeff Olin and other dedicated Vascular docs. #fmdchat

FMDChat FMDChat
@PracticalWisdom you have been a great strength and resource, I am grateful for your wisdom ;) #FMDChat  

FMDChat FMDChat
T4- How can FMD awareness be spread more quickly and accurately? #FMDchat

PracticalWisdom Lisa Fields
Looks like an Impressive MD: Dr. Jeff Olin-http://www.mountsinai.org/profiles/jeffrey-w-olin #fmdchat

jenniferm7373 Jennifer Moreen
Thank you, PracticalWisdom. I'm new to twitter and don't know how to reply to you w/the @ sign! LOL #fmdchat

FMDChat FMDChat
Roxy asks: Michael, curious to know your opinion on the correlation between FMD and adhesions, if any.#FMDchat

mdulrich Michael Ulrich
Patients also benefit from an "FMD Clinic" model where they can be followed. Cleveland Clinic with Dr Heather Gornik is example. #fmdchat

PracticalWisdom Lisa Fields
@jenniferm7373: My pleasure. You are doing great. My Big secret is TweetChat. There are columns that give quick choices. #fmdchat

FMDChat FMDChat
Roxy: Don't forget to take the FMD patient retreat survey! http://www.surveymonkey.com/s/YKBHN2X #FMDchat  

mdulrich Michael Ulrich
re question about adhesions and fmd - I agree there is correlation and likely related to connective tissue component. #fmdchat

PracticalWisdom Lisa Fields
RT @mdulrich: Pt's benefit from an "FMD Clinic" model. where they can b followed. Cleveland Clinic Dr Heather Gornik is example. #fmdchat

FMDChat FMDChat
@PracticalWisdom I am still learning tweetchat- we need to have a phone conference Lisa :) #FMDchat

mdulrich Michael Ulrich
my question is how many out there have fmd and are asymptomatic? #fmdchat

FMDChat FMDChat
My dream is that Mayo Clinic Rochester get an "FMD Clinic" it is so needed! We need a team of docs #MCCSM #FMDChat  

mdulrich Michael Ulrich
to what extent does fmd "spread" in a patient - and what are the triggers? #fmdchat

PracticalWisdom Lisa Fields
What R classic symptoms might be missed?RT @mdulrich: my question is how many out there have fmd and are asymptomatic? #fmdchat

FMDChat FMDChat
We are about out of time- I want to thank each of you for participating in our first FMD Chat! #FMDchat

jenniferm7373 Jennifer Moreen
Good question about asymptomatic people. There are likely very many. Many of us were basically symptom free until a crisis hit. #fmdchat

mdulrich Michael Ulrich
classic symptoms depend on where FMD is. In carotids it is the "whoosh" sound with a bruit. #fmdchat

FMDChat FMDChat
Thank you so much for joining us on FMDChat. Please check back for our next FMDChat date and time! #FMDchat

FMDChat FMDChat
Questions about FMDChat can be directed to mwva@me.com #FMDchat

mdulrich Michael Ulrich
other symptoms can be secondary related to hypertension and other effects of the disease - fatigue, headaches, etc.. #fmdchat

FMDChat FMDChat
Don't Forget! Brain Aneurysm Awareness week is March 14-20, 2011 http://joeniekrofoundation.com/ #FMDchat

mdulrich Michael Ulrich
of course, fmd can lead to strokes, heart attacks. #fmdchat

PracticalWisdom Lisa Fields
Thank you so much for the information and chat tonight. How exciting to have your first FMDChat. Congrats! #fmdchat

FMDChat FMDChat
Goodnight everyone! Thank you!! #FMDchat

PracticalWisdom Lisa Fields
Good night @FMDGirl @mdulrich @Jennifer7373 http://www.youtube.com/watch?v=cp7_u0kcQRo #fmdchat

PracticalWisdom Lisa Fields
@FMDChat: Congrats on First #FMDchat. Proud U R my Friend/Teacher. http://www.youtube.com/watch?v=axLRUszuu9I

GET LUCKY WITH THE JOE NIEKRO FOUNDATION FOR BRAIN ANEURYSM AWARENESS WEEK

March 14-20, 2011 has been declared as Brain Aneurysm Awareness Week and to help bring awareness to the importance of early detection, The Joe Niekro Foundation has launched a national initiative called Wanna Get Lucky?.  This catchy slogan has been printed on thousands of t-shirts and being promoting to various communities across the country.  You can spread the word by helping us promote Wanna Get Lucky? The more awareness we can bring to this silent killer, the more success we can have in preventing them.  1 in 15 people in the US will develop a brain aneurysm and 50% of ruptured aneurysm victims will die within minutes.  Brain aneurysms are detectable and treatable, which is why this public awareness campaign is critical in educating the public of the warning signs, and most importantly to GET SCANNED – especially if there is history of aneurysms in the family.

Shirts can be purchased online at www.joeniekrofoundation.org and available in Men’s and Ladies tees, Women’s cap sleeve, v-neck and women’s tank tops. Colors include black, red, navy and pink.  Prices are $10 for Men’s and $12 for women’s (plus $4.95 for shipping) and all proceeds benefit aneurysm research, treatment and education.

The Joe Niekro Foundation was named in honor of Joe Niekro, a former Minnesota Twin and 22 year major league knuckleball pitcher who lost his life suddenly to an undiagnosed brain aneurysm on October 27, 2006.  Joe’s daughter, Natalie – founder and president of The Joe Niekro Foundation now commits her life to raising funds in support of brain aneurysm research, treatment and education in attempt to combat the enemy that prematurely took her father.

For more information visit www.joeniekrofoundation.org

Fibromuscular Dysplasia: An Overlooked Diagnosis

Fibromuscular Dysplasia: An Overlooked Diagnosis

This Valentines Day be good to your Heart

This Valentines Day, I decided to thank my heart for each beat of life it gives me. I jumped on the treadmill this morning and exercised my heart. What a great feeling to make a difference in your own health! Valentines is a day to celebrate love for another, why not it be the love and awe for what our body does for us each day. Our body is the house of our soul, so why not show our appreciation by doing something good for our heart.

Amazing Heart Facts From NOVA ONLINE
http://www.pbs.org/wgbh/nova/heart/heartfacts.html
Sure, you know how to steal hearts, win hearts, and break hearts. But how much do you really know about your heart and how it works? Read on to your heart's content!

    •    Put your hand on your heart. Did you place your hand on the left side of your chest? Many people do, but the heart is actually located almost in the center of the chest, between the lungs. It's tipped slightly so that a part of it sticks out and taps against the left side of the chest, which is what makes it seem as though it is located there.


    •    Hold out your hand and make a fist. If you're a kid, your heart is about the same size as your fist, and if you're an adult, it's about the same size as two fists. 


    •    Your heart beats about 100,000 times in one day and about 35 million times in a year. During an average lifetime, the human heart will beat more than 2.5 billion times. 


    •    Give a tennis ball a good, hard squeeze. You're using about the same amount of force your heart uses to pump blood out to the body. Even at rest, the muscles of the heart work hard—twice as hard as the leg muscles of a person sprinting. 


    •    Feel your pulse by placing two fingers at pulse points on your neck or wrists. The pulse you feel is blood stopping and starting as it moves through your arteries. As a kid, your resting pulse might range from 90 to 120 beats per minute. As an adult, your pulse rate slows to an average of 72 beats per minute. 


    •    The aorta, the largest artery in the body, is almost the diameter of a garden hose. Capillaries, on the other hand, are so small that it takes ten of them to equal the thickness of a human hair.


    •    Your body has about 5.6 liters (6 quarts) of blood. This 5.6 liters of blood circulates through the body three times every minute. In one day, the blood travels a total of 19,000 km (12,000 miles)—that's four times the distance across the US from coast to coast.


    •    The heart pumps about 1 million barrels of blood during an average lifetime—that's enough to fill more than 3 super tankers. 


    •    lub-DUB, lub-DUB, lub-DUB. Sound familiar? If you listen to your heart beat, you'll hear two sounds. These "lub" and "DUB" sounds are made by the heart valves as they open and close.

What empowers patient health care advocacy?

Patients advocates are revolutionizing heath care. They are taking a road less traveled to make the path easier for others.

I believe it goes beyond caring for the human beings, there is a compassion in the advocates soul that cannot be defined by words.

Patient advocates are laying the foundation in opening communication with the health care community.

We are becoming the voice of many who are too exhausted by the health care system to speak for themselves. We are active listeners. WE LISTEN. Many health care providers do not have the time to actively and fully listen to a patient. When a health care provider on average has 10 minutes of time devoted to patient care, including the physical exam, and documentation it does not leave enough time for active listening.

Patient Advocates are able to listen in several ways that physicians are not. We are blogging, we are making known how our daily life if affected by disease, this enables other patients to interact and gives us an opportunity to listen to their experiences. We are active users of Facebook and Twitter, helpful tools for active listeners. We are letting patients process and work through their disease. We are developing relationships through social media that are spilling over to more traditional ways of communicating. The telephone! My long distance bill has dramatically increased over the years, and every time I pay my enormous bill I look over who the I have listened too, patients from all over the United States and as far as South Africa. Each phone call always ends with the words “Thank you for taking the time to listen”.


Why do we advocate, and take the time to listen? I am willing to bet that each of the leading patient advocates have asked themselves at one time or another why do we bother? Advocates gain wisdom from listening, advocates are educational sponges trying to soak up and process information. We voice this information to everyone around us. We get our energy from expressing and communicating. We don’t let our disease define us, but rather we take control of our lives in a proactive way that serves others.

Our reward is seeing relationships build and communication opening within the health care community. We are partners in the health care team that are making the future better for others.

MWVA thanks you for supporting Fibromuscular Dysplasia

Midwest Women’s Vascular Advocates (MWVA) would like to thank all of our Pepsi Refresh supporters:  

Our MWVA Advocates

The many FMD patients, friends and family

The FMD Yahoo Online Support Group

Dr. Jeffrey Olin of Mount Sinai School of Medicine

Dr. Heather Gornik of Cleveland Clinic Foundation

Mayo Clinic Health Systems, ALMC

NORD- National Organization for Rare Diseases

The Joe Niekro Foundation

Pepsi Refresh Everything Canada

All of our Pepsi cause supporters

Although we did not receive the grant, the awareness that was brought to Fibromuscular Dysplasia was phenomenal!

We ended up ranking 22 out of 1000 causes! 

There were 21,251 comments made on our Pepsi refresh page, what an incredible way to spread awareness of Fibromuscular Dysplasia! Our MWVA team along with other FMD advocates posted thousands of comments on FMD educational facts, both in the United States and Canada.

Here is just one of the many comments we received, “LADIES: You may not have made it to the top drawer this time, but console yourself with the thought that you have educated MANY, MANY people to this disease! WELL DONE AND KUDOS TO YOUR PERSEVERANCE. You are truly CHAMPIONS!! “

MWVA will continue to raise awareness and support those affected by non inflammatory vascular disease. We are pleased to announce that through the efforts of the Pepsi Refresh everything challenge, Midwest Women's Vascular Advocates and the Joe Niekro Foundation have formed a partnership to help promote Brain Aneurysm Awareness and Education. We are looking forward to working closely with the Joe Niekro Foundation in pursuing our missions and future goals.