Webinar: ACHD Valve replacements

http://vimeo.com/36346383
Link: http://www.achaheart.org/library-education-materials/webinars.aspx
- A video by the Adult Congenital Heart Association on Valve Replacements - worth watching!
About 1 in 5 adults with congenital heart disease (ACHD) are hospitalized for surgery. Most surgical procedures are for valve replacements.
If you are an ACHD patient facing a valve replacement, you will want to attend this webinar. You will learn why you might need a replacement and what the surgical and percutaneous (catheter) options are. The focus will be on valve replacement.
Look for further webinars from ACHD to come and will also be posted in the ACHD resource section on the R hand side of the blog.

Insurance options; Insurance with an CHD

In the coming weeks I hope to compile information on what the different insurance options are available here in WI. Several times over the WI_ACHD list-serve ive seen now members asking or talking about their insurance status and I have been thinking about this since. I also will soon post a list I have compiled over the years of organizations and charities that offer financial and insurance assistance for programs such as high risk insurance or medication costs. If you would like a copy of this comprehensive (albeit there is no way to list all programs available) word document of assistance programs here in WI and national email me at thielerica@gmail.com In the mean time some of the options I hope to cover to some degree include:

Badger Care Badgr Care Plus and Badgr Care Core+ One is for families with small children making under a certain income limit per year depending on family. The other program Core+ is for adults without children lacking insurance who also make under a certain income limit per year.

WI-High Risk Insurance pool - (HIRSP) A plan offered to people in-eligible for private or federal insurance due to pre-existing conditions (which will no longer be a cause for dismissal or denial under the new Federal Halth Plan commonly referred to as 'Obama Care') HIRSP is a high risk insurance pool to cover more people who otherwise would not have health insurance. Deductibles and co-pays can often be very expensive although some underlying diseases offer programs to help cover such costs. As an example for my disorder there is a program through uneedpsi.org (Patient Services Inc) to help individuals covered under such plans as these cover the insurance costs and have access to life-saving treatments.

Medicaid - also referred to as Badger Care but differing in set-up from Badger Care Plus and Core+ plans although eligibility is also based on income limits and in some cases to those who are deemed disabled but not eligible for medicare due to not enough 'working credits' or no underlying working history.

Private Insurance - Often offered through ones employer health plan but can also be guaranteed to kids of parents covered under such policies up till the age of 26 with the new federal health insurance plan again ocmmonly referred to as 'Obama Care'. Usually the private insurance plan will require proof of post-secondary enrollemnt on a yearly or twice yearly basis.

Private Insurance under a parent or guardian as a disabled individual: This option is usually for those individuals who have been classified as disabled and met their parents/guardians health plan 'disabled family member' requirements. Typically when one is deemed disabled the individual or family can contact the insurance company/employer insurance group health plan provider before the age of 18 and ask for paperwork to establish longer term coverage and the insurance plan/company will go through a process and decide if the individual meets their standards for disabled coverage. This typically requires yearly renewals and paperwork verification.

Katie Beckett - The Katie Beckett Program is a special eligibility process that allows certain children with long-term disabilities, mental illness, or complex medical needs, living at home with their families, to obtain a Wisconsin ForwardHealth Medicaid card.
Children who are not eligible for other Medicaid programs because the income or assets of their parents are too high, may be eligible for Medicaid through the Katie Beckett Program. A child may be eligible for this source of Medicaid even if they are currently covered under a private health insurance policy. Although this program typically applies to children under 18 I was reminded that there are many ACHD'ers who also know others with small children with CHD and this program can help those children.

Look for further information on some of these options soon!
ET (WI.ACHD)

Latest Wi-ACHD information and on-going additions to blog

WI-ACHD List-serv email - if you are not on the group email and reading this but would like to receive any emails from WI_ACHD Founder Patty Brown or from myself (running this blog) please feel free to email wi_adult_congenital_heart@yahoo.com - for blog quesitons or ideas please email me (Erica) at wi.achd@gmail.com or leave a comment in the comments section. - Erica ------------------------------------------------------------------------------------------------------------------------ From Patty - Hi all, I hope everyone is enjoying this wonderful spring weather!! I want to get going on desiging a brochure. My thought is a trifold, full color brochure that identifies us, and helps people find us. It will include our email address, blog address, facebook page, etc. I want to get them to healthcare providers all over Wisconsin to get the word out to ACHD patients that do not know we exist. I think the best way is to get the information to healthcare facilities. I like that our blog shows "faces of WI-ACHD" because it makes us real. Adults from 18 to 60 and many different backgrounds are a part of this group. At first I thought about a "poster child" on this brochure, but then I thought it would be better show that there are a lot of us from all over affected and we can carry out the "faces of WI-ACHD" idea as well. I am asking if you would consider sending me your picture so that I can put it into this brochure to fill in the background. It doesn't have to be a formal pic -- even one from every day life or doing something you enjoy. I will get my graphic artist at Northstar Printing to then put them all together. Dr. Earing is suggesting a less formal meet and greet this spring, and then having his office host a "community meeting" in fall. I think it is important for us to get together -- and May sounds good to me. Dr. Earing suggested a bowling night or something similar, instead of a formal "meeting" -- and to make it fun. What is best?? A week night?? A Sunday afternoon?? Let me know your thoughts, and if anyone wants to help organize our first meeting - speak up. Patty ------------------------------------------------------------------------------------------------------------------------ -This is Erica again. I am continuing to collect pictures for the 'faces of wi-achd' slideshow and so with permission will use any pictures we receive here on the blog as well. If there are any articles anyone has found interesting and would like to share here please fwd those and I will add to our resource section which I hope to make in to an area that anyone can go to and find some of the latest journal articles that have been published on our disorders, syndromes and latest research. (pubmed is an excellent resource for this). I also once I get time would like to do different posts on different underlying CHD diagnoses including some of what our members are living with and including some of the genetic syndromes that have also been shared. Some of these can be passed on to children and I believe knowledge is power. I enjoy learning about what others are living with and how these different disorders and syndromes are treated, prognosis, etc and would like to share what I find with others. This will take some time and be an on-going process in-which I hope to get feedback on what you all think along the way. Thanks for stopping by and if you have suggestions please do feel free to chime in - we want this to be a community project - I will be the facilitator of sorts but this is everyones blog to share our lives, our triumps, family, surgeries and anything anyone wants to share! :)

Krystal, Age 27 newly acquainted to ACHD; previous CHD pt.

Hi Everyone, My name is Krystal Wutt, I am 27 years old, and I live in Stevens Point, Wi. I was born with a hole in my left aortic valve but it was not detected until I was about 3 or 4 years old. I was sent from doctor to doctor, they all kept saying I had asthma, because of my shortness of breath and low energy. I finally was referred to Dr. Friederg, who right away had me come in and they sent a balloon up through my thigh to my heart and thats how they were able to tell what the exact problem was. At that time it already had a very small leak and because it is in my family but skips every 3rd generation, I was the one to get it and they determined I was born with it. Dr. Friedberg and his team were so awesome, they all became like family to me, Dr. Friedberg just wasnt my doctor he was my best friend. I saw him for many years and at the age of 15 I had my first open heart surgery done by Dr. Twedell and they sewed my hole which was at the time the option we wanted to go to give me time to have children because that was always my number one dream:) I am now 27 was not blessed with having children and now with Dr. Friedberg being retired and my age I am now Dr. Earings' patient. I went to see him for the first time in Feb. of this year to perform the echo and the news was my valve is leaking pretty good and surgery is being put in order. This time I am going to go with a mechanical valve because I just dont want to have to go through with another surgery in x amount of years, I want something that will last a long time. I have my consultation with Dr. Twedell on April 6th to go over everything and hopefully set a date for surgery then. I also learned I have anxiety and have been put on meds for that as well, for 2mths I couldnt do anything, didnt want to do anything, couldnt relax, couldnt sleep, couldnt function properly, dizzy and nauseus all the time. So needless to say this year has not started out the way I was hoping but I know in the long run it will all be worth it. We all just have to keep fighting and doing what we can:) I am so thankful to those of you who have started this, help with things, and for everyone sharing their story. Its great to know and be able to share our stories with people who can relate. I hope to meet all of you one day:) You can also find me on facebook, Krystal Selthofner Wutt, if you would like to chat more with me def send me a friend request and we can keep in touch that way as well:)

Patty Brown, WI-ACHD Founder

My name is Patricia A. Brown. Most people call me Patty. I am 45 y/o and currently live in Brown Deer, Wisconsin. I am a lawyer and I am self employed with a full time law practice. I also am part of a family printing business part time known as Northstar Printing & Graphics. Both businesses have websites if you care to check them out. www.patriciabrownlaw.com and www.northstarprinting.net I came from a large family -- I have 11 siblings. One of my older brothers and I were born with a congenital heart defect. My brother had a VSD repair in approximately 1960. He is 55 years old and never had any further known problems. I was born with ASD which went unnoticed for 8 years. I was told that since my heart had pumped irregularly for 8 years, my pulmonary valve became stenosed. My parents were told that without surgery I would die before I was 10 y/o. I underwent surgery in 1974 at Children's Hospital in Milwaukee by Dr. Litwin. He patched the hole in my atrial wall, and repaired my pulmonary valve. After that surgery, the valve always leaked, but I had normal pulmonary pressures. I was mostly fine, but always became out of breath pretty easily and couldn't keep up with my peers in athletics. My child cardiologist was Dr. David Friedberg. I didn't really follow up with a cardiologist once I hit adulthood until 1997 when it became clear that I had atrial tachicardia. I was referred to an electrophysiologist who did an ablation, but it didn't work because of too much scar tissue from my heart surgery. The arrhythmia was controlled by medication for about 10 years while I was bumped around from one adult cardiologist to another at Aurora. In 2006 my annual echo showed that my right ventricle was more enlarged, and I underwent a catheterization which still showed normal pulmonary pressures. It was determined that the leak in my pulmonary valve was getting worse. Each year thereafter the echo showed the right ventricle more and more enlarged and in 2010 they found me in atrial flutter. Aurora moved me to the heart failure clinic at St. Lukes, and that is when I decided it was time for a second opinion. I went outside of Milwaukee to a group of cardiologists in Green Bay who told me that I needed an Adult Congenital expert. That is when I learned about Dr. Earing. I saw Dr. Earing in April, 2010, and I had open heart surgery in June 2010 at Children's Hospital by Dr. Tweddell. I was the biggest baby in the CICU that week. They replaced my pulmonary valve with a bovine valve, and now I feel more normal and healthier than I have ever felt in my entire life. Last year I participated in the US Bank climb and trained for 150 mile bike ride. Unfortunately I broke my arm 2 days before the ride and could not participate, but I was physically ready for it. These are things I was never able to do prior to my valve replacement. Dr. Tweddell also repaired my tricuspid valve and a MAZE procedure to correct the arrhythmia. I needed a pacemaker after the surgery, but feel great.. Six months post op my right ventricle was normal size. This was an amazing difference from the heart failure clinic at St. Lukes, and I can only wonder why none of the treating doctors had referred me to an Adult Congenital expert much sooner. I did go to Mayo clinic for a second opinion regarding the need for surgery. Mayo has the largest adult congenital clinic in the world, and they told me the same thing Dr. Earing had told me. I felt really good in my decision to stay at Children's for my heart care. Thanks. Patty

Jordan Anderson - MASS Phenotype

Good morning! My name is Jordan Anderson, I am 25 years old, and I have a connective tissue disorder (I’m told M.A.S.S. Phenotype most likely Ehlers Danlos syndrome. It is like Marfans without a couple serious symptoms like retinal dysplasia and aortic dissection). I live in Greenfield, WI with my husband and large Newfoundland named Salty. I work at MCW doing clinical cancer research for patients with multiple myeloma and leukemia. I have attached a picture of my husband and me on our wedding day this past July! J I am very grateful to be a part of this ACHD community and I am so thankful to Dr. Earing for finally putting a name to my disease! When I was 14, my parents brought me into the doctor to get my back checked. I was referred to an orthopedic doctor who diagnosed me with severe kyphosis (normal thoracic spine curvature is approximately 25-35 degrees. My curvature was 75 degrees). Since I was still growing, my doctor decided to put me in a back brace which I wore for a horrible 2 years. Luckily, the back brace worked and my curvature has been at 45 degrees for the past 11 years. -7- It was until college that my next symptom surfaced. I was 19 when my primary care physician heard a slight murmur. She referred me to a cardiologist in the Green Bay area (where I am originally from), and he diagnosed me with mitral valve prolapse and a minor ebstein’s anomaly. I was put on observation. After that, I started having all of these other issues which were treated independently. I have attention deficit disorder, TMJ disorder, I have hypermobility in most of my joints, I have horrible circulation, palpitations, hypotension, muscle spasms (I currently get injections which are amazing at relieving pain!) and other nerve issues, skin sensitivity and other skin issues, fatigue, and the list goes on. When I moved to Milwaukee 4 years ago, I believe I saw a cardiologist and was later referred to Dr. Earing because they believed I had a congenital disorder. It was then that Dr. Earing put all the pieces together for me and diagnosed me with a connective tissue disorder. Most people feel bad for me when they find out I have this disorder, but I am glad that I do. Although it is a big pain to deal with most of the time, it has made me the strong and confident person that I am today. Most recently I have begun working out and really pushing myself physically. I was always told (and told myself) that I could not do any cardio because of my heart condition. In reality, I was holding myself back by saying I couldn’t do this. I’ve started jogging and rock climbing and love it! I do have to wear a heart monitor and blood pressure monitor, but I feel so accomplished! I’ve signed up for the color run, the dirty girl mud run, and the tough mudder this year and am so excited to get over this hurdle in life and push myself to the limits. I love to travel, hunt, fish, do archery, backpack and camp, dance, I volunteer with my dog doing therapy, shopping has always been a passion, and generally love living life to the fullest. Each day is a gift and life is too short to hold yourself back J Thanks! Jordan Anderson Clinical Research Coordinator Medical College of Wisconsin Cancer Center Clinical Trials Office

Pregnancy and ACHD

Another American Heart Month has come to a close. For the past four weeks the we’ve been bombarded with everything from commercials and news stories to diet tips and red dresses. So what have we learned - specially women? There are the usual grim statistics: Heart disease is the number one killer of women; heart disease remains the number one cause of death in the US for both men and women; heart disease, in all its forms, is responsible for over 400,000 deaths a year among women – more than all forms of cancer combined. And although new research on the importance of heart-healthy diets, exercise and quitting smoking have decreased heart disease rates among men in the past 30 years, the rate for women hasn’t budged. We’ve all heard or read about the signs and symptoms of heart disease in women and the risk factors. Yet there is one huge area of female heart health not found at the forefront of public education: pregnancy and heart disease. “Over the last ten years we’ve seen more and more women with congenital heart disease survive to grow into their reproductive years,” said Nazanin Moghbeli, MD, MPH, FACC, the director of the Women’s Cardiovascular Center at Pennsylvania Hospital. “Some women with repaired congenital heart disease can have a safe pregnancy with little risk. However, the normal physiological changes that occur during pregnancy, particularly those during the second and third trimesters, can worsen symptoms of congestive heart failure and arrhythmias and cause problems to develop - even in women exhibiting no symptoms before pregnancy. And no two patient situations are alike. A woman with heart disease should see a cardiologist for a full evaluation and risk assessment prior to conception, and a tailored course of treatment personalized to address her particular needs throughout her pregnancy.” Dr. Nazaqnin Moghbeli, director of the Women’s Cardiovascular Center at Pennsylvania Hospital According to the American Heart Association, consulting with a cardiologist specializing in adult congenital heart disease and pregnant women allows time for a physician to treat any problems that could arise during your pregnancy. There are even some types of heart disease considered so high risk that pregnancy isn't recommended, Armed with complete medical histories, modern diagnostic tests, procedures and medications, physicians can now better assess and effectively manage the treatment of women with existing heart disease prior to pregnancy. As many women are waiting longer to become pregnant, the spectrum of cardiovascular disease among pregnant women is changing as well. “There are ways to optimize outcomes for pregnant women with structural heart disease, as well as ways to minimize the risks of complications that can arise during pregnancy,” said Dr. Moghbeli who regularly teams up with Penn Medicine obstetricians to treat pregnant women with heart disease “Together we have thie outstanding opportunity to educate women as to their cardiac risk and help them both before, during and after pregnancy. Where to start? Women with a pre-existing heart condition should take special precautions under the supervised guidance of a physician before and during pregnancy as these conditions may increase a woman’s risk for complications during pregnancy. For some women their heart or vascular conditions aren’t identified until they are pregnant. Women should also know and understand the changes that occur to the heart and blood vessels during pregnancy since they add stress to a woman’s body and cause the heart to work harder. They include increased blood volume, cardiac output and heart rate and usually, decreased blood pressure. During the first trimester, blood volume increases 40 to 50 percent and remains higher throughout the pregnancy. It is normal for a woman’s average heart rate to increase during pregnancy by ten to 15 beats per minute. During the nine months of pregnancy, women can also develop preeclampsia, the onset of high blood pressure and excess protein in the urine after 20 weeks of pregnancy. Preeclampsia must be caught and treated swiftly. A leading cause of preterm births, there is no known prevention against preeclampsia. It also increases a woman’s risk of heart disease after pregnancy. Gestational diabetes and gestational hypertension - or gestational high blood pressure - also place women at a significantly increased risk of heart disease, even after delivery. Want to learn more? Click here to listen to an interview with Dr. Moghbeli discussing ways to minimize risks and optimize outcomes for pregnant women with heart disease. - Google Alert (posted under ACHD resources and links)

Living with ACHD and rare disease

Hello All, I have a bit of a more meandering story but have been seeing Dr.Earing since he first started seeing patients at CHW-HHC. The only reason I found him so quickly was that previous spring I emailed the HHC clinic administrator to see if there was anyone he recommended for my issues and he told me about this new dr coming to HHC from his fellowship at Mayo in Rochester. I have been a patient ever since and see him now every 3-6 months, typically every 6 months with repeat Echo's. To back up a bit though I was diagnosed with what was thought to be congenital aortic valve disease at age 3-4 and originally saw a Peds Cardio at UW Hospital in Madison and then in high school switched to a Peds Cardiol (when my insurance changed) at Dean Medical Center also in Madison and saw Dr.Weinhaus for the next 4 years. As I aged out of that he wasnt kidding when he said it was a diffeent world in the adult Cardiology land and began to look for someone who was a good 'fit' for my care team. I also per Dr.Weinhaus was seeing many different specialists including Peds Neurologists, Rheumatologsts,several types of Otthopedic drs., a Ortho Hand dr., Opthalmology, a Genetics team at Waisman center at UW and other drs as no one could figure out 1. why I had carpal tunnel so severely at such a young age and 2. why I had other 'peculiar' symptoms and changes such as mitral valve changes, facial coarsening, joint stiffness (present from a very early age), a previously treated herna, and a host of other unexplained issues that each of these drs suspected all tied in to a larger underlying problem. In a period of 1 1/2 yars while in high school I saw 6-10 different specialists all while each specialist would frequently test for one issue or another and frequently add new 'little' peculiarities to my chart. Right after graduating I ended up having carpal tnnel releases on each hand anyways although alot of permanent damage was done to the nerves and thenar muscle(s) in each hand. Fast fwd after graduating I moved to the Port Washington area while going to school near Sheboygan and initially saw a Adult Cardiologist at Columbia St.Mary's and an Electrophysiologist out of a sister hospital. A year-ish later I was having quite a bit more problems with alot of symptoms that where either cardic or autonomic related in addition to other unexplained issues and this is when I contacted the clinic admin at CHW-HHC. The end of august/beginning of sept 04 I first saw Dr.Earing and I believe it was the 3rd appt with him in Nov that he and I sat down and he laid out what he thought I had that explained my symptoms from the cardiac issues to issues I had as a child up till now. Needless the dx was a shock and I remember his telling me about it and saying he didnt know which type I had and was sending me to Genetics at CHW. I of course like any sane patient went home and began researcing the diagnosis. A little over a month later I saw Genetics, the blood and urine tests where done and it was confirmed I had MPS type I (mucopolysaccharidoses type I Hurler Scheie Syndrome). 3 months later I started the enzyme replacement infusions at CHW and except for occassional missed doses I have been getting this infusion every week over 4-5 hours at CHW for close to 7 yrs now. Since that time I have had atleast 2 dozen surgeries and procedures for repeat carpal tunnel, a thenar tendon transfer (repair) shunt surgeries and revisions (12 this year alone for shunt), repeat hernia, cervical spinal decompression and laminoplasty, lumbar nerve root decompression and a host of other surgeries. Cardiac wise we are trying to put of valve replacements for as long as possible as it will be both mitral and aortic valves replaced and because of my underlying disorder and the storage that would re-accumulate from the MPS in any bovine valves we will have to do mechanical valves with subsequent coumadin. Due to severe narrowed airway and difficulty with anesthesia and underlying autonomic issues + neuro-endocrine (cortsol deficiency w/chronic daily steroid) and restrictive lung disease the surgery will be hard on my body and potenitally dangerous. At this point my valves are moderate stenosed and leaking and atrium is seveely dilated so I know we face surgery in the future but on-going shunt issues have required many surgeries and frankly I have no desire to have my chest cracked open. Even having my neurosurgeon fiddling around inside my brain and fiddling with + repairing my spinal nerves doesnt make me blanche like the thought of a cracked chest. At one point 4 or 5 years ago Dr.E and I had went to a ACHA Lobby day in DC and I also have done cont'd advoccy work as a Patient rep for the Pharma co that makes my weekly infuson drug speaking at their facility in Boston several times as well as managing projects together geared to identifying the un-met needs of Adult with MPS I. I also do Pain advocacy work with the American Pain Found and through this travel to meetings, work directly with hospital pain depts, and with patients experiencing chronic pain who are looking for help in getting proper care. For more info about myself I do blog at the website below: Erica www.rarelydefined.blogspot.com