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“All Fontans Fail”

Jul 25

Posted by: ACHA
7/25/2013 11:42 AM  RssIcon

By Jennifer Gooden

Late last year I shared with the ACHA community that I had gotten my dream job! I am working in the cardiac intensive care unit at a major medical center. This hospital also happens to be where I had all four of my surgeries (many years ago) and it is still the hospital I go to for my cardiac care now.

This job has challenged me in so many ways that I never thought possible. I get to work with some of the most astute medical minds in the world. They are a truly amazing group of people that have such a wealth of knowledge that I am dying to learn. Whenever I find time to pick the brain of a more senior nurse, I do! I ask about all kinds of cardiac conditions and blood flow patterns and medication dosages.

One night I remarked to a nurse who has been in the ICU for over 20 years, "Why do some Fontans fail?" We had just seen three patients who underwent the Fontan procedure and now have failing Fontans. She said to me, "Jen, ALL Fontans fail. It is a palliative surgery. It is just a matter of when.”

And that nugget of knowledge really shook me. I am a Fontan—meaning the last procedure that I had was a Fontan and anatomically speaking, my heart most closely resembles Fontan physiology.

It made me think that the most important thing is research. The medical community is learning from us and gathering information for us, to better our outcomes, lifestyles and futures. So I ask us to be open-minded and give our time, blood and whatever else to help doctors, nurses and other medical professionals learn.

Jennifer Gooden is an emergency department nurse who was born with transposition of the great arteries, as well as other congenital heart defects. She and her husband Ziggy are working on transitioning to a more healthy lifestyle. Read more about their adventures in and out of the kitchen at their blog.

Copyright ©2013 ACHA

Location: Blogs Parent Separator ACHA Blog

12 comment(s) so far...


Re: “All Fontans Fail”

It would seem like the main thing needed on that unit is education. My son is post op Fontan from 18yrs ago. I have been a CVICU nurse for 15yrs and now in grad school to be an ACNP. There would never be any reason to tell a patient or another professional that a procedure being done "ALL" fail. For that senior nurse to give that kind of information to a new nurse- much less a Fontan survivor- is sad. I hope there was not another potential Fontan, or any cardiac, patient around to hear her. It's not just palliative it's considered reconstructive. The shunt's leading up to the Fontan are palliative until final phase can be done. The staff needs to be educated on research and overall survival rates- in other institutions worldwide. I'm so happy that you seem to love what you are doing and are healthy. Passing the word for more research is always beneficial. For that nurse to just say 'a matter of when' they fail... that can be said about her or anyone else's heart. I can 100% say she will die-- it's just a matter of when. Fontan's are not just waiting to die, they are living with a new heart.

By Monica Sanford, RN on   7/25/2013 3:52 PM

Re: “All Fontans Fail”

I so agree with Monica. As a physician, heart patient myself, and daughter post fontan, it struck a nerve with me that that nurses would be using the terms " all fontans fail" and "just a matter of time".

By Chastity McCleary on   7/25/2013 4:06 PM

Re: “All Fontans Fail”

My daughter had her first Fontan when she was 11. She had a revision when she was 41!!! Please don't tell me "all Fontans fail"....I have a 44 year old daughter that would not be alive without the Fontan. In some cases it's the only alternative. I don't like this article. Yes there are consequences with the Fontan and doctors need to tell patients and parents that, but sometimes there is no choice. CHD families need hope not more fear. I do agree more research is necessary....but some of us cannot wait.

By Margo Magee Swim on   7/26/2013 7:58 AM

Re: “All Fontans Fail”

I'm almost 26 and 23yrs Post Fontan. To say "all Fontans Fail" is not exactly the phrase to use. I've done 3yrs of Fontan research & been all over the US to top Fontan specialists. Yes ALL Fontans will have issues at some point..what kind of issues and when is unknown. All Fontaners have liver damage to some extent (luckly mine just mild). The Fontan is pallaitive meaning no fix..we live on half a functioning heart which puts stress on the body & heart we do have. My parents knew it was no fix and it would be a lifelong journey of ups & downs but they took one day at a time, cherished everything, and gave me as much "normal" as I could. Just because this is a lifelong battle/illness does not mean we can not live full lives. I graduated college and I'm happily married. But the point that should be made is we are not fixed, we will face some issues..some face way more then others. I know tons of Fontan adults & children...we all are different but eventually face sonething. I'm glad my parents told me I was not fixed and all the important things I needed to know..however they never said I could not live a full happy productive life. Everyone has challenges..mine is my heart. I've lived a full life filled with many blessings. But I do have limitations & mild issues...I don't live in denial. I see top doctors in the Fontan to be proactive to I can continue to live a full life for as long as possible. Hopefully till 80 ;) but who knows. And just because it's lifelong & we will face issues does NOT mean we are waiting to die!! We LIVE to the fullest with what we have been given always.

By Lauren B. on   7/26/2013 7:59 AM

Re: “All Fontans Fail”

Well I certainly hope that isn't true! I am post Fontan of 23 years.
Was born with tricuspid atresia/single ventricle and
a hole in my aorta. I had the Fontan performed at
Boston Children's Hospital and was told I could
look forward to a normal life expectancy. I am
44 years old now and am quite cardiac healthy!!!
What a horrible thing for a nurse to say!!!!

By Kathy on   7/26/2013 7:59 AM

Re: “All Fontans Fail”

I had my first Fontan in 1984 at 12 years old. I began having arrithymia (sp?) problems in 2004 due to my failing Fontan. In 2005 I had a Fontan revision. I only hope that the revision will last as long, if not longer than my first Fontan. For the years in between my surgeries I never really felt I would have to have to go thru a surgery again. It was a reality check to find out in 2005 that it was my best option. Now I live knowing that eventually something could "fail" again. But I still live my life to the fullest. I hope & pray that with the technology & medical advances in the world today there would only have to be one more fix should I need it. If not for me, then at least for the children today.

By Lisa on   7/26/2013 7:59 AM

Re: “All Fontans Fail”

Thanks ladies-I am a mom of an HLHS 22 yr old with a Fontan that is almost 20 yrs out. I find this article upsetting to say the least. I know that there are some problems in patients and that the liver is to be watched closely. Praying that NONE fail at all! Lord bless us all!

By Syresa on   7/26/2013 7:59 AM

Re: “All Fontans Fail”

I don't know if all Fontans fail but my daughter's is failing. She has had had PLE on and off for 13 years and now the ascites has made her abdomen huge. She is 20 and it's just a matter of time. Transplant may be an option but really not too hopeful. I believe for her the Fontan was destined to fail from day 1. I guess some hearts do better than others with the Fontan.

By Joanne on   7/26/2013 8:00 AM

Re: “All Fontans Fail”

" Fail " is not the right word....MOST Fontans need to be revised. I was born ( 53 years ago ) with a single ventricle, transposition of the great vessels, and an enlarged pulmonary artery. I had a Fontan when I was 27 and it was my third open heart. Just this past summer I learned that the blood flow from my heart to my lungs is starting to diminish and my sats have gone down so my cardiologist and I are talking about Fontan revision. The one where they insert the gortex tubing into the heart. I fell blessed with my life and what medical technology can do. I never say *fail*. :)

By Michelle on   7/26/2013 10:22 AM

Re: “All Fontans Fail”

I was born with a hypo-plastic right ventricle and have pulmonary stenosis, transposition of the great vessels and had a first generation fontan bypass. I had PLE, stage 4 weeping edema and couldn't walk up a set of stairs. I went to the to Philadelphia Children Hospital, Strong Memorial, Shands and was on the transplant list. I have a regimen that has turned my life around and took me off the transplant list. Message me and I can help you..

By Casey Towne on   8/8/2013 8:49 AM

Re: “All Fontans Fail”

Oh my, I read the first blog on "All Fontans Fail" but neglected to scroll down and read the comments. Thank goodness I went back and reread it. My daughter, Emily, has Tricuspid Atresia and had the Blalock Tussig shunt at 9 months and the Fontan at 3yrs old. She is now 26 yrs old and for the fist time is having rhythm issues, SVT. We know she was not "cured" but the temporary procedure was a blessing for us. When and if she has hers revised, I just hope and pray we are blessed with another 26+ years! (and that we never meet that senior nurse!!!) I too want to say "thank you ladies" for the positive blogs. Being the mother of a congenital heart child and a new member here, i appreciate all info.

By Christine Fisher on   8/14/2013 7:20 AM

Re: “All Fontans Fail”

My daughter was born in 1978 with a common ventricle and had the Fontan procedure done at the Mayo in 1983. She has had no problems whatsoever until the past few months. Now the blood flow to her lungs has diminished and just a few weeks ago had to be hospitalized to have fluid removed mostly from her abdomen. She lost 60 pounds of fluid. Now she has a Fontan revision scheduled for March 10. She has never been in and out of the hospital or had infections or any problems with her Fontan. We hope and pray all goes well.

By Helen E Phillips on   1/31/2015 11:47 PM

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