BAV/Pulm Hypertension/ascending aortic aneurysm

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nanny grammy
New Member


Date Joined Nov 2010
Total Posts : 1
   Posted 11/5/2010 6:38 AM (GMT -7)   
Good Morning everyone-this is a first for me to post on a site such as this. I am a 54(and 11 month) old female, RN with fibromyalgia, hashimoto's thyroiditis, rosacea, IBS (all autoimmune disorders), hyperlipedemia(genetic) and normal BP. I had an echo last week which was abnormal and led to an MRA a few days later. Diagnosis:5.2 cm ascending aortic aneurysm, bicuspid aortic valve (news to me), minimal regurgitation and slight stenosis.I also apparently have pulmonary hypertension. All in all, a terrifying list of dx's.
I see my surgeon on Thursday and will push for surgery asap since I don't want this ticking time bomb in me and then, maybe my pulmonary hypertension will improve. If not, I need to deal with that next.
I don't have a connective tissue disorder to my knowledge and have had testing throughout the years. I am SOB with exertion/stairs and have a morning cough , which I have had for years and my previous pcp told me I had asthma and gave me inhalers.
Oh well, any advice would be appreciated- I am in Ct. and want to stay near home for my support system . What should I expect post op after my aneurysm repair? Can I go upstairs when I return home? What kind of cardiac rehab is there to do?
Thanks in advance!
Beth

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 11/5/2010 7:39 AM (GMT -7)   
Good Morning Beth and welcome to HealingWell,
 
I am sorry to read of your dx and there are many here who have had surgery so I hope a member will be by shortly to share their experience.
 
There are two types of BAVD (Bicuspid Aortic Valve Disease)  that can cause stress to a person's heart. Bicuspid aortic valve insufficiency occurs when the aortic valves do not close as tightly as they should. The weak, or insufficient valves allow blood back into the heart, a condition called regurgitation or leakage. Regurgitation, due to a weakened bicuspid valve, puts additional strain on the heart because the muscle must work harder to re-pump the blood out to the body.
 
Bicuspid aortic valve stenosis is the narrowing of the deformed valve. Deposits of calcium may make the valves smaller than normal, and unable to open as fully as a normally formed aortic valve. Additional stress is placed on the heart's left ventricle as it works overtime to pass blood through the narrowed valves.  People with early bicuspid aortic valve stenosis may feel the strain during physical exertion, but not during periods of rest.
 
May I kindly suggest you write down a list of question you have re your dx and the surgical procedure.  As a nurse we sometimes know to much which can send us into the "what if?"  thinking so remember to advocate well for yourself and know that knowledge is a good thing.
 
Again, a warm welcome to HealingWell.  I hope you stick with us.
 
Kindly,
 
Kitt


~~Kitt~~
Moderator: Anxiety/Panic, Osteoarthritis, GERD/Heartburn and Heart/Cardiovascular Disease.
www.healingwell.com

"If you can't change the world, change your world"

gpo
New Member


Date Joined Mar 2009
Total Posts : 3
   Posted 11/23/2010 3:20 PM (GMT -7)   
Hi out there, especially Miss Helen whose posts I read 2 years ago when I first found this forum.  Beth, I am a retired ICU nurse, so I know how it feels to know, understand, and research until you drive yourself crazy!
My ascending and aortic arch anuerysm has been monitored by Dr. G. Michael Deeb at the University of Michigan Cardiovascular Center for the last 2 years, and this summer he recommended surgery in view of the gradually expanding size as well as strong family history.  My mother died suddenly at age 59 from a previously undiagnosed aneurysm of the exact same location as mine, and my younger brother has one in the same location, also.  I have been participating in a genetic study at the University of Texas directed by Dr. Dianne Milewicz since that time; she is now director of the John Ritter Foundation for Aortic Health as well.  I would encourage everyone with a known thoracic aneurysm, and especially a family history, to participate.  I requires only health information over the phone, and a saliva sample sent by mail   Dianna.M.Milewicz@uth.tmc.edu
 
At age 65, I had an 8 hour surgery on November 18th, and came home yesterday on day #4 after a graft placed in my ascending aorta into the arch, and another graft in the base of the inominate artery (the first vessel that leads off the arch to the brain)as well as a valvuloplasty.
On my first day home I was out walking in the neighborhood for almost 30 minutes, went to the grocery store with my husband, and helped with 3 loads of wash.  It is entirely too amazing!  Fortunately, when I knew that I might someday need this surgery, I got my weight down to my ideal weight, began exercising 6-7 days a week within my Dr.'s restrictions (including spin cycling, lower level weight training, pilates, and yoga).  I was 80 pounds over weight when I was first diagnosed, so you can imagine that it wasn't an easy journey to be ready.  It definitely made a huge difference in how well the surgery went, and how the recovery is going.
I know that the idea of open heart surgery is daunting, and that one doesn't always have much time to prepare, but do the best you can; find a center near you that has the best outcomes, and does the most aortic procedures possible.  I went 2.5 hours away, and the trips have been well worth it to have absolute conficence in my surgical team.  Good luck
 

iloveemangos
New Member


Date Joined Nov 2010
Total Posts : 10
   Posted 11/23/2010 11:57 PM (GMT -7)   
heey , im maddi . i have bicuspid aortic valve disease as well and i get chest pains quite frequently . do the chest pains relate to the bicuspid ?
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