Comments on: Barack Obama, Me And My Goose Bumps

By: Betsy Worden

Betsy Worden — Fri, 19 Dec 2008 05:11:42 +0000

Adam, we just ordered your book yesterday and anticipate its arrival. We have a question for you. My husband is going to undergo aortic valve replacement on Dec 29. He has chosen to have a tissue valve. We are realizing that there are several models. How do we choose which model we want? Where is the data? He has been offered to participate in the clinical study for the St Jude’s Trifecta valve. Do you have any people who have written in with their stories on the Trifecta. It has only started to be implanted about a year ago. Can you give us any advice or impart any knowledge you might have about different valve models? Thanks so much.

By: Kathy

Kathy — Tue, 11 Nov 2008 19:06:30 +0000

Dear Adam…
Perhaps you’re our “angel unawares”! I certainly relate to the Obama blog.
As briefly as I can, my husband ,66 y/o, had a St Jude valve put in 5 years ago. According to the surgeon, there was unexpected calcification surrounding the valve. Following surgery, his kidneys failed, leading to a diagnosis of hemolytic anemia, as a result of a leak around the valve. A “repair” surgery was done 2 weeks following the original operation. Successful? Not so. There’s still a leak, and since then, he’s been getting a Procrit shot every 2 weeks…still the anemia, tho’ not so severe as after the initial surgery. For the past 9 months or so, he has become increasingly weak and easily fatigued. He has also lost about 40 lbs. in that time. The docs have run all of the tests. There appears to be nothing wrong other than the leaking valve, which may be enlarging, and slight (?) ventricle enlargement. The options seem to be re-operating or not, we know not which is the greater. risk.
Anyone out there have any kind of similar problems? We feel very alone!
Thanks,
Kathy

By: Rosemary Geraci

Rosemary Geraci — Tue, 11 Nov 2008 01:03:07 +0000

Adam, Please stick to heart info in the future. I’m not interested in anything political you may have to say. I can get more political stuff everywhere else I look.

By: Laura Becker

Laura Becker — Sun, 09 Nov 2008 22:12:37 +0000

Adam,

I have several questions for you. 1. Did you have a heart cath. before your surgery? Do not remember reading of it in your book. 2. I live in the Inland Empire area of CA – what surgeons in that area have a lot of experience in replacing mitrals valves? I’m am being told that I should have a mechanical valve since I am 51, but have had trouble getting my blood to thin on Coumadin, presently in my 3rd trial on it. 3. I had a closed commissurotomy when I was 39, following my diagnosis of mitral stenosis, that was a great option for me, but now I am looking at needing a valve replacement. Would love to have some feedback from you and others with similar experiences, even though I am a registered nurse, I have a lot of apprehension which is another whole story. Laura

By: Vickie Pinney

Vickie Pinney — Sun, 09 Nov 2008 21:56:27 +0000

Hi Meigs! Pleae get a 2nd opinion! I think that is so important for all of us! My doctor wanted me to wait to see if we could build up the heart muscle. In Jan. a stress and echo will re evaluate. I am going to Houston to get the 2nd opinion. I too want a tissue valve if I have replacement but at this point no one has said whether it can be repaired or not. I am not waiting past Jan. I can’t go on like this. Like I said before, to me it’s quality not quantity. Being tired, walking up the hill, I totally know what you mean! Like Cindy says, YOU ARE NOT ALONE! Write me anytime and we can talk more. freebyrd4@yahoo.com By the way… I don’t know what I would of done without Adam’s book!

By: Laura Becker

Laura Becker — Sun, 09 Nov 2008 21:52:38 +0000

Adam,

I have read your book and have several questions for you. 1. Did you have to have a heart
cath. before your surgery, I don’t remember reading about that?

I am a 51 year old female who has mitral stenosis. I was diagnosised when I was 38 and
at the age of 39 had a closed comissurotomy done by Dr. Francis Lau at White Memorial
in LA. This has been a wonderful gift of not having to have a open procedure at my
earlier age. But now things are changing and I am going to have to have a valve replacement.

I am being told different things by different doctors, so as a RN I am doing my own research and trying to make the right decision for me. My case is complicated by
the fact that I have had difficulty getting Coumadin to thin my blood. It is felt because
of my age a mechanical valve would be better for me, maybe not have to repeat
surgery in my lifetime. But if I am under stress that my blood is not thinning and I
have a mechanical valve that would not be good.

So several additional questions. 1. Is there any tissue valves that will last longer than
8-12 years? 2. I need to get another opinion from a surgeon, any suggestions on
surgeons that do a lot of mitral values? 3. Any feed back on difficulty with Coumadin
and how to relate to that?

I really appreciated reading your book, have told my son who is 25 and has aortic stenosis
that he should read it. I know from my experience and nursing knowledge that we
patients need to be educated on our disease and have knowledge to choose the right
care for us. There was a book written in 1997 by Gregory White Smith and Steve Naifeh,
“Making Miracles Happen” that was most inspiring, about being an advocate for yourself
in medical care. If you haven’t read it you should. Thanks for this blog and having
opportunity to communicate with others in similar situations. Laura

By: Meigs Matheson

Meigs Matheson — Sun, 09 Nov 2008 03:25:45 +0000

I am 61 year old woman with moderate to severe mitral regurgitation cuz of severe prolapse of the anterior leaflet. I too am” waiting” for the time to be right to attempt a repair There has not been changes in the echo – up tp 6 months ago, now I am tired , and have a hard time walking up hill. Will get results from last echo soon. I hear that earlier surgery is better- before the ventricle is affected- better long term quaity of life and length. I keep going over scenarios in my mind : If I can’t get a repair, and have to have replacement- I’d want to go for it soon, so I can use a tissue valve. If that needs repalcement, I might be young enough for that now rather than later, and avoid a mechanical valve. Cindy and Vivkie – I dont want to pry- but if you post here – lots of us could learn from you, like we all have from our pioneeer extrodinaire- Adam P. Vickie- did “they ” say why you are waiting with such bad symptoms?
Thanks, Meigs

By: Cindy Tarver

Cindy Tarver — Sat, 08 Nov 2008 15:43:46 +0000

Hi Vickie,
I will be 56 very soon & have severe MVP w/ 100% regurgitation. Please contact me privately … I may be able to guide you … rocky111@aol.com

By: Vickie Pinney

Vickie Pinney — Sat, 08 Nov 2008 14:47:41 +0000

Hi Adam! I have your book and it is a world of knowledge for me. I am looking for a support group in Austin, Texas but haven’t found one yet. I am a white female, 57 years old and have 3+ regurgitation of mitral valve. I am in cardio rehab to try to buy some time, I guess. My symptoms are pretty bad. I don’t want to wait until I am old to have it replaced. I believe in quality not quantity. I need to talk with other people that are in the same boat I am. Thanks for shooting straight in your book!

By: Laura

Laura — Fri, 07 Nov 2008 01:50:50 +0000

I felt it, too, Adam. Expecting great things from that man.
Laura