Helping Others

Dear Brian Tinsley,
You are doing a wonderful job in upgrading your site
aorticdissection.com for the benefitiaries all around the world. I am also
one of them and may be the only one from India. Though it would appear
a drop in the ocean, I would like to contribute to your Herculian efforts.
I was wondering how can I send you my contribution and a friend of mine
Dr. C.D. Patel from Boston, US, visited me and now I am sending it through
him. He will be back in US by 15th Feb.10 and will then contact you.
I am sending a small contribution of 100 U.S.$.through him. Kindly accept it.

Best wishes and warm regards,
Yours,
Dr. Vilas Bidaye
Baroda, India 390 001

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The website is great. Thanks for being the pioneer on this. I wouldn’t have known where to start.
Peter

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Dear Mr.Tinsley,
I just wanted to take a moment and compliment you on the effort you have exerted to inform and educate people about aortic dissection with your website. In San Diego, we see a fair number of dissections as well and it is a very simple diagnosis if one knows what to look for. I am glad that you are a survivor, although I couldn’t tell whether you had a Debakey III or a I/II. In any event, just wanted to compliment you on your work.

Niren Angle, MD, RVT, FACS
Associate Professor of Surgery
Chief, UC San Diego Vascular & Endovascular Surgery

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Thank you for your updates.  It’s lonely here too.  Though I had my aneurysm repaired, I am still having some problems that need be resolved.  I feel so much for the personal stories as it’s such a lonely walk, but need not be.  I would give anything to be in a room full of these folks.  Keep it up and know what you are doing is so special.  God Bless, Chantal Cermak

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Brian,
Found your site…loved it …God Bless You!
I just posted my story hope you have a chance to read it soon.Brian,
Thanks….It was therapeutic for me to actually put my experience down in words …I appreciated the opportunity..Keep up the good work….I know that Dr. Liang works closely with Dr. Mallidi and his staff (Mallidi was my lead surgeon)…Give them both regards if you see them.

Thanks
Best Regards,
Greg Nobriga

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Hi Brian. I am an Aortic Dissection survivor, Dec. 19 2006. Mine
dissected from behind my heart to the common iliac arteries in my legs.
I think the job you do with your site is wonderful, and would like to
offer you my story for your personal stories page. Please let me know if
you would like my story, and what format it needs to be in if you can
use it.

We are all survivors, and we all need to share hope and happiness (and
sadness too) in order to grow and live, not merely survive.

Thank you so much; your site has helped me tremendously.

Alex Netherton

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Dear Dr. Stewart:

Thank you so much for taking the time to review the CT Scan and give us your input. This is wonderful work you are doing, helping others this way.
God Bless.
Sincerely,
Patricia & Michael Dacus

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Dear Mr. Tinsley,

Thanks for the kind words. And thanks for posting the link.
It sounds like your own experience was pretty scary but not unusual. Keep up the good work.
Best wishes,

Lisa Sanders MD

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Brian,

Happy holidays! God bless you. I pray that you will have many many more. David Liang has been in contact with me about my mother’s case. It’s been a double blessing!

I can’t tell you the impact that your site has made for my family during our mother’s illness. We were able to get invaluable information about aortic dissection; the testimonies including yours – taught us what to expect, and more – I was able to understand the feelings that mother couldn’t convey to us.

God empowers us to help ourselves and one another. Brian, your website has empowered and comforted our family. I’m able to eat and sleep now.

May God continue to bless you,
Peace & Blessings,
Nina

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Thank you very much for the information you present.

I am researching because of my father’s health problem.

The doctor’s suggestion was first, Tylenol, second Vicodin. Now a CT has shown an enlarged aorta. Your site mentions polycystic kidney disease. The CT showed multiple cysts in his kidneys.

Your site quickly answered my questions.

Many thanks,
Debbie in CA

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Hi Brian

I feel a special bond between us because you pointed me to Dr. Liang. I flew out to California, and had my surgery on August 23rd. All went well. I had no problems, but it will take me a bit to recover completely. I don’t handle surgery well. It saps my strength, and others may say it was a walk in the park.

The whole experience was a wonder. Everything was prepared as though it had been planned for months. No waiting in line. Sunny walked me through the whole thing. I could not get over how smoothly things went. I feel privileged to be a patient there. I wish everyone would have the chance to go there. Think how many lives would be save.

I just want to thank you for your intervention. I’m sure I would not have had the good experience, and chance to live a normal life. You are making a difference—please keep up the good work

Thank you from the bottom of my heart
Pat Bussinger

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Thank you so much for this web site.
A friend of mine, aged 43, had a dissection on July 10. He MIRACULOUSLY survived & is recovering. Hopefully he will tell the story on your site one of these days. The information there is unbelievably enlightening. Notice that there are about a dozen personal stories posted since July 10….
Alean

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Brian,

Thank you for the article and all you are doing to keep us informed. I started on Lexapro about two weeks ago and don’t feel much difference yet. I’m going to give it some time. I know you said it helped you feel more upbeat and optimistic. I started a job ten days ago with a friend from the past and I get frustrated at the things I can’t do. My right leg is still quite numb and I am not that mobile on stairs or when picking up items. I’m hoping things get better as time goes by.

Again I feel you are a friend and I hope things are going better for you in your recovery. Thanks for keeping me and everyone else informed.

Regards,
Chris O’Brien

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That poor guy has been through it, I am so glad I have followed my situation through the years and was aware of the problems I could have, life should never be taken lightly, we should thank god every day we wake up alive and well, you have been very uplifting for me, keep up the great work, it very nice to have someone like you out there looking out for people.

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Brian,
Thanks for the website and your prompt reply. It is great that your one year anniversary on 8/24 is coming up. I too am tired all the time but it sure beats the alternative. I’ve kept my weight about the same and my blood pressure is at an optimal best when it is below 120/80. It was 130/80 at my cardiologist visit last Thursday. You’re a godsend to me and many, many others with all you have done with your website. Thank you for taking the time and giving much more than you take!
Regards
Chris

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Thanks Brian for your emails re Aortic dissections! I read them all and just wanted to say “Thank you” again!
Regards,
John Goldsmith

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Brian,
Thanks for the update on your condition. I’m glad to
hear you’re doing okay.
And thanks for setting up this website. I have found
it extremely helpful.
All the best to you.
Irene

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Thank you very much for the information you present.

I am researching because of my father’s health problem.

The doctor’s suggestion was first, Tylenol, second Vicodin. Now a CT has shown an enlarged aorta. Your site mentions polycystic kidney disease. The CT showed multiple cysts in his kidneys.

Your site quickly answered my questions.

Many thanks,
Debbie in CA

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Dear Brian,
It’s been a long time since I last contacted you, and so much has happened. Anyways, I’ve been meaning to contact you for a while now, but this is the first time in a couple of months I’ve been able to get around to getting back in touch with you.
Well, thanks very much to you and your website (btw, I see that you’ve added so much to your website since I first stumbled across it – that’s awesome!), David Liang, Sunny, Julie and Dr. Miller have been taking good care of me. Due to my HMO problem, David saw me gratis for the first visit in May and did an echocardiogram on me. He and Sunny saw me after hours in their clinic and stayed with me for almost 3 hours after, analyzing me, informing me and answering all my questions. What a dedicated doctor and staff! The echo unfortunately confirmed that my ascending aorta (at the root) was around 6.3 cm. My hopes for a false reading from my previous tests at a different cardiology office was deflated. David and Sunny was so nice and caring that they helped me a lot to alleviate my fears.
My next step was to get my HMO to approve me to have the repair surgery done by Craig Miller. And boy, this was such a nightmarish experience that I don’t ever wasn’t to go thru again. After being jerked around and denied a couple of times by the HMO, and many frustrating phone calls and visits with my network physicians and cardiothoracic surgeon, I finally got the HMO to approve me to get the surgery done by Dr. Miller. The basis for my requirement to get the surgery done at Stanford was because Dr. Miller is one of the most experienced surgeons in the world that can save the heart valves. By the way, Dr. Miller is just as nice and personable and down to earth as David and his staff are.
Well, I had my surgery on July 20, and am now recovering well at home. The surgery was 9 hours but Dr. Miller was able to save my valves and he said they look good and should last me a long time. I stayed in the hospital until July 25. I must say that the first month of recovery was not a pleasant thing to go through. My chest hurt every time I cough, turn, get up, laid down, etc. The worst was probably my throat (or was it my tongue – I couldn’t really tell) hurt badly from the tube the breathing tube. This pain lasted almost 4 weeks after the surgery! But once that healed, I was able to eat better, and in turn, I had more energy to walk more and more. I am up to walking between 2.5 to 3 miles a day, and actually today walked over 7 miles straight!
I went to see Dr. Miller yesterday for my follow up visit and he said I looked and my heart sounded good. He gave me the go ahead to return to work anytime I wanted to. I am probably going to start work again the first week of October. My chest still has a little discomfort, both from the incision (lower part) and the sternum not yet fully healed, but other than that I feel great. The biggest thing is the relief that I have from not having to worry about a dissection anymore and the anxiety that I had before the operation. Dr. Miller is very sure that I do not have Marfan’s and David ruled out Ehler’s Danhlos the first time he saw me. The weird thing is that my oldest brother who is five years older than me, has an aortic root aneurysm also. His aneurysm is asymmetrical in shape and is surgical at this point, measuring 6.2 at the largest points. He too is now seeing David and will have the surgery done by Dr. Miller on Sept. 30. Dr. Miller thinks we have a connective tissue mutated gene, that was probably inherited from our father. We can’t be sure what his aorta looked like since he passed away from cancer at the age of 37. At this point, the rest of both my and my brother’s aorta looks normal, but of course, we’ll have an echo done every year.
Brian, I just wanted to thank you so much for if not saving my life, then at least giving me a chance to have a better quality of life with the valve saving surgical repair- by referring me to David and the folks at Stanford. I truly believe that I stumbled upon your website not just by happen chance, but rather by divine intervention. God has blessed me in so many ways, and I’m looking forward to not waste any part of the rest of my life away. You are doing great work with your website so please keep it up. You’re welcome to use any part of my story to add to your site, as a fellow aortic dissection/aneurysm survivor, I too would like to help others if I can.
God Bless,
Ricky Flanders

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Hi Brian,

I just wanted to say thanks for the referral and all the information you have provided. My mother Kimi Kaiser has passed on from her dissection. The people at Stanford were very helpful but honest in saying that her chances of making it through surgery or recovery was slim at her age of 76. She also had other issues. She was not in any pain when it happened in her sleep. I just cherished the time that I had with her. As I wept she would say “Be tough. Don’t worry. I will be ok” As a mother she was more worried about me than herself. Her death is extremely hard for me as I am an only child. I have a very supportive wife and 2 kids. Even though she holds my hand through this, it seems like it is from the other side of the fence.
The only positive thing I got out of this is it brought me closer to her for the last 6 monthes of her life.

Thanks again,

Jeff

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Thank you Brian. You have made living with this dissected aorta less of a scary
mystery. It’s still scary but at least I understand it now and that makes it easier.
Thanks for all you do. Thomasina McCain

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What a wonderful job you have done gathering all this info on Marfans. My daughter, age 31, and I, age 58, both have Marfans. We have been extraordinarily blessed by having expert medical treatment by Dr. Reed Pyeritz at Hopkins and now U. Pa. over the last 21 years. Caroline had open heart at age 15 because of an enlarged aortic root and I suffered a type b aortic dissection 3 years ago. Otherwise, we are both quite fine – and very lucky. Thanks for putting this all together and I wish you well. Jane Prugh

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Brian,
Thanks so much for forwarding my email. You really do a great service for people dealing with this type of medical situation.
I wish you the best.
Peggy Zimmer

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Brian: I must say THANK YOU. Your site has helped me get thru a rough year.Also Dr. Liang. The best for all in the New Year. Paul Oberle SR

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Dear Brian,
Thank you for all you do and may you and your family have a wonderful 2005!
This New Year’s Eve was my one year anniversary for my surprise open heart surgery(dissection of ascending aorta) at NYU. I assure you it was an uneventful evening; dinner and watching the ball drop. Everyone was calling and wishing me a great evening. I am blessed with health, family and the best friends!
Thanks again, Doreen

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God Bless You Brian

and Hope year 2005 is great for everyone including for the people that have families in the area affected with the tsunami

evelyne

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Thanks for your good wishes, and my deepest thanks for all that you have done for all of us. God bless. Jane Prugh

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Dear Brian,

Be God bless you, your daughter and your family, a healthy life in 2005, and all the years ahead.

Happy happy New Year

Kindest Regards
choi

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Brian
Thank you and happy new year to you and your family. May your year be filled with health wealth and happiness.
I have newly joined up and am impressed with what I have read on screen.
Ella

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Thank you so much for sending this to me……God has truly blessed me because
after reading survival statistics, I am still around and kicking! You have done
so much to help me understand what this aortic dissection is all about. I am doubly blessed for you being so kind and generous. Thank You!!! Sincerely, Thomasina McCain

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Brian,
Again thank you for putting me in touch with David Liang. Our email conversations have been most helpful. I feel better now that I have more information even though he said this type of dissection is 1%-5% of all dissections. OH MY GOSH! If I had only gotten those odds in the Lotto instead of this. LOL
Also please thank Rob Rogers for his info. It was also helpful. If you pray, please say a pray for my doctors and for me and my family on Friday at 9:30am & 11:00am as either of those times is when the angiogram is to begin. I am apprehensive, but the walking time bomb thing is driving me crazy.

Again thank you and I will keep my story updated as I know.

Cathy L. Mordecai
cmordecai@airmail.net

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Thank you so much for your reply and referral. I will be forever grateful.
Have a great day, Monica
Hello David, (Dr. Liang of Stanford University)

Thank you so much for reviewing my CT Scan and conveying your comments to me. I now have a more complete description of the location and extent of the dissection. While I know that risk of a rupture exists,  I feel more confident that attention to medication and life style can make a difference to my condition. Through contact with the Stanford Medical Center I feel proximity to an important resource that lessens my isolation as a “why me” person. You have been an immense help through your expertise, congeniality and capacity to provide medical information in a manner that facilitates understanding.

Brian Tinsley and Sunny Pellone provided me with the linkages to the Center and to you. I am indeed grateful for their support and involvement.

Sincerely,
Tom Yauk
Winnipeg, Canada

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Brian,
One of the best web sites I have been on, and I have been on all day looking up information for nursing. Great links also. You did a really good job. Keep it up please.
just as nurse.

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Brian -

It did me a world of good to speak with someone who could relate to what I’m dealing with right now.  Thank you for taking the time to listen and for forwarding my message to Dr. Liang. On behalf of the people who have been helped by you and your website (aorticdissection.com) -  as I was today - your compassion and willingness to be helpful is appreciated much more than you have any idea.

May God continue to bless you for the good things you are doing in His name for His glory.
Sherry

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Hi, Brian!
Just wanted to drop a note to thank you for referring us to David. He’s an angel… our savior. He spent over a half hour with us on the phone, patiently answering all our questions and giving us advice. He says my husband’s dissection of the SMA is very very rare… less than 30 documented cases! I can’t recall the exact number he quoted.
Thank you. David has been a Godsend.

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Brian,

Your website is excellent and has been a great help to understanding more about the aortic dissection. My question concerns exercising after the dissection operation and general physical activity.

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Hi Brian,
Thanks for the web site. It is great tool.

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Hi Brian
Great site – thanks! My friend Tony had an aortic dissection while we
were talking on the phone last night (we didn’t know what it was at the
time).
We got him into hospital within 90 mins, and he’s in good hands – but
the medicos aren’t good at explaining what’s happening, what his
prognosis is, or even what an AD is.
I’ve been reading up tonight before I go down to London tomorrow to see
him. Thanks to your site and some others, I am now much better informed
and very happy to read that recovery from surgery is as high as 95%. So
not anything like as gloomy as Tony thinks.
If only the medical profession were as helpful and KIND as you in
helping explain and support such a dramatic and scary event.
Good luck to you – a long & happy life.
cheers
Arabella