Category: Ascending

Regina Kurn-48

Personal Stories: Regina Kurn

Hi! It’s getting late, but I am so excited to have found this site tonight. I had sort of given up tying to find anyone who had experienced some of the same things as myself with an ascending Aortic Dissection I am now a 48yr old woman. My heart literally “blew up” as I refer to it on March 15, 2003. I am now 1 year and two months out from that day, but some of this never seems to have an end. I was a smoker with high blood pressure that had been treated for a couple of years, but otherwise in great shape and feeling good. I had just changed occupations which was huge, had bunion surgery on my left foot exactly one month prior. I live in a fairly rural area as far as health care is concerned.

As a matter of fact I do not have a general practitioner as there is a shortage in this area of Colorado where I live. Anyway, I had not been feeling well for about two days, just sort of flush. Set out in the morning with a friend to drive an hour away in New Mexico for a day of shopping. I had a strange sensation upon waking that made me think of “Hypertension” but I went anyway. We shopped for about two hours then stopped for lunch before heading home. After a couple of minutes I grabbed my chest. It felt as though someone very strong was pounding my chest continually with a brick wall. We we’re right across the street from a small “Urgent Care” facility. I actually walked to the car but knew I was in some big trouble. Shortly after entering I told someone I had to lie down. From this moment things moved at a frantic pace from what I can remember.

I remember when asked to rate my pain on a scale of 1 to 10, yelling, 10!, 10!,10!,10! I am not a chicken as I had previously in my life had surgery on my nose, given birth twice one was a C-Section in which the anesthesia did not kick in. Spent a month in the hospital after being air vaced for a month long stay in Denver so as not to have the second child too soon. Any way, point being I thought I knew pain. I did not!! This was unbearable. I was too much for this facility, so they called for an ambulance to take me to a bigger hospital a few minutes away. Thankfully even in this small town I had a great physician who knew what was going on.


I remember nothing else for days, I am not quite sure how many to be exact. I was air vaced from Farmington, NM. to the Heart Hospital in Albuqure,NM. My Dr, Paul Levy saved my life. My Aorta had dissected all the way from the Ascending through, as far as it can go. The repair was only done on the upper part. I still have the dissection in the lower section. My stay in the hospital was three weeks because of many complications. It took some time to figure out I was allergic to Heparin, and had some clotting issues.

Thankfully I do remember hearing the voices of my two teen age sons and a brother, or I’m sure I would not have had the will to fight. Oh, the depression! It is very hard to get your act together when you can do nothing for yourself. Luckily upon returning home my very large support staff of endless good friends, neighbors and community we’re very instrumental to my recovery. I am a single mother with two wonderful boy’s who have had to grow up very fast in the last year, a supportive x-husband along with his wife all of whom I could not have gotten this far with out! I was so weak. About two months after my surgery, I had a blood transfusion.

I was a couple of quarts low and felt much better after this and slowly started the healing process. One of the most healing things was massage. After having your chest ripped open, poked and prodded, told that you might loose your feet etc. etc. It’s good to have a good cry. My masseuse and now friend took me from a fetal position to being able to return to work. I found this to be a very important part of my recovery.

I was out of work for four months. It is very hard to adjust to new limitations as I was very active and independent. My biggest problem now is chest pain. I just returned from Albuquerque from having a catheter to look to see if they could spot any reason for the chest pain. They had to go in through my left arm as it is too dangerous to go through the groin with my existing dissection.

Anyway they say anyone would be happy to have my arteries and found no blockage of any sort! I do have a stressful job and know that the chest pain that I experience gets worse when I get tiered or stressed, but I seem to have some chest tightness and pain almost every day. This has sent me to the ER a few times. Sometimes the EKG is irregular and sometimes not. Thanks for hearing my story, I would like to hear from someone with similar symptoms.

Regina Kurn

Contact Regina

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

JoAnn Delmotte Husband Story

Personal Stories: JoAnn Delmotte’s Husband

This is still very hard for me to even think about and yet my mind never seems to let go of what happened to my husband. On May 23, 2001 I came home from work about 10pm and my husband Joe was up and said he did not feel well, to look at him and hear him I said good thing you have tomorrow off so you can go to the doctor’s, you sound like you have bronchitis real bad.

I stayed up with him until 11:30 and said “I have to be to work by 6am I need to go to bed”. I kissed him good night and asked if he was coming “he said in a bit”. At midnight Joe woke me up and said something is really wrong take me to the hospital. When I turned on the light it looked like he was standing in the shower, that is how much he was sweating & he was so pale I could not believe it. We got him to the hospital, they treated him for a heart attack.

After several hours they called in a cardiac specialist because nothing was helping Joe. They had given him oxygen saturation at 100%,on 2 liters, GI cocktails and morphine, nitroglycerine with no significant improvement. The heart specialist told us he was sending Joe to another Hospital, he was in over his head, not sure what was happening. When we got to the other hospital they did a cardiac catheterization, they found a type 1 aortic dissection with 1+ aortic insufficiency.(said he needed emergency surgery).

They repaired and did a re-suspension of aortic valve and repair of right common femoral cannulation sight. During the surgery Joe lost 14 pints of blood and had a total circ arrest time of 21 minutes. These are all doctor’s terms. I can tell you, they came to me with a minister and said Joe would die without this surgery and that if I signed the paper work for the surgery he still only had a 10% chance of making it out alive, and if he did come through surgery he would suffer a stroke or brain damage.

Joe had a stroke on the table. But he was & is Alive…He is OUR MIRACLE!!!! The doctor’s had told me at the 21 minutes of circ arrest if they had to do a heart valve replacement they would just close him up, because you can only have 45 minutes of circ arrest and that replacement added another 2 hours on. During the surgery Joe’s femoral veins on his legs also collapsed, (they were so week) so a doctor worked on that end too (they were trying to get a graft from his leg veins and that went wrong also) Joe went to the intensive care unit in critical condition and was there for 3 weeks, he was on tube feedings and a ventilator, a staff infection set in.

They had not expected Joe to make it through the night. But he did..after he started to improve they moved him out of ICU, and started all kinds of therapies. The doctor’s said while Joe was in the hospital they found out he had sleep apnea (450-500 episodes a night) this is where you quit breathing at night and when your body starts back up your blood pressure shoots so high, but can be normal during the day.) Joe did not show the signs of someone with sleep apnea-tired and needing naps all the time.

The doctor’s said all them years of so many episodes at night made his veins weak so they gave out. He is now on a c-pap machine at night and meds. for blood pressure + beta blockers). It has been a very, very long road for Joe, Myself and Our Children. But we live one day at a time and Thank GOD for OUR MIRACLE. There are questions we would like to ask but are not sure we want the answers, so we leave them unsaid and enjoy each other every single day..

Contact JoAnn

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Ricky Flanders-34

Personal Stories: Ricky Flanders

Hello Brian,

My name is Rick Flanders, am 34 yrs old, of Asian heritage and I live in the San Francisco bay area. I stumbled upon your website and found it helpful. I was recently diagnosed by a cardiologist after an echocardiogram that my aortic root (ascending aorta) is severely dilated at 6.2 cm. I just had an MRA a couple of days ago and am awaiting the results. At this stage, I’m trying to figure out why I would have this condition as I am not marfanoid.

My primary care doctor was concerned that I may have Ehlers Danlos since I am double jointed in my fingers and elbows. But I don’t have many of the characteristics of Ehlers Danlos (especially type IV), which are traslucent skin, big eyes, no ear lobes, and easily bruised. With Ehlers Danlos, of course, the risk of surgery is much much greater.

I am curious, did any doctor figure out what the cause of your condition was? Also, what were your symptoms before you actually had to go to the ER and had your ascending aorta grafted? Needless to say, I am very scared and anxious about all this.

Thanks,

Rick

Update: 9/21/2004:

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,

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Ricky Flanders

Kim Adams

Personal Stories: Kim W.Adams-By Jeff Hurt

My name is Jeff Hurt and I am using my partner–Kim W. Adams–of 19+ years’ account to post some info. The day before Thanksgiving 2003, Kim had an aortic dissection followed by a 10-hour surgery, six days on life support, ten additional emergency room visits after the surgery and three more additional hospital stays. Kim experienced a host of complications and today all his doctors say he is a true walking-living-breathing miracle. Kim’s an RN-case manager and works for Dallas County Parkland Hospital which is also a teaching hospital for University of Texas Southwestern Medical School. I will let Kim eventually post his story and then I follow up with a view as a family member and caregiver. The main reason I am writing today is to address a side effect–cognitive processing deficits–of the open-heart surgery used to correct the aortic dissection. Five and half months after Kim’s initial dissection, Kim’s health is great. Aside from the frequent back and chest pain from the surgery, he is doing well. He tires quickly and easily but the biggest challenge facing us today is the setbacks from his cognitive thinking and processing. Kim’s short-term memory is poor and he often has challenges with word finding, expressing himself, multi-step tasks, normal coping skills, poor judgment, loss of inhibitions and other normal thought processes. Stress exacerbates the problems and work has been somewhat difficult at best. Some of his doctors think he went back to work too soon and we are now waiting for test results concerning his brain to see if he should stop working for a while. We were unprepared for this side effect and have since learned that this is rather normal for anyone who has open-heart surgery. Some of the docs lovingly refer to this side effect as “Pump Head” because of the time spent on the lung and heart bypass pump. Short-term memory loss, mood swings, difficulty focusing and intensified emotions are some of the traits associated with “Pump Head.” At first, Kim was unaware of his deficits but eventually came to realize that he had some challenges with his brain. Three weeks ago, Kim spent two days in neuro-psychological testing in hopes of identifying the problems and finding ways to deal with them. The Neuro-psych doc stressed that Kim’s challenges are common for people who have open-heart surgery and could last for up to two years after the surgery.

This doc further stated that current research showed that those who did not have immediate symptoms experienced similar challenges five years after the surgery. We will receive all the results next week and are anxious to have a medical diagnosis. Then we can officially start making the necessary changes to our lives to adapt to these new challenges. For a long time after the surgery, I was not sure that Kim was the same person I had known for 19 years. He looked the same and sounded the same yet he acted very different. In today’s world, change is the one constant but when it is in your own household, with the family you love, it is still hard to embrace. I have titled this portion of our life together “White Water Rapids Change” and decided just to enjoy the ride. If I get soaking wet from the river ride, it really doesn’t matter. Life is a journey and when you’ve seen and faced death, nothing else really matters. We have a saying in our home, “What’s the worst thing that could happen at this point?” Death? Well, our faith rests in a higher power and for us that is just a crossing over to the other side. Yet, deficits of the mind were one of those challenges we never thought would happen. We have not come this far to give up. We will get through these hurdles and will make whatever changes to our lives are necessary so that we both can experience “quality life.” I primarily wanted to share with folks that once you clear the hurdles of diagnosis, successful surgery, the correct balance of meds and some semblance of a normal routine again, there may still be another unexpected challenge staring you in the face: “Pump Head” or deficits with normal cognitive brain processing. Face those challenges with the same tenacity as the aortic dissection, one day at a time.

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Roger Taylor-44

Personal Stories: Roger Taylor

Brian,

Your website is great!  Your experience is much like mine, though I wasn’t doing anything physical, it was a Saturday Morning and I was at work.  I had been a radio announcer for 26 years at the same radio station. I was just sitting there, about to open the microphone for a live call-in show.  Suddenly I had this sharp burning pain through my chest, sweat began to roll down my face.

I got up and walked to my office. I’ve been in radio too long, because the first call I made was to a co-worker, I said “J.D. you’ve got to come in and take over right now, I think I’m having a heart attack”, I think he dropped the phone on the way to the door.

Then I called the Emergency Squad, I live in a small town in West Virginia and so they were there within minutes.  I walked out the door and climbed into the back of the ambulance when they opened the doors, our local hospital is just a few minutes away.  The last thing I remember was being rolled into the emergency room.  This was on Saturday, March 20, 2004; I woke up on Wednesday, March 24th. (I think)

I was unable to move and very confused, it took another day to comprehend what was happening.  I’m told I was given a CT Scan, and then the lifeflight helicopter took me to a Medical Center 90 miles away in Morgantown, WV.  The Surgeon who saved me was Dr. Ganga Probhakar.  (Every nurse and doctor I talked to at the hospital told me how lucky I was that he was my surgeon)  I have only spoken to this man once or twice, just days after I woke up, what sticks in my mind is him saying, “Your aorta shredded”.  I have an appointment with this doctor a week from now, when I will get the whole story.


The helicopter crew, who flew me there, stopped by one day to check on me.  One of them said: Man, you scared the hell out of us, we didnt think you were going to make it. I thanked them for the ride, even though I didnt remember it.

I have a long scar up the middle of my chest, I also have 8 or 9 inch incisions from my ankles up the inside of both legs.  From what I understand, they repaired my aorta with a Dacron graft, put in an artificial aortic valve and did a bypass on a damaged artery.  (By the way, I’m 44 years old)  Unfortunately my wife is unable to help with my recovery, as she is confined to a wheelchair with Multiple Sclerosis.  After 9 days I was transferred to a rehab hospital, where I stayed until a few days ago.

The Physical Therapists were great and they all say my recovery is outstanding.  I was slowed a little from coming home by problems with healing in the leg incisions.  The entire hospitalization was 53 days.  It will be a while before I can return to work; I am still a little weak and need to get my endurance back.  My family and friends have been great, my radio listeners sent me a ton of Get Well Cards and my co-workers did daily updates on the radio about my condition.  Thanks again for your website, I have just begun to explore it and have already learned a lot.  Good luck to you!

Life is a precious thing…

Roger

Update: 8/7/04

Brian, I am still learning from your website, thanks for the updates. I thought I would update you on my story. It’s nearly 5 months since my surgery. I’ve been back to work full time since the first of July. My doctor said to try half days for a couple of months, that lasted a couple of weeks. I had a CT scan on July 29th and my surgeon said everything looked good; I’ll do another in 6 months. My energy level is still a little low, but I played an 18 hole charity golf tournament today, (Par 3 course) I’m pretty tired tonight, but I’m glad I could do it. (And I didn’t come in last!)  Most days I feel pretty much the way I did before the surgery, I just get tired faster.

When I saw my surgeon on the 29th, I asked him, what my chances were going into surgery? He said, I would have given you a 10% chance of survival. But, he had a great team and they pulled me through. I got to meet and thank the doctor who assisted him too. I really beat the odds, now I feel like every day is an extra day and the 20th of March is my new birthday.

Keep up the good work!

Update: 3/21/05

Just a quick update… I just celebrated the one-year anniversary of my surgery. I got my second CT Scan March 1st and saw my surgeon on March 17th. The Doc says things look good, no sign of abdominal aneurysms and kidneys, liver, spleen, etc. look O.K. I’ll get another Scan in 6 months and then if everything still looks good, once a year after that. I’m putting in too many hours at work, but I am trying to remedy that. I need to get some exercise and lose some weight. Good luck to everyone who has posted their stories on the site, I would be happy to hear from any of you.

Roger

Update: 9/20/05

Just a quick update, it’s a year and a half now and my doctor says there is no change in my CT scan from 6 months ago.  We’ll probably wait a year till the next one.  Feeling good, just trying to keep my coumadin levels right.

As always… Best wishes to all the survivors,

Roger

Update: 9/08/06

It’s been a year since my last update, two and a half years since my surgery.  Just got a CT scan and saw my surgeon.  He says things look stable, unchanged from year ago.  Come back and see me in a year.  I feel fine, no real problems I can detect from the surgery.  I still hear that constant clicking of the heart valve in my chest, but I’ve gotten used to it.  My Coumadin levels have been good, I get my blood checked once a month.  I continue to read the new stories on the site; I try to a drop a note of encouragement to newcomers.  I’m always glad to hear from other survivors.

Roger

Update: 3/20/09

Time flies when youre having fun I know its been a long time since I sent an update of my story, but its been happily uneventful. I guess when things are going well (knock wood) you dont bother to write.  Its been five years since my surgery and I really cant complain.  I had an echocardiogram and a CT Scan at the first of the year and my cardiologist says everything looks good.  The heart valve is clicking away, I just try to remember to take my meds and keep pluggin along.  I still work six days a week; Ive been at the same radio station for 31 years now.  Check out our website at www.wdnefm.com On my air-staff page I have a brief version of my story and a link to this website.  I still visit this site often and read the new stories.  Im always happy to lend moral support to AD survivors.  Ive had 1,825 extra days and counting.

Take care,

Roger Elkins, WV Taylor                                                                                                
Update 3/21/2012
Roger
Name: Roger Taylor
Email: rtaylor@wvradio.com
Age at time of Dissection: 44
Type of Dissection: Both Ascending and Descending
Date of Aortic Dissection: 20 March 2004
Tell Us Your Story: Update: 3/20/12

Another long hiatus from the site, 8 years now since the dissection. Wish I could say ditto on the post from 3 years ago, but I can’t. Recent CT Scans show I have an enlarged aortic arch and will have to have another surgery. Surgery to replace the aorta is recommended if an aneurysm measures 5 – 6 centimeters. (Mine is 6.7) This is an open chest procedure, like the one I had 8 years ago. The subclavian and carotid arteries have to be rerouted and the aorta is replaced with a fabric graft. This is major surgery that requires a heart-lung machine.

My descending thoracic aorta has also enlarged, but not to the extend of the arch. They want to do endovascular stenting on it, a less invasive option. Stents can be placed into the body without cutting the chest, it is done through an artery in the leg. The plan is to perform the open chest repair, then after a week or so of recovery time in the hospital, they would do the second procedure. I am planning to have this work done at the University of Pennsylvania Hospital in Philadelphia.

The good news is the valve and repair from the 2004 operation are in good shape, they just need to extend the replacement through the arch and stent the abdominal. Simple right? No, but I’m trying to stay optimistic. If you’ve had these procedures done, I’d love to receive an email from you. I had a phone call out of the blue tonight from a fellow in California who recently went through a dissection and we chatted for 20 minutes. He had the same fears we all go through, I hope I made him feel a little better. Good luck to all the survivors out there and say a little prayer for me.                                                        

Phone (304) 636 – 7573

Contact Roger

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

3/20/13

Still here… A year since my last update, 9 years since my dissection. I had the total arch replacement surgery on July 20, 2013 and obviously I made it through. I have healed well and I’m happy to say, through diet and exercise I have lost 120 pounds in the past year. (Yes, it can be done) My incentive was to lose weight before the surgery, I started on March 15, 2012 and when I arrive in Philadelphia on July 15, I had lost 70 pounds, since then, I have lost another 50. First of the year I joined a gym and I workout 3 days a week. My surgeon decided to hold off on the abdominal stenting procedure, a CT scan after 6 months shows the repair looks great and the aorta is stable, so we will wait another 6 months and check it again. I really feel great and I’d tell you more, but I have to go to the gym.

Patti Cooksey Fisher-58

Personal Stories: Patti Cooksey-Fisher

Brian,

My husband survived the 11 hour surgery to repair his dissecting aorta

nearly 5 years ago. He had respiratory problems coming off the

machine. A year after the surgery he was tested and found out that he

had an acquired brain injury. Have other patients experienced this?

Originally he was treated for depression, but his short term memory,

fatigue, and confusion did not clear up with therapy and medication . It

was after they had exhausted all efforts to treat depression that they

finally tested him for evidence of a brain event.

Also, his vocal cord was damaged in the surgery and paralyzed. He now

has an implant that helps him talk, although he needs a microphone if he

is in a class or meeting. I wonder if others have experienced this too.


Recently, his surgeon said the graft that was used to repair the tear

can last 5-10 years. Do you know anything about this?

Certainly we are grateful he survived and make the most of each day now!

Perhaps some day my husband will write his story–the story of a

hospital chaplain who survived such a horrific event.

Update: June 10th, 2004

Brian, My husband was 58 at the time, had been a hospital chaplain in

the trauma center for 13 years so he got excellent care in the ER.

However, like some of the other stories I have read on your web site, it

took many tests and many hours before they found the tear in the

ascending and descending aorta. He was in surgery and on the by-pass

machine for over 9 hours. His condition was very grave. He also went

into respiratory arrest in ICU and had to be put back under for several

days before they could gradually bring him back up and gradually wean

him from the machine. He has had a host of problems in the years that

have followed, but continues to enjoy and contribute to life as much as

he can.

Patti

Sincerely,

Patti Cooksey-Fisher

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Colon Brown-48

Personal Stories: Colon Brown

Colon Brown

I am the Director of Congregation Development, the United Methodist Church, the Detroit Annual Conference. After years of serving the church as a pastor I found myself in need of the same care that I had provided to so many in the hospital. Believe me, every visit was meaningful to my family and to myself. In my present position I do lots of presentations to large groups of people on change and transformation. I also have done post-graduate work in Natural Systems Theory and self-differentiated leadership. I have a Doctor of Ministry degree from McCormick Theological Seminary, Chicago, IL in the dual fields of church revitalization and spiritual formation. Needless to say, the church has played a big role in my life. But like many people my age (48) I find more meaning through community, especially when it rises up spontaneously as it did for me during my surgery and post-recovery phase. I have a wife who was on sabbatical when my aneurysm struck and because she didn’t have to teach she spent many hours nursing me back into shape. I have three children, ages 23, 29. and 6. Each child went through there own trauma as they went through the surgery process as a family. I love the work that I do but the most important thing in all the world to me today is my family and my friends. I honestly believe that a balance of medicine and faith have seen me through. I also believe that it is through God s grace that any of this makes any sense to me, so every day is truly a bonus a day for me. I am also profoundly aware of the fact that not everyone has a remarkable story to tell, some die because of the same thing that struck me. For those folks I hope that they also find comfort and peace to continue to go on living and prospering in their life. Every Day Is A Bonus Day On Dec. 21, 2001 I experienced severe chest pains that eventually made their way into my stomach. My wife, Cindy helped rush me to the hospital. There we were told that I was having an acute aortic aneurysm (AAA). Many people have told me they have never heard of anyone surviving an “AAA”. The surgeon, Dr. John Rogers, recommended immediate surgery. Many of my family and closest friends anxiously awaited the outcome of the surgery, with no assurance of success. The hospital became for them a sanctuary, a place for prayer, crying, and close support. However, it was also a time that the family felt confused, bewildered, and regretful. For example, Nikki erased my message that I had left on her cell phone earlier that week; not knowing whether she would her my voice again she told me how much she regretted doing that. Troy began to think about what life would be like for Jono without a Dad and how he, Troy, would be able to help Jono if it came to that. Cindy told me she began feeling all the things you can feel when your spouse dies at the of forty-eight. So, every one had lots of intense feelings that were both spoken and unspoken. In the waiting room, there was a tremendous amount of suspense. To help keep people focused was a close friend, Father Swiat, from Holy Family Catholic Church, many neighbors, and friends of Troy and Nikki. Cindy’s sister and brother-in-law made their way from Ohio. Many other friends and neighbors also waited in that place hospitals call, “the waiting room.” For what they were waiting, no one knew for sure. Throughout the day we also received numerous phone calls. We figured God had heard from every religion on the face of the earth. It is important for me to know how much people cared enough for me to pray and to “wait”. As the surgery progressed, the entire aorta was dissected from the arch, which begins at the top of the heart, continuing down two inches. The kind of surgery that Dr. Rogers uses is called “extreme hypothermia”. They wrapped my body in special blankets that were designed to take my body temperature down to 17 degrees Celsius (he literally froze me). I was in a state of suspension; they do this in order to preserve the tissue and to minimize brain damage. When they began re-warming my body temperature, they noticed a leak in one of my repaired aneurysms. In order to fix the problem they had to perform extreme hypothermia again. The nurses put ice packs all over my body, including direct contact to my face, which resulted in frostbite on my cheek and forehead. The normal time to keep the body in such a frozen state ranges from 30-40 minutes, each second being extremely critical. In my case, I was cold for 50 minutes the first time and 55 minutes the second time. The doctors were concerned with the amount of oxygen that was getting to my brain during that time. This is because that the three main arteries to the brain had to be cut back from the aorta while the surgeon repaired the aneurysm. The results of the lack of blood and oxygen to the brain left me with a mild stroke…mild speech problems and some weakness in the right leg. My surgery lasted more than 8 hours. The surgeon told my wife, Cindy, that I had a 10% chance of surviving the surgery. Cindy, Nikki and Troy spent the rest of the 48 hours at the hospital along with Nikki’s boyfriend, Scot, her best-friend, Stacey, my sister, Bonnie and my dad. Nikki’s old college roommates stayed at home to watch Jono, while neighbors ran back and forth between the hospital and our home, trying to help in every way possible. One incredible story occurred on Friday regarding Father Swiat. He pulled our neighbor, Sue, aside and gave her $200 from his billfold. He humorously stated that, he didn’t know if I had finished my Christmas shopping for my family, being a typical male…last minute shopper. Sue was sent out to purchase gifts for Cindy, Nikki, Troy, and Jono, making sure that they had something to open on Christmas. In addition, he had two of Troy’s friends bring over a Christmas tree to the hospital, trying to keep every one’s spirits up. I learned later that in order to take their mind off of the emotional stress, my family put together about 10 different puzzles in the waiting room and conversed with other families, each comparing stories and all searching for hope during a “joyful” time of year. On Sunday night after the initial surgery, I spoke my first words. The family tells me I said, “stop it” because the nurse was changing my position. About 10pm that night my family came in to see me to say good night. I woke up for a minute and heard them (I still couldn’t see). They said “We love you” and I said, “I love you too.” My dad told me that the Detroit Lions lost 47-14 and I said “Oh” and groaned. It was now Monday, Christmas Eve night. The family was wondering why I wasn’t talking more that night, from their point of view, I had a bad day. I was completely out of the anestic and I should have progressed enough from that point to get my speech back, but some of my family expected an “immediate awakening, which wasn’t realistic.” At this point each family member reacted to this by taking a walk etc…even though my family’s heart wasn’t in celebrating Christmas.


They told me later that I would want them to for the sake of Jonathan. My family tells me I gave them the best Christmas present on Christmas Day, in the morning, I was asking about them, and wanted to chat. After a week of being in the hospital I was moved from ICU to a “step-down” floor. I began to ask for different things to eat from restaurants. My daughter, Nikki, wheeled me around on 2nd floor so I could see all the surroundings. I could walk a few feet hanging on to the wheel chair. I pretty much spent the first days at home doing all sorts of therapy; speech, occupational, and physical. I couldn’t walk very well and had to helped to get out of the chair. Someone also had to feed me because my hands shook so much. After six weeks I began my out-patient therapy. This part of my therapy lasted about seven weeks. It was during this time that I learned to drive again as well as got ready to go back to work. My blood pressure continues to normalize with several medications being closely monitored by my doctor. My cardiologist is doing his best to regulate it properly, thank God. I returned to work after three months. For the most part this has gone well except I notice that I get tired more easily. After five months I have much for which to be thankful. I still have numbness in my thigh and my speech, when I get fatigued still slurs. Other than that, I am doing great. Things don’t work out exactly as we thought. I never thought I would experience a “near-death” trauma. But these things happen…to all of us. When they do, we pick up and keep going and do so in the strength God gives us. I now know, beyond all doubt, that God gave me my life back. Many times a day I think about that. God saved me not only in some kind of metaphysical way, but literally, in a physical way. I can never be the same. I have more love, more tolerance and compassion than at any time in my life. It has changed me in ways that if I had “skipped” I would have never known. But there is no question that every day is a bonus day.

Contact Colon Brown

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Keith Hallbourg-25

Personal Stories: Keith Hallbourg

Brian,

Hello. I just happened upon your website via a “Google” search. I too survived an acute dissection in 1994 when I was 25 years old.

Long story short, I am still here with a St. Jude valve and a dacron ascending aorta. In addition to some physical limitations and chronic concerns I am fairing well enough not to complain much.

All things considered I could be dead for 10 years plus at this point.


That said, I continue to suffer mentally from the psychological trauma of the entire life changing event.

This mindset has been exacerbated greatly with my brother’s recent sudden death (April 16th, 2004) of an acute aortic dissection, at age 37.

I would likely enjoy, or at least find cathartic, corresponding with you regarding our similar experiences.

If this is of any interest to you please email me at your convenience. Otherwise, best of luck to you.

Cordially, Keith W. Hallbourg

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Howard

Personal Stories: Howard

Brian,

I am a survivor of an aortic aneurysm in 1990 due to Marfans. Thanks to my surgeon I have had nearly 15 healthy years thanks to a dacron graft and valve re-suspension (own).

I still am being monitored, and have just found out that dacron can dilate, so my post operative measurement was 4.8, but varies between 4.6 to 4.8.

I am amazed at how I live a completely normal life playing tennis twice a week, yet always at the back of my mind the worry of further dilation or the dreaded rupture.

I recently had a daughter who thank god does not carry the gene. We would love a second child, but are we chancing our luck.

Cheers,   Howard

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Barb Yoho-61

Personal Stories: Barb Yoho

My mothers (Barb) aortic dissection story:

The end of 2003, my mom (Barb) had been having high blood pressure, which was uncharacteristic for her.  Her family doctor dismissed it as no big deal, so I encouraged her to switch doctors.  Thank God she did.  The new doctor heard a heart murmur, sent her for tests the next day, and she was admitted to the hospital for surgery immediately after the test.

She had a complete dissection of the aorta, starting at the heart and going down the whole length of the aorta, into both arms and legs.  Her valve was replaced and the aorta was wrapped at the top (I think), and now shes on medicine (beta blockers) and will be following up with the surgeon and the heart doctor on a somewhat frequent basis.  This was late January of 2004.  Oh and the kicker to this whole story, is that she probably had started her dissection about a year and a half ago or so it is thought.  In October of 2002, she had very sever chest pain (front and back), and went to ER, thinking she was having a heart attack.  But when they took her blood pressure, her hand went numb, so they figured it was a stroke, and never tested her for heart problems (they checked for gall bladder, ulcers, stroke, but not heart).  But now the doctors think that was when the dissection started.  God kept her alive for some reason she really should be dead by now!


Anyhow, its now a few months after the surgery, and my mom is still recovering.  She has been told that she might have to have more surgeries down the road, but no one knows for sure.  She was told by one doctor that it was caused by hardening of the arteries, but by the surgeon she was told that no one knows what caused it.  Im hoping its not a hereditary issues, because its not something I would like to go through, and I have 3 small kids (1,3,5) and I dont want them to have to go through it either.  But they just keep telling her they dont know.  Anyhow, shes goes back to the surgeon in about a week or so, already had another test of the aorta, (and she wasnt admitted right back into the hospital, which is good), so we just keep thanking God that she is alive, and appreciate each day!

I also want to add that I am so glad I found this website.  Im big into checking the internet for resources, and was getting rather frustrated that I couldnt find information.  And its great to have a place to go to talk with other people who have had this happen (and are STILL ALIVE!!)!  I hope I can get my mom reading and posting, but if not, then Ill pass the info on to her.

Contact Heather Kronheim (daughter and author)

Contact: Barb Yoho (patient and mother)

Chris O’ Brien-52

Personal Stories: Chris O’Brien

Brian,

It was 01/17/03 that I experienced my dissected aorta aneurysm.  I was taken to St. Joseph’s hospital ER in Atlanta.  I spent till the end of June 03 in various hospitals-starting rehab.  In July 03 I continued this rehab on an outpatient basis.  This was after I spent 41 days in ICU with complications of kidney failure and stroke associated with the surgery in the ER to place a patch on my aortic valve that was dissected.  I was 52 years old when I experienced the dissected aorta.

The rest of 03 I spent in various rehab centers – in which I still participate and exercise today.  I lost some blood flow to my right leg during the procedure to patch my aorta and therefore have suffered nerve damage which still exists in my right leg today.  I walk with a limp and will not experience re-growth of the nerves for 18 – 24 months.  That is however the extent of my injuries from the aortic patch procedure.  I feel very lucky.  John Ritter died of his aortic aneurysm about two months after I had mine.  I believe he also was 52.


Thanks for doing this site.  I would like to know if you feel tired and without stamina?  I find it difficult walking to the mailbox to get the mail.  Also has anyone told you about longevity associated with this condition? I feel somewhat normal except for the ability to walk that far on a treadmill or ride a stationery bike.  It gets a little bit better every week.

I’m on a lot of blood pressure medicine and coumadin.  Also wellbutrin for depression and stratera for ADHD.  These problems existed before the aortic rupture and still afflict me today.

Again, thanks for taking the time to do this site.  It is a godsend to me and I really appreciate you taking the time.

Regards, Chris O’Brien

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Dave Wallace-60

Personal Stories: Dave Wallace

Brian, You asked for my story so that you could keep tabs on the other survivors. Here is my story. I am 60 years old and work as Corporate Director for Business Development for a large and medium caliber ammunition manufacturing company.

This is a very competitive business both internally among all the type A execs and externally in a very tight market place. I was becoming less and less resilient to the various pressures brought about by the job. Our corporate secretary noted after one interaction on the phone that I was beet red. She advised me to see a doctor. I did and he found nothing. During the week of 21 March I was detailed to Hamburg, Germany to shepherd a contract thru some negotiations with one of our foreign partners.

The flight was a disaster from the beginning: Sitting up all night in coach, followed by a whirlwind of mutual entertaining between the companies, up at dawn to bed at midnight each day then another return transatlantic flight of thirteen hours from Hamburg with tight connections in Amsterdam, a fall down an escalator, then trapped in the airplane to Memphis for ten straight hours. Lost luggage to top everything off. Finally, home on the 26th of March, my wife and I had scheduled a firearms course on Saturday the 27th because I leave her alone at our rural home so frequently.


Attending that course was a guy from Switzerland named Ray Vetsch. He drove a Hummer and had a beautiful brace of pistols. We liked him immediately. We finished the 8 hours course and my next task was to wrap up things at home and get ready for a flight to Atlanta on the 29th. The 29th didn’t happen. On Sunday morning, 28 March I went out in the rain to make sure some french drains I had had installed on our house were draining. I bent down to clear one of the drains, felt something like a violent flutter in the middle of my chest. I thought “what the Hell was that?” I headed for the house and went down on my knees.

My stomach felt like I had eaten something rotten, it ached terribly. I got on my feet and headed into the house. Instinct told me if I didn’t keep moving I would not be able to get up. My wife was busy trying to do her bit with the Income Taxes. I got her attention and told her to drive me to Freeman Hospital. I jumped out of the car at the ambulance entrance and banged on the glass doors. The nurse let me in, and I told her I thought I was in bad trouble.

She summoned the doctor on duty, Dr. Ray Vetsch. I said good bye to my wife, assumed I was toast and placed myself at the mercy of Dr. Vetsch. He saved my life. That was three weeks ago, ICU and tubes sticking out of everywhere seem like a bad dream. Dr. Vetsch build an aortic stint, replaced my aortic valve with an artificial one that I can hear at night, and did a single bypass. I get stronger everyday. I am grateful to people who squeezed my hand, kissed my forehead, sent me flowers and prayed that I would recover. I won’t let them down.

Dave Wallace 417-782-6884.

Email Dave.

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Duane-31

Personal Stories: Duane

I spoke w/you on the phone the other day. My name is Duane. I, as I told you also had an Aortic Dissection. Mine felt like a burst in my chest around 2p.m. on Dec. 16 2003.

I was 31 years old at the time and since have been blessed w/my 32nd birthday. Any how; on the 16th of Dec. I was removed from the area where I work, which can be considered a stressful environment! I was moved to the facility’s hospital where I was given nitro to slow down my heart. I refused to stay down even so far as to become combative.

At 6’+ and 320#’s That created many problems for me in the weeks to come! I was ambulanced to the local hospital by 3pm and was told that I probably had food poisoning! I was flown to the next city around 11p.m. and went into surgery around 1a.m. Dec.17.I don’t know all  the details after that but I do remember waking up to all my big brothers(3 of them none whom I have had to look up to for years) on Jan. 2nd or 3rd and thinking “ahhhhh, s___

I died and went to hell!!”I was restrained to my bed and did not feel I could move my legs. (my arms were restrained) I have since went to rehab where I learned to talk, swallow, walk, (eat, drink, and the rest that comes with all this) I came home on Jan. 17, 2004. to my wonderful family.

Update: 4/22/04:

Brian ,

Well I have been having a rough time keeping my head up do to the idea my biological father is having surgery for his aneurisms in his iliac. He also has a growth inside his heart. He told me it is called coronary ectasia. I go numb on occasion and have not figured out what is causing it. I believe it is nerves from years of pulling milk. But who knows until you talk to the docs. I am sending pictures b4 and after.

As for drugs that I am on:I  take lasix,avapro,protonix,trandate and have ambien and lorazipan for those nights when I can’t get a grip! I was cleared for light duty at work for 4/15/04 although there is none available. I am cleared to go back full-duty 5/17/04. Well I am going to send The pics. Hope to talk soon (530)257 2442 and the city I was flown to is Reno, Nevada


Update: 6/1/04

Hello Everyone,

Just writing a tidbit on my latest appointment with the cardiologists. Today my wife and two young Helsels accompanied myself to Reno where we attended an appt. with Dr. Nobles. He looked over my chart and introduced himself to Maura and Declan, he then looked at me and pointed to the line on my chart that shows blood pressure readings. He then said, “Things look excellent.” He checked my pulse at the ankle then at my neck and then listened through my chest cavity. He again smiled and said, “Wow!!!;not a one murmer” Apparently things have healed well and I am well on my way to recovery.   Well its been “Just Another Day” in Duane’s life   Duane

Update:5/17/04

Hey Brian,

It has been a while since we spoke. I thought I’d bring you up to speed. After a year and 4 months my original LIFESAVING surgery has been re-evaluated and surgically removed by Dr.Craig Miller. I re-entered the hospital here in Susanville, Ca. on March 23,2005. This time the Doctor and nurses were very expedient to do a CT and fly me out to Reno,Nv. The original surgeon (the one who performed the LIFESAVING surgery originally) was a little surprised to see me back in his local hospital. He attended to me very cautiously.

Speaking with his peers localy and at Stanford made a decision to have me flown to Stanford. There was found an anomaly in my thoracic region. Apparently the original dacron hose and sutures had given a little and sprung a leak that created a sudo anyeurism.(from the CT scan it looked like a sack had formed behind the aorta and was not leaking anywhere. Dr. Miller went in on Easter Sunday and replaced my aortic valve with a St. Judes Valve and the aorta across the arch. Every thing seems to be well as of now. I am now a somewhat skeptic but a thankful skeptic. Gotta go haven’t been getting much sleep due to my personal life.

Duane Helsel

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Duane’s Picture Before his AorticDissection

Duane’s Family picture after AorticDissection w/exchange student

Father/Daughter Dance Picture

Duane after the surgery!

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

Brian Tinsley-40

Personal Stories: My Aortic Dissection Story-Brian S. Tinsley

My name is Brian S. Tinsley and here’s my story of my aortic dissection. On August 22nd, 2003 I was just starting to play my usual Friday afternoon match. We had played about 3 games and while lunging for a low ball to my backhand side, I “cringed” as if my entire chest had exploded. I immediately sat down on the bench on the court as my partner said that’s it. I sat there for maybe 3 minutes and we walked back into the main lobby of the club.

Then I was approached by several folks wanting to know what was wrong with me? Anyways, a “key” mistake I almost made was allowing my partner to drive me to the hospital versus calling 911. The traffic was bad on Friday afternoon and no telling how long of a delay there might have been? So, I moved out to the front entrance of the club and we called 911. They arrived about 12 minutes later. I was taken to Everett General hospital-about 6 miles north of my club. I was given some baby aspirin and nitro tablets on the way up in the ambulance. I still had no idea of what was wrong with me, just a feeling like never before.

To my luck, EVERYTHING fell into place for me! GOD has this all planned out for me. I was immediately taken to the ER room, where to this day, that ER doctor was a “crucial” factor in my survival. From what I can remember is that I was taken to the CT scan/MRI lab and put down in this tube that completely submerged me. I was very scared and wanted out of that thing! The next thing I remember is this man, about 6’4″ standing at the end of my bed telling me that I had a 50/50 chance of living. As my wife-who was over with my kids at a friends house arrived to hear this news, we all were terrified. For some strange reason, I was completely out of it and just remember being taken away with out any chance to say goodbye to my wife and kids.

The next thing I remember was waking up-seemed like I was missing a few days, in a room with all kinds of devices stuck in my body. And, with my wife right at my side. From what I heard is this, when I arrived at the hospital my Blood Pressure was very high and they needed to get it down as well as them not being able to find a pulse in either of my legs. I have a 6 inch scar on my left thigh towards my groin and a 11 inch one down the middle of my chest. I was told that my surgery lasted from about 10:00pm to 0600am. Little did I know that the hospital that I was taken to was the number one cardiac hospital in the state and top 5% in the nation.


Thanks GOD! And, I also was fortunate to have Dr. Jim Brevig on call who did the operation of replacing my ascending aorta. I can not thank Jim and the team of nurses at the hospital enough. I have to tell you what happened on 3/27/04, I was on my walk while my daughter was at ballet. I decided to go a different route and then head back and get my wife her Starbucks coffee. Guess who I run into while walking? Jim Brevig! Here’s a great article about Jim! I got a another chance to tell him how thankful I was for him saving my life and gave him a big hug!

Furthermore, I was able to stay in their new unit too! So that meant, I spent the entire 5 days in the hospital in my “single stay unit” versus having to go to various rooms during my recovery process. The hospital stay was tough-I hated lying there and not being able to do anything. I would see the cleaning lady come in and pick up the trash cans and change them thinking-man… I would love to have that job!

Suddenly, the simple things seemed like they were so important to me. When you are given a second chance, that’s how everything becomes. It’s funny that you sometimes need a second chance to realize how fortunate you are to have family and friends who love you and pray for you. My dad had told me that he had asked God to save me during the late night and was comforted when he felt God would take care of me and see me through this. Being at the right place and right time-and with the GOOD LORD on your side was the “key” to my survival.  With a skill saw running down my chest and clamps pulling everything open wide for the doctors/nurses to repair me, I was sore! Even, 8 months later, my chest is still tender when you really press on it.

After the surgery, I could barely walk or do anything that might risk having my chest open back up. My wife-who is my number one fan, was incredible! She was at my side helping me with EVERYTHING! I could not shower, go to the bathroom, get out of bed, into bed without her help! Thanks GOD! When I got home, I ended up living in our down stairs (main floor) as I could not make it upstairs to the bedroom. Although, I was looking forward to a bed that was big enough for me as my feet stuck out on those hospital beds and my son’s bed that I used while staying down stairs.

I can remember sitting up on couch just gazing out the window feeling every heart beat. It seems like (and still even today) any beat or funny sensation is felt and somehow sends a message to your brain that you better pay attention. My parents were amazing too! As well as my brother. Listen to me, forget everything……Remember your family! They are the only thing that matters!

As I was starting my recovery process-I was told that I would make a full recovery in 2 months! Literally, this was written on my “short-term” disability insurance forms. I work for MCI-formally Worldcom (bankrupt) and luckily had pretty decent coverage for the 2 months that I was out. Little did I know that the 2 months was the expected time that my breast bones would be healed back-not necessarily me ready to go back to work and just all of the sudden be like the “old Brian” and as if nothing had ever happened.

I started a walking program while on disability we would drop my son off at pre-school and I would start walking and then when my wife put him finally into the class, she would come pick me up down the road. I noticed a pain in my right hip. I had never had any hip problems before and as a competitive tennis player, I was in pretty decent shape. However, once you go through this type of surgery, you are pretty much back to square one and will need to work on getting back into shape. Chance are, you might not get back to your old self again. That’s tough, but I got a second chance! I am very thankful!

The hip pain eventually moved down to my right calf muscle and stayed there for almost 5 months! I went to my doctor, who referred me to a vascular surgeon-Jim Cook. He had me do a test where they measure your Blood Pressure on your ankles and arms, do a stress test and measure you again for your circulation. I thought everything was OK, but when I met with the doctor again, he said that I had a form of
claudication” in my leg. Then, I panicked! I thought-great, my leg is going to come off and I will be in  a wheel chair. That’s what happens when you go to the internet and are not sure what you are really looking for. Be careful!

The pain in my leg would seem to come and go. It turns out that when you have a tear, it moves around. Which explains why some days I wouldn’t really notice it and others I would. Especially on hills or stairs. It was determined that I could do a couple of things. Do nothing, with the chance that it would improve over time or, get an angiogram and see what was really going on.

I was leaning to the opinion, I will give this one year and if it’s not better, I will get the procedure done. However, I was goofing around on the internet one night and came across the Stanford University Website. Little did I expect a return email as I had sent other experts on AD emails with no responses. I sent them my story and I received an email back from Dr.Craig Miller himself. He’s probably the most knowledgeable surgeon on Aortic Dissections on the planet. Here’s his biography! Craig put me in touch with Sunny and the co-department head, Dr. David Liang and I sent them my medical records and all my CT scans. These folks have a special ward called the Marfan’s Syndrome Clinic. It turns out that a majority of Marfan’s patients have aortic dissections or other connective tissue disorders.

My time at Stanford was going to consist of me getting some tests done on 3/19 and having a “flap fenestration” done on my left leg and an aortic stent either in my iliac artery or aorta (true lumen). However, after a series of tests, it appears that my circulation had improved enough that I didn’t need the surgery. My present situation is half of my body is being fed the blood via the “false lumen” and the other side (right) is the “true lumen” side. Dr. Liang decided that I basically needed to work to get my heart rate back up, after discovering that the root cause of my aortic dissection was most likely caused from a defective valve. It turns out that I have a “bicuspid valve” instead of a tricuspid valve. He thinks that this is what lead to a weakening of my aorta. I originally thought it was caused from High Blood Press/Stress and many years of competitive tennis and some heavy weight lifting in my late teens and through late twenties. I am also taking some medication for depression. Read my depression section for the name of it. It seems to be helping.

My hope is that this site will help other people find more information on living and dealing with an aortic dissection. Part of my therapy is trying to make this site very helpful to others. I feel fortunate that GOD gave me another shot at life and I need to help others too!

Update: 8/20/04:

I had my CT scan done about a week ago at CDI imaging in Federal Way WA. They have the most sophisticated machine in the country. I had my echo cardiogram done about 2 months ago. So, I had my meeting with my cardiologist, Dr. Sandra Gan from Stanford a few days ago. My CT seems to have stabilized as I am 2 days away from my 1 year anniversary. My echo seems to look good as well. But, my Blood Pressure is high about 50% of the time and I had neglected to take my night time medications, so I am taking them now and will start checking my BP starting Sept 1, 2004 and track it. I am also going to really try to make sure that I exercise EVERYDAY (7 days) a week for a minimum of 45 minutes.

Update: 12/25/12:

It’s Christmas 2012, I am coming up on 10 year anniversary on 8/22/2013!!! I made it over another hurdle -the 10 year mark! I am going on 2 years now w/o a CT/MRI and believe that I will need to get one this next year again after having a CT 8 straight years and then switching to a MRI/MRA. I am still playing tennis 4-5 days a week and plan on trying to … Or… I will finish in the top 5 in the PNW for the Men’s 50’s next year. I am also going to be captain again of the USTA team 4.5. I am also going to get over my fear of flying as well. I am sick and tired of living in fear of the “what if’s?” and let it ruin my ability to travel and go on vacations with my family the last 20 years! I am amazed at the response I have had on this website and the incredible help that Dr. David Liang at Stanford has been able to provide. I am so thankful for his support!!! I am so blessed to be able to still have my wonderful family and beautiful kids.  I hope to have this website for another 30 years! Or more!!!!

Thanks for stopping by to view our stories. Please help me keep the site going by shopping at Amazon.com-It’s very much appreciated. Brian Tinsley founder of AorticDissection.com (please book mark the link once you get to Amazon.com for future purchases!)

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