Category: Forties

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.

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

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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