Aortic dissection & aortic aneurysm information support group

Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

Eternally Grateful, yet depressed.

First of all, thanks for having this support group. It is hard to find fellow survivors and even harder to find positive information regarding Aortic Dissections on the internet.

My story is:

On 4-27-10, I was showing my daughter my alma mater at the University of Texas at Austin where she had just been accepted and was considering attending, when I felt a horrific ripping pain in my chest that brought me to my knees. I got up and we walked a couple of hundred yards to her appointment where I had to sit down. I could not move my right leg and was sweating profusely. I told my daughter not to call 911. She disobeyed me, thank God. I was taken immediately by ambulance to the nearest hospital (St Davids) which happened to be one of the best hospitals in Texas. Since I came by ambulance, I immediately saw an ER cardiologist. My cardiac Enzymes and EKG were normal along with blood pressure and all other vital signs and labs. He was ready to discharge me. I mentioned in passing that I could not move my leg for about 10 minutes. His demeanor changed and he ordered CT scan immediately. Within minutes, I was greeted by the cardiovascular thoracic surgeon on call (Dr Andrew Hume) who happened to be an expert on dissections. I was informed that I had a aortic dissection that was both ascending and descending and was in a life threatening situation that required immediate surgery. He described the surgery, which involved replacing the damaged part of the ascending aorta with a dacron graft. I am a pharmacist by profession, and knew the seriousness of my situation and the possibility of death during surgery. My wife was in route and would arrive in about 30 minutes. I asked if I could wait until she arrived before I went under for the surgery, but was informed that we need to proceed immediately. I called my family on my cell phone to let them know how much I loved them and that they made my life worth living.

The surgery went very well. I spent three days in ICU and about a week in the hospital. I live and work in small towns in Northeast Texas. I drove a thousand miles to visit my son a week before the dissection. If the dissection had happened in any of these places, if my daughter had not called 911, if I hadn't mentioned that I couldn't move my leg to the ER cardiologist and he hadn't have picked up on it, or if I had a surgeon that was not experienced with dissections, I have little doubt that I would not be here to write this.

I never took any prescription medications before, but was placed on a beta blocker immediately. I live about 250 miles from my surgeon, but have chosen to go to him for routine CT scans. I see a cardiologist every 3-4 months, and he added Lisinopril and Amlodipine to keep my blood pressure and pulse as low as I can stand it and well as a couple of cholestrol/triglycerides medications.

Recovery was slower than I wanted it to be. The surgeon said that universally, patients that went through this surgery felt depression, sleep difficulties, poor appetite, and exhaustion, but all this would improve with time. I walk regularly and my strength has slowly improved.Unfortunately my appetite has returned. I am eternally grateful for each and every day. I am now 59. I still have the descending dissection, which has not changed in the last year and a half. I realize fully, had incredibly blessed I am to be alive with very few adverse effects from the dissection and surgery, yet I still find myself going through periods of depression and exhaustion although they have been fewer and farther in between. I am not sure whether to attribute this to the medication I am taking (all the blood pressure medications have depression and drowsiness as possible side effects). I certainly have no reason to feel anything but grateful. Do other long term survivors experience this? if so, for how long? thanks.

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Replies to This Discussion

Permalink Reply by Kimberlee Jones on January 6, 2012 at 0:12

Hi Jefferson,

Thank you for sharing your story with us. I do believe all of us survivors go through periods of depression, certainly right after the surgery. Here I am 6yrs later and I still have my moments. I am a firm believer the mental recovery is much longer and harder than the physical. But thanks to Graeme I made it through that mental part. I do get drowsy all the time but my cardiologist is suggesting sleep apnea(unrelated) so I will be tested for that soon.

Keep your chin up...you're a survivor!!!

*hugs*

KImberlee

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Permalink Reply by jefferson helton on January 6, 2012 at 2:21

Thanks for your encouragement. It is great to talk to long term survivors and get an idea what to expect. This site has helped a lot and I really appreciate your sharing your experience. Thanks again,

jefferson

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Permalink Reply by Graeme on January 6, 2012 at 17:30

Jefferson,

I too had the whole "9 yards" - Type A dissected aorta and 8 inch Dacron replacement , then they had to take it all out and start again after the aortic valve was found to be too trashed so had to be replaced with a mechanical heart valve. When they opened me up initially it was a train wreck inside.. 4 pints of blood in the pericardial sac and next to no pulse, 10 hours on the table, body cooled to 18 degrees and chest cavity filled with ice... so i was told after i made it through the first 3 days in Intensive care - where again I nearly died (again) of a lung infection. It too took me a looong time struggling against the 'why me' - to have this happen in the first pace to 'why me' - as to why I survived.

Now, some 9 years later I am at peace with "the why me"... Simply because it was meant to be.. no more.. no less.. and that's one of the main reasons this site was created - as it was one of the inumerable things i have done to put something back into what life has given to me. So. dont question why. Question how you can make use of your new life. Enjoy - live life! My story is here if you want to catch up on how I felt and reacted to my dissection.

cheers

Graeme

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Permalink Reply by jefferson helton on January 6, 2012 at 20:59

WOW!!! Just read your story. It is truly amazing what a horrific journey you and some of the others went through and have managed to maintain your humanity, faith, and love of life. So many things had to fall into place for you (and most of the rest of us) to survive since time is of the essence. Again, I really appreciate your creation of this site. The site and your story are truly inspirational.

jefferson

PS. Your story was also incrediably well written.

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Permalink Reply by Graeme on January 8, 2012 at 14:54

Thanks Jefferson. Another thing i want to add to my bucket list is my own book - maybe about my Aortic Dissection and how and what it means/does to go through it and come out the other side. We'll see!

cheers

Graeme

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Permalink Reply by jefferson helton on January 8, 2012 at 15:46

great! I have a master's degree in theatre (in addition to being a a pharmacist) and have written lot of plays. You really do have a flair for words and imagery as well as having a great story to tell. I have found writing to be very cathartic. You do have a great story to tell and the ability to do so, just do it. thanks, jefferson

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Permalink Reply by Cheryl Kerber on January 8, 2012 at 18:27

Wow! You have done the total extremes there with your degrees --- medical and artistic -- you must have a very strong right and left brain.

I too find writing cathartic - for me I have written and illustrated about 31 children's books (none published since I'm too chicken to submit them) and I'm still working on several and trying to finish a chapter book series. All kind of got put on hold for a bit until I got off the pain meds -- too hard to focus on the paper - and the meds I was on let's just say I saw a lot of bugs and writing on the wall that noone else saw - but they got some enjoyment out of our conversations.

I used to run my own preschool - and I guess I miss the creative side of that line of work - but the risks of getting sick from them run too high so I've had to give that up - not to mention trying to keep up with them isn't quite at par these days. But I miss their enthusiasm and creativity and their way of looking at life so much more differently then we do once we get older. It is true that they will keep you young at heart and keep your mind young -- but the body doesn't necessarily agree.

I'm curious as to what kinds of plays you have written? Are you more humorous, satirical, dramatic? or maybe a strong mix considering your left and right brain!

I agree with you that Graeme should write a book -- but write it as yourself Graeme - not for what you think "others" might want you to write like --- you can always change or adjust it later if you want to publish it ---- but keep your original too as that one will be directly from your heart and that is what makes you special.

Cher

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Permalink Reply by jefferson helton on January 9, 2012 at 5:24

thanks. All of my plays are dark comedies. It doesn't matter what I have in mind when I start writing, I just sail into deep dark waters, but keep my sense of humor. Actually sounds a lot like real life now.

I went into "survival" mode after the dissection and have pretty much quit writing, but will get back into it. It has been difficult for me also to be enthusiastic about much, but it is getting better. I did write a song about my experiences. Some lines are, "When the ambulance comes, you might get pissed, when they shove baby aspirin down every orifice" and "you know your surgeon's education's complete, just pray he wasn't taught by an Aztec priest".

Anyway, I hope you return to your writing. You have nothing to lose by submitting them. I really do hope Graeme writes his book. He has a lot to say and the talent to say it well. It is good to have a creative outlet to try to make sense out of our experiences. The first play I every wrote was about how I dealt with my daughter's brain cancer. I let the American Civil War represent her cancer and had different soldiers represent the different stages of my grief. It actually won awards and was published, but more importantly, it was a tremendous release of a lot of pent-up emotions and would have been very cathartic and worth writing regardless of whether or not it went anywhere or not. jefferson

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Permalink Reply by Cheryl Kerber on January 9, 2012 at 16:05

Awesome is all I can say!

Maybe your next play should be on your facing your deamon of lack of enthusiasm -- it definetly is a constant struggle - like along with the surgeries we have, they have cut out "who we were" and now we have to redefine ourselves.

I do know this happens to alot of people, no matter what their situation whether divorce, loss of a loved one, a health challenge and so forth - the climbing out is only a part of the struggle (the actual rebuilding our bodies is in a sense the easy part even though it is often painful and difficult because there are set parameters to work within whether meds, physical therapy, or limiting certain physical activities, foods and such is doable for the most part)-- but it is the mental part - the taking the step to rebecome "you" whatever that might be at this point in time that is the demon.

The event always changes you and how you look at the world and other people and situations in general - and it is a daunting task.

I've realized that I can't define myself anymore as this or that - I have roles to play - like being a Mom and a wife and a dog lover and so forth - because it all changes in a moment and letting go is very difficult.

I haven't mastered it by all means - I'm still on a path and probably will always be.

I hope you can harness your demon and use it to restimulate your creative side - it's there - it's just hiding.

Cher

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Permalink Reply by Elaine Howlin on January 8, 2012 at 18:27

Hi Jefferson

I am 8 months post dissection and I went to see my surgeon a few weeks for a follow up and report on the CT and echo I had had in October. I too had an ascending and descending aortic dissection and had emergency surgery in May 2011.I was at work at the time it happened and as I am a nurse I was in the best place possible and a friend of mine who works in the same place insisted that I have a CT scan as she was aware that there is a history in my family of dissection and aneurism, I don't remember too much about it as I was told immediately by the Consultant that I had a dissection and as he knew that I understood the seriousness of my situation he told me to say goodbye to my family and I was then intubated and put into induced coma after which I was transferred to a cardio thoracic unit and operated on immediately. I have no recollection of my 3 days in ITU but I remember waking up on the 4th day and seeing my 3 sons at the end of the bed was an enormous shock to me as my eldest son lives in Canada and my youngest son lives in California and obviously I live in England. I spent a week in hospital and then went home but unfortunately I ended up going back for another week as my heart decided to race and jump about all over the place.

My initial surgery is almost identical to yours except I also required an aortic valve replacement.

I too suffer from bouts of depression and sometimes anger, rage and why me? The exhaustion is always there but I have learnt to live with it. I am retiring from nursing in April at the ripe old age of 57 as I think the job is just too stressful now and not at all what it used to be. I am back too work fultime at the moment and suffering from persistent back and chest ache as the doctor responsible for putting my rib cage back together is not someone I would hire to do any work in my house because to put it bluntly my rib cage doesn't fit anymore!!! My sternum is higher on one side.

At my recent check up, the doctor said that my descending dissection was obviously still there and the small dissection I had previously in my abdomen had grown from 3mm to 3.6mm however once I thought about it I realised that the comparison was with a CT I had had in April so the month prior to the dissection which went all the way down to the original abdominal dissection,if that makes sense! so it was bound to be bigger anyway.

The medication we all have to take is the biggest contributary factor to the feeling of exhaustion and in my case lightheadedness.I also have problems with my right eye which on occasions I lose complete vision or partial vision which is to be investigated at the eye hospital. My 2 brothers who suffered with the dissections also experienced this problem which eventually cleared up after a year or so. My brother Phillip is now 15 years post dissection as is still going strong,unfortunately my youngest brother Gary died in 2007 when the new graft they had put in for a second time became infected.

I hope I haven't sent you to sleep Jefferson but I just want you to know that as survivors we all feel the same way and get very frustrated with people who just say crass things which are not helpful.Just enjoy your life as normal and take each day as it comes.

Best wishes

Elaine

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Permalink Reply by Cynthia Lind on January 8, 2012 at 20:06

Elaine,

After my dissection in January 2011 my surgeon told me I was genetically predisposed to the dissection and anuerism and, if it was in my family, it would be siblings or offspring not cousins. Possibly this was so for you and your brothers. My son recently saw a specialist and was told there wasn't a way to test his pathology but

the key factor to avoiding a problem was 'blood pressure control'. Same as us survivors.

Your story about your eye sight captured my attention. I don't recall reading anything about eye sight in any other personal story but I too was having a problem with my eyesite. Sometimes very blurred, so times minimally blurred, in either eye but mostly my left and sometimes it seemed just fine. The blurring vision changed in degree and severity and in which eye or both and was getting worse. The reflection and glare from snow, sun and light could be blinding and lingered.

I went to Cleveland Clinic, the number one hospital for vascular and aortic conditions in America. Part of the testing done during my first visit was a series of four non-standard blood panel tests for inflammation of the vascular and artery system and it was discovered I had vasculitis (inflammation of the vascular system) as well as inflammation of the artery's in my head. I had also been having pains in the temple area.

I was immediately put on 60 mg of predisonne per day and told I was in danger of a stroke and/or blindness. The inflammation was the source for the problem I was having with my eyesite. The inflammation is also considered the 'trigger factor' for my dissection (along with blood pressure).

The testing and treatment for the inflamation began the last week in May. By mid-July the blood tests were normal and I was slowly weened off the predisonne by September. Blood tests in November showed a very low grade return in one of the 4 tests and my eyesite was starting to 'act up' again. This is the nature of the inflammation.

The inflammation is chronic and I'm having the four blood tests run monthly. The inflammation will be treated as soon as it reappears in the blood test and the intent is to get control immediately before reaching the critical state of last May (and when I had my dissection). The blood testing and response is now part of my ongoing preventive care.

For the eyesite I took bilberry (a natural supplement for a short while) and I have taken 6 mg. of lutein, another supplement, continuously since last May. It has made a difference. This was in addition to the predisonne which is not taken continuously but only in response to a flare up of the inflammation. At Cleveland Clinic the inflammation falls within the department of autoimmune disseases and rhuematology.

The eye problem was about 100% gone until the inflammation returned. The disturbance that returned with the inflammation was mild this time and seems to go hand-n-hand with the inflammation.

I like your advise to enjoy life and take each day as it comes. And I am pleased to find this site and forever grateful for every person's story and support. I am interested in starting a support group in my area but so far I haven't found any survivors. Without this site it is a lonely place to be.

Best Wishes and stay in touch. xoxoxo Cynthia

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Permalink Reply by Elaine Howlin on January 9, 2012 at 21:28

My family are slightly different in as much as 2 of my cousins on my mothers side died of the condition.Trevor died awaiting surgery for an aneurism and Sandra died of a stroke following surgery both at the age of 50.

We are still having genetic testing for gene mutation but everything so far has been negative. My eldest brother seem s to have escaped the condition altogether which is good.My concern is that I have 3 sons and 4 grandchildren and even though finding a gene mutation would not help me it may help them in the future.

Regards

Elaine