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.
Views: 365
Replies to This Discussion
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Permalink Reply by Graeme on -
Jefferson
firstly - happy new year (!) - and believe it or not - it will be! Depression - or the black dog as i call it is a HUGE part of the recovery process - most of us have gone through it - but it will pass -that I promise! And - like us all - you are a survivor. That is the biggest blessing - drugs, depression - whatever - Life is for living and once you are through this you will bounce right back!
cheers
Graeme
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Permalink Reply by jefferson helton on -
Happiest of new years to you and yours also. Thanks again for starting the support group. I have felt isolated since my dissection and it is very comforting to know I am not alone. With deepest appreciation, jefferson
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Permalink Reply by Cheryl Kerber on -
Welcome Jefferson - glad to hear you are doing quite well. Yes, periods of depression and exhaustion are not unusual. They get better, but I don't know if they ever go completely away considering what you have gone through. You will just deal with the incidences differently - and actually the bouts of exhaustion kind of force us to slow down just a bit and maybe because of what we have, that's our sign to take it easy on our bodies otherwise who knows what would happen.
It could be the meds too, as they slow us down and I think it makes our bodies work harder if that makes any sense which only contributes to the exhaustion.
At the end of 12/2004, they replaced my descending thoracic aorta for a possible leak. I suffered a dissection a year prior that caused my abdominal aortic aneurysm. And this past July, after they found my aneurysm had grown to surgery size (good reason to follow through with the recommended catscans) I had the rest of my abdominal aorta replaced from the original graft, through my kidneys and just before my legs. I couldn't just do the through the groin graft as my dissection included my kidneys.
Since my first surgery which was an emergency - I felt like I was walking around with a ticking time bomb. The enormity of what we go through and the reality of how quickly life can change, definitely has a huge impact on our mental psychy. Yes, we appreciate life more and are thankful in so many ways, but our humanness also reminds us how out of control we are in regards to actually living - except exercising, getting enough rest, eatting healthy and so on.
Going into my 2nd surgery this past July, making alot of decisions before hand and doing alot of research and planning, helped me go into it in a better frame of mind but the fear and concerns were no different than when I had the emergency surgery. There is something extremely life changing knowing you are saying good-bye to those you love (I was drugged up so much my first surgery, they barely got my 4 kids there aged 4 - 12 for me to remember saying goodbye and that I loved them) -- I just knew I wanted to live. And then with the 2nd surgery, even though I knew what I was facing, I had to make the choice as to when the surgery would take place. Knowing that my decision to move forward with the surgery was my own - that I could have walked around with my dissected aneurysm and just play my chances of the when -( not the if as the risk had increased) - that I alone, could have made the decision for me to die at that time.
I was blessed to survive - and I realize that if I had died, I wouldn't have known anyway - but the week before my surgery just knowing that I might not ever see my kids again - was excrutiating - more so than my fear of the post surgery pain - which I was all to aware of and hadn't forgotten from the first surgery.
No matter who we are - this kind of event leaves an imprint -- and once in a while it resurfaces - whether close to the anniversary day of our event, or bdays, or holidays, or seeing pictures of memories we have had with our loved ones, or just seeing something beautiful and feeling such an appreciation for still being alive ---- can bring on the emotions.
You will move through these events quicker, but they happen - and sometimes - they make us just that much more thankful.
Also, a physical therapist I had been seeing post surgery had mentioned how these events often times are our bodies way of releasing - whether from pain, inflammation, sadness, tiredness, memories etc., - we have to release somehow and it just gets expressed that way.
Thanks for sharing your experience. It helps me appreciate my life and accept what I've been through - not that it makes life easier - but it does help to know that there are others out there that just understand.
Cher
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Permalink Reply by jefferson helton on
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Thank you for your kind words, wisdom, and willingness to share your story and feelings. You have really helped me realize that my feelings (both good and bad) are shared by others. I will try to be more accepting of my feelings and use them as a learning tool and turn whatever happens next over to a higher authority. My thoughts and prayers are with you, your family, and all who have gone through sudden and traumatic procedures. Thanks again, jefferson
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Permalink Reply by Cynthia Lind on
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Jefferson, are you still there? I had my dissection in January 2011 and much like yours, I felt a sudden flash through my neck and shoulders. I learned later it was the moment my aorta dissected. I was at home. I stepped into the powder room and looked in the mirror and to my shock, my skin was transparent and I could see what seemed to me to be a massive network of veins, arteries, blood vessels (what ever they are called close just below the surface). I experienced terror. I called EMS and while waiting for them to arrive I too experienced my right leg going numb. I thought maybe it was a stroke and I remember thinking 'will I be a drooler'? I was okay with being a drooler. The instinct was to survive regardless.
I was in surgery for 5 1/2 hours. I was on the bypass machine and my body temperature was lowered to a hypo thermic state. I have a 5" dacron graft where a section of aorta was removed (at the anuerism) which is between my heart and arch. My aortic valve was ripped out of its position when the dissection occurred and dropped into my heart. It had to be reset. I came to almost two days later with no memory of what had happened and no curiousity as to their presence of my daughter (from Plano, TX), my son (from Boston) and my husband. In 10 days it will be a year. I too had no pre existiing condition, wasn't on medications and in fact lived a very organic and natural lifestyle. The incident appeared to be completely 'out of the blue' but I know now that I had elevated blood pressure, the pathology of the tissue from my aorta is 'giant cell pathology' which means I was genetically predisposed (though there is nothing in our family that suggests others have gone before me that we are aware of). I also was diagnosed at Cleveland Clinic several months later (my surgery took place at Willima Beaumont HOspital in Royal Oak, Michigan) with vasculistis and artieritis (inflammation of the vascular system and the arteries in my head). I was in immediate danager of a stoke. I'm okay, the inflammation is a chronic condition that will always be monitored) but it was important for me to recognize that there was a trigger or I too felt like this could happen again anytime if there wasn't a trigger.
I continue to work with my natural practioneer and I believe his work has kept me together. I continue to get checked for anuerisms and feel very good but tire easily and stay close to trama centers. We put our cottage for sale for that very reason (we're in the woods and isolated with out a trama centeranywhere close by). I travel to Plano and Boston, both with excellent hospitals and I carry a laminated card regarding my health at all times. My husband, daughter and son also have a copy of the laminated history of my health. What troubles me most is that I haven't been able to find any survivors in my area. I'm real committed to starting a support group. And I shall work at being able to move around on this site with more efficiency since I end up most somewhere by accident. God bless you and your family. Cynthia H. Lind, Bingham Farms, Michigan.
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Permalink Reply by jefferson helton on
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Our surgeries were almost identical, lowering the body temperature, being put on the heart-lung machine, a 5inch dacron graft, and about a five hour surgery. I did not have the valve problem. When I could not move my leg for a little while, I too thought of a stroke, but it was only my leg that didn't move, and I figured my chest would not hurt with a stroke. However, it was mentioning my leg to the ER cardiologist that made him run the CT scan and this probably saved my life by getting an early diagnosis. My biggest relief was that I was not discharged because I probably would have died later in my daughter's arms. I had just had a physical about a month before the dissection and everything was fine. My surgeon told me that this was entirely genetic, but was probably unique to me and not a condition I inherited or would pass on. There was no family history.
I am now a year and 9months out. I do feel better and stronger. Although the ascending dissection was repaired, I still have the descending dissection. My surgeon said that he would rather take a "wait and see" approach and did not feel I would have problems as long as my blood pressure was kept low and I did not lift anything over 40-50 pounds. I do have periodic CT scans to check for anuerisms, but anuerisms generally grow slowly and can be fixed with surgery.
I felt fine before the dissection. It was the worst pain I've ever felt in my life when it did dissect, but the pain quickly subsided. I still find myself worrying every time I feel any sort of slight pain or twinges around my scar tissue and I definitely am concerned about another dissection because it did come from nowhere. My fears have diminished greatly with time, but they're still there and so is feeling extremely tired out of nowhere.
I too, have been disturbed by inability to find many survivors. Every doctor I've seen seem shocked that I am alive and that is of little comfort. I just thank God every day I'm alive and count my blessings.
Best of luck on the support group. It was very nice to find this site. I live about 60 miles from Plano in a small college town called Commerce. God bless you and your family as well.
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Permalink Reply by Cheryl Kerber on
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Jefferson,
like you I was given weight lifting restrictions - but mine was for way less - maybe because I'm a woman, but I don't know for sure. I also was told not to train for marathons as the stress is too hard on the vascular system and ours are weakened. I was also told no shoveling (I'm in Minnesota - usually no lack of that around here except this year - quite odd and the trees have to be just starving for water since we've been extremely dry through summer and now winter so far) and no push mowing (I can do a ride on lawn mower but since they removed 2 ribs in my first surgery - it's kind of painful with all the jerking - so I kinda lean away from that kind of stuff).
As the rest of you - there aren't any survivors around me which is kind of surprising since I'm close to Minneapolis and with several major hospitals in my area, you'd think there would be some. That's why finding this site this past year was such a God send. 6 years of emotionally dealing with this can feel very lonely. And I know from my friends who have dealt with cancer have really appreciated having their support groups. Having you all here - whether by website or not - has helped me tremendously.
After my 2nd surgery in July, they ran alot of tests on my aortic tissue - but nothing was conclusive. Just that my middle layer was weak. I haven't gone the genetic testing route yet as I have mixed feelings on what I would feel or do finding out my kids (11,15,18,20) have a risk. I think monitoring their health overall is necessary anyway - and putting them through catscans (which we run risks with our kidneys with the dyes), makes me hesitate since nothing has shown up conclusively with all the tests they ran directly on my aortic tissue.
I too was in good health - non smoker - non drinker and only 38 at the time I had the dissection. There just wasn't any sign and it hit out of nowhere. I can say that the fear wanes a little with each year - but it doesn't completely go away. With any new pain or oddness I feel - I too question --- and have been countless times to the ER over the last 6 years and they find nothing. Which of course is great - but it doesn't explain the pain. I'm sure scar tissue plays a roll. And I swear ever since the dissection, my body feels everything! Even when I see a dead animal on the road, my body just will hurt or if I even slightly knock on my door. I've become extremely hyper sensitive - and I don't know if that is from everything they sever - all the nerves, the muscles and so forth, or if it's from the heart meds I have to be on now (wasn't on anything prior as I didn't have high blood pressure), or from them having to control our spinal chord fluid during the surgeries.
My first surgery was almost 11 hours. The second was about 9 and they had to replace 9 liters of blood and then pump me full of platelets - so I can see what toll these events take on our physical bodies.
As for your feeling tired out of nowhere -- I know the meds can do that too. I'm on Lisinopril and Metoprolol ER. And even taking my meds a little off timing wise can make me extremely tired at some point during the day. I also find that lunchtime appears to be my most challenging time of the day. And now with this 2nd surgery, I'm on a blood thinner too and well, that just has added more side effects. Kind of like our bodies don't want that stuff in our systems, but at the same time, I know we probably should be as preventative.
You are blessed, as am I, to be still alive. I have struggled with that alot. The pressure of feeling like (and being told by countless medical staff) "you must really meant to be here" like I'm supposed to do something big since I survived and others don't. I started to get concerned that I was missing why I was supposed to still be here. LIke there was something I was supposed to do. It was a huge burden as I don't know what I'm supposed to offer or accomplish after surviving. I know being a mom, a wife, and so forth is important - but the comments made me feel like I was missing something and that I was failing the purpose for my surviving.
I have since worked through that for the most part. Even if just raising my kids is the reason why I'm still here is fine by me. I still pursue my interests and keep taking that next step forward, but the memories haven't left, but the pains remind me of what I have been through and what I have survived and then I use that as a reminder of how blessed I am - and that has helped instead of allowing it to completely drag me down.
It will get better - hold on to that!
All my best from Minnetonka, Minnesota
Cher
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Permalink Reply by jefferson helton on
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thanks for sharing your stories and feelings. You really went through incredible ordeals over a long period of time and I am so happy you are doing so well after going through so much.
I do get tired of hearing statements like, "God must have a great plan for you." and "God's not through with you yet." They all mean well, but...
Once I tried to find survivors, I kept hearing stories about other people's family members who died from aortic dissections and survival guilt set in as well.
My daughter (the one who disobeyed me and called 911, which saved my life) had brain cancer when she was 9 months old in her brain stem and spinal cord. She was not expected to live to be one, but after 3 neurosurgeries and 3 years of chemo, her tumor vanished just before Christmas. She is now 19. We live in a small town and her whole life she was and still is known as the "miracle child" and was told that God must have great plans for her as well. I talked to her about my feelings and she said that she had been putting up with the same "burden" for 16 years. Her advice was to just let go of it and be grateful for every day. That everyone has a special purpose and it will drive you nuts to think about it and besides, we may never understand what that plan or purpose is.
It sounds like you have moved on to that point. I will try to as well.
thanks again, jefferson
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Permalink Reply by Cynthia Lind on
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My gosh your story so mirrors mine. I will stay in touch and you too. I work with a natural practioner (a brilliant man who totally understands the whole body) and if I didn't already mention it, I do believe he is the one who is keeping me strong. Meanwhile, need to up the stats on survivors. Time to turn the tide!
God bless you and your family. And you can use my email address any time since I don't go on the site very often and I'm not real adapt at moving around. email address is cynlin@comcast.net
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Permalink Reply by Harry on
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Hi Jefferson,
Like Cheryl I have gone through a second operation last August to have a Dacron tube fitted. My first aneurysm was in 2006 & had started to expanded. I also have ascending/descending tears, my left arm has a lower BP than my right & my kidney is now fed through the false lumen.
My surgeon said I should have another 10 years plus without further surgery which should take me to about 60.
I think virtually all of us have been very lucky & our condition recognised quickly. We all go though ups & downs & we all face similar challenges.
Our meds keep us alive with or without side effects, keeping the BP down seems to be the main priority.
I pretty much go through some of the same symptoms as you. Some of it I put down to the meds & some down to my emotions & what’s going on in my life. Going back to a routine seems to help & I am looking forward to going back to work, all be it with less stress.
Your not alone in how you feel, reading everyone’s stories & comments makes you realise how all similar we are around the world!
Rgds
Harry
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Permalink Reply by Cynthia Lind on
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I originally found this site last spring and had a few brief exchange exchanges but my surgery was in January 2011 and it was still so new and so raw that the information I gathered from reading on the site frightened me. I'm back and this time I feel my relationship with everyone and it gives me heartfelt appreciation. In 9 days it will be one year since my dissection and anuerism, shredding, lungs filled with fluid, dislodged aortic value. I'm now on a quest to find survivors in the general area where I live (Bingham Farms, Michigan). It's just so darn hard to face the possibly that no one else in the area has made it. I'm starting to send emails to local newspapers etc. on a quest to start a support group in my community. I feel this sense of sorrow for those who didn't make it. I'm so glad you are all here and what ever support I can be for you I'm here.
God bless, Cynthia Lind
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Permalink Reply by jefferson helton on
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thanks for your response. I do feel better knowing that we all seem to be experiencing the same types of feelings. It is extremely hard to try to explain what we are going through to someone who has not experienced it. It seems to be an odd way of uniting with others around the world, but is certainly a strong bond that goes beyond all boundaries and barriers. Thanks again,
jefferson
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