Aortic dissection & aortic aneurysm information support group

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

  We had moved into our beautiful five bedroom, three bath home on a golf course on March 29th, my husbands 56th birthday. I had turned sixty on March 19th and was due to fly to Washington and then to California in mid June to visit family. This was a busy spring and I was really frustrated to find myself being rushed to the emergency room. I didn't have time to be sick. I was convinced I would be told it was my old back injury acting up and I would be sent home with pain pills and told to take it easy for awhile.

  I was sent to get Xrays and then back to the ER area to wait for results. Nothing was moving quickly as this was Memorial Day week-end and it was now close to 11:00 p.m. shift change. Great! More prolonged waiting and endless people asking me the same questions over and over. My poor husband absolutely hates hospitals more than anything and I was feeling somewhat guilty for the cause of his being stuck in an ER so late at night. Finally, the ER doctor came in and informed us that I was going to need surgery. My hubby commented that he assumed it would be first thing in the morning. The doctor stated, "No, I mean right now, as soon as the surgical team arrives.We have calls out and are just waiting on the surgeon." One lone tear escaped and ran down my cheek at the news and realization that I obviously would not be making the trip to Washington to see my grandson graduate from high school. Then things began to get very hectic in the ER.

Neither my husband or I thought to ask any questions.I barely got time for a quick kiss from my husband, then was rushed to the operating room. I remember thinking how small the OR seemed and how bright it was and sliding off the gurney onto the ridiculously narrow operating table. It was now 1:00 a.m. June 1st, 2009.

  I came out of the fog two days later to the sound of a nurses voice telling me 'what a lucky lady' I was. At that moment I didn't feel so lucky. I felt panicky. My wrists were strapped to the bed rail and I had a tube stuck down my throat. Please! Somebody untie my hands and get this thing out of my mouth! Of course, no one could read my mind and I was only shouting in my head. Thankfully, they knocked me out again.

  At last the restraints were removed and a kind nurse realized I was breathing on my own and removed that awful tube from my throat. Finally free. Then siblings whom I hadn't seen for many years were coming into the CICU to my bedside. How strange, I thought. Why are they here. Nothing made sense. My younger sister asked me if I had 'seen the light'. What did that mean? Had I died and come back? I felt fine. What was going on? People were asking me questions I had no answers to. The most obvious one was 'what happened'. I didn't know. No one had told me anything and I wasn't aware that I had lost an entire day and two nights of my life from a medically induced coma.

  My sis, Bertie, had flown in from New England expecting to attend my funeral. My only brother, an ordained pastor, drove in from another state expecting to prepare a funeral sermon. My only son was notified by the Red Cross and had to make the difficult decision to remain in the field on maneuvers with the Marine Corps as he was in the early stages of pre deployment ops to Afghanistan. My oldest grandson was deployed with the Marine's to Afghanistan and the family decided it was best not to notify him of my situation. The youngest grandson was leaving for Marine Corps boot camp after his HS graduation. My oldest grandson's wife and infant son were in the process of relocating and couldn't come either. My youngest sister and my mother were not physically able to make the long drive from Houston, TX to Wichita, KS. I still did not understand all that was being shared with me about family not being present. Why in the world would they 'call in my Marines' (so to speak). What was all this fuss about anyway?

  My sister, Bertie, told me that she peaked at my medical chart and I had suffered an Ascending Aortic Dissection. I finally had a diagnosis and didn't have a clue what it meant. Strangely enough over the next few days I didn't ask a single person on the medical staff what had happened to me or what a dissection entailed. Honestly, it never crossed my mind. To this day, I cannot explain why I never thought to ask questions about my condition, how or why it happened or what the prognosis was. But I quickly learned that I was being referred to as the 'miracle lady of Wesley Hospital'. My critical care nursed asked me if I had noticed the two young ladies peak in on me earlier one day. I had not. She explained that they just had to come see the lady whom they had taken Xrays of in the ER who had the severe aortic dissection. They had heard through the hospital grapevine that I had survived. Hmmmm. Interesting, I thought. A young intern walked into my room one afternoon and asked if he could visit me. Yes, of course I said. He stated that he had never seen a survivor of an aortic dissection. He wanted to know if I knew who the comedic actor John Ritter was. I said yes. He said, "well, you have what killed him". He is the doctor who told me that the ER doctor had said my dissection was the worst he had seen in seventeen years of practicing medicine. That is why you are being called the 'miracle lady'. So strange I thought. I feel fine. On another day a very good looking young man stood in the doorway to my room and asked, "do you remember me"? No, I said. (I would certainly remember a good looking guy like you, I thought.) He told me he had been the admitting RN in the emergency room the night I had been brought in by ambulance. It was time for his shift to end, but he had remained at the hospital and monitored my case through the entire night. He explained that so few people even live to make it to the hospital that the medical staff rarely have the first hand opportunity to view cases like mine. He just wanted to come by and meet 'the miracle lady'. Wow! I'm beginning to hear a pattern in these conversations.

  Having requested a private room and non being available, I was placed in a room with a woman in her fifties who had been diagnosed with lung cancer. There was nothing but a curtain between our beds when a group of medical personnel came to deliver the devastating news to her that she was terminal and her time was short. Let the head games begin. Lord, why her and not me? If a dissection is so life threatening, why didn't I die? Some told me I lived because God still has a job for me to do here on earth. What is that job, Lord? I don't know. I don't understand. Will I live long enough to carry out God's will for my life? Will I ever understand what this is all about? How can I comfort the lady in the room with me. My last night as an inpatient a private room had become available and as I prepared to move to that room she told me she was glad my prognosis wasn't like hers. I wanted to bawl. My father had passed from lung cancer at the young age of 57.

  Home at last and it was wonderful to be in my own bed again. My incredible husband was the best caregiver a woman could ask for. I had no idea I would be so weak and need his help with even mundane activities of daily living. I couldn't even make a pot of coffee for myself. I was just feeling settled in at home when the hospital called and ordered me back for admittance due to renal failure. How could this be happening! Another four days in that uncomfortable hospital bed. Please God, let this nightmare be over soon. I had to have CAT Scans and MRIs before I could go back home. I am very claustrophobic and had a terse conversation with a nurse who refused to remove me from the MRI machine when I had another panic attack. Whatever happened to patient's rights, I wondered.

  It has now been three years and three months since I became the 'miracle lady'. There have been several more trips to the emergency room since that fateful night in 2009. Many more Xrays, Cat Scans and MRIs. Many sleepless nights when the nightmares and my loud screaming wake me and my husband. I applied for and was approved for medical disability due to the depression and the fear of dieing. Although I do not dwell on the thought, it remains in the recesses of my mind, especially late at night. I long for the days when I could do whatever I wanted without tiring or climb the stairs in my home without stopping to rest and catch my breath. I miss cleaning my house and cooking for my my husband and friends. I really want to do the grocery shopping instead of relying on my husband to do it.

I am only 63 years of age and retired now. Life should be good. But sometimes just being alive doesn't always equate to being good. I had so many dreams about this time in my life. So many plans about travel and being with my great grandson. Yes, I realize that God granted me a healing and I truly am a miracle woman. For that I am grateful beyond words. I now realize that my normal is a 'new' normal and different than before. I rarely get up and start my day before noon. If I get up earlier, I must lie down and rest in the afternoon. I can't play golf with my husband, climb long flights of stairs at stadiums and sit for extended periods of time in small stadium seats. I can't carry bags of groceries, bend, lift, stoop or strain. My dissection was literally from stem to stern as they say. During the operation my pulse was lost. There was unexplained blood in my silver white hair. And one specialist told me that 'cardio exercise would be counter productive' for me. Oh well, I hate exercise anyway. I live one day at a time, look for ways to pay forward my blessings and thank God he isn't through with me yet.

 

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Comment by Deborah Levering on December 29, 2013 at 3:52

Hi Judy Roth,

As much as it bothers me to have been told not to exercise and have the weight gain, it is comforting to know that someone else has this same medical advice. Since my dissection ran from the heart to the groin and was so excessive I just know that I cannot ignore the Dr.'s advice. Sometimes I push the lifting limits and always pay the price. My family has begun suggesting a lot of forms of exercise that they believe I should do to loose weight and increase stamina. They just truly don't understand the risks for me. I am so happy that you responded to my post on here. Please let me know what you find out in Cleveland. I will be eager to hear. Warm Wishes, Deborah

Comment by Judy Johnson Roth on December 28, 2013 at 9:23

Hi Deborah -

Well, you and I are in the same "no exercise" 35 lbs. overweight boat.  I'm headed to Cleveland Clinic in a few weeks to try and get some answers... I totally understand where you're coming from.  Since I already have another thoracic aortic aneurysm, I find I'm afraid to do much of anything.  SO frustrating.  I just hope to get some answers in Cleveland.  You'll be in my thoughts and I wish you the best.

xo,

Judy

Comment by Graeme on September 28, 2012 at 12:57

Hi Deborah

I have been away travelling the last few days and stupidly busy with my day job(!) and only just caught up with your beautifully written blog... reading it quietly last night brought many feelings rushing back to me as well...9 years on and going for 10 next year I have tried very very hard (too hard!) to live a 'normal' (??) life but one of what  should be the most positive parts of my life is actually the loneliest.. as everyone now ( 9 years after my AD)  has 'forgotten' about what happened to me and now treat me 'normally' as to nothing being wrong...(Im alive - so i'm fixed huh ? ) that goes right through to carrying anything heavy, physical labour, lots of driving, keeping up a busy lifestyle and really busy in my self employed consultancy..etc etc.. and boy do I get REALLY tired now by early afternoon..! So your blog did bring me back to earth - to stop trying to live like everone else ..so its been a wake up call to me to slow down and really APPRECIATE the extra years that I have had/been given! Keep up the writing.. its great to see so much sharing with all of us!

 

cheers

 

Graeme

Comment by Richard Deal on September 25, 2012 at 10:27

Hi Deborah,

I feel a little sorry for your medical team, as I think they played the most important part in your survival, not some "God" - but I can fully relate to your feelings.

I wish that I hadn't been resuscitated/repaired back in 2008, if only because I am not doing anything that really justifies my "second chance". I know it sounds morbid and suicidal, but I am not a morbid, suicidal person - I am lazy however, and not being resuscitated would have been the easiest course for my life to have taken.

I take things one day at a time, however I am still very active and still able to do most things I could before the dissection. The one thing I don't do now is vacuum, but only because I got myself a robot to do it ;)

You have people in your life and an extended family - so despite the fact you haven't quite figured out what you should be doing, you are making a difference to other people and more than likely in a very positive way. Keep up the good work on that front, and if you want to reclaim a little independence try very light cardio-vascular exercise. There is no reason why you shouldn't be able to shop or do things around the house - even golf is a possiblity with the right supports.

Take care, keep the chin up!

r

Comment by Nicola McMeekin on September 25, 2012 at 8:54

Hi Deborah,

I can sympathise and understand your feelings. I had my AD last August and although fine physically on the outside, mentally things are sometimes tough. Like Kimberlee it wasn't until I found this site that I felt like anyone understood. I too had what felt like a procession of medics visiting me in hospital, even my mum introduced me as 'the miracle lady' to her neighbour- which was really tough. I am a survivor and very lucky to be here.
I have 2 teenage sons and sometimes rely on them and my husband for everyday tasks - hoovering, bin emptying etc. I found it really hard at first to accept this as I am fiercly independant but am now used to it and they really don't mind - maybe it'll make my sons better people in the long run, who knows?
I feel that I know enough about ADs now and any more information can terrify me, at some point in the future I will need another operation on my aortic valve, I can't even think about that!
Take care, thinking of you,
Nicola

Comment by Kimberlee Jones on September 23, 2012 at 4:19

I think all of us can relate to the "you're so lucky", "miracle" etc.  Yes we are lucky to survive, but it's not the way I wanted my 15min of fame...lol  I actually don't like the word miracle, I much prefer the word survivor. It took me almost 2yrs to get details beyond aortic dissection. I didn't ask questions are do any research, I just didn't want to know. The way the doctors and nurses acted. Having the EMT's tell me they heard of me when they picked me up(about 4weeks after initial surgery) for my 2nd return visit to hospital, I knew it would scare me. When I did finally start asking questions and doing research, I was right, I was scared more than I had been since the surgery. Sometimes ignorance can be bliss. It wasn't until I found this site and others who understood that I started to feel any better mentally. I still have my fears, some days worse than others, some  months worse than others. I just try to keep in mind that I survived and no life is not the same but at least I'm here. My dissection was over 6yrs ago, I know that hearing from others that had their surgery prior to mine, gives me hope for the future. Take care and if I can be of any help let me know.

*hugs*

Kimberlee

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