Aortic Aneurysm: A Story To Brighten Your Day

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A Story To Brighten Your Day

7 March 2003

I have a story to brighten your day. All positive comments for you to mull over. My family, my mother and brother underwent emergency surgery for aortic dissection within the past 10 years. They are both alive and doing fairly well. We have found out that this is a hereditary condition and the rest of the immediate family is checked yearly for aortic root diameter and aneurisms. I always knew that I would be the next one to have the problem, instinct I guess.

In January 2003 I met with my brother's cardiothoracic surgeon at Yale University to discuss my latest echo/MRI results. My aortic root according to echo had grown in the past 1 1/2 years from 3.2 cm to 4 cm, although the MRI was completely normal with an aortic root measurement of 3.0 cm. The cardiothoracic surgeon who has performed over 200 aortic aneurism repairs recommended surgery immediately within the next two weeks. He saw many abnormalities on the echo and was very "worried" about the instability of my aneurism, this too combined with my brothers dissection at 3.6 cm and my mothers dissection prompted the urgency of this decision. I had two weeks to prepare my life for this huge surgery, seeking a second opinion at Brigham and Women's hospital in Boston in the interim. The conclusion was the same as Yale, urgent surgery.

I know deep in my heart that my family will need to go through this again someone else will be afflicted. My children stand a 50% chance of getting this terrible genetic disorder and my son is exactly like me, like a clone. My sisters have a 50% chance of getting this too. My goal was NOT to have my family go through what we went through with my mother and brother, all tears, crying and sorrow. I wanted to keep a positive attitude through the entire procedure allowing them to see that I would be fine. Yes on the inside I was terrified, but if it were not for the support of my husband who yes walked around in a daze for two weeks, I would not have made it.

I did not want anyone to see the fright, just in case my children or siblings needed to go through this in the future. My attitude was, well it could be inoperable cancer with a poor prognoses, but it is not. I willed myself to believe that the odds were with me with a 97% survival rate. I don't know how I did it but the positive attitude and the only concern was showing my family that if they ever needed this surgery they will recover as quick as I am now.

Now for the bragging part-The surgery lasted 6 hours I had a St. Jude's valve #21 with a composite graft (they replaced my proximal aorta where they found a tear) I was extubated (respirator removed) two hours after the surgery and remember every second thereafter. I wanted to be alert and talking when my family saw me as I did not want to frighten them or have them feel any worry. When they came in to see me the first thing I did was give them the thumbs up sign.

I was at Yale for 7 days as they had a bit of difficulty getting my Coumadin levels within an appropriate range. To say there was no pain would be a lie, but once again I did not want my family to worry.

What kept me going was my husband who never ever left the hospital for the 7 days, sleeping in my hospital recliner (I had a private room) and tending to my every need. I arrived home on January 30, 2003 and began walking immediately as my surgeon recommended walking a mile a day in small intervals. Initially I could barely make it down to the next house on my street, as I was breathless. (Prior to this procedure I was walking 3 miles every day, rain, snow sleet humidity...)

Now I will really toot my own horn. Today six weeks later I am walking outside one full mile and we live on a big hill. My goal is to make it 2 miles by the eighth week.

I concentrate only on the positive of this. Thank God that this God of a doctor diagnosed quickly the urgency of this problem. He as well as everyone else was shocked to find a tear in the aorta during surgery. I don't like to read horror stories about others as this makes me very nervous.

Yes, I am still stiff especially in the mornings, and because I am so thin at 115 lbs they told me that I would have more trapezious and rib pain. Yes I do have that but nothing that a Tylenol won't help. I hate pain pills and did not take anything when I came home nor in the hospital except Torador intravenously.

My prognosis is excellent, living a normal lifestyle, of course no heavy lifting or "stupid" things like parasailing, horseback riding... I have been positive after the initial shock of going through this awful and serious procedure set in and that is what kept me strong. MY family is involved in yet again another genetic study as this is quite unusual.

If anyone wants to ask me questions please email me. I do not however want to hear about the negatives that may have happened to you. I am mentally not strong enough to bear this. If you need encouragement just write me.

More bragging, yesterday at 5 1/2 weeks post op, I made an entire meal for 15 people, cleaned my entire house washed 3 loads of clothes and walked a mile. Yes I paid a bit for it last night as my ribs were killing me, but I am alive and feel great.

Christie, age 43.

Update: 12 Sep 2003

I am still smiling - it has been seven 1/2 months since my aortic valve replacement surgery and composite graft to correct an aortic tear. I am not by nature a bragger but must let those of you out there who are "terrified" that life does go on, a bit better.

I am now walking my 3 miles a day, have more energy than I ever had (I am a type A and never ever sit still, now it is even worse). Sometimes I think I need to do so much take up every single second of my time with doing something, baking, cooking, having dinner parties, ironing, doing closets, vacuuming, dusting everything... The need to keep busy is probably due to lessening the need to relive the surgery.

I am essentially pain free, I know how difficult it is for you "newbies" to sleep at night, roll over on your side... but trust me, it gets better every single day. You will be at the 7 month juncture and not even think of the ordeal you went through.

Do I have days that my body makes me remember the trauma - certainly but only if I do something "stupid" like lifting those over stuffed boxes from Costco - you know all the family sized items. Sneezing still hurts slightly at times - I say so what. Other than that my mind will not allow itself to dwell on our misfortune.

I continue to thank God that I am alive and mended and also back together again only this time better-my tear in my aorta is fixed. I do take quite a bit more time now to look at the birds in the feeder, watch the koi fish in our pond, and just observe more. I feel wonderful - so for those of you who think you will never feel good again, YOU WILL. Just give your body the little vacation it needs, then walk as much as the doctor will allow you to do, keep the weight down, cut way back on the alcohol, and literally "take time to smell the roses". They smell soooo good now.

Update: 3 June 2005

It is now 2½ years since my aortic aneurysm repair. For those out there, there is such a magnificent light at the end of the tunnel. The physical aspect of my life is fantastic. I just want to urge those that may feel sluggish, fatigued... to have your MD perform a simple CBC with differential. This is a simple blood test. Have him check your hemoglobin, hemacrit and most importantly your ferratin and transferratin transferation rate.

I was experiencing all of this with a pretty drastic weight loss, as I only weigh 107 lbs. I was found to be severely anemic, and my MDs labeled it the "waring blender syndrome" which basically means some of my red blood cells are being destroyed when they come into contact with the St. Jude's Valve. It sounds horrible, but with the iron supplements and the Venifer Infusions (this is just IVs once a week for 4 weeks to boost your iron levels) I am feeling better than I ever did in my life. I had my last IV today and feel so good, always smiling and walking.

I am aware of the possibility of a future aneurysm, but try as hard as possible to stay on a healthy diet, walk, work out and not lift anything at all heavy. Should it happen again, I will hopefully go into this as positive as before. I am not one to worry incessantly about this possibility as I know the only control I have is my yearly cardio appointment and the above exercise regime

I have recently met another person who has had the identical procedure although a bit more involved as he developed a compartment syndrome, and we can relate to our fears, really just let down a bit. Something I can do with no one as I do not like people worrying about me. He has the uncanny ability to keep me well grounded which in turn reduces the level of stress. There definitely is a connection of some sort between aneurysm survivors.

I am in the process of forming a support group in our area of Connecticut. This is just a little update to let you know life does indeed return to normal, probably better.

Please email if I can be of any help to you.

Update: 29 May 2007

I have been corresponding with so many other survivors through this site and many have asked me to update my post, so here it is.

It has been 4½ years since my surgery. I am fortunate enough to enjoy a healthy, life. I still walk/run religiously 3 miles a day, eat healthy, and thank God daily, for allowing me to do it all over again. I just had my 4 year follow up CT scan and it was excellent.

The only kink in the road is an unusual finding last year of small fiber strands picked up on my routine echo. The small fiber strands are likened to small blood clots. Initlally I was having echo's performed weekly and things did not worsen. This was worked up with two TEE's (Tran esophageal echo's ) which found the same fiber strands as the echo. My cardiologist is a bit perplexed as he states the new diagnostic tools are very sensitive and picking up abnormalities that older machines would never have found. Nevertheless I am on the coumadin and an aspirin daily, and will have a repeat echo in one year.

My brother as you remember had his initial dissection 12 years ago and last year another aneurysm was found at the ascending aorta. This was last April 2006 and he had a St. Jude's valve and aortic graft performed and lives a healthy life.

My Mom who had an aortic dissection 15 years ago, also last year had a very large aneurysm in her abdomen and that was repaired last June.

As for me, I will be able to enjoy seeing my son age 23 get married in July, and watch my daughter graduate from college next year. I still only think positive thoughts and refrain from asking questions like why me? I know that I am so lucky just to be here and enjoying every single second of living.

For those of you who have just had surgery or facing surgery, the road to recovery is difficult the first 6 weeks, but think positive and be thankful that you too were blessed enough to be reading my update.

Discussion, comments, or questions: Christie

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