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Ben and family
Benjamin Smith- born February 02, 1973 in Ft. Jackson, South Carolina. Raised in a small town in Ohio. Ben is currently working on his BS in Environmental, Safety, and Occupational Health. Currently working for a small environmental firm. Married to wonderful wife on October 29, 1989. First child born April 18,1990. Second child born January 22, 1998. Ben enjoys time spent with family and friends and all outdoor activities.
10 July 2000
Like some of you, I have know about a bicuspid aortic valve since I was 18 months old. I went through annual check-ups to monitor the condition of the valve and the leak all of my childhood. I can remember, very young, hearing the doctors telling my mom that I would never be very big or do anything very physical. They also talked of surgery when I was 10 years old, then it was 15, then it was 20, then it was who knows. By this time, 15 years old or so, I had grown to be a very large person, 6' 3" or so. Basically everything those doctors ever said seemed to be a bunch of bull. So I developed an attitude of "there will never be anything to worry about".
I was married, at sixteen, to a wonderfully young woman, October 1989. We had a beautiful son just a few months later and I went on with my life. Only having one more evaluation of my heart in 1990. (And a great daughter in January 1998) I went on to get into a good occupation and to become very interested in bodybuilding. I am now 6'5" tall and 245 lbs at 8% body fat the picture of health. I am extremely active with my children and my working out never noticing any symptoms outside of the normal for me. Or were those normal feelings, for me, something inside that's not right?
In March of this year, 2000, my occupational physician, who has been on my case for 7 years to go in and have another evaluation done, and a friend of mine talked me into going back to see a cardiologist after 10 years of not ever thinking about my heart or any problems associated. I made an appointment with my family doctor who referred me to a local cardiologist who did the normal echocardiogram. Upon reviewing my echo the doctor order a few more tests, stress echo and MRI of my aortic arch and heart. The next thing I know I have been sent to The Cleveland Clinic Foundation (CCF) by my local cardiologist.
On June 27, 2000 I had my first appointment at CCF with my cardiologist there. After going over my tests that were done here locally and doing a couple of their own, I found out that they were recommending surgery to repair, or replace, my aortic valve. As well as to repair my aortic aneurysm (5.3cm) that I never knew existed. I spoke with my doctor on the phone on July 7th and he told me that the surgery would be done by September at the latest, although he believes to get it done within the next month.
Today, July 10th, I am waiting to hear when the appointment for the catherization they are planning on doing will be, as well as meeting the cardiothoracic surgeon. I am also expecting to hear from the doctor on the actual date of the surgery itself.
Is it scary, yes. Although I do not feel as if I can show my concerns at home. My wife and my oldest son, 10, will begin to worry too much if they see that I am scared. I am continuing to be as positive as possible, and have began to go back to church. I am working on renewing my faith in God, but this is hard to understand. I will continue to update you all as this progresses to each level.
God Bless and good luck to you all.
Update 10 Aug 2000
I am Ben Smith's mother, Evelyn Smith. Ben is at Cleveland Clinic and had surgery on Tuesday, Aug 8 at 8:00 a.m. The surgical consult was on Monday. At that time Benjamin decided to have the Ross Procedure done. This procedure has not been in favor here at Cleveland Clinic for a while. Because of the skilled hands of Dr. Petterrsen a cardio-thoracic surgeon from Denmark, all is going perfectly. Dr. Smedira, who was originally scheduled to perform Ben's surgery, had never observed the procedure; therefore, he scrubbed during surgery.
Ben's aortic valve was removed and his pulmonic valve was moved to the aortic position. Sufficient pulmonary vessel was taken to repair the aortic aneurysm. The homograph that was used to replace the pulmonic valve had sufficient vessel to replace the pulmonary vessel that was used to repair the aorta. Therefore, Ben has no mechanical valves or Dacron. He has all human tissue. (I will be changing my drivers' license to become a tissue donor.)
Less than 24 hours after surgery, Ben was eating spaghetti for lunch. All of the tubes have been removed. A temporary pacemaker is still in place, but should be out tomorrow. He is sitting up in his chair - not in bed. He went for his first three minute walk last night about 9:15 pm. This morning he went for a much longer walk and is probably in a treadmill session right now.
Ben's children and brothers came up to visit him yesterday. He will be going home soon, Saturday or Sunday. He has already been on the telephone with his workplace helping them work through some issues.
We want to thank you and everyone who have communicated with Ben throughout this ordeal. Because the Ross Procedure is not on the "favorite" list here at the Cleveland Clinic, he would have never known about this option. During his surgical consult, Ben began to question Dr. Smedira about the procedure. At once, Dr. Smedira noted that Ben was a perfect candidate and went for Dr. Petterssen who is proficient in the Ross. The decision was made. His prognosis is excellent and we are convinced that Ben has chosen a repair that will last a lifetime.
Through all of this, I have given God the glory. I want to assure everyone, that we are "Praising God for the great things he has done."
Update 26 Aug 2000
Today Saturday, August 26th, I am not quite three weeks post operation. But I seem to be doing well with my recovery from the Ross Procedure that was done on August 8th. My mother completed the last update while I was in the hospital and I greatly appreciate that from her. I tried to get online in the Hotel the night before to send an update to you wonderful people, part of my family as far as I am concerned, but the Hotel wouldn't let me stay online long enough to get my update sent to Bill. That is the reason my mother updated all of you. She knew it was my wishes that all of you knew what was going on.
Well, my recovery goes well. I am out walking two to three times per day and, at this point, my walks are anywhere from 1.3 to 1.5 miles each. I still have some pain in the incision area and it feels as if my breast bone moves or pops a little with certain movements. Although there is not really any pain with this, it is rather bothersome.
I am considering going back to work next week, part time. There isn't any physical work associated with my position at Allied and I am ready to get back to the old grind stone. It is hard for a guy like me to be inactive and feel like others have to do things for me. I am, however, being very careful not to over do it.
I will continue to update all of you as I progress to full recovery. I thank each of you for the time you took to pray for my family and I. And stopping to take a look at "theStatus.com" web page. A couple of you left messages and logged in to the site and that is something that really made me realize how many people were out there praying and hoping for the best results. Again I THANK YOU.
I want to give a special thanks to Rob Dunn, author of Ruptured Ascending Aortic Dissection At 49. If Rob hadn't introduced me to all of you and hadn't given me some web pages to research, I would have never found out about the Ross Procedure and who knows what procedure I would have chosen. Rob also gave me someone to "vent" to, sometimes daily. He helped give me courage to be able to face what was coming in my life, and I wanted to say a public "THANK YOU FROM THE DEPTH OF MY SOUL" for everything you did for me Rob.
Take care and God Bless to all.
Update 21 Oct 2000
Well, my recovery has gone very well to this point. I had a couple of set back since my last update. The first set back occurred just a few days after my last update. I was getting ready to head to bed when my heart began to POUND and the rate went to 140bpm. It took my wife 40 minutes to talk me into going to the hospital, but I did. When I arrived they told me I had a normal rhythm, just fast. They gave me some meds, and I went into atrial fibrilation immediately. (I guess I should mention that my local cardiologist had changed my medications I was taking at home. Due to extreme dizziness I was having) The docs here at the local hospital got me out of the atrial fibrilation in just a few hours. And before releasing me totally changed my meds.
About five days later, Tuesday September 5th, while having a stress echo (for approval to enter Phase II cardiac rehab) I had a "pause" when my heart did not beat for three seconds or so and a very short bout of ventricular tachycardia. The local cardiologist was very nervous and admitted me again. I stayed here locally for two days and was transferred to Cleveland Clinic. The cardiologist there had the Electrophysiologists come and evaluate me to see if there was a problem with my electrical system, sounds like I am a car, lol. What was decided, was to correct my medications and redo the stress test to see how I do. Everything went great. They decided that the medication changes had been the cause of my two arrhythmia problems. From there, my recovery went great.
I entered the cardiac rehab and have progressed very well. I was doing more the first day of my rehab than patients that were at their 6th week, made me feel good. I have continued on the treadmill and have actually begun to lift weights again. (Very light) I am even starting to loose some of that darn post op weight that I gained. Finally, the last set back, not really a set back, I had one of my sternum wires come loose. I went and had the docs at CCF take a look and they opted to remove it. The wire removal was last Monday, the 16th of this month. I did not realize how much that wire had been effecting me. I feel like a million bucks now, a weak million but still a million.
I think that sums up where I stand right now. Back to work, normal activities there, and lifting again, while all the time enjoying every second that God has granted me, second chance maybe, to spend quality time with my family and friends.
Update: 9 December 2006
Six and one half years ago I was posting to this site with such an empty feeling of helplessness. It was people I met here who helped get me through my surgery in August of 2000. Thank you!!
My recovery and life have been fantastic. I have had a new outlook on every aspect of my life. Leading a very normal and busy life and participating in my annual check ups and receiving great reports from the doctors at Cleveland Clinic.
On November 1st my wife and I made our annual trek to Cleveland to my annual check-up. I wasn't sure what to expect this year. The previous years I had looked forward to being there to get the good news that my Ross Procedure is performing excellently. But during this past year I have been experiencing many different occasions of PVCs. Some of the events would be very short lived and others would last as long as even four days and very uncomfortable. So as we were at the doctor for the check-up, I just had a feeling that something wasn't right. Didn't know what or if anything, just a feeling.
With this been said we have discovered that there is another aneurysm developing in the ascending aorta and extending into the aortic arch. The cardiologist recommended a surgical consult which my wife and I had with my surgeon November 15th. The cardio's recommendation was due to the size of the aneurysm. This last year it grew 4 mm at the base of the aorta, up to 5.1 cm in that location when I had my CT scan on November 1st. We had a very long meeting in the surgeons office and the gist of the his recommendation is for me to begin thinking through what I want done when we have to go in to fix the aneurysm.
There are a lot of options with the valves from `re-implanting' the two that are currently in place, to a mechanical aortic and putting my aortic (formerly pulmonary) back into the pulmonary position, to all new tissue, or even both new mechanical. Currently, both valves that are in place look great and are doing well. The gradient pressures are acceptable and there is little to no leakage or insufficiency. So the Ross Procedure has worked great for me to this point.
No matter what is done, if anything, to the valves; the aortic arch will need replaced from the aortic valve through the arch, past the `branching' areas. It's as big as 4.5 cm midway through the arch. Really with what the surgeon said, what has been learned in the last few years; people with bicuspid aortic valve disease tend to have weaker aortic tissue and, according to him, it is becoming a standard idea and even practice with some surgeons to replace the entire arch when performing the original valve replacement on patients in my similar condition.
So, here I go, if we knew then what we know now...
He continued to say he wants me back in six months to have another CT scan to check the size again, on top of which he wants to get "aggressive" with my blood pressure management medication. There is still time to begin deciding what to do when the time comes.
My daughter wasn't old enough to remember the last time I had to have open heart surgery and we have chosen not to let her know that Daddy will be facing another one sometime in the future. My son, on the other hand, was old enough to remember and has grown into a very intelligent mature young man as a junior in high school. He put it very well when my wife and I told him; he is just glad that we know early on this time rather than the rush we had last time when the aneurysm was discovered.
Timing for the next open heart surgery to fix the aneurysm depends totally on the growth rate of the aneurysm. It could be a soon as next summer or even two years or so. I am hoping for it to stabilize and get a few more years out of my Ross Procedure, which is doing great in and of itself.
I am now just at the beginning of the idea and research phase. AGAIN.
I will keep all of you posted on my prognosis and as always, keep each of you in my prayers.
God Bless.
© Copyright 2000 Ben Smith
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