S
scottvant
Hey all--
There wasn't a specific forum for "introductions" and I figured this one was as good a place as any to say hello...
In a nutshell--I'm 35 now, 34 at the time of my surgery last December. No previous history of heart trouble at all, even with my bicuspid aortic valve. (No murmurs, no symptoms, nothing...) Until, after several visits to the dentist last summer, I got really sick in October. In typical guy fashion, I took forever getting myself to the doctor (and yes, I'm also the type who will drive around lost for an hour rather than ask for directions...) but once I did, the first thing he found (in addition to the obvious 103 degree fever, chills, night sweats, etc.) was dangerously serious anemia. His initial "maybe" diagnosis based on this was "it might be leukemia" and he sent me to a hematologist/oncologist for further review. It was this oncologist who heard my brand new heart murmur and ordered my first-ever echocardiogram, which revealed a trashed aortic valve (entire left cusp gone) and a giant strep viridans vegetation in its place. I was admitted to the hospital immediately (only later did the doctors explain I was actually living on borrowed time by then) and started on 3x daily infusions of two different antibiotics, one unit of whole blood a day, and a completely evil torture method called "Ferritin," which if you've ever had that, you know what I mean. <shudder> Open-heart surgery would not be possible until the infection had cleared up some (not only did my endocardium have the huge abscess, but circulating levels of the bacteria in my blood had also reached near-toxic levels) and my red cell count normalized somewhat; so I got to lie there in the hospital for two weeks and wonder how in the hell you can go from being a perfectly healthy 34 year old man who eats and trains like an athlete to nearly dead of a heart condition without realizing it.
In other words, I didn't have months or years to bust my head over what kind of valve I wanted. Basically I was told, "your heart is failing, your blood is poisonous, you need a new valve" and without being able to do my own research (which I would have done, conditions permitting), I just took my surgeon's recommendation at face value, which was, if we open you up and your pulmonic valve is good, you're getting the Ross. It turns out that the good Dr. Trento is actually somewhat of a luminary among heart surgeons on this coast (I guess, at least that's what a friend of mine who works at UCLA Med Ctr told me, afterward) and I felt comfortable not questioning his judgment. As it was explained to me, mechanicals can last forever, tissue valves not so much, and Ross replacements somewhere in the middle. I was fine with that, as a first venture.
That was December. I actually made a pretty quick recovery, all things considered, if you ignore the fact that I had a PICC line in my arm for 5 weeks after the surgery so I could continue to give myself 2x daily IV infusions of Vanco at home--which made me feel, at times, like a terminally ill invalid, walking around the house dragging the IV pole everywhere... (Although it was kind of fun showing up at holiday parties and asking people, "DO YOU WANNA SEE MY CATHETER?!?!?!?"
Postoperatively I am being treated for mild LVH and cardiomyopathy (a result of either aortic stenosis--like I said, never diagnosed, but maybe always there?--or from the 4+ regurg I had for however long I was sick...) which my cardiologist expects should nearly or completely reverse. I am on CoReg 6.25mg 2x/day for that. Pre-op I had a dilated aortic root (4.3 cm) which was re-sized in an annuloplasty at the time of operation. The drawback to the Ross being that pulmonary arterial wall is not as thick as aorta and I run the risk of my neo-aortic root dilating in the same way...
In any case, I had lots of time to lie around recovering and wondering what's next--eventually I will need another surgery, that much was clear from the get-go; and actually this doesn't scare or bother me. The surgery was actually a snap. I my case, as the worst part of my ordeal, BY FAR, was the endocarditis and its symptoms--I have never felt so terrible, so sick, for so long, in my life. Day 2 post op, only minutes after being moved to a regular room from CICU, still feeling a bit like I had been run over by a truck and with my cool new sternotomy scar still throbbing in (slightly, but not completely numbed) pain, I already felt better than I had in weeks, if not months, just having that damned infection out of my system. To spend 5 days in the hospital again to get a new valve seems like a cakewalk compared to the 3 weeks I was there this time, watching the nurses lose their poker face as my vital signs got worse each day. (I was originally scheduled to have my surgery on a Friday morning--the Monday evening before, the nurse took my vitals, which by then had deteriorated to BP 90/35 w/ resting pulse 145, and returned with a doctor who said, "we're moving your surgery to tomorrow morning," leaving the unspoken insinuation hanging in the air, "because you don't have that kind of time.")
Though I do feel very lucky to be alive, it is for this very reason that I refuse to live my life now in fear of my new heart condition. Before all of this, my two great loves (and hobbies) were bodybuilding and skydiving, neither of which my cardio wants me doing, ever again. He thinks I'm a problem child, since my response to this caution from him was, "wrong answer." (I got the same reaction from the nurses at cardiac rehab who were always having to tell me, "slow down!") My life is not going to leap from 34 years old and active to 35 years old and chronically ill. In a way I've spent much of the last six months being very angry that I have to deal with this sh*t at all. Though I know there could have been much worse things (remember I spent a whole week thinking I had cancer and was facing a life of bone marrow transplants and chemo--compared to that, 3 weeks in the hospital and 8 weeks of recovery is nothing...), but I almost can't stand the thought of living life being afraid of every little thing being too much of a strain. In that at least one more valve replacement is inevitable, at my age, I don't suppose I care if that has to happen in 5, 10, 15, or 20 years--and knowing that, if I know an activity isn't going to kill me instantly, I'm probably going to keep doing it. Why do I care if my next operation is when I'm 45 or 50, if it means I don't have to live like an invalid now? (Or better put, why put off for another five years something that's gonna have to happen anyway, if it means I have to give up doing everything I enjoy, to get those 5 years?)
During all this, the internet has been a godsend. I was by far the youngest patient in the heart ward at the hospital. All the ladies with me in cardiac rehab were forever trying to set me up with their GRANDDAUGHTERS. Doing some reading on the net and finding out that I am actually not the "30-something Lone Ranger" in all of this has been very comforting.
Though I did promise him I won't be jumping out of any airplanes any time soon, I did get my cardiologist to approve Yoga workouts, to attempt to maintain at least a shred of my former physique while I work through all of this, and just last week he gave me the green light to begin training for next summer's California AIDS LifeCycle (it's a charity fundraiser, a 575 mile bike ride from San Francisco to Los Angeles), so at least now I have a goal to work toward and don't feel completely helpless.
I look forward to sharing info and experiences with you guys here; my quick perusal of the message boards just now suggests I'm the newbie here, seeing as how I didn't even know i HAD a heart condition until last fall; so I'll more than likely be asking way more questions than answering, but I'll also try to be helpful and offer advice wherever I can.
Best,
Scott Van Tussenbrook
-----------------------------
Ross Procedure, 12/16/02
Cedars-Sinai Medical Center, Dr. Alfredo Trento
Los Angeles, CA
There wasn't a specific forum for "introductions" and I figured this one was as good a place as any to say hello...
In a nutshell--I'm 35 now, 34 at the time of my surgery last December. No previous history of heart trouble at all, even with my bicuspid aortic valve. (No murmurs, no symptoms, nothing...) Until, after several visits to the dentist last summer, I got really sick in October. In typical guy fashion, I took forever getting myself to the doctor (and yes, I'm also the type who will drive around lost for an hour rather than ask for directions...) but once I did, the first thing he found (in addition to the obvious 103 degree fever, chills, night sweats, etc.) was dangerously serious anemia. His initial "maybe" diagnosis based on this was "it might be leukemia" and he sent me to a hematologist/oncologist for further review. It was this oncologist who heard my brand new heart murmur and ordered my first-ever echocardiogram, which revealed a trashed aortic valve (entire left cusp gone) and a giant strep viridans vegetation in its place. I was admitted to the hospital immediately (only later did the doctors explain I was actually living on borrowed time by then) and started on 3x daily infusions of two different antibiotics, one unit of whole blood a day, and a completely evil torture method called "Ferritin," which if you've ever had that, you know what I mean. <shudder> Open-heart surgery would not be possible until the infection had cleared up some (not only did my endocardium have the huge abscess, but circulating levels of the bacteria in my blood had also reached near-toxic levels) and my red cell count normalized somewhat; so I got to lie there in the hospital for two weeks and wonder how in the hell you can go from being a perfectly healthy 34 year old man who eats and trains like an athlete to nearly dead of a heart condition without realizing it.
In other words, I didn't have months or years to bust my head over what kind of valve I wanted. Basically I was told, "your heart is failing, your blood is poisonous, you need a new valve" and without being able to do my own research (which I would have done, conditions permitting), I just took my surgeon's recommendation at face value, which was, if we open you up and your pulmonic valve is good, you're getting the Ross. It turns out that the good Dr. Trento is actually somewhat of a luminary among heart surgeons on this coast (I guess, at least that's what a friend of mine who works at UCLA Med Ctr told me, afterward) and I felt comfortable not questioning his judgment. As it was explained to me, mechanicals can last forever, tissue valves not so much, and Ross replacements somewhere in the middle. I was fine with that, as a first venture.
That was December. I actually made a pretty quick recovery, all things considered, if you ignore the fact that I had a PICC line in my arm for 5 weeks after the surgery so I could continue to give myself 2x daily IV infusions of Vanco at home--which made me feel, at times, like a terminally ill invalid, walking around the house dragging the IV pole everywhere... (Although it was kind of fun showing up at holiday parties and asking people, "DO YOU WANNA SEE MY CATHETER?!?!?!?"
Postoperatively I am being treated for mild LVH and cardiomyopathy (a result of either aortic stenosis--like I said, never diagnosed, but maybe always there?--or from the 4+ regurg I had for however long I was sick...) which my cardiologist expects should nearly or completely reverse. I am on CoReg 6.25mg 2x/day for that. Pre-op I had a dilated aortic root (4.3 cm) which was re-sized in an annuloplasty at the time of operation. The drawback to the Ross being that pulmonary arterial wall is not as thick as aorta and I run the risk of my neo-aortic root dilating in the same way...In any case, I had lots of time to lie around recovering and wondering what's next--eventually I will need another surgery, that much was clear from the get-go; and actually this doesn't scare or bother me. The surgery was actually a snap. I my case, as the worst part of my ordeal, BY FAR, was the endocarditis and its symptoms--I have never felt so terrible, so sick, for so long, in my life. Day 2 post op, only minutes after being moved to a regular room from CICU, still feeling a bit like I had been run over by a truck and with my cool new sternotomy scar still throbbing in (slightly, but not completely numbed) pain, I already felt better than I had in weeks, if not months, just having that damned infection out of my system. To spend 5 days in the hospital again to get a new valve seems like a cakewalk compared to the 3 weeks I was there this time, watching the nurses lose their poker face as my vital signs got worse each day. (I was originally scheduled to have my surgery on a Friday morning--the Monday evening before, the nurse took my vitals, which by then had deteriorated to BP 90/35 w/ resting pulse 145, and returned with a doctor who said, "we're moving your surgery to tomorrow morning," leaving the unspoken insinuation hanging in the air, "because you don't have that kind of time.")
Though I do feel very lucky to be alive, it is for this very reason that I refuse to live my life now in fear of my new heart condition. Before all of this, my two great loves (and hobbies) were bodybuilding and skydiving, neither of which my cardio wants me doing, ever again. He thinks I'm a problem child, since my response to this caution from him was, "wrong answer." (I got the same reaction from the nurses at cardiac rehab who were always having to tell me, "slow down!") My life is not going to leap from 34 years old and active to 35 years old and chronically ill. In a way I've spent much of the last six months being very angry that I have to deal with this sh*t at all. Though I know there could have been much worse things (remember I spent a whole week thinking I had cancer and was facing a life of bone marrow transplants and chemo--compared to that, 3 weeks in the hospital and 8 weeks of recovery is nothing...), but I almost can't stand the thought of living life being afraid of every little thing being too much of a strain. In that at least one more valve replacement is inevitable, at my age, I don't suppose I care if that has to happen in 5, 10, 15, or 20 years--and knowing that, if I know an activity isn't going to kill me instantly, I'm probably going to keep doing it. Why do I care if my next operation is when I'm 45 or 50, if it means I don't have to live like an invalid now? (Or better put, why put off for another five years something that's gonna have to happen anyway, if it means I have to give up doing everything I enjoy, to get those 5 years?)
During all this, the internet has been a godsend. I was by far the youngest patient in the heart ward at the hospital. All the ladies with me in cardiac rehab were forever trying to set me up with their GRANDDAUGHTERS. Doing some reading on the net and finding out that I am actually not the "30-something Lone Ranger" in all of this has been very comforting.
Though I did promise him I won't be jumping out of any airplanes any time soon, I did get my cardiologist to approve Yoga workouts, to attempt to maintain at least a shred of my former physique while I work through all of this, and just last week he gave me the green light to begin training for next summer's California AIDS LifeCycle (it's a charity fundraiser, a 575 mile bike ride from San Francisco to Los Angeles), so at least now I have a goal to work toward and don't feel completely helpless.
I look forward to sharing info and experiences with you guys here; my quick perusal of the message boards just now suggests I'm the newbie here, seeing as how I didn't even know i HAD a heart condition until last fall; so I'll more than likely be asking way more questions than answering, but I'll also try to be helpful and offer advice wherever I can.
Best,
Scott Van Tussenbrook
-----------------------------
Ross Procedure, 12/16/02
Cedars-Sinai Medical Center, Dr. Alfredo Trento
Los Angeles, CA
