beccaslp said:
All this talk is making me nervous. I don't want to have an event! I think because the words "near death" are being used. I still have 2 months to wait and have been pretty calm, but now I am starting to feel pretty nervous! BECCA
Some background: I dunno about Ross, he and his heart got issues that seem to go above and beyond all sense of reason, but then, I think that's why most people here like him so much... or maybe they just recognize he's got the power that we don't.... =)
Anyways, I was born in 1973 with a VERY screwed up heart. I was fighting an uphill battle from the beginning and while I got EXTREMELY lucky and managed to live most of my life up until the present at WELL above the bar for folks with my condition, my time was (and still is) borrowed time and it was almost inevitable that I would have problems.
I was born with something called transposition of the great vessels. The pulmonary artery (runs blood to the lungs to pick up oxygen) and aorta (runs oxygenated blood from the heart out to the body) were formed in the wrong places, basically switched, and that's 100% fatal all the time unless there's some other kind of heart defect that allows oxygen saturated and oxygen depleted blood to mix somewhere between the chambers of the heart. I had a small ventricular septal defect (a hole between the ventricles) that was kept from closing through the use of HIGH powered medications, basically half a step short of fatal doses of digoxin which is derived from a plant called digitalis which happens to be HIGHLY toxic to just about everything that eats it.
Anyways. I had surgery at less than two months old (I don't know exactly when) and the repair job was good enough to last me close to 27 years which is EXTREMELY rare for "kids" with my kind of congenital heart defect. Usually complications arise pre-teen and many kids end up with transplants or artificial valves in their late teens, early twenties or other "happy" things like pacemakers and additional palliative surgeries. I was WAY lucky and about due for a catastrophy really.
Well I got it, damn near killed me too, but alas, I refused to die.
What happened to me was VERY atypical and should not under any circumstances be considered a "normal" surgical experience.
I was in severe heart failure, I was retaining water, about 35 extra pounds of fluids in fact. I was in liver failure and kidney failure, my endocrine system was shutting down, my unrine output was next to nil. I was puking up almost everything I ate and yet I was still walking. I could barely talk, the incessant coughing due to the water in my lungs had all but destroyed my vocal chords. It hurt everywhere, I could barely walk, I would zone out all the time, I was incoherent at times... It was a VERY dark time.
Most of the people here who've had valve replacements NEVER got to that point, not even close to it.
Once I had surgery, I had a rough recovery. I had a lot of set backs because my heart and my body were already in such poor shape. However, I had the best of the best when it came to specialists in the field of congenital (pediatric) heart surgery and they never gave up, not even for a moment.
My case was/is very special. I'm almost in a league of my own unless you set me against other people who've been born with congenital heart defects, then you'll find that I'm actually fairly "normal" as my experiences go.
After I got out of the hospital I had a summer of cardiac rehab. I was the ONLY patient under 45-50 years old and I was 29 at the time. Everyone else there had had some form of coronary by-pass surgery after suffering from a heart attack. I was a freak really and for the first few weeks, the nurses who ran the rehab program were worried that I'd die on their watch because they had never seen a patient like me come through their doors.
Oh yeah, and inspite of all of that, inspite of my extreme case, my extremely poor health, I survived. It took a little longer to get back on track, but I did pull through and I'm fine now.
Sure, I take a lot of medications and I'm probably at about 90% of what I was before I got sick, but then I haven't been able to exercise as much as I'd like and the meds are neccesary to keep me alive now.
On the other side, before surgery I didn't have a family really, not a wife and a son. Before surgery I wasn't a firefighter, I wasn't certified for basic life support with AED (I was training to become an emergency medical technician but didn't quite make the cut, still certified for CPR and automated electronic defibulator use which takes some physical effort to master.)
I got married, I started writing feature stories for the newspaper I work for, I started taking kung-fu...
Yeah, surgery can be quite scary. Most of us who have been through it where scared out of our wits beforehand, but as the time draws closer, you'll find an inner peace about it. You kind of surrender to the fact that THIS is the way things need to be in order for you to continue to live a normal life. This is how it has to be if you're going to grow old, see your children have children, see retirement and in the end, this surgery, as scary as it might be, isn't THAT bad, really. You'll be unconscious for most of it anyways.
We worry because we don't know and what we don't know, we try to make up in our heads. We concoct elaborate schemes of what this is going to be like, what that's going to be like. We basically psych ourselves out on so many levels it's rediculous.
Try to take time to be with yourself, find a quiet, private place where you can sit and just be. Visualize happier places, a favorite beach or a pleasant vacation memory. At one point while I was in the hospital, I found myself recollecting one of the first "dinner dates" I had with my wife. It was in the early fall which is one of my favorite times of the year. Leaves were changing but the air was warm, the breeze was scented with concord grapes (we live in wine country) and everything was fresh and golden. We took a drive out to a local fruit stand and bought some raspberry herbal tea, some veggies, and a bottle of sparkling grape juice then went to a store to pick up some salmon before going to her apartment. Then we cooked up one of her "classic" salmon recipes. It had a dill sauce in it and I love dill. The memory still sticks out well in my mind and it was such a wonderful time.
That was calming for me, helpful and a great distraction to the unpleasantness of being in a hospital.
Find memories like that for yourself and keep them on hand for when you need to be "somewhere else." Practice now if you can.
We all do as much as we can to be prepared, sometimes too much really, but we often forget that once we're there, once the surgery is happening and then you're in recovery, VERY little really matters. You need to breath, you need to see, to speak maybe, to eat. You need to get up and out of bed, to walk, as soon as the doctors and nurses will let you. You need to keep walking, keep moving. Nothign else matters really, everyhting else in your life is on hold for at least a day or two until you get home and then, only certain things will be taken care of. The rest is just on hold, it's not important.
Eventually you get better, recovery takes time, most people seem to say they feel much better after a week or two. Most people don't get back to work until maybe week five or six, and then it's usually "light duty" stuff, maybe working half days for a while. Most people aren't behind the wheel of their care for clsoer to eight weeks. You can't lift more than 20-30 lbs until that point.
There was a discussion about sexual activity a while ago. If you're "that way" you can usually do it, as you feel comfortable, after the first or second week of recovery. The "benchmark" is being able to climb a flight of stairs without difficulty.
Yeah, that stuff is important too for many of us.
You'll work through it, no matter how scared you might feel right now. It just comes if you let it come.
And by the way, I would go through all of it again if I had to, without a second thought. As bad as I was, I know how much better I got once it was over and the pain and discomfort was temporary. It wasn't pretty, it was extremely hairy for a while, but I got through it and I could do it again.
Given my situation, I may have to go through it again, though the next time around could mean heart transplant, not just replacing parts with artificial ones....
