Ken with Maxie and Chelsea This is me with my two girls,Maxie and Chelsea! [5/26/99]

It's been 4 months since my last post, and the length between posts is not due to any problems -- it's more that I've been doing well and have been just about as busy as I've ever been! Things are looking really good. I've been off all medication since mid-February, and have felt quite an increase in energy and stamina since. I started full-time work again in February, and that has been going well, too. Work has been getting more and more hectic, and I've been taking it all in stride. I'm going to the gym as often as possible, doing the exercise bike and treadmill and light weights. I'm increasing the load little by little all the time. I'm walking as often as possible, sometimes during lunch at work (1/2 mile) and sometimes a good long hike with the dogs on the weekends (2-3 miles, with good hills and roughish terrain). My breathing is much improved, and the recovery time from being winded after a good incline is much shorter than I can remember for a long time. Of course, this could be from quitting smoking, too, over a year ago. It's probably a combination of the two. My heartbeat is good and strong and definite, and the blood pressure and pulse are more normal than they have ever been. I must say I do get tired a little more easily than before, but that could just be age creeping up with me. I would generally call all this good news!

There are only a couple of lingering annoyances. One is the tingling numbness in my right hand (the side including the ring finger and pinkie). It had been subsiding, then all of a sudden this month it got worse, making it a little more difficult to type (of which I do a lot at work). I talked to Dr. Stelzer this week, who told me that it seems it's just going to take longer than he thought for this to get back to normal. The recovery of the nerves is so gradual, he said, that it's just going to take a while.   The other problem is the "clicking" or "popping" of the sternum that I feel when I bend down or pick up anything heavy. This is a major reason for not having tried to do more with weights in the gym.   I've heard through the Ross List that a partially-healed sternum has been known to occur. It made me wonder if I went back to the chiropractor too soon.  The doctor, however (who, incidentally, is now in his new digs as head of cardiac surgery at St. Luke's Hospital in NYC), suggests that what I'm feeling is not the bone but the calcification of the cartilage at the bottom tip of the sternum.  Since cartilage does not fuse to itself like bone does, it attempts to become hardened like bone instead, and what I'm probably feeling is that hardened cartilage rubbing against itself on either side of the incision.  He suggested that I have my cardiologist poke around and see that all is well with it during our next visit (August).  I guess I can live with it until then!  Just having talked to him makes me feel more at ease with all of this.  Our conversation was a great reminder of what a warm, generous, caring human being he is.  Thanks, Doc!

At this point I would like to answer a few frequently-asked questions which have not really been addressed on this web site. The first is: What were the symptoms which led me to believe I had a problem? The only indication I had was something of a shortness of breath and worse, prolonged periods of regaining normal breathing. I stayed winded after strenuous activity for 5-10 minutes. I also had chest pains, but I'm almost certain that they were from stress, as I had no stenosis, just regurgitation. I had no clue why I was feeling like this; I went to a walk-in clinic thinking I might have had bronchitis (I used to be a pack-a-day smoker). They took x-rays and found that I didn't have bronchitis, but that my heart was enlarged and I should check it out with a specialist. Well, I went to an internist instead, and she gave me an echocardiogram (I had had one several years before this, but was simply diagnosed as having a murmur and sent home!). From the results of this she recommended a cardiologist, who gave me a stress test and a trans-esophogeal echo (they snake the camera down your throat - not fun but not as horrible as you might think). From the results of that it was determined that I had the bicuspid aortic valve and deemed necessary to do a valve replacement.

The second question is: Why did I choose the Ross in the first place, over a porcine valve or a mechanical one? The answer is threefold:

  1. The Ross is supposed to last longer than either of those alternatives before any need for reoperation. I was told there should be little need for reoperation for 25-30 years, and more than likely, it would be the pulmonary valve which would need to be worked on, not the aortic. So I'd probably be able to keep my one good valve. The porcine valve would last up to fifteen years, and the mechanical up to 20 years without further need of maintenance, I was told.
  2. I do not have to go on Coumadin (blood thinner) for the rest of my life, which is generally a necessity for the mechanical valve recipient.
  3. The Ross gives me my own live, healthy, working valve in the aortic position. Though I have a human graft in the pulmonic position, the pulmonic valve is not as hard-working as the aortic, so it's not as much of an issue, in my mind. Plus, I had heard so many positive reports from people who had the Ross themselves, it seemed the natural choice for me.

I would strongly suggest that anyone who has questions about whether to go with the Ross or not should sign up with the Ross Procedure List, an e-mail forum with about 100 members who have either had the Ross, and can help by sharing experiences, or, like me when I first found out I needed the replacement, have a million questions to ask about it. It's been and continues to be an invaluable resource, and I can't recommend it highly enough. The link resides in Cary Mader's excellent Ross Procedure Page, which is also referred to on this page. Please also use the Discussion Group on this site to ask and answer questions, so that everyone can see, and maybe help!

I hope all this helps and gives hope to those who are trying to decide whether the Ross is right for them. I'll be back to give more updates (I can't wait to see how I feel after a year!).

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