What Works for Me
Larry B., Virginia, email@example.com
Written in June, 2003, reporting on surgery earlier that year that has remained a complete solution to the problem
Recent advances in minimally invasive surgery have been very beneficial for me. After 45 post-polio years of avoiding surgery altogether, I have recently been forced into two significant surgical procedures. One was an emergency gallbladder operation (in 1999), done laparoscopically under general anesthesia. The other was a radiofrequency (RF) cardiac ablation (in May of 2003), to correct a persistent arythmia. This second procedure was done under heavy sedation, using my own BiPAP® (Respironics, Inc.) for mechanical ventilation. Both went well. The first was life-saving. The second got me off some drugs that had been compromising my energy and stamina for ten years, making it hard to sort out the late effects of polio.
The purpose of this note is simply a reminder that scaled-down instruments, sophisticated anesthesia and the range of procedures that can be done on an outpatient basis have given us all - especially those of us with respiratory problems - some significant new options.
I think this is important, since the medical management of our secondary conditions also has its risks - especially if it involves the use of powerful drugs with subtle side effects and interactions. Surgery is undoubtedly risky, but so are the medical options. The important thing is to weigh the two sets of risks carefully, without prejudice.
That is easier said than done for me, since I've gone out of my way to avoid surgical options for many years, just on general principles. But I'm learning to be more reasonable about this.
There are still some special precautions ventilator users, and perhaps post-polios generally, need to take. But they are fairly simple. And in my recent experience at least, medical people are now quite ready to hear, and to accommodate our insistence on noninvasive ventilation whenever appropriate. My physicians have also been willing to add (again on request) the extra layers of protection we might need for surgery - or for other procedures done under sedation, such as endoscopic examination, or screening colonoscopy.
My recent cardiac ablation was reassuring on all those points.
Here is the story, for what it's worth.
I had polio in 1952, iron lung variety, and have been using a ventilator for sleep ever since. In 1994 my chest respirator ceased to be effective, and I changed to a BiPAP. During the day I'm a "neck breather," with a forced vital capacity of 850 to 1000 cc, depending on position, and a maximum of 3000 cc with glossopharyngeal breathing (frog-breathing). I have a significant scoliosis, no use of my arms, and though I have good use of my legs, I have had increasing problems with balance and endurance since the '80s. Otherwise my health has been very good over the years. Blood work, including blood gases, weight, blood pressure and so forth are all in the normal ranges. My one and only encounter with surgery prior to this spring was an emergency gallbladder operation in 1999. It was done laparoscopically, in a small community hospital in Virginia, and went surprisingly well - though getting full recovery once I got home and back to work was a lengthy process.
Supraventricular Tachycardia (SVT)
Since the mid-1950s, I have had occasional episodes of supraventricular tachycardia (SVT). This is a relatively benign condition in which the heart suddenly shifts into high gear and beats at rates ranging from 160 to 200 and above, but in a more or less organized way - not the disorganized and dangerous way called fibrillation. You don't want SVT to go on for long periods, but a few hours isn't usually going to harm anything but your psyche.
Until ten years ago my episodes of SVT were infrequent and brief - no more than 15 or 20 minutes. That changed in the early '90s, when I began to have lengthy episodes that had to be resolved with a drug called adenosine, administered intravenously in an ER. The cardiologist I consulted prescribed additional drugs, taken daily, to reduce the frequency of those episodes. He started with digoxin, which didn't seem to have any side effects, but also didn't work. Then he tried a calcium channel blocker (Calan at first, and then Cardizem). These were reasonably effective at 240 mg, but I did not tolerate higher doses well, and I would have to make a trip to the ER once a year on average - usually at very inconvenient times.
The calcium channel blocker also had burdensome side effects, including subtle decreases in energy, stamina and balance. Further, it increased fluid retention enough to require a low dose of a diuretic daily (Demedex, 20mg), which in turn required daily doses of potassium. And the treatment in the ER had its own risks. It involved the use of a short-acting drug, adenosine, that causes the heart to stop briefly (or "pause," as they hopefully put it), and although it is pretty safe as these things go, it isn't pleasant, and the presence of the crash cart is bracing.
But there seemed to be no alternative at first. In the early '90s there was a relatively new surgical procedure, called a radio frequency (RF) cardiac ablation, but it was a lengthy ordeal - routinely 4 to 5 hours, but sometimes much longer – and my physicians thought it would be too strenuous for me. Not to mention that when the issue first arose, I was still using a chest respirator, and that probably wouldn't have worked, meaning that some other form of ventilation would have to have been used. I was not eager for that, imagining an intubation. So I firmly declined to consider this option. More powerful drugs were also unappealing.
My cardiologist still thinks that my decision was the right one at the time, but I am now convinced that after 1994, when I went on the BiPAP, I should have begun to reconsider the ablation. My prejudice against general anesthesia and heavy sedation was very strong, however. I didn't even take a lesson from the fact that the BiPAP made having dental work miraculously easy. (I had never used a ventilator for that. Dragging the chest respirator to the dentist was too cumbersome to contemplate. So I struggled, and so did my dentist, who had to work on a moving target every time I caught a breath.)