Scared

Things are getting better with my health, but there's definitely a long journey in front of me to get back to my "baseline" condition. I am absolutely amazed at how quickly things can get bad, and undo years of work to get to a stable point in my illness. About three years ago I was bed-bound for about a year. It was during and right after the period when I was diagnosed, and I was being shuttled from specialist to specialist trying various treatment plans. My illness has no cure, and there's not even one excepted treatment - you can only deal with the complications as they occur and try to be cautious and prevent further damage. Because of damage that's been done to my internal organs and my vascular system, I receive IV medications and nutrition overnight every night, through an implanted central line that shuttles IVs from a port in my chest through a long catheter leading to my superior vena cava, where they are disbursed throughout my body in my bloodstream. I've been getting nightly IV treatments for over two years, and I'm on my fourth central line. The first three were less permanent, while we waited to make sure that this treatment was feasible, and I lost them one after the other to two infections and then a kink in my line that caused a blood clot.

I've had this port, which is totally implanted under my skin (nothing sticks out) for just over a year now. Basically, to use it I pierce my skin and the rubber port underneath with a special type of needle, which is attached to flexible IV tubing and is affixed to my chest with a sterile, plastic dressing. Underneath the rubber top of the port is a reservoir connected to the long catheter, so the liquid that goes into the reservoir eventually leaks into the tubing at the prescribed rate. I leave the needle in place for a week at a time, and then once a week I have several hours of needle- and tube-free time. Obviously, any foreign body has a risk of infection, and when the foreign body is connected to your heart and bloodstream, that infection can become deadly within hours. I have to be incredibly careful when hoooking up to infusions and even more so when disconnecting or connecting the needle to my port. A cost-conscious change by my home health supply company means that I've been getting a new type of dressing change "kit" for about three weeks now, which changes how I clean my port before accessing (inserting the needle). The general consensus is that these kits aren't nearly as effective as the old ones at cleaning the port site. Sure enough, after using two of the new kits, I ended up with what looked like an infection in the pocket of skin and tissue around the port itself - it was bright red, hot, itchy, and VERY painful. Luckily I didn't have a fever, and there was no red "streaking" along the path of the catheter that could indicate a tunnel or blossoming bloodstream infection. Even so, I followed protocol and hurried my butt up to the ER of my local hospital. Sadly, this isn't the hospital at which my primary doctor practices, and they're not exactly well-versed in rare disorders (like what I deal with).

I fought for my line to be saved, with just a course of antibiotics and a period of prescribed rest from using the port. I was deaccessed for five days, and wasn't getting my meds and nutrition, because every peripheral (normal) IV line inserted blew within a matter of minutes. Finally my PCP said that as soon as the redness was gone I could reaccess and resume treatment. Well, the redness was gone last night, and I reaccessed. It was definitely still sore, but everything seemed ok. I got my regular infusion last night, which was such a relief for my poor body, and we're working to double-up on some things to hopefully speed up my body's return to normal.

My temperature, though, is suddenly just a little above normal, and the site seems sorer than it had been. I'm still on my antibiotics, but I'm concerned that they're not doing the job. I'm going to reevaluate the options with my primary doctor tomorrow to make sure that I do everything I can to save this line. My primary health issue makes surgery a much bigger deal than it would normally be, and it took me months to recover from my port placement last year, which would normally be a minor surgery. I am terrified of having to go through three procedures - the removal of the line (which is surgery), the insertion of a more temporary central line (a minor surgical procedure), and, after the infection clears, the placement of another port. I am praying with every fiber of my being that I can hold onto this line and stave off any other infections. Needless to say, I am reverting to the previous, more expensive dressing change kits, and will absorb the additional cost myself if I have to.

A blogger I follow who lives in Canada reckons that her entire pregnancy, which included fertility treatments, and, horribly, the stillbirth of her beautiful son due to preeclampsia, cost her about $7, with the government picking up the tab for the rest. I pay a great deal for my so-so insurance and the massive amount of health care I need that it doesn't cover. And I, of course, am one of the unbelievably lucky ones, to have health insurance coverage at all when fully 40% of the country doesn't. I don't understand how we can abide sub-par care for way, way, WAY too much money. I've heard people who are against what they call "universal health care" arguing that the government would be able to make your health care decisions. Well, my insurance company just made mine, and look where it landed me. I have friends with my health problems who live in countries that have government-funded health care, and they seem to get excellent care, which is determined by their doctors, not their politicians. I'm not trying to turn this into a politically-motivated blog, but what does this say about our policies? People who need health care should get the best care out there, and it shouldn't cost more than it does to send a kid to college (which is another problem that you shouldn't get me started on). I have watched beloved friends declare bankruptcy and lose their homes because they had a health crisis. I just don't see why people think it's ok to abandon the very people who need help the most. There is so much that we could be doing to change this. I'm hopeful that we've gotten things off onto the right foot by choosing the right president for the job, but there's so much more that needs to happen. For starters, we have to be willing to swallow the cost of health care with higher taxes. Perhaps the way to really start is to remember what this country is all about and not throw people who are already down on their luck under the bus.

I'm sorry if this is preachy, but eventually, everybody has to say something.