What a week! What a crappy, crappy week. I always thought I was really lucky to be one of those Lymies that didn't have it so bad to end up in the hospital, but in the hospital is exactly where I ended up on Thursday.
On Monday I went to get a PICC line placed for continuing my IV therapy. Unfortunately, I chose a clinic closer to me, rather than the one my doctor highly recommended. Getting a PICC line placed is a bad enough experience, but getting it placed by an abrupt doctor who laughed unsympathetically at my disease and symptoms, sucked in an extra special kind of way. After two days of bleeding I finally understood what they meant by "do not use your arm for anything for one full week."
On Tuesday, Mr. Wild Dingo asked me to make sure to put a log on the fire to keep it burning. When I explained to him that I wasn't allowed to use my arm because I had a catheter going into my arm, up through my chest and ending just at my heart, he said, "That sounds dangerous! Why would you want that?"
Sigh. For the same reason I wanted Lyme disease. Like me, even he didn't understand the implications of getting a PICC line.
Tuesday I had started having difficulty breathing and chest tightness. The problem with having Chronic Lyme Disease is it can make you undaunted or indifferent to pain, even if that pain signals something dangerous. This pain was so similar to pain I get from Babesia, the only difference was it was slightly more local and a bit more specific.
By Wednesday I could barely walk the dogs 500 feet to the redwood groove in back of the house without chest pain and panting. When my nurse came to change the dressing. I told her I had trouble breathing and that my chest was tight. She didn't seem to think it was strange and told me to lay down and rest all day and take it very easy for one week. So I figured everything was O.K.
By Thursday I met with my doctor, who I could tell was quite concerned but holding back a bit to keep me from panicking. He'd seen enough trouble with PICC lines to put my disease on hold and to immediately address---that same day---any possibilities that a PICC could cause the breathing and chest pain problems. Sure enough, after a long day of testing, it showed the PICC was placed properly but I had 2 clots around it. Since I was already at the hospital, he had the diagnostic tech walk me to the ER and check me in where I stayed overnight to have them check for clots in the lung and heart. By morning the tests were clear of other clots or problems, and they pulled the PICC line out. Going forward I get give myself a shot every day in the stomach with a blood thinner for a minimum of 2 weeks but possibly up to 3 months. We'll know more after meeting with a vascular specialist to see reassess the clot, the best way to clear it and reassess the best way to pursue IV therapy in the future, as there are many options other than PICC to choose from.
I'm amazed I managed to keep my Project 365 going, albeit with archived photos. The best thing about my own 365 is that I can bend the rules around my ability to complete it. The idea for me is to keep focused on something other than Lyme every day even though some of my photos reflect dealing with Lyme.
Like I said in a recent post, in treating Lyme disease, I’ve learned the inches toward recovery or regression are all around me. Every choice I make, every piece of food I put in my mouth, every supplement I take and every amount of energy I spend, matters. Like life, Lyme disease really is just a game of inches.
This little set back is only a few inches of regression. It's no big deal. At least that's the way I'm looking at it.
I'm so thankful to my skillful ILADS doctor whose insight and perception caught the problem early, was on call for me all weekend and checked in on me. I'm so grateful to have this excellent team of doctors, I well-up just thinking about it. They have an excellent plan in place to keep moving forward with my treatment despite this hiccup. They really are the best thing about having this stupid disease.
Lyme may be a game of inches, but I'm playing to win.