So I know I blogged earlier in the week about getting my port in and how Monday and Tuesday went but this week was filled with a lot of excitement and fear.
Monday and Tuesday I was having pain in my port site which I assumed was normal. I also had a hard time turning my head to the left and raising my right arm just below shoulder level – again I figured it was all normal. That is until GWUH called me Wednesday afternoon to check on me and I shared how it had been going. The woman there said NONE of it was normal and to go to the ER. At all costs of trying to avoid an ER trip, I called my doctor’s office and talked to the on call doctor who also agreed that I needed to go to the ER. I should note that I had a small lump just above where the catheter was inserted and where the guide wire was used. In the 2 hours from the time I talked to GWHU and my doctor it had gone from the size of pencil eraser to about a quarter in size, obviously making me more concerned of problem. (FYI-by the time I saw a doctor in the ER the lump was the size of a half dollar.)
Being that I was already extremely light headed and sick and my mom was concerned about being able to get me safely to the ER, I conceded and let my mom make the phone call to 911. (In case I hadn’t mentioned I used to work for 911 for 11.5 years and rode with a volunteer fire company prior to that. I always told my mom don’t call me an ambulance unless I’m dying. Funny how things change.)
So the ambulance drove me code (lights and sirens) despite the fact they deemed me a Priority 3 patient (stable with no major symptoms, pretty much like someone who has a paper cut.) I was triaged in a timely manner but still had to wait hours in the waiting room (yes people, just because you call an ambulance does not mean you will get seen any faster, its all about your priority.) After I finally got back in a room, I had a chest x-ray (to make sure that the placement of my central line was good) and a vascular ultrasound.
I knew things weren’t good when the tech kept asking me “Are you sure you aren’t on any blood thinners?” The doctor finally came in to give me the good and bad news. Good news – the line is stable and the placement is good. Bad news – I have a small clot around the catheter. He said I needed to follow up with a Vascular doctor and Hematologist, as well as having another ultrasound in a week or so to see if the clot is growing.
During all of my pre-testing and preparation for antibiotic treatment, my doctor discovered that I tested positive for “Protein S” which can cause clotting problems. My doctor had said that it may be likely that I would end up on anti coagulant (blood thinner.) The ER doctor started me on a full aspirin upon discharge.
I went home. I had already had a small DVT (deep vein thrombosis/blood clot) in my leg 7 years ago after a long flight home from Las Vegas. Luckily that one was super small and they caught it before it got to my lungs. Now? Was this one stable? Would it break lose again? Would I wake up in the morning? Yes ER doc had said it was small and really, they wouldn’t have let me go home if it was that bad. But when it comes to me, it usually seems that anything that can go wrong will and usually does.
Next day I call my doctor to fill them in (they had never heard of this before and they have been doing this for nearly 20 years.) After my doctor going back and forth, I was told go to to GWHU and have the radiologist take look at it and inspect it. It was 12pm and they closed by 4pm. Its a 2 hour drive from my house to GWSU. Beyond exhaustion from the last 3 days (stress, normally sleeping problems and positional sleeping (I sleep on my right side or on my stomach and the catheter on the right side of my chest.)) We did make it there by 4pm (pretty much on the dot.) Everyone was waiting on me.
Talked to the attending radiology physician. He said that out of the hundreds of cases they do a year, only a few have this problem. His suggestion was to stay on the blood thinners and follow up with the vascular doctor.
I have my appointment July 3rd with the vascular doctor.
As far as the rest of my treatment goes, it still seems that I am better on my dosing days than my “off” days. My joints are swollen and hurt. I’ve been cracking and popping a lot, muscle spasms are worse and my fatigue has increased. It like a really bad pre-treatment, raining for days, confined to bed Lyme day.
And this is supposed to be my easy month…
I still keep focusing on the fact that I WILL get better! I fighting the most important war of my life and this fighting Irish and hard working Polish girl is going to kick Lyme’s ass!
Stay strong Lymers and ROCK ON!