I was released from the hospital around 5pm from my 11am surgery appointment to insert the chyle drain tube. I get home and a few days pass as I am adjusting to my new situation of having the drain tube.
The drain tube was uncomfortable in my ribcage area and right side. I remember that I couldn’t really get comfortable those first few days. Changing positions from laying down to sitting to standing was a bit of a chore in order to move in a way that didn’t cause a little jolt of pain. Overall it didn’t hurt too much but when I would move by twisting, or bending over, I would get a little twinge of pain. This was the status quo for at least the first couple of weeks.
A couple days being home after the surgery I was noticing that my left arm when the primary IV was still sore and kinda swollen. I was a little concerned and asked my nurse friend what she thought could be going on. She said it could be my one of two situations: 1) the IV blew threw my vein or 2) I had a blood clot. Either way she said it wouldn’t hurt to get some it looked at and make sure it wasn’t anything serious and go into the ER.
I took my friend’s advise and went to the ER later that day. I went to Overlake in Bellevue, where I had gone to the ER before a week earlier to get the chyle drained for the second time. I will say I was not thrilled to be back in the ER after only a week. There wasn’t a long wait to be seen at the ER. I was checked in and setup in a room. Josh had come with me and we settled in and waited for the doctor and nurse. I explained why I had come in, and my recent LAM diagnosis (and the doctor of course had not heard of it. They took an initial look at my arm and determined in person what my nurse friend had determined over the phone: blown IV or blood clot. The next steps to assess exactly what was going on was a ultrasound. The ultrasound tech came in a couple hours later (ER’s sometimes move at the speed of a snail!) and performed the ultrasound. After waiting another hour or so after that, they had officially determined it was a blood clot, likely from the IV. Shit. I could not catch a break. The treatment was blood thinners likely for at least 6 months and a follow up appointment with a vascular doctor.
I made an appoint for a few days later with a vascular doctor at Lake Washington Vascular which was also in the Overlake Hospital complex. My first appointment went fine. They took another ultrasound and told me that the blood clot or deep vein thrombosis (DVT) was pretty large. I said that I didn’t have a history of high blood pressure or blood clots and that I think it was related to the surgery, position of my body restricting my left arm a bit, my dehydrated state during the surgery. I also wonder if it was due to a car accident I had suffered 13 years earlier that had messed up my shoulder and left side. Who knows the cause, probably a combination of all these different issues. All I knew is that it definitely was not related to the LAM.
Josh came with me to the doctor appointment and part way through the doctor explaining my veins and the issues, Josh started to feel light-headed. I looked over at him and he was white as a ghost. I looked at the doctor and Josh and I instantly switched spots, him moving to the exam chair and we got him some juice and a cold cloth to put on his head as we put the exam chair down into a horizontal position so he could lay down. This was a surprise for me that Josh would almost pass out in this situation but after thinking about it a bit, it makes sense. Not only was the weight of everything that was happening with me on him, we were sitting there talking about veins and clots and hearing about this in this moment was just too much. Reminder: Josh doesn’t like needles so veins and clots is only a stones throw from the topic of needles. Not fun talk. Can get to your head. I think we were also talking about some of the different options that are available to typical people (not me with my LAM) like breaking up the clots by insert some tubes or something in a surgery. Too risky to have a blood clot potentially break loose and go to my lung. Too risky to do anything really except take blood thinners (Eliquis for me) and wear a compression sleeve (photo shown) for the first 6 weeks. The first 6 weeks is where you are at the highest risk of the blood clot moving.
I would come to find out later during my future adventures that being on blood thinners would complicate every step in my journey and cause me some pain along the way.