The next step in my journey? Surgery. Pleurodesis surgery to be specific. I was connected with the lung surgery department at University of Washington Medical Center and scheduled a pre-op appointment with Dr. Mulligan and his team. The appointment was a couple weeks out from the date I had gotten the drain tube inserted. At least I could manage the fluid on my own now. Turns out I needed the tube to function. I had so much fluid production. I was draining 1 liter every other day. That is a lot and I wasn’t even draining all the fluid every time. I was working still working but not full time; part of the time from home and part from the office. Some days were better than others but I would say overall, I felt worse after the first time I had the fluid drained. It was like the flood gates opened up and my body got out of equilibrium. Maybe I was on the verge of going down hill quickly right before getting the fluid drained for the first time but at this point thinking back, if I had it to do over again, or have the same issues on the left side in the future, I think I might pause and ask the question? Can I wait to have the fluid drained? The doctors would probably say no, but passed on how I felt before and after having the fluid drained I felt alot worse overall after the first draining. Also if it meant I could avoid having the drain tube insert prior to surgery that would be good too. I base this also on future information that I will explain below in this blog chapter.
My husband Josh drove me to my appointment with Dr. Mulligan and his team. I wasn’t feeling great that day. Low on energy and tired. Most of the appointment was spent talking with residents on Dr. Mulligans team about what the surgery would be like. They said the best option to stop the fluid would be to perform a pleurodesis surgery, which is where the lining of my lung would be fused to my chest cavity and this would block the chyle fluid from seeping into my chest cavity. Based on the volume of fluid the doctors suggested using talc. I know now that other options are mechanical methods like roughing up the lining (scarring it in essence so that it would fuse to the chest cavity), and using doxycycline (an antibiotic). The doctors said that talc is the most effective method to manage chyle. Pleurodesis is also the surgery that is performed to prevent lung collapses so I will be protected from that in the future on the right side. The piece of information that I remember the doctor saying specifically to me was, prepare yourself mentally to have this same surgery done on the left side in the future. Seriously? Well I guess that makes sense. Approx. 60% of LAM patients will have a lung collapse at some point. For me, I have the added risk of chyle accumulating on the left side as well. Overall pleurodesis surgery on the left side is more likely than not for me. I have come to accept this reality now. But…at the time, it made me feel really overwhelmed. Combined with my diminished energy level that day, I felt very dizzy. This resulted in me not remember much of the appointment. I do remember most of the 15 minutes when Dr. Mulligan came in to meet me and answer some questions. I remember he was very stoic and calm, which I really appreciated from my surgeon. Also he was a bit of a rockstar in the local LAM communinty because he is the sole doctor for all of the PNW that performs lung transplants. So if I needed one of those in the future he would likely be the one performing it. I spoke with the doctors about how pleurodesis was no longer contraindicative for having a lung transplant later in the future. Dr. Mulligan looked at my records, and said I was a long way from needing a lung transplant. I had a full pulmonary function testing done at Overlake Hospital with the pulmonologist before my appointment with the surgery team. Even with the chyle my numbers were not drastically low. I think my FEV1 was 67%.
My surgery appointment was scheduled for June 5th, 2018. The day before my surgery I spoke with an acquaintance I knew thru work who has a son with TSC with growths in the brain. He knew what LAM was right away. I spoke with him over the phone and we shared our stories. He gave me one piece of advice I won’t ever forget: Love not fear. This really resonated with me. I was scared and nervous about my surgery but this made me feel more at ease about my whole situation.
The doctors mentioned that I would be in the hospital for a few days. I expected it would be 3 or 4 days. Josh’s mom came down to spend some time with me while in the hospital which was very nice and appreciated because Josh still went to work each morning and then got off work early to visit me. Josh’s mom also did some research on the surgery and said, it is typically considered pretty painful. You can imagine it would be from how it was described to me by the doctors. That made me nervous but I would also be given an IV of pain killers so I knew that would help.
The day of the surgery, I checked in early in the morning, they prepped me and I was off in the stretched to surgery. On my way, I stopped got to see Josh and his mom and father in-law before they rolled me away to surgery. I remember counting down from 100, determined to get past the 90s before going out, like a little game. I think I got to 97 or 96 and I was out. I remember slowing gaining consciousness. I was in a post-op room, designated for patients to wake up from surgery. I knew that I wouldn’t be in this room long since they were going to check me into the hospital for a longer stay under observation. Typical procedure for this surgery. When I had regained most of my consciousness I assessed how I felt. Not too bad. A bit groggy but as far as how my lung felt, I could feel some pain but it wasn’t unbearable. After about 20 mins they wheeled me to the room where I would continue with hospital stay. I was in the northeast section of patient rooms on the 4th floor. My room was second to last at the end of a quiet hall and I got a room all to myself. I was very happy I didn’t have to share a room with anyone else. Josh and his mom and father-in-law arrived shortly after I arrived to my room. I was feeling OK but did as the nurse said in the post-op room and after they nurse got the dilauded (morphine) hooked up I hit the button a few times. That helped ease the bit of pain I was feeling.
The photo accompanying this chapter is me with a teddy bear my coworkers got me. If you look closely at me you can totally tell I look a bit high! I was definitely on pain killers! Also I kept my hair in braids because it was always getting tangled. The teddy bear and the braids make me look a little like a kid. Oh well! Oh and man that hospital gown right?! Just such a flattering photo…not! Hahaha
OK, since this chapter is getting a little long I will continue this story in the next chapter. Stay tuned!