KenHorse Posted May 22, 2023 Share Posted May 22, 2023 Today is week #7 after my RLL lobectomy for Stage 1a NSCLC. As I posted previously, margins and 13 lymph nodes were clear. About 3 weeks ago, I developed a cough (sometimes productive, other times dry) but a definite feeling of a lump/scratchiness in the back of my throat when I breathe in deeply. Sometimes it's worse than other times and I've been in repeated contact with my medical team about it. They didn't seem overly concerned. This past Saturday, I mowed my lawn (which I have done the previous week as well) and I seemed more out of breath than that previous time (I was out of breath then but "not as badly"), noticed my heart rate as running around 88 (as opposed to my usual resting rate of around 60 - 70) and my lung capacity was around around 1750 (according to my incentive spirometer) instead of my usual 2000 or more. Something was off. So off to my local ER (I'm with Kaiser) and after a chest x-ray and CT scan, they determine there's a fluid build up in my right chest (If anyone really wants, I do have the x-ray and could post it 😁). So they drain it (the procedure was totally pain free by the way) and end up taking out 2 liters (yes LITERS) of milky white fluid. The surgeon who performed it called it "chyle" (no idea what that was at the time but I've obviously been researching it and now do). I'm still waiting on the final pathology report but the liquid did come back loaded with triglycerides, which seems to confirm that it is chyle. I did mention to the surgeon who performed the procedure that my capacity was 1750 ml and he seemed a little surprised. As it seemed to take a long time to build up, they sent me home and I'm to hear from my pulmonologist within the next few days. Needless to say, I am breathing much easier now and, after reading up on what a chylothorax is, I've been watching my diet and staying on a low fat diet until we see what needs to be done about this Link to comment Share on other sites More sharing options...
Tom Galli Posted May 23, 2023 Share Posted May 23, 2023 Well, I spent a couple of hours nosing around articles about chylothorax. While I'm acquainted with pleural effusions, I didn't know details about the fluid that causes them. My research was both interesting and ghoulish. I'd didn't know there was a connection between the lymphatic system and the blood system in such a direct manner. Let's hope your chyle problem stops pronto. Your post highlights one of the benefits of a low-fat diet. Stay the course. Tom Link to comment Share on other sites More sharing options...
BridgetO Posted May 23, 2023 Share Posted May 23, 2023 I've heard of chyle, but I've never heard of chylothorax ! Like Tom, I went on line to see what I could learn about it. You're a rare bird, Ken Horse! I wish you all the best in getting to the bottom of this and back to normal. Keep us posted. Tom Galli 1 Link to comment Share on other sites More sharing options...
KenHorse Posted May 24, 2023 Author Share Posted May 24, 2023 Met with my pulmonologist this morning and dietician this afternoon and I'm now officially on a low fat diet for the next 3 - 6 weeks. Chest x-ray to be done on Monday. Pulmonologist also reports the CT scan and chest x-ray I had show nothing new with my lungs Pathology report came back on the chyle removed from my chest - "negative on malignancy" Hoping for continued good news Tom Galli 1 Link to comment Share on other sites More sharing options...
Tom Galli Posted May 24, 2023 Share Posted May 24, 2023 Ken, Negative for malignancy is the best of good news! Stay the course. Tom Link to comment Share on other sites More sharing options...
BridgetO Posted May 25, 2023 Share Posted May 25, 2023 Yep, great news! Now hoping for that chyle to get back where it belongs. Tom Galli 1 Link to comment Share on other sites More sharing options...
KenHorse Posted May 27, 2023 Author Share Posted May 27, 2023 I've been on a low fat diet for a week now (< 20g of fat - actually been averaging around 12g to 14g) and hoping for good results with my chest x-ray on Tuesday. Would be nice not to have to use surgery to correct it! Tom Galli 1 Link to comment Share on other sites More sharing options...
KenHorse Posted May 29, 2023 Author Share Posted May 29, 2023 Ended up in the ER again late yesterday afternoon for the same symptoms and left them after donating another 2 liters of chyle. This time, we were in the ER for damn near 12 hours and got home around 4 AM. That makes 2000 ml in 8 days or 250 ml per day, still well within the guidelines of what is considered a "low output". Anyway, they want me to move forward with the x ray tomorrow to assist with determination of the flow and I plan on telling my pulmonologist that it seems to me we need to establish a schedule of draining things every 5 to 6 days until this is brought under control (and to avoid the fun of the ER experience) In the meantime, I'm continuing my very low fat diet BridgetO 1 Link to comment Share on other sites More sharing options...
Tom Galli Posted May 29, 2023 Share Posted May 29, 2023 KenHorse, When it rains it pours buckets, especially in Oregon! A scheduled chyle drain is a good approach. Stay the course. Tom BridgetO 1 Link to comment Share on other sites More sharing options...
BridgetO Posted May 30, 2023 Share Posted May 30, 2023 Tom, It doesn't usually rain buckets of chyle, though! Ken, this sounds like a big drag! Do they know why this chyle is leaking? Link to comment Share on other sites More sharing options...
KenHorse Posted May 30, 2023 Author Share Posted May 30, 2023 The assumption, which really hasn't been made "crystal clear" (if you know what I mean) is trauma from my surgery. Think I'll ask for concrete explaination. By the way, Sunnyside Kaiser is no longer my favorite ER 🤣 Tom Galli 1 Link to comment Share on other sites More sharing options...
KenHorse Posted June 7, 2023 Author Share Posted June 7, 2023 Update - Had 800 ml removed last Friday, June 2nd (a span of 5 days since the last drainage) and scheduled to repeat the process this morning, which happened. Only this time, they removed around 1400 ml. My surgeon is saying to give it 1 more week and, if not vastly improved at that time, another surgery is probably in my immediate future Dang it..... Tom Galli 1 Link to comment Share on other sites More sharing options...
KenHorse Posted June 10, 2023 Author Share Posted June 10, 2023 Another update (you tired yet? I am). After pulling another 1400 ml out of me today, my surgeon says it's time for (yet another procedure to look up!) a video assisted thoracic duct litigation (go back in and try to seal it up). Yea me! June 21st is the day....... Tom Galli 1 Link to comment Share on other sites More sharing options...
BBTN Posted June 10, 2023 Share Posted June 10, 2023 Goodness Ken you're having a time with this chyle...I hate that you're having to have another procedure but hopefully they can make this better. Im 2 weeks out from my lobectomy and never really had any pain but can't seem to catch my breath...hoping we both kick this thing in the rear! Link to comment Share on other sites More sharing options...
KenHorse Posted June 10, 2023 Author Share Posted June 10, 2023 It takes time for your remaining lung to expand fully. Of course, talk with your doc about it but it took me a month or so before I realized "Hey! I'm not out of breath walking around!" Yea, this chyle thing sucks but I think I like the idea of (hopefully) having it fixed and not having to worry about waking up every morning, wondering if today's the day I need to go back to the ER.... Tom Galli 1 Link to comment Share on other sites More sharing options...
KenHorse Posted June 17, 2023 Author Share Posted June 17, 2023 Good news! (maybe) Last Tuesday I was scheduled for another thoracentisis but the ultrasound revealed somewhere between 250 and 500 ml of fluid (since the procedure the previous Friday) so my pulmonologist said the risk/benefit wasn't there so we didn't drain. That works out to only (lets say the amount was 500 ml) of only 125 ml per day. MUCH BETTER THAN PREVIOUS AMOUNTS FOR SURE!. Today, according to a new ultrasound performed by a different pulmonologist revealed "somewhere around 1 to 2 cm of fluid" (her words). She also showed me the ultrasound and clearly my remaining lung was expanding nicely. She explained the structures I was seeing. So it's been 7 days since they took that 1.4 liters out of me and, obviously, the leak has greatly slowed. Still not sure where my surgeon's head is at with all this but I hope to find out Monday if we're still on for Wednesday's thoracic duct ligation based on this new info. Tom Galli 1 Link to comment Share on other sites More sharing options...
BBTN Posted June 17, 2023 Share Posted June 17, 2023 That's wonderful news! Fingers crossed for healing 🤞 Tom Galli 1 Link to comment Share on other sites More sharing options...
BridgetO Posted June 17, 2023 Share Posted June 17, 2023 This is great to hear! Link to comment Share on other sites More sharing options...
KenHorse Posted June 19, 2023 Author Share Posted June 19, 2023 My surgeon's office just called and they want me to get a chest x-ray done today (I need to get a blood draw and a Covid test done today already). Depending on the results (although they didn't say what those results are), he may cancel my surgery on Wednesday. Fingers and toes crossed..... BBTN and BridgetO 2 Link to comment Share on other sites More sharing options...
Tom Galli Posted June 20, 2023 Share Posted June 20, 2023 KenHorse, I do hope you are moving toward a resolution. This symptom and draining is a nightmare. I've got all my digits crossed. Stay the course. Tom Link to comment Share on other sites More sharing options...
KenHorse Posted June 20, 2023 Author Share Posted June 20, 2023 On a side note, my PSA level remains undetectable 👍 (unrelated I know but good news is good news!) Link to comment Share on other sites More sharing options...
KenHorse Posted June 20, 2023 Author Share Posted June 20, 2023 Well......tomorrow at 8 am, I report for surgery. I guess the bright side is that the problem should be fixed and I can go back to eating junk!🤣 Tom Galli 1 Link to comment Share on other sites More sharing options...
BBTN Posted June 21, 2023 Share Posted June 21, 2023 Good luck Ken! Hope this resolves the chyle and you can move forward 🙏 Tom Galli 1 Link to comment Share on other sites More sharing options...
KenHorse Posted June 23, 2023 Author Share Posted June 23, 2023 I'm baaaack. I ended up undergoing surgery Wednesday morning (as originally planned) and am now home again. All went well, they found and sealed the leak and so far, so good. I am to remain on my low fat diet for 4 more weeks in order to give the repair time to properly heal. Hopefully, no more trips to be drained! I have to add that I'm getting worried with how easily surgery has become for me. 😁 Tom Galli 1 Link to comment Share on other sites More sharing options...
BBTN Posted June 24, 2023 Share Posted June 24, 2023 🎊 yay! Glad its over I'm sure! Link to comment Share on other sites More sharing options...
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