Tom Galli Posted June 24, 2023 Share Posted June 24, 2023 KenHorse, Good to know things went well. Glad you are home all patched up. Stay the course. Tom Link to comment Share on other sites More sharing options...
KenHorse Posted July 1, 2023 Author Share Posted July 1, 2023 What's the tag line used when the new series of Star Wars movies came out? Oh yea The saga continues.... My chest x-ray revealed a "moderate effusion" so I am due for another thoracentisis on Wednesday morning. I guess it will all come down to what the fluid is this time - more chyle or something else. Need I say this is getting old? Tom Galli 1 Link to comment Share on other sites More sharing options...
Pstar Posted July 1, 2023 Share Posted July 1, 2023 Oh boy Ken….I guess you have been put thru the wringer with this. I hope they figure out what is going on with all this fluid. Praying for you. Pam Link to comment Share on other sites More sharing options...
Tom Galli Posted July 2, 2023 Share Posted July 2, 2023 Oh my. When it rains, it pours. Let's hope for a dry spell! Stay the course. Tom Link to comment Share on other sites More sharing options...
Karen_L Posted July 2, 2023 Share Posted July 2, 2023 Blech. You're getting the gold medal for Stupid Cancer Happenings. I'm hoping they're watching your bloodwork carefully, for indications of poor electrolyte balance and anything that could indicate a need for nutritional support. Are they going to see if there's cancer in the fluid? FWIW, I don't think Sunnyside is any worse than any local ER. When they thought I had a pulmonary embolism, it was during the Covid time where waits were up to 10 hours and the National Guard was try to help manage the ER. I refused to go (I said I had no coffee so was not adequately prepared 🤪 ) Luckily, I responded to steroids or else it would have been very bad. Next time, I'll follow directions.... Hang in. Tom Galli 1 Link to comment Share on other sites More sharing options...
KenHorse Posted July 3, 2023 Author Share Posted July 3, 2023 I was planning on specifically asking if they're doing pathology on what they remove and, if necessary, ask it be done. As for my bloodwork, yes. I've had 3 draws done in the past 2 weeks and things actually look OK Tom Galli 1 Link to comment Share on other sites More sharing options...
KenHorse Posted July 3, 2023 Author Share Posted July 3, 2023 Just received a call from my surgeon regarding the results of my x-ray. Firstly he points out that the buildup is nowhere near as extensive as previous times as my right lung (or more accurately, what is left of it) looks fully inflated whereas before it didn't. I mentioned that I can easily max out my IS and that is something I wasn't able to do previously either. He also said that the buildup appears to be seroma and not chyle (although he also said there might be *some* chyle in there too) and seroma isn't unusual after the surgeries I've had. Furthermore, it *may* not be drained on Wednesday as it is located in a specific area, unlike the chyle leak before, and it "might be" dangerous to try and drain it. Obviously I'll ask for more details on Wednesday! He also prescribed octreotide to help my body absorb the fluid At the minimum, I'll have an ultrasound done for sure but I feel pretty good with no SOB at all Tom Galli and Pstar 2 Link to comment Share on other sites More sharing options...
Tom Galli Posted July 3, 2023 Share Posted July 3, 2023 KenHorse, Wonderful! Stay the course. Tom Link to comment Share on other sites More sharing options...
KenHorse Posted July 8, 2023 Author Share Posted July 8, 2023 And the beat goes on..... The ultrasound confirms there is still an effusion however it "small" - estimated to be around 200 ml - and it was again determined to be too small to risk draining it as the remainder of my right lung doesn't appear to be affected by it (it isn't being compressed) and the risk is still high as my lung is expanding well. I can still (easily) max out my IS so the plan is for another x-ray this coming Wednesday to see if there is additional volume to the effusion. If it is enough, it will be drained and they have put me on octreotide (subcutaneous injections twice a day). Now I have to deal with a low pulse rate from the octreotide. Man o man..... Tom Galli 1 Link to comment Share on other sites More sharing options...
BridgetO Posted July 12, 2023 Share Posted July 12, 2023 You are truly an original, Ken! Both your chylothorax and your treatment (octreotide?) are things I've never heard of. I do hope you become less original soon. Tom Galli 1 Link to comment Share on other sites More sharing options...
KenHorse Posted July 12, 2023 Author Share Posted July 12, 2023 You and me both! I have a CT scan tomorrow (instead of the x-ray I was supposed to have today) due to what they're now calling a "loculated pleural effusion", probably caused by the continued chylothorax (before it was sealed). On the bright side, it has been 20 days since removal of any fluid from my chest and I'm still having no breathing issues and can still max out my IS although I have occasional burning and jabbing pain (that seems to be in my skin so I assume it's some sort of nerve thing) I tell ya. I have learned more about chest anatomy in the past 3 months than I ever thought I'd need to know! BridgetO and Tom Galli 2 Link to comment Share on other sites More sharing options...
Karen_L Posted July 14, 2023 Share Posted July 14, 2023 Who ever thought that surgery, brain MRIs, ultrasounds, etc. would become just more things on the schedule. You're a trouper, Ken, and the fact that this thing is sealed is such great news. And soon you will be able to enjoy whatever your favorite fat item is. For me, it would be really good bread and butter, but everyone has their own priorities. Keep up the great work! Tom Galli 1 Link to comment Share on other sites More sharing options...
KenHorse Posted July 18, 2023 Author Share Posted July 18, 2023 No results of the CT scan yet but I meat with my pulmonologist tomorrow morning to discuss where we are and (maybe) another thorecentisis. But I still remain without breathing issues and can still max out the IS with no difficulty. Tom Galli 1 Link to comment Share on other sites More sharing options...
KenHorse Posted July 23, 2023 Author Share Posted July 23, 2023 Yet another update (and hello Sunday readers!) While I am still waiting for the final interpretations of my CT scan, what my pulmonologist HAS told me is there are 2 effusions, although I'm not entirely clear about where 1 actually exists. 1 is where you'd expect I suppose - in the chest cavity itself and collecting along my diaphragm. The other is "between my heart and lung". Both on the right side of my chest. What I can't seem to get answers about (at least so far) is whether or not there is a connection between the 2 collections of fluid. As in, can the fluid flow between the two areas and is it affected by gravity, etc? A reasonable question to ask, yes? Maybe I'm just asking it wrong..... As neither is causing any symptoms and the one by my diaphragm is "1 to 2 cm", they've chosen to monitor it for a week or so more. I'm scheduled to finish my ultra low fat diet a week from tomorrow (July 31st) and I'm meeting with my pulmonologist again that day. The tentative plan is to reintroduce more fat into my diet and see if the fluid volume increases. Tom Galli 1 Link to comment Share on other sites More sharing options...
Tom Galli Posted July 24, 2023 Share Posted July 24, 2023 KenHorse, Thoracic fluid dynamics! I studied engineering fluid dynamics but the medical variety is way beyond my knowledge base. I have no idea if the two effusions are connected! I just wish they'd go away! Stay the course. Tom Link to comment Share on other sites More sharing options...
KenHorse Posted July 31, 2023 Author Share Posted July 31, 2023 Maybe this thread is finally drawing to a close? Met with both my pulmonologist and thoracic surgeon this morning and just came back from having another chest x-ray. It's been 2 days short of 6 weeks of my post op ultra low fat diet ( < 10 grams a day). If today's xray shows no increase in the fluid in my chest, that means the leak is finally sealed and I can return to a regular diet (although my gut tells me - pun is deliberate 😁 - I should ease back into it to minimize any eruption possibilities, if you know what I mean 🫢 As for the remaining fluid, I am told it is difficult for my body to reabsorb it but since it is asymptomatic (at least so far), it can be ignored or, if I chose, they could do a CT scan assisted thorcentisis. My pulmonologist "warned" me that could be traumatic and when I asked what he meant by that, he said I'd be awake and it would be done with a large needle. I laughed and told him as if this would be the worst thing to happen to me. "Numb me up and have at it" I said. BridgetO 1 Link to comment Share on other sites More sharing options...
KenHorse Posted July 31, 2023 Author Share Posted July 31, 2023 Update - X-ray looks stable (no increase in fluid). So I can slowly return to a regular diet over the next weeks...(apparently I have to up my fat intake slowly, still waiting for an explanation as to whether that's to allow my body to acclimate to increased fat intake or not to "shock" the repair by a sudden increase in chyle flow_ Tom Galli 1 Link to comment Share on other sites More sharing options...
Tom Galli Posted July 31, 2023 Share Posted July 31, 2023 Great news Ken! Stay the course. Tom Link to comment Share on other sites More sharing options...
KenHorse Posted August 1, 2023 Author Share Posted August 1, 2023 I wanna cheeseburger I tell ya! Tom Galli 1 Link to comment Share on other sites More sharing options...
BridgetO Posted August 1, 2023 Share Posted August 1, 2023 Fingers crossed for a cheeseburger soon! Tom Galli 1 Link to comment Share on other sites More sharing options...
KenHorse Posted August 3, 2023 Author Share Posted August 3, 2023 My surgeon (not pulmonologist) says the reason for the slow reintroduction of fat more to allow my body to absorb the leaked fluid and make sure the ligation area is well scarred. Figured I'd ask my surgeon as he is the "hands on" guy 😆 Tom Galli 1 Link to comment Share on other sites More sharing options...
KenHorse Posted August 6, 2023 Author Share Posted August 6, 2023 Just got done mowing the lawn (for the first time since I started this thread back in May) and I feel good! No SOB, no pain and no tiredness! A bit sweaty (my surgeon said I could do physical activity "as I can tolerate it". Well, I can tolerate a LOT! Good to be back in the swing. I'll take it! Tom Galli 1 Link to comment Share on other sites More sharing options...
Karen_L Posted August 7, 2023 Share Posted August 7, 2023 Yahoo! And I bet it feels great to see how good the lawn looks, too. Have they suggested any kind of lung rehab for you? I’ve found that my docs have had little knowledge of how to help me regain pulmonary fitness. My goals may be different that yours— before cancer, I was a distance bicyclist. After, the day I walk 2200 steps, I got an Olympic gold medal. 😉 But how to get myself reconditioned? I finally consulted my pulmonologist, who is a bit of an exercise physiology nerd and a cyclist himself, and he really helped me understand how to do this safely. Using his explanations, I developed a training program. After almost a year of chipping away at it, I’m thrilled to say I rode 60 miles a few days ago. My point is not that you should strive to be a cyclist!!! (I know the prospect horrifies people who aren’t lung patients. LOL) But if you have some goals for yourself, respiratory therapy is a specialty from which you might benefit quickly, with enough time to enjoy the rest of summer. Congrats on that lawn! Karen Link to comment Share on other sites More sharing options...
KenHorse Posted August 7, 2023 Author Share Posted August 7, 2023 I'm not a terribly physical guy, at least not in the sense of walking/running/biking! What I am is a car guy who loves working on my cars. Does that count as needing lung rehab? Tom Galli 1 Link to comment Share on other sites More sharing options...
KenHorse Posted August 18, 2023 Author Share Posted August 18, 2023 I think this is probably the last post I need to make on this issue but..... I'm on Week 2 of increasing my fat intake (by 20% per week) and am happy to report no respiratory symptom changes. I am breathing well, not out of breath with moderate activity and the twinges of pain have all but disappeared. Tom Galli 1 Link to comment Share on other sites More sharing options...
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