Update:- good news: l don't need pericardial effusion window surgery.
- l did get a pleur x catheter placed last Friday. The procedure went well. I've had 2 drainage at home so far.
- l would appreciate showering advice. I wrapped the dressing in place and seal plastic wrap but water still seeped into the dressing and it had to be changed.
- l am trying to figure out the right amount of fluid to take out - so far the drainage are not making my life any better. I can choose to have the catheter removed if it doesn't make my life better (have to figure out that time line).
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NPmary
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Hi Mary. So happy to hear that you have your Pleurx catheter inserted successfully. When I still worked we always advised our patients with any type of drain such as PICC, Pleurx etc long-term to shower using a waterproof disposable moisture barrier dressing such as shower guard. They sell them on Amazon in 9X9, 7x7 and 10x12 sizes so if either size would work to totally cover your wound and drain. They are single use so not cheap but they really do work. Good luck.
How much drainage are you withdrawing with each drainage? If you aren't seeing benefit perhaps you aren't draining enough. What did your oncology team advise?
The first time l let the nurse drain 975ml and didn't stop when l had pain because l knew there was so much fluid. The next time l stopped at 700ml as soon as l had pain. The next time l think l will stop at 300 or 400 before l have pain. The doc said the right amount could be as low as 200 or 300. I think there is so much pain because the lung is "trapped" it doesn't expand so there is very little working lung on the right side and so much low pressure in the pleura that it hurts.
Thanks for the explanation of drainage Mary. Even though there is a lot of fluid to eventually drain I don't think large volumes at one time is best either. It doesn't accumulate in a day so neither should the drainage be looked at that way. You will find what is your acceptable normal....I think 300-400 is reasonable when first beginning. I know most patients are trained to drain themselves...not sure if that will be you? I know from your background you have the skill but I also know that things are always different when it is happening to you. Go slow and I think pre-medicating for pain might be a good way to go. Take care.
Thank you for advise and kind words.My daughter is supposed to do the drainage and dressing on Saturday with a nurse watching.
I didn't like the nurse today and he didn't make the tegaderm occlusive! I just put paper tape on it to close it up.
He drained 300 today - I wanted him to stop sooner and he refused!
I hesitate to complain because he is the case manager.
I hope my daughter takes over soon even though I know it's one more thing for her.
I didn't expect things to get so hard so soon.
Once this is all figured out I plan to officially start hospice. I just want to get more functional and finish some sewing projects. I am making a tee shirt quilt with my old nursing tee shirts. My crazy quilt will probably never get finished (by me).
I am a bit sad and can't really share that with anyone. I miss my best friend, Laurie so much (she died while in hospice last June 10th. We used to text and share everything every day.
Love you guys and wish everyone the best of outcomes, all-ways. 💜🪷💜
Mary I'm so sorry that you lost your dear friend and confidant. Did she die from cancer as well? Since I have started this journey(2018) I have lost 5 dear friends from MBC and it certainly keeps the thought alive in my mind what lies ahead for me. Since you have chosen to stop treatment and go on hospice care is a big decision....but I think that reasoning comes from your NP background. I think many lay people just think they can go from treatment to treatment and it will continue as that. We both know that's not true and even though I'm not at that point yet I do live in an area where MAID is legal so that option is there for me if I choose.
As for not calling out that nurse you are better than me. Always remember you are #1 and if you told him to stop he should have. I think some nurses get thoracenteses mixed up with Pleurx and expect that draining larger volumes will make the patient better in the end.....so not true especially when your pleural space is impaired in volume.
Please know that we are always here when you need to get things off your chest. I know it is hard to say those things to family members....they love us but really truly don't understand all the things we will have to endure and I hope they never ever are in that position. Take care and I am sending you a (gentle) virtual hug. I hope your daughter does well doing the drainage tomorrow and then you can truly control the show at drainage times.
Thank you so much, you really do live up to your name (awesome!). Such kind words and good reminders and knowledge. I will be saving this email to read it again as needed.My friend didn't have cancer but the past few years she was certainly in worse shape than me (l knew she was slowly dying her last year) she had had a couple of strokes. Redick I loudly high blood pressure, diabetes and finally heart failure. She was the funniest best person you can imagine.
I just read this post and am saddened to hear you are planning at some point to start hospice. I've made my peace with accepting certain treatments and passing on others. It sounds like you feel the same. I am thinking of you making that T shirt quilt and feel certain that you will finish that and your "crazy quilt".. In my heart NPmary, always.
I had my catheter in for 8 months and drained off initially a litre every other day but as the chemo started working it was less and less ... I would say the average was 650ml every other day. Hope this helps xxx
I'm pleased that your Pleurex catheter insertion went well. When I had mine the consultant told me not to drain more than 500 ml 3 x a week. The district nurses did the draining, and could not drain more than 475 ml before the pain started. After a couple of weeks they reduced the visits to twice a week draining no more than 475 ml each time. After about three months they only had to come once a week as the fluid had reduced and they were only draining around 300 ml each time. When only 200 ml was being drained each week for about six months I was able to have the drain removed. The nurses always drained slowly and stopped as soon as the pain started. I began to feel the benefits after the first few weeks. I tried having showers but the first one I had, the dressing got soaked so after that I used a seat in the bath making sure the water didn't come up to the dressing, or I had strip washes. I hope the draining gets better and you begin to start feeling the benefits. Best wishes.
Hi, I was on, and still am on, Letrozole & Ibrance when I had the drain. I had the drain in for 12 months. I found getting the nurses to drain slowly and stop when the pain started helped a lot. I had to take paracetamols, and rest for a few hours after draining. I'm hope things improve for you.
Having had drains for recent cardiac surgery and experience of the pain that I little fluid can bring you have my utmost sympathy. I hope you find some useful pleasure giving distractions to offset what I hope is temporary discomfort Much love.
My MBC symptoms started with a malignant pleural effusion, over 1200ccc of fluid with subsequent Pleurx drain. I had a visiting nurse drain it once a week but the fluid removed averaged between 200-300cc every week. After 5 months the surgeon removed it and it sealed itself off. He said a tract developed so no more than 200cc plus would ever be found and I've been drain free for over 4 months. I was fortunate for this to happen. Sometimes I feel I'm just waiting for the next complication.
Your feeling of sometimes waiting for the next complication is something that most (maybe all of us experience with MBC). I'm sorry that you have to deal with this.I am very glad for your good results with the pleur x catheter.
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