First of all, ladies, I wanted to send out a very big heartfelt thank you for all of your feedback and concern. Without your input and experiences I don't know how much longer I would have had to put up with this really awful experience that is now I hope at least over with for the time being. I had no idea what exactly I was dealing with but when I found many of my experiences paralleled what you were suffering through it gave me the confidence I needed to stay put and expect the right kind of care. There was far too long a delay in getting the diagnosis I needed and I should not have had to deal with it but it would have been much longer and far more painful if I had not been able to access this lovely community of cancer survivors who have been so gracious and giving sharing your stories.
Second, after learning of your many shared experiences I was very careful to be very deliberate about what I had experienced with both the hospice and Hospital team. I can't be too hard on someone who doesn't have a relative experience to mine and the fact is like anyone they probably just ran to Wikipedia to see if my complaints were valid. Like some of the stories I read from you, a lot of my complaints just kept being blamed on the advancing tumors end cancer,espite the fact that I knew that it was not directly related to the tumor. That I think was one of my biggest complaints about this whole situation. The simplest and easiest explanation when a patient is dealing with tumors seems to be blame it on the tumor! After all this, when I was able to speak with medical staff I pretty much said as much. For one thing, there was this horrible bruising stabbing pain under my shoulder blade that got worse and worse the more bloated I became but I was repeatedly told it had to do with the tumors even though I kept explaining to them that the timing just didn't make sense. Same situation with the excessive bloating and abdominal cramping and breathing. The first instinct of just about everyone was to remind me that I was dealing with abdominal and lung tumors and that that was very likely the cause. It is also my experience and probably yours as well that medical personnel didn't quite comprehend how very painful this condition is. And last but not least, I noticed, like me, several ascites suffers also had doctors put too much emphasis on the image they receive from the ultrasound as a prediction of what's the patient was experiencing and gave the ultrasound sound image too much weight in determining whether treatment was needed. As it turns out, regardless of the ultrasound, like myself, several of us had a far greater quantity of ascites then was predicted and due to this, there was an unnecessary delay in our treatment of the ascites. The pain and discomfort of ascites and pleural effusions is pretty much nearly the same. My five experiences with fluid build up and reading about your experiences tells me that the pain is gradual up until a certain point and then the discomfort and severity of the pain escalates exponentially so I hope by sharing this if you're dealing with ascites, I would definitely urge you to be forceful and pushy because you can avoid some serious pain and discomfort if you are able to drain that fluid out before it hit the critical point. After that point so much has been shifted and stretched and twisted, that even after the fluid is removed the pain remains while the muscles and tissues get back to their normal state.
UPDATE:
The hospice team was unable to get permission to provide a paracentesis. If I had admitted myself hospice after already having had a paracentesis there would have been a protocol in place and this would not have been as problematic but since I had not even had an ascites diagnosis, the hospice service was reluctant to make that diagnosis themself and just decided to treat it with medicine. There was a long delay in even getting my condition looked at so I would say that in the future if I say something similar, and it takes longer than a week to get hospice to act, I will just take myself to the emergency room ASAP and do what I did this time which is refused to leave until they can make a determination about where the swelling and pain is coming from.
The bigger the emergency room or the more likely they are to have the resources to help with specialized needs. My brother-in-law who is an ER doctor said to choose the emergency room I go to with discretion. I usually choose based on how busy it is but he said it won't do you much good to go to the emergency room if they don't have the resources there to help you because they're unlikely to comprehend the significance of your symptoms and will be more likely to send you on your way with an aspirin. So I called ahead and make sure the emergency room I chose had a gastroenterologist and a pulmonologist available at the time I went in. Even with that, the ER did a an ultrasound also and like hospice oh, they also did not listen to my symptoms as much as they paid attention to the ultrasound and they were brother reluctant to diagnose the need for a paracentesis. The OnStaff radiologist predicted that I only had 500 mL of fluid and that this was not enough to justify a paracentesis. Thankfully, I had all of your ladies experiences handy and I was able to insist on being hospitalized. This was the second of four times that the ultrasound misrepresented my symptoms. If you feel like you're not getting the help you need I wouldn't put it off if you feel like you are dealing with ascites, particularly if you're extraordinarily uncomfortable and miserable- don't worry about looking flaky or hurting people's feelings, just insist on getting looked at by someone else for in my case, express your determination not to leave until they do identify the source of bloating and misery, particularly if the symptoms have just come up in virtually a week or two out of nowhere. Yes it could be a tumor but it's more likely what you think it is.
I was really concerned that the doctor might not agree with me and agree to a paracentesis and, I don't think necessarily agreed with me so much as permitted me to have my way because I did point out that it didn't matter if there was 100 milliliters of fluid or 7,000, I was bitterly uncomfortable and that I appreciated the opportunity to know for sure if there was fluid in my stomach that was part of the equation. I think she was more concerned that I not get too excited that the paracentesis would release me of all my suffering. I think she really believed that all of the swelling was due to tumors.
I do know that everyone was surprised that instead of they're predicted 500ml, the initial drain produced 1300 milliliters! Not only that, the CT scan follow up show there was still more fluid! After the first paracentesis, I still had some serious residual pain, stabbing pain underneath and surrounding the bottom of my right shoulder blade and my right flank. Very similar to a kidney stone but not quite. And the right side of my abdomen just ached. There was very definitely a significant release of pressure but I still felt more of the same so when I heard there was more fluid I wasn't surprised.
The decision was made to put in a drain and take out my no longer needed for ex catheter and 2 days later I was back on the chopping block and they removed another 2300 milliliters of fluid. Once all that fluid was gone I admit I was in a whole lot of pain but I had been expecting it based on the forced thoracentesis has I'd had. I don't know what others experiences were following their paracentesis but mine was pretty stinky, although the pressure was gone and those particular pains or gone I still ended up dealing with a lot of just feeling like I'd had the you-know-what kicked out of me and all of my muscles were just burning and throbbing and bruised and miserable for the next 15 hours or so. We got the pain control adjusted and everything is fine now. I hope my experience is and everyone else's help someone else if they come to this website and I wish you all the best of health even though I know we are all going through some pretty rough challenges. Keeping my head up!
Big Decisions... I need to hear any experience you’ve had
Some other infusion ideas
Update i did think of not posting but i said i would 
Life is for living - I now get it...
