I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: komomai on March 01, 2014, 08:13:48 AM
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Thought I would post what's been going on since Dec. I went on a vacation back to Hawaii set up my dialysis at a clinic. The first week there I caught a cold and had a constant cough and a runny nose. I also started dropping weight still kept up my 3 times a week in center hemo. By New Year's Day I was in the ER with shortness of breath, they told me it was pneumonia and give me 6 days of pills. Flew back to Okinawa still having issues with breathing, started up my hemo at the hospital in Okinawa. The doctors there have already drained my lungs twice, found no infections, no virus. They also checked out my heart functions and said I was good. I've asked them if I cold start dialysis 6 times week, Today was my 4th straight day and after treatment they did an X Ray will it's back fluid in the lungs. :banghead; I will continue doing my daily dialysis and hope that the fluid will get fixed. Other than being short of breath, I feel great. Oh yeah my daily treatments I 'm setting up and priming the machine, hooking myself up and my wife comes in and disconnects me. Since I use a catheter it's simple to hook up. I will soon be their first patient to do home dialysis, wish me luck. :thumbup;
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My wife had a similar experience last year. She also was using a catheter back then . We never figured out where the fluid came from or why exactly. She had the fliud drained and the catheter removed and went with her fistula which was ready to use. That was the end of it. My suspicion is the catheter is a nidus or focus of inflammation and can cause the fluid or it caused it by pushing blood hard during dialysis into the vena cava and then the heart. This is the right side of the heart and then into the lungs from the heart. I beleive the catheter is the underlying cause of all of this. Do you have a fistula ? if not , why?
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My husband, bless him had the same problem, he was on apd. One of his lungs kept filling up and he was really breathless. He had it drained out three times and it kept coming back after about 2 months, so they did a, can not remember what it was called . Basically they drained it out and filled the bottom of his lung with a clinical talc powder, it goes in wet and sets. Seals up leaks. That did the job. I wish I could remember what it was called, some thing like a plural infarcsion.
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Aloha obsidianom, that is something to think about, I've been told that my veins in my arms are too small, but I am discussing this more with my doctor as I want to do my own sticking for home dialysis. Right now by doing 6 days a week in clinic at 3 hours I'm feeling great, just the fluid in the lungs. My Japanese doctor told me that all the patients under Japanese National Health Insurance can't do more than 3 times per week unless they want to pay out of pocket. That's why some of them do up to 8 hours a session, insurance covers 6 hours and the hospital has to cover the rest. My thoughts on this is if more dialysis gives you a better treatment and quality of life than it seems to me the bottom line is not the patient but cost. Mahalo for your suggestions and help. :thumbup;
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My wife has very small veins and only one arm(right) has even normal anatomy but we had a fistula created. The first vascular surgeon said he couldnt do a fistula due to the small veins but we went out of state to an expert who did create a nice fistula in her lower forearm with 2 surgeries. He used a patch te second time to widen the original fistuala . It is quite large now. My wife is tiny(110 pounds/ 50 kg ) so even with her tiny size and veins it was doable. You just need to find a vascular surgeon who is skilled in difficult cases.
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Aloha obsidianom, that is something to think about, I've been told that my veins in my arms are too small, but I am discussing this more with my doctor as I want to do my own sticking for home dialysis. Right now by doing 6 days a week in clinic at 3 hours I'm feeling great, just the fluid in the lungs. My Japanese doctor told me that all the patients under Japanese National Health Insurance can't do more than 3 times per week unless they want to pay out of pocket. That's why some of them do up to 8 hours a session, insurance covers 6 hours and the hospital has to cover the rest. My thoughts on this is if more dialysis gives you a better treatment and quality of life than it seems to me the bottom line is not the patient but cost. Mahalo for your suggestions and help. :thumbup;
Actually, 8 hours is better for you than 3 every day. The longer session is believed to remove larger molecules. I take no phosphate or potasium meds
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Aloha lanch,
So are you doing home hemodialysis and at night nocturnal? That would be the only way I could stand to be hooked up to the machine for 8 hours. I am doing 3 hours x 6 days. I talked my doctor into it as I'm trying to be their first home hemodialysis patient, I just told him let me try it in the hospital first to see if it would work, so far I'm feeling great, sleeping great and have more energy at work. Plus I get to set up and prime the machine, and my wife comes in to disconnect and clean the machine under the nurses supervision. :welcomesign;
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Home hemo for 10hrs at 225 QB. Profiling UF at 400ml per hr for 2hrs then the remaining over 8hrs. Usually works out at 80 to 130ml per hr. Beware the profiling can be dangerous if not respected and a patient needs to know their body very well for picking up when its not happy.
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Aloha lanch,
So are you doing home hemodialysis and at night nocturnal? That would be the only way I could stand to be hooked up to the machine for 8 hours. I am doing 3 hours x 6 days. I talked my doctor into it as I'm trying to be their first home hemodialysis patient, I just told him let me try it in the hospital first to see if it would work, so far I'm feeling great, sleeping great and have more energy at work. Plus I get to set up and prime the machine, and my wife comes in to disconnect and clean the machine under the nurses supervision. :welcomesign;
3 hours at 6 days is excellant. You are doing basically what we do on Nxstage. Glad you are feeling better. Keep up the good work.
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Check out our calculator that was reviewed by best practice advocate doctors. Dialysis is all about time on machine and not pump speed. Doesn't really matter how fast you go as there is no toxin removal when you stop. If I could strap a machine to my back I'd wear one all day as thats the only substitute for a kidney
https://kiwimedtec.com/pub/rkf_calculator.php