I am really glad that you asked and hope that you get the information that you need about how to provide her diet the best diet so she can feel better and do more. Diet is a very important part of how well she’ll do. You might want to share the Kidney School site with your mother’s doctor. It might help him/her help someone else.
EPO stands for erythropoietin. Erythropoietin is a hormone produced by the kidneys that tells the bone marrow when to make red blood cells to replace those that have died. When kidneys don’t work right, the body doesn’t make its own EPO. Scientists have figured out how to make EPO. In the U.S. EPO is sold as brand names Epogen, Procrit, or Aranesp. It may be called something else in your country. You might want to read the Kidney School module on Anemia and Kidney Disease (module 6).
Hey Ben
It’s quite good for somtime. Please don’t feel otherwise again feeling some trouble, my moms’ fluid that is coming out is qute clear, I can read the letter through it but i tlooks quite reddish in color.
Few days ago alot of fibers were coming with the fluid then pd nurse told us to use heparin and I used it 3 days continuously utill the fibre stops coming but the color of the fluid has been changed,
If the PD solution is reddish, it could have blood cells in it. I don’t remember how old your mother is, but some women notice that they have some blood in their PD solution around the time that they ovulate or when they have their period. Does she have any pain? If so, it’s possible that the catheter is rubbing causing some bleeding. Perhaps the amount of heparin that she got made her tissues bleed a little. Tell the nurse what you’ve told us and ask him/her what could be causing the bloody solution.
Back with some more questions regarding fluid color. For last 10 days mom’s drained fluid is not clear. If we leave the fluid for an hour then some white paste like product store at the bottom of the fluid. Then the color of the fluid is ok. I don’t know why this is happening. We asked doctor, he gave us antibotic injection. We will start from today. But he is saying that color might not be ok in future. We are not sure what he meant by that. Can you please explain what might cause this? Is she lossing calcium or protein? Thanks.
It’s probably best that you ask the doctor what he meant. I’m actually wondering if the “paste like” product might be strands of fibrin, which is a type of protein that is usually harmless (but can block the catheter sometimes). It’s very good that you are keeping a close eye on the color of the fluid and alerting the doctor when it doesn’t look right–that’s just what you should be doing.
Has the doctor or the nurse seen any of the drain bags that look the way you describe. Is it possible to show a bag like this to one or both of them. If they don’t think what you see in the bag is fibrin, they may want to do a culture on the solution to see if your mother has peritonitis, an infection of the peritoneal lining that is usually caused if there is a problem with the technique used to make the connection to the bag (breathing on the bag without a mask, not washing the hands thoroughly enough, not cleaning the exit site thoroughly enough, touching supplies incorrectly, etc.). In the U.S. patients who have peritonitis are usually taught to inject antibiotic into the bag of solution to clear up peritonitis. It’s also important to know what bacteria is causing peritonitis because 1) you can tell where the bacteria is from (skin, nose, etc.) and what antibiotic will kill the bacteria. Knowing where the bacteria is from, can help the nurse know if he/she needs to do more teaching on how to avoid getting peritonitis again. Knowing the type of antibiotic that will kill the bacteria is important to clear it up fast so the peritoneal membrane isn’t damaged.
Back with major Problem, Don’t igonre viewing this huge post
Hello Ben,
It’s been quite long since my last posting.I didn’t get enough time to update my posting or get any sugeestion.
It’s Mom all through my mind. And its my last hope that i would get some suggestion from you. Since the last posting she’s got several peritontis attack.
And everytime I manage to keep it clean through antibioitics.I must tell you that none of the nurses nor the doctor had seen her after operation been made from the hospital.As the hospital is not in my city and I couldn’t take her
because she’s got paralysis in one side fully but I managed to keep informed them through the phone and told them the condition. Mean while few months ago again she was injured with brain stroke, she recovered after three days slowly. At that time I didn’t stopped the
dialysis but continued. She was fine the but unfortunately her body condition was deteroiting that is she was not getting any physical strength. Don’t know why? Doctor couldn’t help us except saying that se will be alright. But she didn’t recovered as per capd patients do.
Hb level in her blood was getting lower. We could hardly manage blood which is B-, one of the rare group in here. Still i found one bag B- blood and given to mom. I must tell body condition is still not good and geeting worse. We found her Hb level 8 and S.creatitine 5.1. I
don’t understand how it is satisfactory but the doctor told me it is satisfactory result.
Now few weeks ago a serious condition occured at the palce of her operation point in belly some kind of water began to store as a result the skin was bulking, Finally it brust out with water. At this condition when I do the dialysis of her water comes trhough that point(for your understandin I’m attaching some pic of that place).
As per instruction we stopped the dialysis and continued antibiotics for seven days and we star the dialysis. I wwas fine after two days of starting dialysis same condition began to occur and now the doctor is not helping us he is telling us to take her to the hospital where the previous operation was made in another city. Actually he don’t want give any
suggestion without money. This is what happen in our country bangladesh. Now our family doctor who is expert in medicine told us judging on moms physical condition that it will to risky to move her from one palce to another. He gave her(Gatifloxacin 400 mg daily one and Flucloxacillin 500 mg three times in day inorder treat that palce so we can do the dialysis. Dialysis is topped now.
My request if any thing could be done so that we could do the dialysis. I know i can’t save her but still I want to try till her death so that she suffers less. Moms kidney doctor is not helping so I’ve no choice rather ask for your suugesstion.
Please do not through away viewing this huge post.
It sounds like there are several things going on with your mother.
The strands or white stuff in the drain bag is fibrin, and the heparin will keep it from clumping together, which is important, because you don’t want it to clot the catheter. You might try using the heparin in the overnight bag, once a day as long as there is still some fibrin in the drainage.
The reddish color of the dialysate is from red blood cells. This happens after surgery, or there can be bleeding from infection or trauma or chemical irritation.
The photos look as if there is an subcutaneous infection - an infection in the fatty tissue along the catheter. It sounds like there was “leak” where the dialysis solution seeped along the catheter from the abdomen into the muscle and fat. This often leads to an infection. And once you have an open wound as shown in the photos, there can be more contamination and more infection. Once the infection is in the catheter cuffs, it is very hard to cure, because the cuffs don’t have a direct blood supply, so the antibiotic doesn’t get to the infection in the cuff. A chronic infection also contributes to the “low blood”.
I think the best treatment would be for your mother to go back to the surgeon who put in the catheter.
If that is not possible you might try to do dialysis only with your mother resting in bed and reduce the volume of the dialysis exchange to see if lowering the pressure in her abdomen will reduce or stop the leak.
We usually wait at least 2 weeks without dialysis hoping for a leak to heal. That is, for the opening that allows the leak to heal and close. You might try this again, but you need to check with your doctors to see if your mother can do ok without dialysis for that length of time. You might also need to be careful what she eats and how much she drinks while she is off dialysis.
Finally, you need to continue to treat any infection - either peritonitis, or an infection in the track along the catheter.
Your mother is fortunate to have someone who is so concerned about her and takes such good care of her.
My best wishes as you continue to deal with this very complicated situation. - A PD nurse from the USA
It sounds like your mom is same size as my mother. She was on PD for five years and recently changed to Home Hemo option. Like you and your mother, we were very new to the whole dialysis thing. So at after looking into things, we chose PD and exception for first 2 or 3 times, my mother did not handle the PD well at all. She counldn’t handle the volume. The clinic suggest 2000 ltr 6 or 7 cycles each night. She was only able to handle 1 ltr which was not nearly enough to provde adequate dialysis for her. During this period, she had problems with swelling, vomitting, loss of appetite, phosphorus, you name the issues, we had it. Toward the end of it, she was doing 1300 volume 7 or 8 cycles, 10 hours each night. She still had all those health issues.
We are learning that there are no perfect solutions, however, we learned a year ago of the Home hemo dialysis using a machine called NxStage. After convincing her to try it for over a year period, we just started and realized that she should have been on the hemo all along. First, size of her body is too small to handle the correct volume to receive adquate dialysis.
After the surgery for Fistula, we began the home hemo training and hours are shorter, 2 to 3 hours, five times a week, and she looks different already. We are hoping to complete the training and do it at home, six days a week.
There are not perfect solutions, however, for our mother is also 4.9" tall and was 46 kg. You can email me at: helen.kim12@yahoo.com if you need to talk to someone. Hope this helps. Thanks.