| Author | Subject: New to dialysis |
| Chuck | Posted At 12:17:37 01/06/2003 Hi, I was thrust into the world of dialysis rather abruptly. At the age of 50, after 25 years of running several miles/day, 4 or 5 days a week, 2 marathons, and a run up Mt. Washington in NH, I was going for some life insurance when I was told I was too anemic. In searching for the cause of the anemia, my doctor found that I had very large oncocytoma tumors on both kidneys. These are typically slow-growing and non-cancerous. I was told they were probably there a long time and it would probably be a long time before I faced anything serious. I got second and third opinions at some of the world's best known hospitals in Boston. Everyone agreed with the diagnosis. Needless to say, 7 months later I started having blood in my urine and blood clots in my bladder (I actually had run 5 miles the day before the bleeding started). After a few bouts of this I was hopsitalized and was told that the kidneys had to come out. During surgery it was discovered that I indeed had some renal cell carcinoma. Some of the cells had metasticized to bone in my right femur. That caused more surgery to remove the tumor and to "rod" the femur. I am still recovering from both surgeries. I go to dialysis 3 times a week and I often experience severe headaches. The doctors and nurses have tried several things, but so far nothing has eliminated the headaches completely. I follow the diet religiously, and as soon as I am able, I will be back to an exercise regiment. Currently I am on disability but I plan to go back to work, even if it's only part-time, in the near future. Thank you for giving us a place to tell our stories. I would love to hear from others. Chuck |
| Beth Witten | Re: New to dialysis (Currently 0 replies) Posted At 23:02:58 01/10/2003 I'm sorry to hear about your recent health problems and genuinely hope that you feel better soon. In the 18 years that I worked as a dialysis social worker, I knew several patients who had headaches on dialysis. Thank goodness, fewer people today have them than used to. I suspect it may be because dialysis machines allow staff to set the amount of sodium in the blood at different hours of dialysis (sodium modeling), use of bicarbonate vs. acetate dialysis, or it may be because new patients are started on dialysis slowly. I assume that the staff at your dialysis clinic have considered high blood pressure, low sodium levels in your blood, dialysis disequilibrium (shifts of fluid in the brain), etc. as causes of your headaches. You can read about the causes, signs, and treatment of dialysis disequilibrium at www.kidneydoctor.com/equilib.htm. According to this web site, dialysis disequilibrium is more common in new hemodialysis patients with high BUNs. It recommends shorter (2 hours) and more frequent treatments to gradually reduce BUN rather than doing the typical 4 hours of dialysis at high blood flow rates. It also suggests pre-treating the patient with certain medications and/or using peritoneal vs. hemodialysis. Although not common, headaches can be a side-effect of erythropoietin (EPO) and sometimes they are relieved by reducing or stopping EPO. However, if you don't get EPO, you may be anemic and have more trouble exercising and working. I am very glad that you have started to set goals for yourself so far as exercising and returning to work. Getting in the best physical condition possible can help you tolerate work easier. Life Options has an exercise booklet and video. You can download the booklet by looking for print materials on www.lifeoptions.org and you can order the video by calling (800) 468-7777. Vocational Rehabilitation (VR) is an agency that can assess your work interests, skills, history, etc. and help you with education, training, or job placement. Your dialysis social worker should be able to help link you with the local VR agency. Your dialysis facility can help help make it easier for you to work by changing your dialysis shift so you don't have to miss any more work than you need to and/or offering you one of the home dialysis options. Staff can also help you educate employers about kidney disease and patients' potential to work. If you haven't already found it, you might want to check out the Dialysis_support group at http://groups.yahoo.com/group/dialysis_support/. This is a very active listserv with over 350 dialysis and transplant patient and family subscribers. I wish you well. |
| Chuck | Re: New to dialysis (Currently 0 replies) Posted At 10:54:56 01/16/2003 Thank you for all of your valuable information, Beth. I appreciate it very much. Most of the causes of the headaches that you talk about have been discussed, with the exception of shorter dialysis periods with more frequent days. I have thought about that very often, but didn't think it was feasible. I'll ask about it today when I go in. One of the things that worked for a couple of sessions was giving me the Procrit subcutaneously rather than via IV. I thought that was it, but after 2 successful treatments, the headache came right back. I will definitely check out the resources you've mentioned, and again I thank you for all of the information. Thank you, Chuck |
| Audrey | Re: New to dialysis (Currently 0 replies) Posted At 17:53:54 04/26/2003 My mom just started dialysis last week and now she's back in the hospital because of an infection and hip problems. She has had loss of her bowels twice and goes into a kind of daze off and on. Could these be side effects from the dialysis? My family is very worried. Shouldn't we call in a neurologist? |
| Beth Witten | Re: New to dialysis (Currently 0 replies) Posted At 22:40:49 04/28/2003 You don't say where the infection is, but if it's related to her dialysis access, she may not have gotten good dialysis for a while. The toxins that build up in someone's blood when their kidneys aren't working plus the infection could cause her to be confused. If she's had the bowel problems while in the hospital, there can be several factor contributing to this: having hip problems might make it hard for her to get out of bed to the bathroom and nurses may not answer call buttons quickly enough if she's taking medications that could make her bowels loose. I would definitely ask the doctor who admitted her what could be causing these symptoms. Dialysis doesn't generally cause these types of problems, although uremia (toxins in the blood removed by dialysis) can cause mental confusion. Infections can sometimes cause mental confusion. Like you said, a neurologist would be the best person to evaluate and diagnose what's going on with your mom neurologically and what can be done to treat it. |
| Zeina | Re: New to dialysis (Currently 0 replies) Posted At 08:41:15 05/16/2003 My mom is making dialysis from a year, from about 3 months, she started to suffer from a headache starts after two hours from the starting of the dialysing, after that she returns home & the headache increases & she feels harm in her hands, leg & through. At hospital they have changed the heparin by priming fluid, but the headache is still coming. Do you have an idea about the reason for headache? Do you think that it's a good idea to change the heparin by priming? |
| Beth Witten | Re: New to dialysis (Currently 0 replies) Posted At 16:56:28 05/22/2003 Headaches can be caused by many things including high blood pressure, allergy to chemicals in the dialyzer and blood tubing, drinking too much and having to take off too much fluid during dialysis, lowering the sodium in the blood too fast, and even stress. Saline solution is usually used to prime the blood lines and dialyzer. This solution is used to remove air, to remove any of the disinfectant put in the dialyzer if dialyzers are reused, to flush any plasticizers (chemicals) the maker of the dialyzer and blood lines use to make the fibers in the dialyzer and the blood lines flexible. Heparin can be added to the priming solution. The amount depends on why it's used. I'd suggest you ask your mom's doctor what could be causing her headaches, what she can do or what the staff can to do help her feel better. |