| Author | Subject: Mother on dialysis 1.5 yrs, dialysis time getting shorter |
| Lorri | Posted At 16:03:20 03/20/2002 Hi, everyone. My mother was diagnosed as needing dialysis (altho there was never a formal diagnosis of any particular kidney disease) and has been being dialysed 3x weekly. She started out with the catheter and 4 hrs, now she has the access in her wrist and she is able to stay on the machine for less and less time before her blood pressure plummets, she gets clammy, has severe leg cramps, and is so wiped out that she can't even drive herself home, and when she does get home she falls straight into bed. She started out with a dry weight of 110 kg, now she is at 99 kg. When she goes in for dialysis she has usually gained about 1 kg of fluid since the last dialysis, if that. She is currently able to tolerate 3 1/2 hrs of dialysis, and that not well--she's about to start making the techs take her off at 3 hrs. Is it possible for someone's kidneys to recover to the point they can dispense with dialysis altogether? She has never stopped making urine, and she makes lots--essentially a normal amount. The doctors don't seem to be very forthcoming with her clearances or anything, and any attempt to discuss the possibility of her recovering is not even addressed by them. Does anyone have any idea of what's going on? We're beginning to think that the dialysis center doesn't want to admit she may be getting better, because there would go their insurance and medicare income from her.... Lorri |
| sue | Re: Mother on dialysis 1.5 yrs, dialysis time getting shorter (Currently 0 replies) Posted At 10:57:55 03/21/2002 I read your letter about your mother. I think you should be demanding some answers. Depending what the kidney problems was/is it is possible to heal.That is if it was an acute attack. I had an ecoli infection in 1989 and was put on dialysis for 2 mths. I felt pretty sick on it too. I threw up all the time plus I did crash a couple of times. I got off of it because I had an infection in my catheter site. They took it out and was going to put another one in when another doctor suggested leaving it out to see how I faired. I was scared stiff. I was in hospital for 2 weeks without it. Then I was able to go home and start as an outpatient...with no dialysis. I had a strict diet for a few years. But I gained up to about 50% of my function back. Unfortunately I am now having trouble again and will be facing dialysis again but I am so grateful that I had 13 years free. I would demand some answers or at least a second opinion. Then make your decisions based on that. You have the right to know exactly what you have and why you are having treatment plus alternative options. Good luck. |
| Julie W. | Re: Mother on dialysis 1.5 yrs, dialysis time getting shorter (Currently 0 replies) Posted At 06:53:29 03/22/2002 Dear Lorri, At the very least, you and your mother should insist that the dialysis unit staff and/or the doctors work on making dialysis more comfortable for your mother. There are ways to reduce the low blood pressure, cramping, etc. Some suggestions are listed in the Kidney Disease Outcomes Quality Initiative, of the National Kidney Foundation, Guidelines 15 and 16 on Hemodialysis Adequacey. http://www.kidney.org/professionals/doqi/guidelines/doqiuphd_vi.html#15 You should also know your mother's clearances (URR or Kt/V). If she is not getting good clearances, then it is even more important to make the dialysis better tolerated so that she can stay on long enough to get good clearances! Another possible resource is the dialysis_support email group at http://groups.yahoo.com/group/dialysis_support/ The people in the group have a lot of combined experience with dialysis and trying to make it more effective, working with doctors and dialysis unit staff to improve treatment, etc. They can offer some suggestions. One woman in that group who has polycystic kidney disease and continues to urinate in normal quantities also has a lot of difficulty with low blood pressure and "crashing" at the end of dialysis. Checking your mother's pre-dialysis treatment levels of BUN (blood urea nitrogen) and creatinine might help to give you some insight into whether her own kidney function is improving. I would guess that her kidney function is not improving, from your description, but you certainly should be entitled to a straight answer. Sounds like some improvement in communication with the medical team is the most important thing in her case. Best Wishes, Julie |
| beth W | Re: Mother on dialysis 1.5 yrs, dialysis time getting shorter (Currently 0 replies) Posted At 20:04:55 03/22/2002 I think it is important for you and your mother to understand more about the lab tests that your mother's dialysis clinic probably does monthly. Most clinic dietitians discuss lab results with patients monthly and send home a "report card" with key results. Other blood tests may be run that are not reported on the "report card" but are recorded in the patient's medical record. Module 7 on Kidney School (www.kidneyschool.org) explains lab tests that clinics run. If your mother's lab results are too high or too low, this module of Kidney School can help you know what to do to improve the results. Is your mother eating better than she was when the clinic estimated her "dry weight?" If so and the staff don't know this, they could be trying to take off too much weight. I knew patients that experienced symptoms such as low blood pressure, clammy hands, and cramping when their dry weight was estimated too low. With your mother's approval, I'd suggest you ask for a family conference with the nephrologist and the rest of the dialysis team. I'd tell them that you want to know what is happening with her kidney function, what the likelihood is that she could recover kidney function, and what can be done to make her dialysis experience less painful while she's doing it and less of a drain on her quality of life at home. I wish you well. |
| Deanna | Re: Mother on dialysis 1.5 yrs, dialysis time getting shorter (Currently 0 replies) Posted At 08:59:58 10/08/2002 Lorri, I know all to well what you are experiencing right now. My mother is on kidney dialysis as well. She was diagnosed 11 years ago. A woman who was once so vibrant is now fighting for her life.Diagnosed at the age of 36 she was 260 lbs the majority of her life. She is now down to 135 lbs. Seeing as though your Mom has been ill for a short time, there are other methods of dialysis. My Mom has been on perritoneal dialysis which consists of 4 1 hour exchanges a day at home. Although she is unable to work, she is more comfortable with the fluids going into her stomache to cleanse the toxins in her body. She also has a fear of needles and can't sit for long periods of time. She has become a model patient for others. Pehaps you should suggest this method to her Drs. It could be a more comforting fit for her. Should you ever need an ear or more info, don't hesitate to contact me. |