Questions-New to Dialysis

[4 my dad]

Hi,
Our family is new to all of this as my dad had a temp cath placed in his neck this past Saturday. He received his 1st dialysis at the same time and will have his 2nd one tonight. I don't know all of the terminology, but hopefully my questions will make sense.
1st - He has been very weak for a few weeks now. How long does it typically take for your energy level to go back up? Will it return in full or does it depend on the patient?
2nd - He has lost about 15 lbs (I think) in the last 2 weeks and does not have an appetite, when will it return?
3rd - He has had very strong urges to urinate (he says they are painful) but is unable to go. He gets the urge about every hour and can only go a little. Is this normal? Any ideas as to why this is happening?
I am so glad to have found this board, and hopefully someone out there can help.
Thanks!

[Beth Witten MSW ACSW]

Hi Tara,
I'm glad you found our website too. It sounds like your father may be on hemodialysis instead of peritoneal dialysis. If blood is out of his body while dialysis is going on, his treatment is hemodialysis. If no blood is out of his body while dialysis is going on, his treatment is peritoneal dialysis. If he is doing hemodialysis, you might want to post your message to the hemodialysis message board for patients.

In the meantime, I am not a patient, but am a social worker with years of experience working with patients with kidney disease and kidney failure. It can take several treatments to remove toxins that have been building up in the blood. The length of time between when someone starts dialysis and when they start feeling better can be from one or two treatments to a month or more, depending on how sick the person was when dialysis started.

You may find that your dad loses more (fluid) weight in the first few dialysis treatments making his total weight loss more than 15 pounds. When someone's kidneys are failing, they may lose their appetite and feel sick at their stomach. Patients often say that meat had a metallic taste. Generally food starts to taste better once toxins are removed. This allows the appetite to return. Talk with the dietitian about what foods your dad should eat. He'll need plenty of high biologic value protein to get his muscles working again. If he's anemic (low hemoglobin), he will need EPO (Epogen or Aranesp). This should help him feel stronger and more energetic.

If he is weak and it limits his self-care activities, ask for a physical therapy referral. It's best if he goes to the rehabilitation program where he can be taught and monitored while using their equipment, but if he can't get there, a physical therapist should be able to come to his home to give him treatments. Progress is usually faster when therapy can be done at the rehabilitation site because the therapist doesn't have the same equipment available in the person's home.

So far as the desire to urinate and pain that he feels when he goes, he should report this symptom to his doctor right away. It may mean that he has a bladder infection and needs antibiotics.

Check out the modules on Kidney School (www.kidneyschool.org). They may help answer some of your questions and give you other questions to discuss with the kidney specialist.

[4 my dad]

Hi Beth-
Thanks for the reply and the info. I believe that you are right in that he is getting HD right now. Because I wasn't sure yesterday, I posted in both places.
It is funny that you mentioned the funny tastes, I do remember him saying that he constantly had a funny taste in his mouth but couldn't describe it (he thought it was from a medication he was on for a viral syndrome), maybe it was really the toxins in his body. He talked with the dietician last night and she gave him lots of info. He is processing through that (and about a million other things) and hopefully he can get eating and gain some energy back. Your info on getting PT (and the deconditioning) made sense too, I will pass that on to him. I think it would be easier if we had some warm weather here, he might get out and take a short walk, but it has been very cold and he is always very cold - even inside. He mentioned the urination issue to a nurse at the office and she said that some people still have to urinate. I don't know if she said anything about the pain. Today he seems to think that he may have pressure from needing to have a BM as he hasn't gone much since just after his 1st dialysis.
Thanks for the kidney school link, I was there yesterday but didn't commit much time there. I will go back and do some more hunting.
Thanks again!

[David C.]

Hi Tara,
It's overwhelming isn't it! My kidneys failed April 12,2004. I've been diabetic for 22 years. I am 40 now. I started feeling better in about 2 months, but on my dialysis days, I still feel bad after I get off the machine. (I'm on hemo now). I have problems putting on too much fluid between treatments, therefore I just had a PD tube put in my belly. In fact, I just had it done yesterday and am very sore right now. I'm hoping by doing my dialysing at home every day, I won't put on as much fluid as I do now.
My appitite came back in about 3 weeks, after the toxins were removed for a while. It will take some time to get your dad's "dry weight" set and then he should start feeling better. Just to warn you, I have trouble with my blood pressure dropping towards the end of my treatment. Of course, the more fluid they have to remove, the more problems I have. It takes some getting use to, but things will get better. The best advice is to follow the clinic's instructions and watch the fluid intake. If your clinic is like mine, there are staff there more than willing to help your dad get things on track. Good luck and God bless you both.