Can I do Less Dialysis?

[Ken Shelmerdine]

This is a question I have already put to my GP and I am going to mention it to my home nurse tonight.

After a routine medical I took for an insurance policy 19 years ago I was subsequently after various tests diagnosed with Adult Polycystic Kidney 7disease. They told me I had 70% kidney fuction which would slowly deteriorate and would probably need dialysis some time between the age of 60 or 70 and so since then I have made regular visits to my local renal clinic.

Throughout all this time I never experienced any debilitating symptoms and was still symptom free when my creatinine reached 600 (I think that would be labelled 6.0 in the U.S.) Also, and I think this is what started the  real panic at my clinic, my serum potassium level was 6.9! I was actually told by phone to report to my local A&E (E.R.) department immediately.

 In the meantime I had found a study on the interent which found that the blood pressure drug Candesarten increases serum potassium levels and guess what, a couple of weeks previously my renal doc had doubled the dose of that drug in order to compensate for  the reduction dose of another BP drug I was taking for which I was having a slight reaction to. When I mentioned this to the A&E doc. he went away to maybe look at a book or something...I don't know but when he returned he agreed that this may be the problem. Subsequently Candesarten was replaced by a different blood pressure drug and within 2 weeks my potassium was down to 4.8! doh who's the doctor! but by then the ball was rolling, my catheter surgery was  booked and it was decided I was going to do dialysis. 

When I asked why I had to have dialysis when I felt completely fine they convinced me that as my function was by now only 8% it would be better to have the catheter fitted, go through all the training process and start dialysis before this happens which they convinced me would be very soon so, sold on this idea I took their advice and I have now been doing baxter cycler dialysis 5 nights a week and one day at week-end CAPD for almost twelve months. I still feel absolutely fine with full urine output and 15.2 haemoglobin level so my energy level is as good as ever.

I am convinced I could do less dialysis and feel just as well. Believe me I've tried it. I went for a week without dialysis and had no ill effects. BP stayed the same and my weight stayed around target. The thing that concerns me is this. The option of APD doesn't last for ever and gradually the peritonium wears out so why use it so much when I don't need it to feel well. Why not save it untill I to start experiencing symptoms and become deoendent on it.

 I'll be seeing home nurse tonight. Wish me luck.       

[goofynina]

Good Luck Ken, let us know how it all goes k 

[Sluff]

Good Luck you bring up valuable points with your reasoning.

[Ken Shelmerdine]

  Well I mentioned all this to my home nurse last night and today I've had a call from the CAPD clinic saying that I can skip Saturday CAPD and just use the baxter for five nights and on Aug 27th they'll do an adequecy test to see how it's working out. Not quite the result I was hoping for but at least I don't have to fanny about doing 3 exchanges with only 2.5 hour dwells on a Saturday.

If the adequacy is unchanged I'll push 'em for a night off the baxter, but only if the clinic agree. In spite of all the points I've raised I don't think could completely trust my own judgement against that of the clinic doctors.

[jbeany]

Never mind trusting the docs - just trust the labs!  Good luck with getting more free time!

[Zach]

Just be very careful of your Potassium ... that's a killer if you don't watch out.
 

[Ken Shelmerdine]

My home sister did the adequacy test on 27 Aug as planned and yesterday 10 Sept I attended my 3 monthly renal clinic appointment  fully expecting to be told the result.

My appointment time was 9.30 am. By the time my turn came up to be weighed have BP done and give blood samples it was eventually 11 .15am before I got to see a doctor only to be told that the result had not been placed in my medical records folder and the doctor said she couldn't get into the system because the computer was not recognizing her password.

 ???WTF!! I've left a voicemail on my home sister's phone. I'm not a happy bunny!

[okarol]

Would love to hear an update when you get it Ken. Sorry about this delay -- I hate when that happens!!!

[goofynina]

Yes, please be sure to let us know how your test went, i dont think i have ever had one of them done     And i hope you let them have a good one you angry bunny you

[Ken Shelmerdine]

  My adequacy is still well within the margin so I can carry on cutting out Saturday CAPD. So that's Sunday to Thursday on the cycler and then 2 days off (Friday and Saturday). but how about this?

I had this test nearly a month ago and the reason why it wasn't available for my clinnic appointment was because my home sister hadn't noted the UF reading from that nights cycler readings so they couldn't make the calculation. So, I refered to my daily record book and gave her the figure over the phone. That was ten days ago and I never heard anything so this morning I phoned the PD clinnic and got the information. I asked the question on when exactly they were planning to write or phone me with the result and the voice on the phone said

' Oh we only contact the patient if something is wrong, we wern't planning to contact you because you showed good adequacy.'

  WTF nobody had told me that before. So I'm waiting wondering what the hell it's going to be and they don't think it's important enough to let me know

Anyway the main thing is it's the result I wanted so I'm a happier bunny.  

[Sluff]

Did you tell them your IHD family has been waiting? geeez I'm glad your results are good.

[Ken Shelmerdine]

Did you tell them your IHD family has been waiting? geeez I'm glad your results are good.

I'll tell them that in the future. Thanks Sluff