All was fine up to a week or two ago. My wife is on PD ( Home Dialysis ) with a baxter machine. 8 Hours a night.
Things started recently when she started having no appetite at all. Not feeling hungry. For the last while also has had itchy back. The latter has gone from not very noticeable to very bad / intense. I was asking her today how she felt - she also added bad taste in the mouth. She also thinks her heamoglobin is down a bit ( checks under eyes, pulls lids down ).
Her PD program involves different coloured bags ( 4 in total ):
A constant PINK Bag ( small )
A GREEN Bag
A YELLOW Bag
For two nights - 1 x green, 2 x yellow, 1 x pink
For next one night - 3 x yellow, 1 x pink
Every 3 nights this is repeated … forever.
Tomorrow she is going for an adaquecy test. This involves holding the waste fluid in a large drainage bag, then next morning taking a sample of same. She will then go to the hospital and also get blood tests etc.
She has been on PD / Home Dialysis for about a Year now, maybe less. Before that Haemodialysis in the hospital 3 times a week. Took two op’s to get the Tenckhoff Catheter in their. First one failed as badly inserted, it stuck! Was very sore …
Dori - I think you said somewhere else that when at home on PD the renal teams / PD Unit sort of forgets you - I CONCUR ON THIS.
So anyway - I am throwing these symptoms out here to hear this communities wisdom.
I originally posted this message in the HD for Patients section by mistake. I have now put this same message here. Can you delete the samd message under the HD section? I apologise for getting this wrong,
An update - Just back from the hospital this morning. They took blood tests and also the fluid for her adaquacy test. Should hear about these in next day or so. Interestingly the PD nurse reckons she is dehydrated. She said for her to drink more water. So it seems that using two nights of 1 green bag and 2 yellow is possibly dehydrating. So now maybe its back to every second night with 2 yellow/1 green and 3 yellow. BUT to keep the UF up around the 1000 mark ( which the consultant wants ) using all yellows doesnt do this. All yellows results in UF around 400.
I think this sounds like something that John Agar was talking about - the balance thing.
Anyways, will ad as I hear, and of course any wisdom appreciated
Aidan
Unfortunately, itching, loss of appetite, and a bad taste in the mouth are all signs of uremia–not getting enough dialysis. As your wife’s residual kidney function drops off, she may not be getting enough PD to feel her best. Others on PD are better equipped to deal with which bags she is using. Our article about tailoring the cycler prescription (which was written by a doctor who is a PD thought leader) might be useful for your wife, if you haven’t seen it already: http://www.homedialysis.org/resources/tom/200805/.
Yes, saw that article. The core problem we seem to have is these cramps. If it were possible for her to have:
2 x YELLOW - Dianeal 5000ml - Glucose
1 x GREEN - Dianeal 5000ml - Glucose
1 x PINK - Extraneal 2000ml
EVERY NIGHT without cramps we would be laughing.
When ever she is on the above ( at the moment she does 2 nights of the above and one night of all yellow ) her UF is around the 1000 mark on the green nights. The consultant is happy with this. The problem arises that if she does the above for a third night she is awake right through with loads of cramps. She also gets cramps at the end drain too before she gets up ( generally regardless ).
So in a nutshell CRAMPS are bedeviling her and stopping her having a constant 1000 uf every night, in that she cannot go a third night with the one green, it has to be all yellows. I of course was wondering had others similar issues and if so was it possible to get around this?
Also Dori are you saying that even if she is getting 1000uf for two nights and 400uf on the third - on average ( so in a week green green yellow green green yellow green, 1000 1000 400 1000 1000 400 1000 ) - that this may still NOT be enough dialysis?
Also also she has not been drinking much liquids during any day for a good while ( they do not have her on a fluid allowance ) + she stays well away from salt in general + she was never ever a great eater as long as I have known her ( 15 years or so ) + she no longer has any output ( peeing wise ).
Remember that dialysis does not just remove fluid, it also removes toxins, and this is what seems like it might be the problem. If your wife has no more urine output, then the PD needs to remove enough fluid AND toxins for her to feel well, and right now, I don’t think it is. Longer dwells can help remove more toxins. It’s not always best to do lots of short ones, which the article points out.
thank you Dori - yip this seems the case. We are now awaiting the results of the adequacy test and those blood tests tomorrow. These I hope will tell the story. It just might turn out that she will have to abandon APD and go back to the in hospital HD. Something she doesnt want … from a womans perspective a fistula can be a psychological thing.
Before doing that, I would read that article very carefully and see if it might be possible for your wife to do one LONG exchange at night (or possibly 2, instead of 4) and perhaps one or two during the day. That might help with the cramps AND get her better toxin removal than she’s getting now.
I have printed that PDF File and given it to her to read. Thank you.
She does 6 Exchanges a night she tells me … apparently her doc told her this suits her peritonium. She reckons she is a fast transporter ( as per the article ). Before gettiing up she does a fill then for the day with … I think … the pink extraneal.
By the way when I am using the words pink, green and yellow - these are the colour of the boxes to denote the different strengths as I outline above.
Through all this ( since being diagnosed end of 2006 ) she qualified as a Solicitor ( Lawyer ) - what a woman. So she works during the day with her firm, opportunity for day fils and exchanges are few.
Oh, oops–Aidan, I meant to point out that we started a NEW forum for care partners of home dialysis patients. So, since your wife is the one on PD, you are very welcome to kick off that forum by posting there if you like.
An update - her blood results came through. All her levels are fine. Her Urea levels are fine. Potassium is fine. Her Haemoglobin is at 12.1, very happy with this. Only one out is Phosphate level, slightly elevated. This due to the fact she was not eating much and was taking less phosphate binders. They told her to take more. Problem their though is we think they are causing the constipation.
So, she is lining up a chat with the dietitian. They cannot figure out why she has no appetite.
She is on pain killers at the moment for her neck area - this as a result of a car crash we were in in 2006. Another car broadsided us on the left coming out of a garage onto a main road.
She just called me - the PD unit rang her again, they reckon that she is dehydrated. They told her - especially when with the Green Bag and two yellow for dialysis that she should drink at least a litre and a half of water just before or at the beginning. They also told her a while ago to eat a bag of crisps - AHA - Salt. I seem to remember it being said here if your salt levels are low it can interfere with your appetite??? I think …
Aidan, how is your wife’s serum albumin (protein) level? Dehydration can cause nausea, and that could be something that would stop your appetite. Unfortunately, urea is fairly worthless to look at, since it’s a small molecule that is very easily removed. They don’t measure the other molecules that probably matter more in the long term. So, I always take it with a grain of salt when folks are told that “my numbers are good.” What’s more important is how your wife feels, and that she is able to eat–especially protein. If not, keep trying to figure out what’s going on. Your wife is more than numbers.
You mentioned that your wife doesn’t have much appetite. People on peritoneal dialysis lose even more protein during dialysis than those on hemodialysis. Therefore, it’s important to make up the protein loss by eating even more protein than those on HD must eat to avoid malnutrition. The National Kidney Foundation’s nutrition guidelines recommend a goal for albumin of 4.0 g/dL to reduce the risk of infection and hospitalization. As the albumin level drops below this level, there are increases in the risk of infection, hospitalization and even death. If you haven’t already reviewed the nutrition module on Kidney School (http://www.kidneyschool.org), you might want to do that. It has information specifically for people on PD.
I appreciate your replys here - very informative. I am passing all this onto Caroline as we go.
The PD unit are warming to the idea that somehow when she is on 1 green and 2 yellow bags on a night - that this is taking off too much FLUID ( as opposed to toxins as you indicated the seperation Dori ), hence she is getting dehydrated when a green bag is involved.
Today they reiterated that when she does a night with a green bag involved - to drink about a litre / litre and a half of water before hand to counteract / compensate for this dehydration effect. If this works out then she may be able to go on 1 green / 2 yellow EVERY NIGHT. Thus maintaining a UF of about 1000 every night also. ( Remember I said when she uses all yellow she gets a lower UF - about 400 )
When on green at the moment it is “drying” her out too much. I should say Caroline is and has always been “Petite”. She is about 48 Kilo’s.
Beth - I have downloaded this Nuitrition on PD book and printed it, will get Caroline to read it later when home. I have said to her about the protein levels, she will mention to the PD unit also. Last night she proactively went at making her own decent dinner and ate most of it. What we call over here “A Mummy Dinner” - the type you get when you go to your folks house on a Sunday - Patatoes, Pork, Turnip and the like.
What I have noticed is that she uses the word TASTY alot. She has been sticking rigidly to the Diet prescribed by the Dialysis team here in Cork. They seem to give the same diet to people on PD AND on HAEMODIALYSIS. I asked the consultant about this recently and he said they keep the people on PD on the same diet as they realise people do SLIP alot. Thats their logic right or wrong.
My own philosophy by the way - with regard to Message boards and threads is - particularly ones I start - to round them off and have them as complete as possible, not just leave them hanging. This, for others who may come along later - at least they are getting fuller info. I hate when you read a relevant thread and it stops prematurely with “OK Guys I solved it, thanks” and no sign of how it was solved.
SO - any and all please chime in no matter how “irrelevant” you may think the info you have is.
The PD unit have now instructed her to drink more water - she had become very dehydrated, they reckon this is the reason for loss of appetite etc. AND I HAVE TO SAY - she is alot lot better for it, appetite back and so on. The regime they had her on:
2 nights green + 2 yellow + pink, 1 night 3 yellow + pink
The green particularly was dehydrating. Now they want her to try green + 2 yellow + pink every night, BUT to drink a litre and half of water before hand to counter balance the fluid being removed.
What I didn’t learn in PD school. I’ve been on PD for 11 months with continual problems of constipation, or the reverse. Still my dialysis numbers were good. Suddenly, back in June I lost my appetite, food started to taste really strange. I used Ensure to keep alive, but lost 25 pounds. In August I was hospitalized twice, no small feat as the closes “PD hospital” is 100 miles away. My Hypertension doctor focused on Hypertension, my Kidney doctor focused on my kidneys, neither of them would listen when I said my problem seemed GASTRIC. Each time I was discharged from the hospital I returned home without a solution. Plus, my PD numbers started to go haywire. I was now 9 weeks into my ordeal and fading fast. In desparation I went to a local rural clinic where my overall condition scared the heck out of the nice country doctor. However, I finally found someone who would just listen and not judge me on pre-existing conditiond. It took a couple days,but a blood test revealed some sort of GI tract inflamation. He prescribed Prednisone and a miracle occurred, five days later I ate my first meal in over two months. This doctor sent me to specialist for further tests to see if this inflamation requires long term care, I get the results tomorrow. I’m not a smart guy, but I’m starting to see a corrolation between the health of my GI tract and the PD process. If all else fails , find yourself a good country doctor and cross your fingers.
Anthony, finding a good doctor who will listen without preconceptions is a good part of any medical battle–I’m so glad to hear that you finally prevailed! Doctors are actually almost trained not to diagnose anything–they are taught "if you hear hoofbeats, think of horses (common problems) not zebras (rare or unusual problems). So, if you have anything that is out of the ordinary, most don’t know how to figure it out.
