no answers

[brenda seal]

Well guys I am hoping someone here may have some answers for us ! Laurie has now been on PD dialysis for over six months , after a shaky start he is now getting consistent dialysis . He just is not improving - in fact things seem to be getting worse . He cannot walk to the mail box without gasping for air and feeling exhausted , his legs are weak all the time . Yesterday I was not home , he woke feeling OK and wanted poached eggs for breakfast and felt he could make them . Half way through he had to hang on to the sink to stop himself from falling and then got himself back to bed by pushing a stool up the hallway for support . When I arrived home , he was very tearful as he related the story . All recent blood tests they say are fine - nothing there to explain what is happening they say . His creatinine is still 680 but neph says not relevant .
At present he is using manual bags as machine broke down and was replaced , PD nurse took the patient card to change a week and a half ago . Laurie rang her to chase it up the other day and was told they are very busy and understaffed He still does not have it .
Does anyone have any idea what could be wrong here ? Is this as good as it is going to get ? Laurie smokes and the neph is saying that is the reason .

[boswife]

I really have no answers but,,,,,,,,,  i can say that when Bo had built up toxins, (pre dialysis)  he was so weak and stumbly, and no ballance.  And when his hemoglobin was low, he was so weak he had to stay in a chair or transport chair to get around.  I though it was 'over' for him and that was as good as it gets.  Once ballanced out, well, Today we walked the beach, slowly, but i thought we never would again.  I think it can still happen for your Laurie too.  Of course i dont know that, but there have been a number of times that i was so sure that he would not come back up, but many many times on this rollercoaster, we have recovered to share someore good times.  I kind of think mabie???  hemodialysis is in order??  If so, dont be afraid, i was horrified, but it all is ok.  You'll get used to it and espacially if you see improvement.  All the best to you.  This is so awfully hard on us all     

[del]

What are his clearances?  PD does not work for some people anmd they keep building up fluid and toxins.

[MaryD]

Brenda and Laurie   

Is his haemoglobin OK?  Your description sounds just like I felt when mine was 6.7 but mine wasn't kidney related at the time.  (Lift a dish out of the sink and hang onto the bench for a minute or so to recover before starting on the next dish)  Smoking wouldn't be helping, but I would think that giving it up at this time would create even more stress.

Your PD centre sounds awfully laid back and casual.  Mine is understaffed and frantically busy at the moment (training two home haemo patients ) but they make time to keep my questions answered.

[brenda seal]

Thankyou boswife for your encouragement , I hope he does not need haemo as he panics at the thought . we would love a walk on the beach !
del - sorry to show ignorance but what are clearances ?
Mary , his haemoglobin low at 98 but has been as low as 78 and he didn't feel this bad , doctor has just upped his Mircera dose to 100mg . He does not smoke any where near as much these days but of course he knows it's not helping but does not accept that it  is causing current symptoms . The PD centre are good but recently have dropped the ball - Laurie thinks they see him as a lost cause . I don't know why they just couldn't put his card in the mail or we could get someone to go and pick it up . They keep telling us they have 180 patients and if they don't hear from us they assume all is well . We don't contact them unless strictly necessary .

[okarol]

If my daughter were feeing that way I would call and ask questions. Fluid is tricky and it sounds like he's not getting good clearance. How often is he seen by a nephrologist? I would make an appointment, soon. Good luck to you both!

[jbeany]

Clearances are how much toxins are being cleared during his treatments.  (Check out www.kidneyschool.org for some basics on what all the gobbledy gook on those lab reports mean.)

You need to get pushy, like okarol suggested (only she used nicer terms).  Learn everything you can and get mouthy until you get some REAL results.  All your numbers can be fine and you can still feel miserable - and your hubby shouldn't have to.  Lab results are not the same as quality of life.   And yes, they have 180 patients, so unless you are one of the loud ones, they aren't going to do anything more for you than they have to.

I have my doubts this can all be written off to smoking.  While we're all told to stop if we smoke, I'm betting he's not the only D patient who lights up.  What about his other medications?  It took me years to get a doc who would pay attention and work on changing meds around until the worst of the side effects went away.  Dizzy spells and weakness go hand in hand with a lot of blood pressure meds.  You can look up his meds online and find out all the side effects - or talk to his pharmacist if you have a good one.

Good luck to you both!

[brenda seal]

okarol - We are asking questions but feel we are being fobbed off . Nobody is telling us why he feels so ill and is so weak . His PD nurse just says he has been very ill and it will take time , try to do a little more gradually - but as I said he can't even walk to the mail box without being on the verge of collapse . It's not like he doesn't want to improve - he can't wait to be up and going again and is getting very despondant things are not improving even a tiny bit . We read of people on dialysis riding bikes , going camping and even working full time and wonder why he is barely functioning . He has always been a doer and doing nothing is driving him crazy ! He sees his nephrologist every two months - next appointment September 17th .
jbeany , Thankyou for your link to kidney school , I have spent some hours there this evening . I don't think his adequacy has ever been tested - possibly because of all the interuptions . I don't know what his clearances are . How do you go about getting a copy of the lab results ? We only know what his creatinine and haemoglobin are because we ask after a blood test as these are the two things that seem to be the biggest issue .
He has been taking blood pressure meds for many years and as for all the others nothing has changed aside from the mircera and recently been put on phosphate binders . Maybe I should point out he has severe rheumatoid arthritis and has had head and neck cancer which resulted in him losing an eye and his parotid gland .

[jbeany]

6 months in and they haven't been giving you copies of your lab results!?  Good grief.  Tell them you want copies of all of them, from the last 6 months.  It's the only way to keep track of what the trends are.  Tell them you want the same lab slips the doc sees, not the dumbed-down version they often pass out with the only results being "Good" or "Needs Improvement" or even just smiley faces.  You need to know the real numbers.  You may not understand them all at first, but you can't figure them out if you can't see them at all.

The sad truth is that many medical staff have no interest in explaining anything to you about your own condition.  You have to be your own advocate, and learn as much as you can.  Your husband is lucky to have you there to help him.  If he's not feeling well enough to take on the fight, you can advocate for him.

[jeannea]

I agree. You need to yell til someone helps you. You do need copies of the blood tests. And you need to do a kt/v, which is the test to see if PD is working. That's when you take in a sample of urine and a sample of drain bag, they take blood, then after a weird calculation they tell you if PD is helping him.

Just keep being the squeaky wheel.

[brenda seal]

Thanks for the input ! In light of recent events and the fact there is a test kt/v - I wonder why they haven't done it I will be asking and also for copies of blood test results . Is there anyone else here in Australia that gets copies of lab results > Do you have you have to ask ? Will they give them to you ?

[KAF454]

I don't know what kind of cycler Laurie has, but if it's a Baxter Home Choice Pro it will run without the card on settings the patient can input.

[MaryD]

I get my lab tests every time.  I remind them occasionally if they forget.  It tells me what I can eat.

In Australia the adequacy test is referred to as the PET test.  We have them every six months or more frequently if something major happens with dialysis. 

[brenda seal]

KAF454 - Laurie has Fresenius " Sleep Safe " HA Ha should be Fresenius Very Loud Alarms do not expect to sleep ! It will not run without the patient card .
Mary , Thank you - I will email them and ask about PET test and lab results . Do they give you a print out ? Has your foggy head gone yet ?

[MaryD]

Foggy brain doesn't seem to have gone - much to my disappointment.  I am on a trial run of just an icodextrin bag at night.  The head honcho doctor doesn't sound too keen on the idea, so I'm getting another set of labs done on Monday.  I don't seem to be dropping any fluid, so I expect to be back on my old regime next week.

For Monday's results I don't expect to be visiting the clinic straight away so I will ring the Home Dialysis Unit on Monday pm or Tuesday and get the results I want over the phone.  I have a list of the ones I am interested in and just quickly jot down the numbers next to the names.  I always ask for potassium, phosphates, haemoglobin, urea, and albumin.  They're the ones I have some control over.  When I next see them I'll ask for a print out when I look at the other things which are wonky, but which I can't control at all.

The advantage of getting the results on the day or day after the tests is that I can easily remember what I have eaten and if something is very different I can maybe relate it to an overindulgence in the days before the tests.  I was pleasantly surprised at my results after John's wedding.  It is possible to stray carefully from the straight and narrow

[brenda seal]

I rang the PD clinic today chasing up Laurie's patient card - they have been busy and staff off sick . Last blood test results were all fine . I asked why if the results were fine did he feel so ill , why he is so exhausted on slightest exertion . got the usual replies - he has been so ill , will take time , exercise intolerant ? yadda yadda . I told them we felt like we were being fobbed off and there has not been even the slightest improvement for weeks and nobody can tell us why . I told them Laurie thought they saw him as a lost cause and was very despondant . The nurse brought his patient card out this afternoon and told us his iron levels are very low and they are making arrangements for him to have an iron infusion at the hospital - it takes five hours  and should boost his energy levels . Anyone had this ? Don't know why they haven't noticed before that his iron levels are low .

[Grumpy-1]

Yes - My iron levels were low a couple of times.  But they saw them in the lab results and the clinic "pushed" some iron in the next time I was there.  (Note I'm at the clinic twice a month.  Once for labs and once 2 weeks later to see the Dr and let him tell me what the nurses had already told me about the labs)  I also decided to take over the counter iron tablets (50mg) once a day.  By doing that I think it has stabled out the swings between too low and OK.   Grumpy

[MaryD]

I've had iron infusions (x2).  Main downside is the sore bum you get from sitting so long.  I did feel a little better as a result.

[jbeany]

Yes, the iron will make a difference!  Even if he's being given epo, if there's no iron in his system, it won't make red blood cells.  It is incredibly long and boring to get the IV's done, though.  If he can take it orally, get him started on that to keep his levels up once they jump with the infusion. 

Be forewarned - not everyone can take the oral versions without getting sick.  The pills always made me throw up within minutes.  They tried having me swallow it in liquid form, and that wasn't much better - it just took longer for the problems to show up.

As to them not noticing - well, until you get loud about quality of life issues, they don't bother to do anything about them.  Good for you for speaking up and insisting that something was wrong!   

[cassandra]

An easier oral way of taking oral iron is the one for pregnant women, its called Spatone, doesn't make you sick, or 'blocked', and kept my iron stable for quite some time.

good luck, and love Cas

[lainiepop]

Agree With Cas Spatone worked really well for me, Kept my hg stable for 10mthf before tx so i didn't need epo or infusi ons and no side effects.