Back in hospital

[brenda seal]

Hi everyone , The iron infusion Laurie had did not help and he continued to deteriorate . He went from having a poor appetite to no appetite at all to vomitting . He was admitted to hospital on Tuesday and his BP was very low , they gave him iv fluids as he was a little dehydrated and bp has come up a little . Nobody seems to know why he is so ill , neph is increasing his dialysis volume from 1800 ml to 2000 ml to see if this helps ( it hasn't so far ) . His creatinine is well over 700 but the neph says this is not relevant now he is on dialysis , I don't understand this as I thought creatinine measured toxins in his blood so surely if it is still climbing  - it must mean the dialysis is not clearing toxins efficiently enough . Neph says dialysis is a balancing act and sometimes takes a while to get the balance right . Come on it has been 8 months and he is just getting sicker and losing more and more weight .
When the neph did his rounds he had his entourage with him and told everyone he thought Laurie's biggest problems were related to his rheumatoid and how horrendous his arthritis was and how high all his inflammatory markers were ? He is no better today and still no answers as to why he is so sick . I am so frustrated and worried and scared for the future . At what point do they concede this form of dialysis is not working and suggest we try something else ?

[Rain]

The question is not what is his creatine levels but what is is urea levels.  Urea measures toxins in the body.  When my urea gets too high I feel awful.

Hang in there hope things get better soon.

[bevvy5]

I'm assuming he's on PD with the volumes you're mentioning.  To me, it makes no sense that his blood pressure is low, he's being given fluids because they think he's dehydrated and they're basically increasing his dialysis on the other hand with larger exchanges.

With my husband, his levels of everything were climinbing.  They kept increasing his PD, amount of fluid, fluid strengh, do an extra exchange during the day.  He has legs like tree trunks, always has and it was a constant mantra of, "He must be retaining fluid, look at his legs." 

Basically PD just wasn't working anymore and by the time that was figured out, he was so severely dehydrated he couldn't eat, couldn't keep anything down and couldn't walk.  He'd lost 80 pounds in about four months.  He was two weeks in the hospital.

Started on hemo and for the first four runs they took no fluid off at all.  Then he started feeling better. 

Everybody's different but thought I'd share our story.

[jeannea]

I am wondering why they don't consider at least some temporary hemo to get things under control. He must feel so awful. Keep pushing for answers and help for him.

[bevvy5]

Are his other numbers, like phosphorus, potassium, urea climbing?  Are they increasing if you compare over the last few months?  That would be an indication that his dialysis is just not cutting it, perhaps.

[brenda seal]

Yes he is on PD . All other numbers are OK  they say . Urea is 20   , last time he was hospitalized it was 39 . He usually is hanging on to fluid and takes 80 mg Lasix daily ( stopped for time being ) . Normally has very high Bp and has meds for this - also now stopped . Bevvy how long was your husband on PD and how long did they take to figure out it wasn't working ? How old is he ? How long has he been on heamo ? How is he now ?

[Poppylicious]

Brenda, I hope Laurie finds an answer/solution soon. 

His creatinine is well over 700 but the neph says this is not relevant now he is on dialysis , I don't understand this as I thought creatinine measured toxins in his blood so surely if it is still climbing  - it must mean the dialysis is not clearing toxins efficiently enough .

Just so you know, Blokey's creatinine averaged out at around the 600 mark for most of the time he was on dialysis (two and a half years, including a brief three month or so spell on an unsuccessful attempt at PD).  It was never highlighted as an issue.

[brenda seal]

Poppy , Why did they switch him off Pd ? How was he feeling on dialysis ?

[Poppylicious]

PD just didn't work for him.  I think his labs were screwy, which was because he had problems with draining ... it went in but barely came out!  Everybody tried everything because they knew how much he wanted to be in the comfort of our own home but to no avail. When he switched back to haemoD with a fistula the difference was amazing. I don't think his creatinine changed though regardless of which he was on.

[MaryD]

Brenda

 

Creatinine is only a useful measurement before dialysis.  It is the one which  your GFR is calculated and is a good indicator of how far your kidney function has declined.  When you get close to needing dialysis, and once on dialysis, potassium, urea, phosphates, PTH etc etc are the ones that matter.

When I was being seen by the Hospital in the Home staff (non renal people)  they used to have a conniption over my creatinine levels, but paid no attention to anything else.  They could not understand why I insisted on getting the other numbers.  They would ring the renal clinic verging on panic about my creatinine, even when everyting else was OK.

I hope Laurie comes good soon