Help with Phosphorus

[LostWife]

Thanks again, everyone.

Doc ok'd the slo-niacin, so we just have to order it.  Last night he took the Fosrenal before his meal (as in the minute before) instead of after, so that was a good change, maybe. 

He really eats a lot of rice & meat - we grill a lot at home.  He doesn't have a sweet tooth hardly at all (no chocolate), he hates milk, and always has.  He's given up cheese.  He's given up dark colas and gatorade...We just realized he'd been snacking on cashews which are bad, so we cut those too.

I think something is just out of whack.  We'll keep working on it but may have to have the PT removed.  Anyone know the recovery for that?

[KICKSTART]

Im sorry this is the last time im going to say this ..everyone keeps going on about avoiding phos foodstuff and you keep saying hubby does. Ive tried to tell you he is showing classic symptoms of high PTH .

[LostWife]

Forgive my ignorance - his PTH is high, but I thought the Phosphorus and the PTH were tied closely together?  That's why I was focused on that.  His doc and nurse told us if Phos drops then so does PTH?

We're going to try sensipar (it really made him have bad abdominal cramping before) and we're thinking of getting the PT removed, but I need to know recovery time for that.  He's already missed 6 weeks of work recently.  We need his job for health insurance, unfortunately.

[RichardMEL]

PTH *is* closely linked with phos, but it is ALSO closely linked to calcium also. It's the so called PTH triangle, and it's so hard to keep everything in check because you manage one, and something else can easily go out of whack (eg: you take a calcium based binder for phos, it pushes up your Ca, and that in turn effects PTH, or you take something to lower the PTH which lowers Calcium too, but affects Phos...). It's quite visious. I must say though that for me I found that using renagel (as a non calcium PO4 binder) and sensipar to control PTH (which also lowers serum calcium) was a real winner. Every so often had to modify the dose of one or another, but in general it worked pretty well. Of course that's not to say it's a good idea for anyone else - everyone's situation is different, but I found that worked for me.

This link may provide some more information: http://www.kidney.org.uk/Medical-Info/Calcium-Phosphate/index.html#8

[KICKSTART]

Forgive my ignorance - his PTH is high, but I thought the Phosphorus and the PTH were tied closely together?  That's why I was focused on that.  His doc and nurse told us if Phos drops then so does PTH?

We're going to try sensipar (it really made him have bad abdominal cramping before) and we're thinking of getting the PT removed, but I need to know recovery time for that.  He's already missed 6 weeks of work recently.  We need his job for health insurance, unfortunately.

Sorry i wasnt having a go at you , like RM said all 3 are linked , but sometimes if PTH is high then no matter what you do , phos will not come down !  We dont use Sensipar over here we use Cinacalcet  but i expect others will give you the same advice , take it after a large meal (t-time).

[LostWife]

It's just such a puzzle.  I think he'll start the sensipar soon, and he has to get labs done again this Thursday, so I can put out an update when we have it.

The great thing here is that we're finally working on it together.  And although he's frustrated (as am I) I feel more knowledgeable now than I ever have.  We had the baby so close to this happening that I wasn't able to get super educated (while also trying to figure out diaper rashes and what kind of bottles to use!).  I really feel quite ignorant.  I never even knew about the PTH until very recently.   

Thanks again.  You all are really a treasure trove of info.   

[RichardMEL]

KS honey how many times do I have to tell you!! Sensipar and Cinacalet are the SAME THING!!!!!! did you not see the scan of the med package I posted for you? Sensipar is just the trade name (like Prozac or whatever) that isn't used in the UK for whatever reason. Cincacalet is the actual compound.

[KICKSTART]

RM  honey are you SHOUTING at me ?    I KNOW they are the same product , what i probably should have said is ...Over here its called Cinacalcet ! not Sensipar ! Keep ya bloomers on    Im going to send you some Prozac  (or do we call it something else ? )

[RichardMEL]

  I think it's Prozaxc here too  he he

As for the bloomers... it's my job to gey them off others
 

[Stoday]

Queen Victoria's bloomers were recently auctioned here in the UK. Click this link

You missed your chance to add to your collection RichardMel 

[KICKSTART]

I go Commando !!!

[RichardMEL]

Queen Vic's a tad too old for me :p I like them around my own age.... well ok, maybe a bit younger 

 

[LostWife]

A few updates - he has started the sensipar and isn't having the weird reaction to it he had last time!       He does seem to be having some acid/gas on a more regular basis but I am not sure they are linked.  Does seem to help if he takes prevacid but I am not sure that is allowed?  Does anyone know? (like I know Advil is a no-no but I don't know what else)

So we'll get blood drawn in a week or so.  Been on the sensipar for about 3 weeks, so I am so hoping it shows in the numbers.  Thanks to all of the advice here, I managed to talk him into trying the sensipar (with a BIG meal) - he was totally opposed to it before.

On to other news:  our transplant center called and said he was pretty much at top of the list (a few ppl ahead of him) and we need to come in for a stress test!!  OMG.  I think we are both trying so hard not to get our hopes up but wow would we be so grateful if this happened soon (and super happy if it was spring or summer and not flu season!)  Doing everything we can think of to keep him healthy.  He had peritonitis last week so we have to get over that hurdle now.

Any good resources for us to read about what to expect after transplant?  I honestly haven't looked into it much b/c I didn't want to hope for it.

[Hazmat35]

Queen Victoria's bloomers were recently auctioned here in the UK. Click this link

You missed your chance to add to your collection RichardMel 

Why on earth, would anyone want a pair so someone else's underwear!