the wrong medicine?

[annabanana]

Randy's neph prescribed polystyrene for his high potassium problem. After a week of taking it, his potassium has dropped but his other numbers have worsened a bit more dramatically than they have been. (They've been very slowly worsening over the past 3 months.) I'm worried that the medicine might be causing problems...but the neph just told him to come back for blood tests in a month. I don't know much about these medicines yet. I just know other doctors in the past have given him meds that really messed him up.

[annabanana]

I guess I'd like to know if any of you would get blood work done before a month goes by, considering the more dramatic number changes since on this medicine. I know I might be overreacting, but this is all scary to me, considering all of his other problems. 

[flip]

At his stage, I think labs should be done at least twice a month, if not sooner. Have you tried reducing the potassium in his diet?

[Psim]

I really wish I had a good clear answer for you, Annaba. Hopefully someone will. But I wanted to give you a  and say, yeah, it's so complicated, eh? Good for you for keeping on top of it and trying to figure out what makes sense, instead of just following doctor's orders.

[Ang]

at  my  center  in  melbourne  they've  just  started  monthly  bloods  every  2  months,  full  bloods  1  month  and  then  hb  alertnate  months  wtf, when  i  queried  it,thats  what  the  powers  that  be  want,ah  yeah  they  didn't  tell  anyone  that  it  was changing.

[annabanana]

You'd think they'd want to do blood work more often. I guess they think you'd come in earlier if you were havings symptoms...but Randy doesn't have any symptoms very often, esp. when his potasium is high.

Flip, yes, he's been on a low potassium/phosphorus diet for 3 months. It only helped during the 1st month.

Thanks for the Pism. 

[Roadrunner]

Annabanana,

You have to learn to scream more.  When we changed clinics they only tested once per month.  My husbands hemocrit drops suddenly and his prior clinic knew this and would test anytime he complained of being very tired or week.  (He's not a complainer - only to me - always tells the nurses he's
 fine)  I told the nurse that he need another test and got the reply "He's not due for one"  I talked to the doctors nurse guard and she said the same.  I just kept calling everyone.  The social worker, each nurse on duty, the doctor, the receptionist (she's the one that got the ball rolling).  The more people that know your complaint the more likely someone will say, "you better do something, they're liable to make trouble" 

We were right he needed another transfusion.  If we didn't follow through he would probably have ended up in the hospital.

[Rerun]

You need to review the low potassium and high potassium lists.  He is obviously eating or drinking something that is high.  Milk?  That is what got me.  Milk is high in both Phos and potassium. 

[annabanana]

Yes, I do need to learn to scream more, and louder. Sometimes they treat me like I'm over-reacting, look right through me as if I don't exist. Sometimes I have to ask a single question 3 or 4 times to get a response. 

Rerun, I think it might be coffee that he's over-doing. I tell him only 2 cups/day but he drinks 5 sometimes more.  again.