Mark

I am the sister of a dialysis patient that Lin mentioned in a posting on this site. I am definitely not medically trained, but like you am trying to associate my sister's condition with some of her lab results.

Your description of your mother reminded me of 2 things I have been researching. My sister's labs showed high levels of aluminum and bicarb. I spoke with a toxicologist who emailed me some material...after getting through it to find some words I could understand (!) I found the following which may or may not apply to your mother:

ALUMINUM (Range for dialysis pts 0-10)
If exposed to high levels of aluminum in dialysis fluids & meds can develop dialysis encephalopathy, characterized by:
(1) tremors
(2) psychosis
(3) other changes in speech & behavior

BICARB (Range for dialysis pts 22-29)
Can result in metabolic alkalosis, characterized by:
(1) slowed breathing
(2) irritability
(3) twitching
(4) confusion
(5) "picking at bed clothes"
(6) nausea, vomiting, diarrhea

As I think is my sister's case, it is probably a combination of several things - and the individual is not considered. I was touched by many things that you said, which so many can relate to: "doctors say her labs look very good"; focusing on only the most immediate needs and don't follow through on investigation of the cause; and trying to keep her textbook normal which may not really be what is "normal" for her".

And, I totally agree with you that dialysis pts also need a personal chemist!

I wish you all the best. I am sorry for what you and your mother are going through and thank you for your posting - it strengthens my instincts that something is wrong, regardless of what the labs say.

Wendy

Wendy,

Thank you for your words of support. Sharing our combined experiences as patients and families of patients using this medium does offer a sense of hope. It's so important to be involved in a loved one's care and become as knowledgeable as possible about what is happening. Even if we are far short of being the "professionals" directly providing care, maybe we can at least be the tools to make the care more individually appropriate.

My best wishes to you, Wendy, and to your sister as her care continues.

Mark


P.S. - Speaking of "tools"...has anyone out there ever used exerpts from this discussion board to present new ideas/possible solutions to their/their loved ones' doctors or other staff?

I search the kidney boards, daily looking for answers for my care. I've presented correct info to my doctors, and staff, numerous times, and obtained their cooperation. I don't know why they can't do their jobs unless I confront them with solutions. But it seems that's what it takes for them to act in my behalf and I don't ever let up..

Hi,

Yes, I have used information here and other sites to remind me of situations that I have not encountered in years, such as aluminum toxicity, etc. As a nurse, I appreciate hearing what patients have to say, it reminds me to be more open and pay even more attention to minute changes in my patient's sense of well-being.One idea that I think is great is for patients to keep a journal of how they feel and keep a record of when anything is adjusted in their treatment or medications and how they respond to these changes. Sometimes it is like being a detective to figure out what is wrong, a journal would make this much easier to pinpoint problems and make adjustments.

Cleo

Cleo,
Glad to hear of a nurse who is sensitive to her patients' needs for care. I keep a journal, as you suggest, and it has made me more aware of my bodily symptoms and helps me track down the cause of problems.

my dad has had about 6 dialysis sessions already in the past weak and im very worried. he keeps trying to take out his cathader and he seems confused. he always says crazy things and its hard for me since im pregnant. i dont know if this is normal and how long it lasts . someone please help :'(

oh and my email is butterflybeckyg@aol.com please someone respond