Suggestions needed regarding cal

[Alisa]

Hi
I was wondering if anyone else was experiencing the effects of high calcium or potassium physically.   My situation is this. I have been on PD for 5 years, getting close to the top of the list for transplant.  So one of the prerequisites at my transplant program is that you need to have your parathyroid removed to help prevent the new kidney from calcifying.  So back in Sept of '11 I did.  Since then I have been hospitalized around 20 times with either high calcium or low. Also the same this with potassium which I never had a problem with before. I can be fine one minute and then boom my arms, legs, start feeling like there numb, tingling and like someone is squeezing them.  Also I get a funny smell and a weird sensation in my mouth.  Not to mention dizziness and extreme fatigue.  It seems as though this will never be controlled and is beginning to debilitate me.  I live 3 hours from the closest PD unit so the hospital I deal with has one hemo doctor, I am going to see him this afternoon as I have been to the er for potassium twice in the last week.  Frustrated.  Sad part is I do watch my diet? Any suggestions on how to make this all stop?  Besides a transplant, he he.

[CHeatherS]

Gosh, I am really sorry to hear about these troubles.  I know that my mother had her parathyroid removed, but that was a good 20 years ago, before she passed away.  I am now in kidney failure (PKD) and on PD, but only about 2 months, so I don't know much about what you are going through, except that I did have an over reactive parathyroid, and was put on Zemplar to regulate that.... since I have been on dialysis, it seems to have calmed down and all of my numbers are looking good.  But I do wonder what is going on with you.  Let us know what your doctor visit revealed.  Hope this can be taken care of easily.... sounds very scary.

Blessings
Heather

[jeannea]

That sounds rough. I've never heard of being forced to have your parathyroid removed to get a transplant. And I've had a transplant. Stand up for yourself with the doctors. Don't let them brush you off. Make them find the answer and how to help you since they put you in this position. I'm sorry you're suffering.

[greg10]

Hi Alisa.  I am sorry you are having a tough time adjusting to your parathyroid removal. 
There is someone in this forum that has very similar symptoms after her parathyroidectomy and unfortunately I think it got worst before it got better.  Perhaps gothiclovemonkey can offer some advice when she is better.

http://ihatedialysis.com/forum/index.php?topic=22244.0

Hi
I was wondering if anyone else was experiencing the effects of high calcium or potassium physically.   My situation is this. I have been on PD for 5 years, getting close to the top of the list for transplant.  So one of the prerequisites at my transplant program is that you need to have your parathyroid removed to help prevent the new kidney from calcifying.  So back in Sept of '11 I did.  Since then I have been hospitalized around 20 times with either high calcium or low. Also the same this with potassium which I never had a problem with before. I can be fine one minute and then boom my arms, legs, start feeling like there numb, tingling and like someone is squeezing them.  Also I get a funny smell and a weird sensation in my mouth.  Not to mention dizziness and extreme fatigue.  It seems as though this will never be controlled and is beginning to debilitate me.  I live 3 hours from the closest PD unit so the hospital I deal with has one hemo doctor, I am going to see him this afternoon as I have been to the er for potassium twice in the last week.  Frustrated.  Sad part is I do watch my diet? Any suggestions on how to make this all stop?  Besides a transplant, he he.

[Alisa]

Thanks for your concern.  I did fight against the surgery and prolonged it as much as I could but the transplant program insisted and said I would not be "active" on the list until I got it out.  So I caved.  Initially I was told that the hospitalization after surgery would be 1-3 days, and twenty some days later I was released.  Why so long , well they called it Hungry Bone Syndrome.  The way I understand it is that my pth was high for so long that my bones were robbed of calcium and so when it was removed my bone ate up all the calcium in my blood which left my muscles and blood cells lacking so I had a calcium drip for ever.  That's the history there,  But currently I am yo-yoing with it.  The doctor increased the calcium again yesterday so now I am on 9 - 250mg a day.  Also some powder I drink 3 times a week to try and control the potassium.  Happy to report that today was the first day in weeks that I wasn't sick-sick.  I never had any symptoms of either. Knock on wood that this continues.