todays dr appt

[angela515]

So I seen the neph today, and she said the sores all over my body are calcium deposits. I asked what can be done to make them go away, she said just trying to keep my labs as normal as possible and my sores should go away within 4-6 weeks. So now I am scared to eat anything cuz i wanna keep my phos and PTH and blah blah as normal as possible so these horrible sores go away.  As for the pain the sores cause she just told me keep taking the Vicodin, thats all she can offer is to give me pain meds. I asked why there painful, she explained because the calcium deposits are burning my skin and nerves and such.... ouchies.

Does this mean that I am prone to calcium build up in my blood also? Or bones? This months labs were GREAT, phos was 4.1, PTH was in the 100's, and everything was in balance, so if I can keep it that way I guess these sores will go away, hopefully that means all issues with the calcium deposits will go away too.

She also took an x-ray of my right ankle because I told her sometimes i'm in so much pain I can barely walk on it. I dunno if thats a result of my RA, or the calcium deposits getting to my bones or if its a fracture b/c I got 2 screws in each ankle and they fracture easily... hopefully I'll know by next week on the results of that.

I also had them swab my exit site for my PD cath b/c it looks infected so they did, and they gave me a gentimicin cream to put on it until the results come back. If I need an antibiotic they will call me.

Is my understanding correct in saying the only way to make the whole calcium deposit issue go away is by getting a transplant? Or will keeping my labs normal as possible also make it go away? Or just slow down its process?

What a day!!

[Sluff]

Although I'm not much help here medically speaking, I do sympathize with the pain and discomfort you are experiencing. Wish I could offer some good advice but I can't. Sorry you feel so crappy.

[angieskidney]

It is hard to know what to stay away from but it is possible. My levels were so high they threatened me with "you will end up in a wheelchair soon if you keep going like this".  But now for the last 5 months I have got it under control and even had LOW phosphate and LOW Potassium for one month 

Anyway, you might find this site interesting:

• http://www.fosrenol.com/Consumers/Default.aspx
• http://www.fosrenol.com/Consumers/Resources/MultimediaProgram.aspx

[Joe Paul]

Sorry your going through so much pain. I had sores, but I was told it was some sort of infection at the hair root. I still get them off and on, and they hurt too. Hope they figure out whats going on soon.

[BigSky]

Keeping your labs in normal range should make the problems disappear.  Also you serum calcium level x your serum phosphorus level should be within range also.

[Epoman]

So I seen the neph today, and she said the sores all over my body are calcium deposits. I asked what can be done to make them go away, she said just trying to keep my labs as normal as possible and my sores should go away within 4-6 weeks. So now I am scared to eat anything cuz i wanna keep my phos and PTH and blah blah as normal as possible so these horrible sores go away.  As for the pain the sores cause she just told me keep taking the Vicodin, thats all she can offer is to give me pain meds. I asked why there painful, she explained because the calcium deposits are burning my skin and nerves and such.... ouchies.

Does this mean that I am prone to calcium build up in my blood also? Or bones? This months labs were GREAT, phos was 4.1, PTH was in the 100's, and everything was in balance, so if I can keep it that way I guess these sores will go away, hopefully that means all issues with the calcium deposits will go away too.

She also took an x-ray of my right ankle because I told her sometimes i'm in so much pain I can barely walk on it. I dunno if thats a result of my RA, or the calcium deposits getting to my bones or if its a fracture b/c I got 2 screws in each ankle and they fracture easily... hopefully I'll know by next week on the results of that.

I also had them swab my exit site for my PD cath b/c it looks infected so they did, and they gave me a gentimicin cream to put on it until the results come back. If I need an antibiotic they will call me.

Is my understanding correct in saying the only way to make the whole calcium deposit issue go away is by getting a transplant? Or will keeping my labs normal as possible also make it go away? Or just slow down its process?

What a day!!

Well with a PH level and a PTH level so low, you say 100's (how many hundreds) I don't think they are calcium deposits, usually the calcium deposits start under the skin and will cause bruises. They are painful, especially if you get them in your joints. But they may be, did she do a culture of one of the sores? I ask this because some nephs will just disregard any sore on a dialysis patient as calcium deposits when if fact they may not be.

And no, you are very INCORRECT in your understanding that a transplant is the only way to resolve the calcium deposit issue. I use to get HORRIBLE calcium deposits that would make me not be able to walk unless I used crutches. However when I had my parathyroids (since it lowered my PTH) removed that solved ALL of my calcium deposits and I have not had a calcium deposit in over 5+ years.

But yes, you need to keep your labs in order because you do NOT want to get a calcium deposit in your joints, as you will experience a whole new level of pain.

- Epoman

[angela515]

She did not take a culture or anything of the sores... in fact she hardly looked at them, she glanced and said "its the same things i told you before a few months ago, its calcium deposits". My PTH and phosphorus levels have been running high for the past 5 or 6 months, this last month when they were in the normal range was the first time in almost a year that they were in the normal range, which is why she keeps telling me they are calcium deposits b/c this was the first time my labs have been good. 

I go in for this months labs Monday the 15th, do you think I should demand them to culture the sores or something? From my understanding she said before she can't culture them, she can only biopsy them. A few months ago in July I was in the hospital for cellulitis infection in my leg, and I had sores just like this all over, and she did have one of them biopsied to see if it was calcifilaxious(sp?) b/c my PTH levels were over 1000... and they wanted to remove my parathyrid glands then, infact they scheduled me for surgery for the next morning. Then she came back that night and cancelled the surgery b/c she said it was a risky surgery and shouldnt be done unless absolutely necessary, so she wanted to wait for the biospy results. The biopsy results came back like 3 days later and showed some kind of bacteria infection and that it wasn't calcifilaxious or whatever.  So I don't understand why she keeps saying they are calcium deposits by just glancing and nothing else.

My x-ray of my ankle came back fine except it showed some osteo-arthritis. I guess thats causing all my pain, idunno.. I just know sometimes the pain is so terrible I can barely walk on it let alone move it. I plan on calling the doctor this Monday and asking what I can do about the pain and if its being caused by osteo-arthritis what can i do to help it.