does anyone have renal bone disease?

[texasstyle]

Hi everyone and sorry i haven't been around to help support others. Life has been been crazy lately and I think I'm going "crazy" too. lol   How high did your phoso levels go? How about your PTH because I think that's both assoc.  What about the physcial effects. Any info would be greatly appreciared. Thanks!

[del]

Phos and PTH are very much related.  Phos levels need to be watched very closely because high levels can cause a lot of problems including bone problems.  Not sure how high the levels can go because the readings are different here in Canada than the states. Normal here is around 1.4 .  Hubby's is usually much lower than that especially when he gets off the machine. The docs even suggested adding phos to his dialysate bath but hubby went with out high phos foods for so many years that he says any phos that goes in his body he is going to taste!! High PTH can also cause problems with calcium and you can get calcium deposits. 

[RichardMEL]

TS's life being crazy? Is this out of the ordinary??!  Sorry, I couldn't resist that comment...

Anyway I think just about ALL renal patients have some form of bone disease - basically brought on by secondaryhyperparathyroidism (try saying that 3 times quickly!) - basically the PTH levels go crazy which leech calcium and phos from the bones, making them brittle. This is the main reason (amongst others) PO4, Ca and PTH are so closely monitored while on D.

And just a noter that it doesn't appear to end just cuz of tx. My PTH is still a little high and next week I am doing a "Bone Density Scan" to see how bad my bones are after all that D and stuff (though my PTH was under pretty good control with sensipar along with PO4 & ca etc).. fingers crossed things aren't too bad and so yes there is a ?? about how my PTH is going, but they did say that it can take up to a few years for all that to get back to normal so no major panic stations yet.

Anyway this is all why it is so important to take phos binders with food, watch your diet etc and keep that PTH under control (either via meds like sensipar, or in extreme by having the PT glands removed by surgery).

[jeannea]

My phosphorus and PTH levels aren't too bad. My bone density sucks. Every time they test it it goes down. But there's really nothing to do.

Well I guess I'm supposed to exercise more...

[RichardMEL]

hey so what do they do in this test? it's just some kind of scan right? All I know is I have to show up without any metal on...... I've never had one before (that I know of, anyway) so I would have nothing to compare to. Guess I'll have to ask 'em what the numbers mean compared to normal or whatever.

[Rain]

RichardMEL: The bone density test is easy. I got one last year so I could track how my bones are with dialysis.  I was in an out of the room in less then 5 minutes. The nurse told me to lay down hold on to the bar and that was it, she changed my position and took another  scan.

[RichardMEL]

sweet! I'm going to tell my boss it takes over an hour so I don't have to go back to work !! 

just kidding ty for the info. sounds good to me More importantly I hope my numbers show not too much damage!

[Rain]

They end up tracking it over time.  So the one I got last year they are using as a baseline.  So far so good for me since I to a lot of weight bearing exercises.
And then they will repeat it in 5 years and see what changed.

[Deanne]

I was diagnosed with osteoporosis several years ago. A combination of hormone therapy to treat endometriosis and prednisone to treat kidney disease caused it. I've been on Fosomax for about 5 years and get bone density scans every 2 years. My last scan showed improvement. Fosamax says not to use it with severe kidney disease, but my neph said she has several patients on dialysis who use it without a problem and since I'm guaranteed to have bone issues after transplant, her goal is to build my bones up as much as possible before that happens.

[texasstyle]

thanks everyone. Do they always give you vitamin D in your dialysis even without phoso or PTH issues like they do the EPO or Heprin each time? How bad does the disease have to get before your bones start to break? What happens when the parathyroid goes? Oh yikes, it seems like it never ends.

[amanda100wilson]

I was told by my neph. An endocrinologist and another doc. At the NxStage Users conference that I should not take Fosamax or any other of those type of meds.  Can cause osteo-necrosis (Bone death) of femoral head and jaw, and also softening of the bones (osteo-malacia).

[sullidog]

I haven't had one of these tests, why? Should I be getting one?

[Rain]

thanks everyone. Do they always give you vitamin D in your dialysis even without phoso or PTH issues like they do the EPO or Heprin each time? How bad does the disease have to get before your bones start to break? What happens when the parathyroid goes? Oh yikes, it seems like it never ends.

I knwo for me they put me on Replavite (Vitamin D) when I had continual PTH issues. So for me it took 4 years of dialysis before any issues showed up and now i'm on some vitamin D

[KraigG]

Being a diabetic, bone density is always an issue. I had the test done a few years ago, long before dialysis, and it was low, so my endocrinologist put me on calcium (Tums) and Vitamin D.

The nephrologist took me off calcium, as it was too high, but still on Vitamin D. And Fosrenol.

[RichardMEL]

I'm having my dexa (bone density) scan tomorrow. They called me to confirm the other day and reminded me no calcium for 24 hours beforehand.. well I don't have any calcium based meds, vitamin D etc so I think I'm good, but I'll take my med chart with me anyway so everyone's sure They said it takes 20 minutes, so see how it goes.

[texasstyle]

I've read all the replies, thanks!  I'm waiting on the next monthly "progress" report. I did see he came home with some info from the center about high potassium foods so my gut tells me that's an issue again. (It did show up on the report 6.1) That Parathyroid  issues that can happen scares me some because i know a surgery can come with that. We pretty much do nothing because every time he stands up he gets dizzy and has to hold on to something. He says it's the meds. Today he made a pot of homemade chicken soup (enough for a family) and ate about 90% of it. I think it was sorta ok diet wise, Some chicken, spinach, rice, a few snap peas, and some low sodium broth diluted 1/2 ratio with regular water. Now the fluid intake, yeah, I get it.  He also on ocaaasion eats a Greek yogurt. They're supposed to be very high in protein if you're someone who needs a boost in that dept, but his dietician yesterday told him there is about 300 (mg?) of K in each one so just before you don't eat too many. I'm just so streessed because I don't know how I would handle things if he started breaking bones. Urrghhh.... Thanks for being there.

[RichardMEL]

wow Potassium AGAIN?! I'm sorry TS hun, but Mike has blinkers on him bigger than the average racehorse!!! How many times must you *plural* go through this merrygoround?! ugh

Anyway I do hope he will be ok if/when he gets a bone scan.

I forgot to come back here and report on my own scan (SORRY!) but I had it the other day and it was totally easy. I got to lie down with my legs up and hang out under the machine for about 10 minutes while they scanned my lower spine and left hip. I did have to move my leg out a bit into a semi-uncomfortable position for a few mins so they could get the hip aligned with the side of the table for measurement, but it wasn't really bad or anything. bonus no extra charge cuz I was a transplant patient!!!! (I had been warned by the tx team they may charge me as it's not a common procedure apparently and not normally covered under our medicare).

Anyway the radiographer was a sweetie. She really nicely answered my questions and didn't give me the usual "I can't tell you anything about the results" spiel. She did obviously say "not officla or anything but.." and showed me where i was on the graph of average bone density, too dense and less dense etc - I am right on the border between low and average, which given my years of CKD and D I reckon is a pretty good result, but I will talk to the tx team in clinic on Monday.

Still I'm happy enough so far and it's nice to know that my situation doesn't appear dire in that respect just yet

TS - re Mike is he on anything to control his PTH that you know of? like Sensipar or something like that? Every ime he has high K or PO4 or Ca instances and the balance is out of whack will have, over time, a negative impact on the bones.

Good luck hun
 

[texasstyle]

well Richard, I just found out that has to start to take the Kaolaxate(sp?) again.  God only knows whathis numbers were last week. He has been so bitchy, and nasty the last several months. I needed something at the store today and we went ( a remote control caddy lol), but could not make it to the grocery store because he felt it would be too much to do a large order and all the brining it in. Things are just getting so bad and I'm geting mighty f---------   tired. I can't even tell you. Plus we have these 2 cockatiels that WILL NOT shut the F--- up! It doesn't stop. I have argued about getting rid of them and I think I am the one who is going to leave. Doubles of so much crap in this house. Every time you want something you have to pull shit out the the way and it falls all over. 8 track players that don't work, etc.. stupid crap that needs to go. I am tired and I know things are not good. I am mentally preparing for the worst but i don't think I can hang in any longer. I did this too damn long. The good days don't exsist anymore. because he is always weak and dizzy. There is an ocassional rare day it's ok. The big events in our life is a weekly trip to Wal-Mart. (haaaa--- that's right I said wal-mart lol. They're everywhere! lol)  Some people are just jack assses and I'm not gonnna be the dirt under someone's shoe anymore.

[RichardMEL]

phew TS.. *hugs* it sounds really tough for you at the moment. I wish I could help somehow.

Clearly you're at the end of your tether, and it's coming all too much between the mess, hubby's situation(and attiude probably), the birds, etc.

I wonder could you get some kind of help from the local council/city dept whatever to get some home help in to help clean out some of this stuff (but not the birds! I feel you love them, it's just annoying you greatly on top of everything to not even get that peace... maybe there's a reason they are extra chatty - stress?). I mean if there's old crap that doesn't work, that you dont need/use that is getting in the way - it's not healthy for you or Mike to be living in that. Even if you have to pay for a team to come in and help remove junk for half a day or whatever it would probably take a lot of stress off your mind.

The other thing I seriously think YOU need is some respite. Is there any way you can get a break from caring after Mike for a day, a weekend?? Like even, again, a home help service to check up on him, cook, whatever? I know in my part of the world you can get stuff like that to give you some time off to recharge your mental and emotional battery just spending time for you. Maybe you and your daughter hang out somewhere - a girl's night/weekend away... Have the chance to do "normal" stuff without (hopefully) thinking every half an hour if everythings ok with Mike and what does he need and feeling a need to rush home and check, or whatever.

I ereally encourage you to seek for some help - maybe talk to Mike's social worker as a start who may offer some suggestions and/or contacts?

Hang in there.

[texasstyle]

sorry I haven't been on in a while. The sleeping is soooooo much anymore. I did a little reading on the parathyroid and it said sleeing and crankiness (lol) are a couple of the symtoms. Njow i have seen people on dialysisi get the parathyroid removed (assuming because of high PTH levels-cheeses, dairy etc...), but my question is..... is it removed because a tumor devolps on it? Does it make the person feel more energy after?  And yes, I do get some time to myself but I don't stray far.I have been doing some vlounteer work for some charity locally since the summmer. I get out, and i feel good about what I've accomplished after.

[RichardMEL]

TS - my understanding is that, if medicine(eg: sensipar) does not lower the PTH levels, than a parathyroidectomy is performed to remove the PTH glands(usually around the neck) - I don't know that this has anything to do with tumors or anything, but to reduce the production of PTH which leeches the phos and calcium from the bones. Obviously in a normally functioning body the PTH levels are normal and this regulation is required so not too much junk shows up in the bones(ie: become too dense I think) which also is bad, but if they become too brittle, well bad things happen.