I am in a wheelchair due to dialysis.

[Epoman]

Story coming soon. It's a long one 

[Rerun]

I have time....  What's your story?  Darla~ 

[Epoman]

I have time....  What's your story?  Darla~ 

Well to make a long story short:

My PTH was 3,000+ at that level ALL the calcium was pulled from my bones making my bones very brittle, I fell and when I did I broke my hip. A week later I twisted the wrong way and broke my other hip. Well 5 years later I am still waiting for my bones to heal.   You may ask why not get a couple of artificial hips? Well my bones are so bad a hip stem being put in might cause more problems i.e. brakes in different places. So you better take care or your Phosphorus and Calcium levels and get your Ca.times Ph.product low so they can give you Calcijex or other vitamin D drug to keep your PTH low so your bones can stay healthy. BECAUSE BELIEVE ME BEING IN A WHEELCHAIR SUCKS LIKE A MOFO.

I crossed posted this in another thread.

[CAPD]

Hi Epoman, I don't mean to me facetious here but I read some women have a fetish for wheelchair guys. Just something I thought you might to know...

[Epoman]

Hi Epoman, I don't mean to me facetious here but I read some women have a fetish for wheelchair guys. Just something I thought you might to know...

Well I have never seen any but if you find some let me know. Oh wait I'm married.  

[livecam]

My boss is in a wheelchair due to the side affects of heavy chemotherapy.  He came down for lunch on Friday and all I can say is we are lucky to have only kidney disease instead of cancer to deal with.  We have several options that will allow us to live well.  When comparing our problem to those of others we aren't doing all that badly.

[Epoman]

My boss is in a wheelchair due to the side affects of heavy chemotherapy.  He came down for lunch on Friday and all I can say is we are lucky to have only kidney disease instead of cancer to deal with.  We have several options that will allow us to live well.  When comparing our problem to those of others we aren't doing all that badly.

  Yeah well I have had Cancer as well.

[Rerun]

I'd rather have cancer.  At least you have a shot at a normal life after chemo.

[Epoman]

I'd rather have cancer.  At least you have a shot at a normal life after chemo.

You do realize that there are Cancers that even chemo won't help. Some people with cancer don't get a shot.

[livecam]

We know, cancer sucks.  There are several people I'm close to who are dealing with it now.  With kidney disease there is a clear path to a remarkable degree of normalcy.  Cancer hides in that one wayward cell that all of the treatments might have missed.

[angieskidney]

Cancer runs in all the women in my family According to history .. I should be next. I have my fingers crossed that I won't get it. I have enough problems.

[glitter]

hi-I have not posted much-but (I am in the introduction thread)


my husband is on dialysis because of kidney cancer.Renal Cell Carcinoma-and it is one kind of cancer that chemo and radiation do not work for.They don't prescribe it-it is either a surgury 'cure' or you go straight to clinical trials of new drugs if you can get in.I say'cure' because it is common for RCC to show up 5,10 or even 20 years down the road.(He lost his other kidney in a bike wreck 25 years ago-so now-no kidneys.)

He also can't get a  transplant  for 5 years,he must be RCC free for 5 years first.

[angieskidney]

hi-I have not posted much-but (I am in the introduction thread)


my husband is on dialysis because of kidney cancer.Renal Cell Carcinoma-and it is one kind of cancer that chemo and radiation do not work for.They don't prescribe it-it is either a surgury 'cure' or you go straight to clinical trials of new drugs if you can get in.I say'cure' because it is common for RCC to show up 5,10 or even 20 years down the road.(He lost his other kidney in a bike wreck 25 years ago-so now-no kidneys.)

He also can't get a  transplant  for 5 years,he must be RCC free for 5 years first.

Wow! Thank you for sharing that with us! I hope all the best for him!

 Since they can't do radiation, all they can do is surgery to remove it? What drugs are they going with right now they offer the most hope?

[glitter]

they did surgery April 13,06 and removed his kidney-he is on dialysis and they consider it a cure-then he has to be clear for 5 years before transplant-in the meantime they do....nothing.See-kidney cancer has some nasty little aspects-the chance of it coming back doesn't lessen over time more then about 10 %-so if you had stage II clear cell (what my husband had)and its re-occurrence rate is 83% the first 5 years-then after that it only goes down to say 75% for the next 10 to 20 years-but you have to wait the full five years before you can get a transplant (provided you have a donor)

you asked about drugs-there are a couple of clinical trials that are having encouraging  results-but we won't get an oncologist until he has mets somewhere come up (little cancers)-apparently if you don't have active cancer you don't need a cancer Dr.The urologist keeps an eye on him for more cancer.

sorry for going off-topic in this thread too-

I saw someone say they wished they'd had cancer-because they could have a normal life after chemo-I know our life will never be normal again.We will always be watching and waiting for it to rear its head and dominate our thoughts and lives.It is a battle to the death-and kidney cancer usually wins-and then there are the joys of dialysis

[Panda_9]

I find it strange that he cant get an oncologist until he has mets? Does that mean they are saying the cancer is definitely going to metastisize? 
I didnt think it worked that way.

[angieskidney]

sorry for going off-topic in this thread too-

I saw someone say they wished they'd had cancer-because they could have a normal life after chemo-I know our life will never be normal again.We will always be watching and waiting for it to rear its head and dominate our thoughts and lives.It is a battle to the death-and kidney cancer usually wins-and then there are the joys of dialysis

True. The grass is always greener on the others side.

[glitter]

I find it strange that he cant get an oncologist until he has mets? Does that mean they are saying the cancer is definitely going to metastisize? 
I didnt think it worked that way.

i probably am not saying it right-right now he is considered 'cured' -it isn't definite -just most likely......maybe I just feel so discouraged....hopefully he will never develope more-but I keep reading and it just looks so scarey. the stats are so grim.

[Zach]

Well to make a long story short:

My PTH was 3,000+ at that level ALL the calcium was pulled from my bones making my bones very brittle, I fell and when I did I broke my hip. A week later I twisted the wrong way and broke my other hip. Well 5 years later I am still waiting for my bones to heal.   You may ask why not get a couple of artificial hips? Well my bones are so bad a hip stem being put in might cause more problems i.e. brakes in different places. So you better take care or your Phosphorus and Calcium levels and get your Ca.times Ph.product low so they can give you Calcijex or other vitamin D drug to keep your PTH low so your bones can stay healthy. BECAUSE BELIEVE ME BEING IN A WHEELCHAIR SUCKS LIKE A MOFO.

I crossed posted this in another thread.

Forewarned is forearmed.
 

Thank you Epoman. RIP

[okarol]

Is PTH something that is checked in a renal patient's labs routinely? Or is it something we should ask to be checked? I have always been a bit hazy on this question.

[angela515]

Is PTH something that is checked in a renal patient's labs routinely? Or is it something we should ask to be checked? I have always been a bit hazy on this question.

At my clinic, it is something that is routinely checked, however I was told that it didn't used to be. I think it wasn't until recently. Which when I went back and looked at my labs and so forth when I was on dialysis in 1999, they did NOT check it back then.

[kitkatz]

PTH has to be checked regularly.  It is a signal if you bones are leaching too much calcum out of them. PTH hormone signals the body to give in some way to fix the calcium or phosphorous in the blood.  Too much can lead to calcification of the lungs and to brittle bone sydrome.

[angela515]

correct Kit, but it wasn't checked regularly like it is now....

[brenda]

Like Angela said. Years ago when I started dialysis they never checked mine at all until maybe after 5 years. A few years ago they started doing it every 6 months. Now it is done with monthly blood work. Here anyway.

[charee]

Here in Aus my pth had been checked every 3 months before i  even started dialysis , and now that i have started its checked about the same.