New to Renal Failure and I have Calciphylaxis

[Tigz]

Hi everyone.  I'm 43 year old female from the UK.  Didn't know I had anything wrong with my kidneys until I ended up in the back of an ambulance in January nearly dying.

My one normal sized kidney decided to give up then and hasn't been inclined to restart ever since.  Bloods still in a mess.  Been on dialysis for just over 10 weeks.  Last week changed hospitals and new consultant diagnosed me with suspected Calciphylaxis.  Started on medication and 6 days dialysis a week immediately.

Feel incredibly sore and terrified for what will happen to my kids if the worst happens.  Would love to speak to people with experience of Calciphylaxis as information is very thin on the ground.

Thanks.

[Rerun]

Hello, and I'm so glad you found us.  I was also in an Emergency Room  before I knew I had kidney failure.  Still thought they could put me on an antibiotic and send me home.....NOT!   28 years later I'm still hanging on.

I hope you come here often and learn all you can.

Welcome - Rerun, Admin.

 

[Rerun]

 

[Darthvadar]

Hello and  to IHD...

I'm just 'next door' to you, in Ireland....

Visit us often.... We're always here for each other...

Darth... Moderator...

[jcanavera]

Sorry I'm late to reply.  My wife has had a bad 9 month stretch.  In January of 2015 she started noticing lumps in her breasts.  Then they started in her stomach area.  Doctors kept telling us to see other docs and in the meantime the lumps got bigger, painful, and she noticed bruising in the lump area.  As the pain and discoloration worsened she was told to get a mammogram.  No cancer and again a referral to another doc.  This time a plastic surgeon to do a biopsy.  Biopsy says maybe calciphylaxis, maybe a cancer.  Doc says he doesn't believe cancer but in the meantime we wait for second opinions.  In the meantime things get worse pain is worse, tissue in the affected areas is getting stabbed over.  Finally in June due to pain and lack of eating she goes in the hospital.  New biopsy is done and results come back calciphylaxis.  Nephrologist is perplexed on this since her calcium and phosphate levels are good.  She's also on PD.  Bottom line they can't find a trigger.  More research and he calls and says to stop her vitamin D  supplements and Warafin (she had afib).  At that point, now July, he starts her in IV therapy with Sodium Thiosulphate.  She also has surgery to remove dead tissue in her breast and stomach.  So now we are relegated to going up to the dialysis center 3 times a week for 90 minute infusion sessions through a Hickman port in her chest, and doing wet to dry wound packing along with using a wound vac. 

The positive side is the sodium Thiosulphate is working albeit is a slow process.  The wounds are painful and the sodium thiosulphate is giving her increasing bouts with insomnia the last 3 weeks or so.  The lumps are getting smaller in size and other than the pain from the wounds and sleeplessness she is getting better.  The wound in the stomach area is doing very good, the breast wound shows improvement at a much slower rate.  I think she will probably on this treatment till January.

Research is starting to show that Warafin treatment used with afib may now be a contributing factor in dialysis patients developing calciphylaxis.  Normal calcium and phosphorous levels do not always indicate that calciphylaxis might be active..  PD patients can get this even though it seems that hemo patients in the past were the primary group showing symptoms.  Our local hospital has been seeing an increase in dialysis patients being treated.

Bottom line if you suspect you may have the symptoms, you may need to push to get a biopsy done to know.  If the docs pass you around and you have to wait for appointments for weeks, this stuff can get out of control fast.  The breakdown in my wife's tissue occurred over 6 weeks while we waited for appointments, biopsy analysis, Hickman port placement and Doctor vacations and other approvals from the dialysis center folks to follow this treatment on a patient wanting to stay on PD.  If yo are aggressive and can get started before the skin requires surgery, you will be so much better off.  Warafin will not be given to her again and she can't tolerate the new blood thinner drugs out there.  Once she gets through this she will get a Watchman clot implant to protect her from stroke due to afib events.

So Calciphylaxis is treatable now with positive results.  The key is early detection and treatment.  The high mortality rates in the past has been due to the wounds caused by the skin breakdown. 

Jack

[jcanavera]

Sorry I'm late to reply.  My wife has had a bad 9 month stretch.  In January of 2015 she started noticing lumps in her breasts.  Then they started in her stomach area.  Doctors kept telling us to see other docs and in the meantime the lumps got bigger, painful, and she noticed bruising in the lump area.  As the pain and discoloration worsened she was told to get a mammogram.  No cancer and again a referral to another doc.  This time a plastic surgeon to do a biopsy.  Biopsy says maybe calciphylaxis, maybe a cancer.  Doc says he doesn't believe cancer but in the meantime we wait for second opinions.  In the meantime things get worse pain is worse, tissue in the affected areas is getting stabbed over.  Finally in June due to pain and lack of eating she goes in the hospital.  New biopsy is done and results come back calciphylaxis.  Nephrologist is perplexed on this since her calcium and phosphate levels are good.  She's also on PD.  Bottom line they can't find a trigger.  More research and he calls and says to stop her vitamin D  supplements and Warafin (she had afib).  At that point, now July, he starts her in IV therapy with Sodium Thiosulphate.  She also has surgery to remove dead tissue in her breast and stomach.  So now we are relegated to going up to the dialysis center 3 times a week for 90 minute infusion sessions through a Hickman port in her chest, and doing wet to dry wound packing along with using a wound vac. 

The positive side is the sodium Thiosulphate is working albeit is a slow process.  The wounds are painful and the sodium thiosulphate is giving her increasing bouts with insomnia the last 3 weeks or so.  The lumps are getting smaller in size and other than the pain from the wounds and sleeplessness she is getting better.  The wound in the stomach area is doing very good, the breast wound shows improvement at a much slower rate.  I think she will probably on this treatment till January.

Research is starting to show that Warafin treatment used with afib may now be a contributing factor in dialysis patients developing calciphylaxis.  Normal calcium and phosphorous levels do not always indicate that calciphylaxis might be active..  PD patients can get this even though it seems that hemo patients in the past were the primary group showing symptoms.  Our local hospital has been seeing an increase in dialysis patients being treated.

Bottom line if you suspect you may have the symptoms, you may need to push to get a biopsy done to know.  If the docs pass you around and you have to wait for appointments for weeks, this stuff can get out of control fast.  The breakdown in my wife's tissue occurred over 6 weeks while we waited for appointments, biopsy analysis, Hickman port placement and Doctor vacations and other approvals from the dialysis center folks to follow this treatment on a patient wanting to stay on PD.  If you are aggressive and can get started on treatment with sodium Thiosulphate before the skin requires surgery, you will be so much better off.  Warafin will not be given to her again and she can't tolerate the new blood thinner drugs out there.  Once she gets through this she will get a Watchman clot implant to protect her from stroke due to afib events.

So Calciphylaxis is treatable now with positive results.  The key is early detection and treatment.  The high mortality rates in the past has been due to the wounds caused by the skin breakdown. 

Jack

[jcanavera]

Sorry I'm late to reply.  My wife has had a bad 9 month stretch.  In January of 2015 she started noticing lumps in her breasts.  Then they started in her stomach area.  Doctors kept telling us to see other docs and in the meantime the lumps got bigger, painful, and she noticed bruising in the lump area.  As the pain and discoloration worsened she was told to get a mammogram.  No cancer and again a referral to another doc.  This time a plastic surgeon to do a biopsy.  Biopsy says maybe calciphylaxis, maybe a cancer.  Doc says he doesn't believe cancer but in the meantime we wait for second opinions.  In the meantime things get worse pain is worse, tissue in the affected areas is getting stabbed over.  Finally in June due to pain and lack of eating she goes in the hospital.  New biopsy is done and results come back calciphylaxis.  Nephrologist is perplexed on this since her calcium and phosphate levels are good.  She's also on PD.  Bottom line they can't find a trigger.  More research and he calls and says to stop her vitamin D  supplements and Warafin (she had afib).  At that point, now July, he starts her in IV therapy with Sodium Thiosulphate.  She also has surgery to remove dead tissue in her breast and stomach.  So now we are relegated to going up to the dialysis center 3 times a week for 90 minute infusion sessions through a Hickman port in her chest, and doing wet to dry wound packing along with using a wound vac. 

The positive side is the sodium Thiosulphate is working albeit is a slow process.  The wounds are painful and the sodium thiosulphate is giving her increasing bouts with insomnia the last 3 weeks or so.  The lumps are getting smaller in size and other than the pain from the wounds and sleeplessness she is getting better.  The wound in the stomach area is doing very good, the breast wound shows improvement at a much slower rate.  I think she will probably on this treatment till January.

Research is starting to show that Warafin treatment used with afib may now be a contributing factor in dialysis patients developing calciphylaxis.  Normal calcium and phosphorous levels do not always indicate that calciphylaxis might be active..  PD patients can get this even though it seems that hemo patients in the past were the primary group showing symptoms.  Our local hospital has been seeing an increase in dialysis patients being treated.

Bottom line if you suspect you may have the symptoms, you may need to push to get a biopsy done to know.  If the docs pass you around and you have to wait for appointments for weeks, this stuff can get out of control fast.  The breakdown in my wife's tissue occurred over 6 weeks while we waited for appointments, biopsy analysis, Hickman port placement and Doctor vacations and other approvals from the dialysis center folks to follow this treatment on a patient wanting to stay on PD.  If you are aggressive and can get started before the skin requires surgery, you will be so much better off.  Warafin will not be given to her again and she can't tolerate the new blood thinner drugs out there.  Once she gets through this she will get a Watchman clot implant to protect her from stroke due to afib events.

So Calciphylaxis is treatable now with positive results.  The key is early detection and treatment.  The high mortality rates in the past has been due to the wounds caused by the skin breakdown. 

Jack