calciphylaxsis

[tito]

All through this spring I had a strange lesion on my leg and discoloration of some of the skin. Nobody seemed able to diagnosis it - I went to an infectious disease specialist, was passed on to a surgeon, etc. Finally, a dermatologist did a biopsy. It was a very deep biopsy, probably the most painful procedure I have ever encounterd.

It came back as caciphylaxsis, a complication of dialysis wherein phosphorous binds with calcium to form crystals which obstruct small blood vessels, leading to necrosis of the skin layers. It used to be fatal, but now there are treatments.

First, PTH and phosphorous are brought down using sensipar. I do not know why my nephrologist did not put me on this earlier. The sensipar seems to be working, as my PTH is going down. The calciphylsxsis has been very stable - I only have one lesion. I went to Mexico for two weeks, had a great time and still it was quite stable.

The next step, and this is quite big, is going into the hospital three nights per week for hemo (I do PD), to get super dialysis with a clearance over 3.0. Also, I will have infusions of sodium thiosulphate, which binds with calcium in the body. This will last for 8-12 weeks. I have to have a cather implanted for the temporary hemo. This will be done today. Wish me luck!

[jeannea]

I didn't know about this problem. Doesn't sound fun. I hope your treatments work! The temporary hemo won't be too bad.

[aharris2]

It used to be fatal, but now there are treatments.

Tito,

I am sorry you're one of the rare few who has come to know about calciphylaxis. It is good to know that sodium thiosulfate is now a TREATMENT for it. My brother (Epofriend) had it in 2003 when it had a 90% morbidity rate and he survived! Back then, sodium thiosulfate was considered less than experimental and we tried but could not get anyone to administer it. Lesions developed over the course of about 5 months. We then fought infection which almost won once. It took 4 years to heal all of the wounds.

Good for you that you are traveling! I hope your treatment goes well and hope that you will keep us updated on your progress (the spectre of calciphylaxis does continue to hang over a survivor). If you have any questions, feel free to ask.

Alene

[tito]

About two weeks into my treatments now. Hard to adjust to in-center overnight hemo after three years of PD. I take things to make me sleep, plus I have great headphones to seal out the world.

The one lesion is actually shrinking now. The discoloration of the skin in other places is lessening. I wont be able to go back to work (I'm a teacher) come Sept. 1 but hopefully they'll get a good sub until this is over.

I do, I believe, have a very mild case of calciphylaxsis which was caught begore it became bad. Scared myself by reading all those papers on the internet, plus searching Google Images. Did not want to die this way, full of lesions, infections, sepsis, etc. Was thinking of alternate way out. Thank G-d for sesipar and sodium thiosulphate.

[Traveller1947]

So relived to hear that things are turning around for you , tito.  I'll be praying for your continued recovery.  All the best to you.

[jeannea]

Always try not to Google yourself into a full blown panic. Glad to hear the treatment is helping.

[tito]

Overnight hemo continues as does sodium thiosulphate. Good results so far - lesion shrinking, legs look healthier, some itching where things are healing. Cannot sleep in overnight hemo. I get there at 7 and they kick me out about 3 AM. I have to drive home (5 minutes) and am wide awake. Then I sneak into bed trying not to wake the dogs and my wife. Can't get to sleep right away. This is like doing 3 all-nighters a week, something I didn't do in college and I'm not about to start now. This has got to end soon! Not healthy.

[amanda100wilson]

any chance of doing extended home Hd?

[tito]

Good Idea, but the hemo is only temporary (8-12 weeks total, 4 weeks under my belt already). I'm doing PD in between, and I'll be going back to PD exclusively. I have a catheter and not a fistula. If I ever had to go to hemo, I would choose home hemo - although my wife would be my partner and she hates blood!

The good thing is that after this calciphylaxsis clears up, I'll be back on the transplant list. I'm listed in Vermont (live in Boston), and I'm at the top of their list (3 years) for B pos blood!

I live in Boston and was thinking of getting the transplant at Brigham and Women's Hospital - great national reputation, but their care of day-to-day patients is terrible! Had a hip replacement there two years ago that left me permanently disabled with a paralyzed foot and leg!

[tito]

For those following the saga of calciphylaxsis, I'm now eight weeks into my treatment. The scab fell off the one lesion I had, revealing nicely healing skin. The lesion had been deep, now it is now filled in. I'm telling my doctor that I want to terminate the treatments. I am not feeling well a substantial part of the week because of these overnight treatments. I want to get back on PD exclusively. My phosphorous is down to 2.2 and BUN at 35. Now there is a discrepancy of expectations - the transplant clinic in Vermont says it's up to my nephrologist, whereas he says it's up to them. Always some problem to argue about - does it ever stop?

[aharris2]

Congrats on your healing calciphylaxis wounds!

[tito]

At nine weeks, I told my nephrologist that I wanted to stop the overnight hemo. It was just too disruptive to my overall health (as I was not sleeping), and the lesion appeared to be almost healed. The big scab fell off, revealing healing skin.

I was referred to a surgeon who has lots of experience with calciphylaxsis lesions. He said he saw to reason why I should not be on the transplant list. And yet, my nephrologist is waiting until I can have an adequacy test to remove my catheter. He has yet to contact the transplant programs with which I am listed. My lesion continues to heal (hard to even see it now), and I am back on PD only (and sleeping!). I do not see what the adequacy test has to do with being on the transplant list.

I spent two weekends away (one in NY to go to the Metropolitan Opera and eat at Bobby Flay's restaurant for our anniversary), last weekend to go to Philadelphia to visit my wife's aunt for he birthday). My PD was somewhat sporadic, so I did not want the adequacy test until I stopped traveling.

It looks like the calciphylaxsis treatment was successful - and it was caught early.

[M3Riddler]

At nine weeks, I told my nephrologist that I wanted to stop the overnight hemo. It was just too disruptive to my overall health (as I was not sleeping), and the lesion appeared to be almost healed. The big scab fell off, revealing healing skin.

I was referred to a surgeon who has lots of experience with calciphylaxsis lesions. He said he saw to reason why I should not be on the transplant list. And yet, my nephrologist is waiting until I can have an adequacy test to remove my catheter. He has yet to contact the transplant programs with which I am listed. My lesion continues to heal (hard to even see it now), and I am back on PD only (and sleeping!). I do not see what the adequacy test has to do with being on the transplant list.

I spent two weekends away (one in NY to go to the Metropolitan Opera and eat at Bobby Flay's restaurant for our anniversary), last weekend to go to Philadelphia to visit my wife's aunt for he birthday). My PD was somewhat sporadic, so I did not want the adequacy test until I stopped traveling.

It looks like the calciphylaxsis treatment was successful - and it was caught early.

Tito,

The adequacy test has absolutely nothing with being on the transplnat list. Your neph probably wants to see how good/bad the dialyisis is working for you.  If you want to go the transplant route, keep pushing your nephrologist. There is no reason why you can't start getting a work up as it takes many months for all the testing and then there is the actual list where you may wait several years.   

[tito]

Sorry to be a bit incomplete in my explanation - I am already on the list, have been for 3 1/2 years. Have done work-ups at three different hospitals: Brigham and Women's in Boston, New York-Presbyterian and Fletcher-Allen in Burlington, VT. I was on the Brigham list the longest, at 3 1/2 years, but have transferred my time to Fletcher Allen where the wait time is a lot shorter. I was inactivated due to the calciphylaxsis. My nephrologist in Boston needs to contact Fletcher-Allen so I can be re-activated. He is dragging his feet. Once I am re-activated, it should only be a short time because their waiting time for B pos blood type is about 3 1/2 years.

[tito]

Nephrologist said today in my visit that he would contact hospitals - go for transplant. Also having catheter removed. Very happy! I can conclude this thread - although maybe I should do so when I get a transplant.

[okarol]

  Great news! I hope it all works out!

[Whamo]