Calciphylaxis: success notes

This article is not intended to diagnose or treat any ailment including Calciphylaxis. This is a success story and includes notes on what treatments helped the healing process.

    When we first found out that Dad had calciphylaxis, we didn't even know what it was. After going home to Google it, we were shocked beyond words. For a more detailed explanation of what Calciphylaxis is, I would advise doing your own research and speaking to a healthcare professional. This article will simply explain our success story with dealing with it. I will tell you the end result first and then explain what we did to solve the problem. The end result is that it has turned around and is about 99% gone. Dad still has about 3 weeks to a month left of caring for the wounds, which have been declared 'healed' by his wound care specialists.
    First things first, THE PAIN. If you or someone you know is dealing with this, then you know exactly what I mean. Before any treatment could be done, it was vital to get the pain under control. The best pain treatment we found for this was LIDOCAINE. At the start, Dad’s wound care specialist gave him prescriptions for lidocaine patches. These are about 6"x6" (maybe smaller) gel like patches that cling to the skin. The lidocaine took the pain away fairly well, in addition to strong pain medication. This took the pain from a screaming 10 to about a 6 or 7. We would apply the patches directly on his wounds at home once every day. This was very difficult, because there weren't many patches in a box, and it was one box per month. Lidocaine also comes in a tube, about the size of a Neosporin tube. This tube was supposed to last for 30 days...yea right. Something had to change, and it did...
    My mother and I went to our local CVS Pharmacy to look for any additional otc ointments we could possibly try for him. At this point, we had already tried everything under the sun, from pure aloe, to aloe juice, honey, prescription honey, colloidal silver, our own homemade herbal poultices, Neosporin, the list goes on and on. Everything burned him. The only thing that surprisingly didn't burn him was, believe it or not, an apple cider vinegar/water solution, equal parts of each in a spray bottle. We sprayed it on to stop any infection from growing. Neither mom nor me have any kind of medical degrees. We're just average people, but we had to jump in and do something, anything. We were at our wits end, and basically preparing for him to die a very slow, agonizing, horrible death.
    While looking through the ointments at CVS, we discovered many things that have lidocaine in them. The lidocaine he was prescribed was 2.5%, which was the amount in pretty much every ointment we found...except one. We found CVS brand BACITRACIN WITH PAIN RELIEF. It's in a brown and white box. This one has 4% lidocaine and worked! It numbed the pain wonderfully. There is another one called StaphASeptic that we used before we found the Bacitracin, and the StaphASeptic kills infections. At this point, gangrene had not still set in so we were still hopeful. We weren't completely sure why it hadn't turned gangrene but we assumed it was because of the apple cider vinegar/water solution we cleaned the wounds with everyday and the StaphASeptic ointment. To be diplomatic, this is only our guess. We really can’t say if gangrene would have set in if we hadn’t done this.
    Once we got the pain under control, we had to address the internal issue of how it all started to begin with. Dad, who is a dialysis patient, went in for dialysis one morning, in pain of course, and his doctor was there. He told Dad that if he could bring his phosphorus down to 3 or 4, he might have a chance. He needed to take binders with his food, to pass the phosphorus instead of storing it in his body. He was prescribed PhosLo. Now, nothing against the doctors, pharmaceutical companies, or the drug itself, but it didn't work for him. In fact, his phosphorus went higher. It might work for someone else, but it didn’t work for him. He decided to switch to taking TUMS. After a few weeks, his phosphorus went down to 5 and even as low as 4 something. He then switched back to PhosLo at the request of his doctor, and his phosphorus went higher again. He then switched back to TUMS again and it dropped again. His body responded well to the TUMS and this is what he is still using. I will be honest and say that buying TUMS every few days got to be pricey, but there's no price for a human life. It was worth it the cost.
    When this whole calciphylaxis thing started, we noticed that his wounds began as dark patches on his body, similar to what burn marks look like. Dad described the pain he felt from the marks as someone holding a lit match to his skin. The marks would grow bigger what seemed like every couple of days. The marks would get hairline cuts in them, and from there, they would burst open. Every time we saw a new one, we would just bury our faces in hand and cry. Over time, they had grown so large and so deep that you would swear a shark attacked him. We thought to ourselves, ‘there is no way a human can go through this’. Dad had made up his mind to stop going to dialysis and quietly die at home. If the end result would be the same in either case, why not take the easier road, instead of being eaten alive from the inside out? Nobody blamed him. But then, something interesting happened that gave him hope: Once his phosphorus had stayed down, we noticed that the wounds had not grown any larger. Granted, they hadn't shrunk either, but this was something new. They stopped growing!
    Mom and I were relieved, but also confused as to what to do next. We're not experts remember. We didn't want something to just treat the symptoms until he died, we wanted something to stop it and turn it around so he could live. We researched night and day how to turn it around, but it seemed like all we found were case studies that didn't end well. Now come on, we can send a man to the moon, fly an airplane across the world without defying gravity, and even converse with friends on the other side of the world via Skype, but we can't heal a wound??? No way. No giving up. 
    We got in contact with a particular home healthcare company, no names being mentioned, which turned out to be a joke. Why that company's "professionals" are allowed to keep their jobs is beyond me. About a week later, a dear family friend of ours named Rachel, who worked in a healthcare facility, heard about the problem with the first company we tried to contact, and was able to pull a few strings. She contacted a different company called APEX Home Healthcare, whose nurses turned out to be some of the most caring souls to walk the planet. I'd like to take a second to mention Mary Jane, who as it turns out loves wounds. She finds the care of them fascinating, and watching them heal, the processes that take place within the human body that respond to the care. She has intense studies on wounds of all sorts, and is continuing her education on healing them. Once Mary Jane and her team came in, she had a whole slew of materials to help heal Dad’s wounds. She was honest and said that it would take several months to heal. However, if you are familiar with calciphylaxis, you know that this is not only realistically expected but also a welcomed comment to hear instead of “There’s nothing to be done.” She brought in all sorts of cool materials to help him heal as fast as possible. These were things I had never heard of before. Once she started administering, the process took about 2 hours to complete everyday for a few months. Today it takes 10 minutes or less. Talk about healing!
    The first thing she did was encourage him to stop using the Lidocaine patches altogether. The lidocaine cream was ok to use, but the patches had to go, since she couldn't administer anything else if they were on. The materials used for every patient can vary, especially depending on what stage the wound is in. For dad, she used absorbable materials to draw out the moisture and any infection. She also used a silver on his wounds, and in the beginning it did hurt him quite a bit. He described the pain as 'someone putting pressure up against the wounds without let up.' Mary Jane and all the nurses encouraged him to deal with the pain as best as he could, since it would only be a few weeks with the silver treatment and it would heal nicely. Dad, being the man of steel that he is, took the pain, with the hope of healing. The silver worked great. His wounds had shrunk some, and gangrene was nowhere in sight.
    The materials used to help the wounds changed according to each stage of his healing. The main goal was to dry them out, keep infection away, encourage blood flow, and keep phosphorus levels low, while keeping the pain level as low as possible. He was still using the lidocaine cream, even though it kept the area moist. It was still too painful without it. Over time, we could see new skin forming over the wounds. He was also going to wound care once a week for debreeding the wounds. Dr. Shaw is one of the sweetest wound care specialists, so he worked well with the APEX staff. At one of the wound care treatments, a grand moment took place. Dr. Shaw, who is always very careful, accidentally snagged the new skin and tore it. As the blood from the wound began to flow, Dr. Shaw stopped the bleeding and said with a great big smile, "Hey! There's blood!" Dad, who was nervously wondering why the Doctor was so happy, said in response, "Really?" Dr. Shaw smiled bigger, "Yes! It's a great sign. Blood means healing. You're getting oxygen to the wounds now, so they'll heal faster." Needless to say, Dad went home with a happy grin. It seemed like he didn't even feel the pain anymore for the rest of the day.
    His wound care treatments had been set for once a week. After about 8 months, they were reduced down to just twice a month, as there was hardly anything left to debreed. Now it's been reduced again to once a month. The wounds have all been declared healed by both Dr. Shaw the wound care specialist, and by the APEX nurses. He has new skin growing back. At this point, the lidocaine has been halted because the new skin has to stay dry. As it dries, it will scab, which is a very good thing.
    I wrote this for anyone who is dealing with Calciphylaxis and doesn't know what to do. We did not know what to do, and it was a lot of trial and error. We had to roll up our sleeves and deal with the wounds ourselves. We bought tons of rubber gloves and medical supplies. It seemed we were drowning in this nightmare. Calciphylaxis is rare and there are not many articles on how anyone dealt with it. Now that we have come full circle with success, we must share our notes on what we did to turn it around. I am not a Doctor, as I have mentioned earlier, so I cannot tell you exactly what you need to do. All I can do is tell you what my mother and I did for my father that worked for us. I hope this helps someone one day, and that they too may have a success story.