Two Droplets

Two droplets. It doesn’t sound intimidating. It actually sounds pretty harmless. Sometimes, however, two droplets is a unit of measure so enormous, so catastrophic, that it has the ability to forever change the course of life.

In June of 2010 my husband was a perfectly healthy 26 year old man. We were living life with our almost 3 year old daughter and our one year old triplets (two boys and girl). Life was as normal as it could be for a family with that sort of dynamic. On another one of our ordinary days, the bathroom sink became clogged. My husband used a widely sold drain cleaner in an attempt to fix the issue. He poured the chemical into a funnel placed in the pipe under the sink and that’s when it happened. Two droplets. The funnel burped and two droplets of the chemical hit the back of his hand. We had no clue at that moment our lives would never be the same.

The chemical began to eat away at the skin. We lived 5 minutes from a local hospital, so I snapped a photo of the ingredients on the bottle and we headed off to the emergency room. The hospital called poison control and proceeded to follow protocol in treating the chemical burn. He ended up having a skin graft performed to cover the wound area which was not much larger than a quarter. Done, right? End of story? Not even close. It was only the beginning.

After a few uneventful months, the grafted area began to ache. It was an ache that he would become all too familiar with moving forward. The ache was followed by redness in the area, which quickly evolved into necrotic (dead) skin and flesh. The wound spread beyond the grafted area and became a bit larger. He was admitted to the hospital and another graft surgery was performed. It didn’t fix the problem. Neither did the next one, or the next one, or the next one.

Without any warning to go on but the familiar ache, the back of his hand would repeatedly die over the course of the next 5 ½ years. There was no apparent reason and no solid diagnosis. Every time, the wound would grow larger. It eventually covered the entire surface of the back of his hand. We saw so many specialists and doctors in our hometown of Milwaukee, WI but we found nobody who could help or make it stop. Eventually I reached out to a specialist at a research hospital within driving distance of home. My thought was a teaching, research facility could provide answers we could not find in our city limits.

They had theories at that hospital and medications to treat those theories. Lots of medication. Enormous amounts of medication. They eventually had him up to taking 27 different oral medications in a day along with intravenous drugs. The thing is: medications have side effects. Two droplets turned into a chronic wound, turned into me sitting bedside at the hospital with our four babies, watching my husband deteriorate to the point that he nearly lost his life. We left that hospital and the potential “cure” that was killing him.

We came home to regroup. I spent many long days and nights researching, reading through medical journals and articles, and reaching out to any resource I could find that I thought might lead to some answers. All the while my husband continued to suffer, and the awful “thing” continued to flare up and invade our lives. The kids and I spent our evenings and weekends going back and forth from the hospital, visiting dad and trying to help him feel better while we ourselves were falling apart inside. Nobody understood what was happening, and to this day I don’t know how to answer people’s questions when they ask what is going on and probe for information regarding the plan.

We traveled to some of the best hospitals in the country in search of answers including the Mayo Clinic and the Cleveland Clinic. While the hospitals were incredibly impressive and the doctors and nurses at both locations were very kind to us, they were unable to make a solid diagnosis or provide answers. These places were supposed to be where one goes for answers nobody else can find. We thought for sure we would reach the end game through one of those medical giants and get our lives back. We were wrong again.

To keep a story so long I could create a page count to rival War & Peace short, he ended up having 27 surgeries in total to try and remedy the issue. He had grafts and flaps and even had his hand sewn into his stomach for three weeks. None of it worked. His body has served as harvesting ground for his hand. Both of his upper legs, an upper arm, his groin area, and his abdomen are covered with scars from donor sites. Oddly, those sites have all healed and never experienced the dreaded necrosis. His hand, however, kept relentlessly dying. It got to the point that he was spending as much time in the hospital as he was at home. The flares were getting closer together and more aggressive.

While he felt all of the horrible physical pain that comes along with a part of your body dying over and over, our entire family suffered along with him in other ways. It is so incredibly, heart wrenchingly difficult to watch a person you love writhe in pain while you stand by watching, unable to make it go away. Eventually I became unable to say with honesty or sincerity that it will be okay, or that this too shall pass. We began to feel hopeless. Our kids, now 8, 6, 6, & 6 had spent every bit of their lives they could remember visiting dad in the hospital and being unsure of what each day would bring to our family. They started to look around at their peers and began to realize that our “normal” wasn’t really normal at all. This was a difficult realization for them, and they have grown to join me in the waves of fear and sadness. Watching our children worry and cry for their dad is hard, and while we can guarantee them everlasting love and some delicious ice cream treats, we could never promise them the struggle would end soon.

On December 15, 2015 my husband made the difficult decision to have an amputation performed. It had been suggested by a few doctors in the last couple of years and was considered the heavy end game to the awful journey of trying to save the limb. He decided that he had done everything and couldn’t take it anymore. He decided he was through suffering, and he was through watching his wife and children suffer. It became clear that quality of life with one hand would be superior to the quality of life that came with a dead, diseased, and painful hand. It was time. The hand was removed and a few days later we walked out of the hospital for what we had hoped would be his last inpatient experience. The weeks that followed the amputation were difficult at times, but he made it very clear to everyone he had no regrets. He felt physically better than he had in years, and for the first time in so long we were looking forward with optimism. We were all able to breathe and felt a massive weight lifted off our shoulders. He had lost his hand, but we were taking our lives back! That was the plan anyway.

On February 12, 2016, just shy of 2 months post-amputation, the familiar, awful, life shattering ache returned. Shortly thereafter, so had the mysterious necrosis, spreading across the end of his newly healed stump. That stump represented the fact that he literally gave his right hand in exchange for a better life, and now the end of it wears a taunting badge of the dead flesh we thought had been removed from our lives for good. What a tremendous slap in the face. This “thing” with no face and no name has returned to destroy our lives and our dreams of a normal future without constant pain and suffering.

I sit here today, writing this at my husband’s bedside because I don’t know what else to do. I want to help. I can’t. There is nothing I could possibly say to him to make this better. There is nothing I can do to remove the pain or to provide a solution. Two droplets. That’s all. I don’t know why this is happening, and I don’t know where we go from here. Having visited such prestigious medical facilities to no avail has me at a loss. They don’t know what to do for him. We are at the point that his treatment is the classic definition of insanity; they do the same thing over and over hoping for a different result but it doesn’t work. The antibiotics don’t kill this thing. The pain medications can ease his physical pain but the emotional and mental pains are another story completely. Where do you go when you have lost hope? Where do you go when you feel you have been everywhere? What do you do when you come to the realization that nobody can help you and this thing will continue to rage on in your body indefinitely? I suppose my thought at this point is: I go to the internet. It is 2016, right? This is how things are done and people are reached. If I am to retain any hope this will end, I have to believe there is an elusive medical professional somewhere that has the brilliance, the heart, and the determination to help my husband. There HAS to be a person able to figure this out, to understand what causes this and to make it stop. I have to believe that. It’s all we have to hang our hats on.

I want to make it clear that I did not write this in hopes of a handout. I have a full time job that keeps our mortgage paid and food on our table. We have an (obviously much needed) excellent health care plan. I also did not write this for pity. While I have just laid out all of the sadness in our lives, I need to point out my awareness of our blessings as well. I thank God for them daily. I know there are people with far worse issues. Our four children are healthy, intelligent, kind, phenomenal human beings. We have a network of family and friends that are incredibly loving and supportive. They have not turned their backs on us in times of need; in fact our village has grown larger and stronger. My husband is the pillar of strength. He has shown me, our children, and everyone we know what it means to be strong in the face of adversity. He is brave and he does not often complain about his situation. He keeps a good sense of humor no matter what is happening. He understands how blessed we are and he appreciates all we have that is good. He is an extraordinary father to our kids. In fact, he is the best father I have ever met in my life. I could write another essay completely to discuss how wonderful he is and how he would do anything for anyone without a second thought.

Here are three things I do want:

  1. If you have read this far, please take a moment to reflect upon your own life and find the time to count your blessings. If you have a family that is healthy and whole, be appreciative. Don’t take a single, ordinary day for granted. You never know when it can change. It only takes a split second, or two droplets, to make that all go away.

If you are not well or face similar illness-related adversity in your life, know that we pray for you.

  1. If you know of a bright health care professional that you think may be able to help us, please share this with them. If you believe you may be within 6 degrees of separation from a person matching that description, please share this. Basically, I would like my husband’s story to land on the eyes and ears of as many people as possible in hopes that it will reach someone who can help. I don’t know what else to do. If you believe you are that person, please, help us. We have much more information to share with medical professionals regarding procedures performed, test results, suspected systemic issues, and the like. I didn’t want to get too far into the medical specifics and terminology so as to lose the interest of the people I need to share this story. We have a duffel bag full of medical records that I would LOVE to bring into the office of a person with some ideas. Have records, will travel.
  2. If your sink is clogged, call a plumber.

 

If you can help or have a referral, please email: twodroplets@yahoo.com

If you know us, please keep our names from the public as we do not want unwarranted attention. I will look at every e-mail received and respond accordingly to those we feel are safe and potentially helpful. Thank you so much.

WARNING: GRAPHIC IMAGES BELOW

 

117 thoughts on “Two Droplets

  1. I want to go ahead and leave a comment here to address the most common questions/suggestions I am receiving: No, I do not want to put out the name of the drain cleaner due to the fact that the statute of limitations for product liability has passed. We have not sued and that ship has sailed. I am no legal expert, but I fear blasting the company on the internet would land me in some legal trouble so I will keep the brand name to myself. Next, it is not necrotizing faciitis. That was ruled out. We have also explored the possibility of pyoderma gangrenosum at length with no success. My husband has been to wound care centers and has undergone a ton of hyberbaric chamber treatments, so our answer does not lie there. I have received an enormous response, far beyond what I ever dreamed, and I appreciate the kindness of every single person that has taken the time to pray for us and offer suggestions. I will spend the coming days sorting through e-mails and comments and get back to everyone I feel will be of help to us. If you are sharing this and/or taking the time to offer resources and suggestions I thank you from the depths of my heart. I am humbled beyond words. Please keep sharing. ♥

    Liked by 18 people

    1. I shared it with a doctor who responded to you directly. I’m praying that you are able to find a solution. My heart goes out to you and your family.

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    2. My heart aches for you and your family… I don’t have any answers, but I will keep you and your family in my prayers. I know that there has to be someone who has the answers you so desperately need, and I will share your brave story in the hopes of getting it to the right person. May God continue to be in your midst, strengthening each of you. I have been through challenging circumstances, and it is easy to become discouraged. Sometimes, faith and the support of loved ones is the only way we can get through the day. ❤️

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      1. Are you frikkin kidding???? She’s suffered from a life changing ordeal and you want to sell her snake oil? You have some nerve.

        Liked by 3 people

    3. Im no doctor, but i can say that the medical world often has the answers but dont care to share them…it might expose a major arsenic in that drain cleaner that theyre helpin cover up, or they could just stand to make a bigger profit by treatin u instead of curing u. That would b the medical industry=big business.
      That bein said, my advice to u is to look to natural ways of healin. Me n my Dad prolonged my Mothers life by years through natural remedies….the best thibg about natural remedies is there is no side effects! U have nothin to lose n everythn to gain! If i was u i’d start by havin my husband fast for 24-48 hrs, (its now proven thay fastin causes white cell death, and regeneration; kick startn ur whole immune system) then i’d put him on an all organic whole foods based diet. Ur inside overall health controls every aspect of ur body…then i’d be online lookin for herbs for cell regeneration/ natural remedies for skin & cell death. U can make a salve out of any herb n treat the area topically. If the inside n outside are working together at 100% then he’ll have a much better chance. He probably could really use the chemical detox after all the different chemicals he’s been exposed to. Good luck to you, ur husband and ur whole family! God bless..

      Liked by 1 person

      1. I appreciate you wanting to help, and while I can wholeheartedly say the medical world does not always have the answers I would be hard pressed to say they are in a massive cover up for a chemical company or even withholding information that could help my husband. Naturally through the course of treatment we have come across some less than wonderful healthcare professionals, but the vast majority of people we have come into contact with have been good to us. I believe that half the nurses in this world are angels sent from heaven, and I have seen brilliant surgeons shed tears in the presence of my family. I don’t want to argue with you, and I realize you are trying to help us, which I appreciate, but I do feel the need to stand up for the many wonderful people in the medical field who have and are currently trying to help us. I don’t have blind faith in them, but I see heart and love in many and I cannot let this situation make me bitter toward an entire industry of people. It isn’t right.

        Liked by 8 people

    4. Hi I’m a nurse and one of the doctors I worked with thinks it could be sweet syndrome. He said if you try to clean it it gets worse. The treatment is exactly the opposite do nothing and give high dose steroids.

      Liked by 1 person

      1. I really wish steroids would help him. He was on a long-term dose of prednisone at 80/mg per day (yes 80…not 8) but the condition simply pushed on and showed no improvement during that time. He was also on cyclosporine, remicaide, and others with no real sign of improvement or progress in his condition.

        Liked by 1 person

    5. Hello, undiagnosed family,

      I have read your story, and I have written you an email in response. It’s from an email address with the same username you see here, but from the Yahoo domain. I am not here to sell you anything, and I don’t want any of your personal information. I am not here to judge or make premature assumptions. I only want to help, as I have been in similar circumstances for 10 years and counting.

      Feel free to add me as an email contact or respond to the email so that it doesn’t go to your Spam folder. Also, you can ask me anything you need to know that you feel might help.

      Thanks!

      Deanna

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    6. I asked this a couple of months ago and maybe my comment was deleted but honestly have you tried any natural avenues? I tried to be sure to read comments before asking again to see if it had been covered. I saw one comment that while I believe in her suggestions on some level, there is more to it than that. I do believe our medical system is for big profit but there is a place for good medical help as well. A good friend of mine just shared part of her liver with her one yr old son this Tuesday. That takes modern medicine. That said I believe God created our bodies to regenerate or have the capacity to heal themselves when given the right things to do so. It sounds like first you need to figure out what is impeding the healing of this situation and take care of that. This approach could take some time and patience but I know it works. Please let me know if you would like more information on a holistic approach. The other person who commented is correct. In the natural, you aren’t going to impede anything doctors are doing. Using a holistic approach there is no potential for overdosing or side effects. So honestly what do any of you have to lose??

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      1. I initially wrote this just a month ago, and I’m sorry I haven’t been able to respond to each and every person. As you can imagine I have had thousands of messages just like yours. I appreciate your kindness in taking the time to reach out and I appreciate your patience and understanding of what I am trying to deal with and sort through at this time. I have tried my best to reach out with gratitude to as many people as possible while dealing with my husband’s health status, sorting through the avenues we have decided to pursue, taking action to get the right information into the right hands, caring for my children, and work.. We are willing to try natural options, a couple of which we have started in conjunction with our pursuit of a modern medical answer. A fully natural approach is not an option we view as viable for us right now as the necrosis has been spreading up on his forearm and we feel time is of the essence in finding an answer. Please understand that I am not complaining to have so much to go through; I am in fact endlessly appreciative. I just need a little patience and grace from those that seem to have lost theirs with me…

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    7. I’m still praying hard for you, your family, and especially your poor husband.

      I’d commented some time ago, though it hasn’t been approved (that’s not a complaint, I’m sure you’re getting hundreds of comments and can’t possibly keep up with them all — hugs!!) about my experience with pyoderma gangrenosum and manuka honey — and how it saved my leg.

      I’ve been following the comments since, and saw that someone else mentioned the manuka honey as well, and you had replied that you’ve ordered some. I know you say this is not p.g. (though to be frank, the lesions appear to be absolutely classic p.g. complete with the tell-tale purple borders in some pictures), but manuka honey is an excellent treatment for so many different conditions, including various types of necrotic wounds, that I have strong hopes that it will be helpful. I’m holding that vision for you in my mind.

      As I have a lot of experience using it for massive wounds (my p.g. wound spread to destroy the flesh on the entire front and both sides of my right leg below the knee before we finally stopped it with 85mg/day of prednisone and the manuka honey), if I can be of any help at all as you attempt to use the honey for treatment, please feel free to let me know. I think you may be able to connect privately through my WordPress.com account, which is how I’m logged in here. If not, I can share my email address.

      The honey is a bit tricky to use. It goes on thick, but thins with body heat and gets a bit runny. I had a very specific process of layering varying dressings (including unscented panty liners — yes, the kind we ladies use for delicate reasons) as recommended by Dr Peter Molan, the man who pioneered the research into using manuka honey for medical reasons. (What a lovely man, he was so kind and helpful to me when I was struggling to save my leg.) Please feel free to ask if you need help — I’m a strong believer in manuka honey, for (obviously) a very good reason, and would be very blessed to help you figure out how best to apply it.

      Healing light, prayers, and blessings…. Gayle

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      1. Thank you so much for the tips and I am sorry to have missed your initial comments. I am sincerely appreciative of you taking the time to reach out to us and for keeping up in your thoughts and prayers. ♥

        Liked by 1 person

      2. You are very welcome, and there is absolutely no need to apologize. Also, there is no need to reply to or “approve” this response to the comment. I’m just replying in case this might help with the manuka honey. Please store it in your tool-box.

        I found that the best method to keep the honey on the wound was to spread it on large sheets of xeroform, and then place those, honey-side against the wound, on the leg. I would then affix a layer of unscented panty liners to large abdominal pads, which were all fastened together so they covered the entire surface with some overlap, and they went on, panty-liners against the xeroform, as the next layer. Then, kling gauze wrap to hold it all in place. The xeroform kept the dressing from sticking quite as painfully to the wound, and the panty liners held the honey in place, so the wound got the best benefit from it. I would change it daily, using sterile saline to soak the dressings before removing them, because dressing changes were so incredibly painful (all the morphine, fentanyl, and ativan on the planet couldn’t touch that much pain).

        Once I started using the honey, the improvements to the wound happened quickly, and they finally began to close up. I’ve had a few flares since, and the honey has come to the rescue each time. It was the only thing, at least for me, that did the job. The honey does sting quite a bit when you first apply it to a raw and necrotizing wound, but the sting eases after a short time, and it actually then helps with the pain. As the honey does its job of gently debriding and taking away the inflammation, the application becomes more comfortable.

        Again, you are in my prayers. I truly feel for what you are going through, and think that you and your husband and family are incredibly courageous. I was fortunate that a dermatologist came by only a few weeks into my hospitalization and recognized the tell-tale purple edges of the p.g. and slapped me right on massive doses of prednisone. I pray that the right solution for your husband shows up very soon.

        Blessings,
        –Gayle

        Liked by 3 people

  2. I am a female physician and presented this to a network of 50,000 other female physicians on FB, asking for comments or suggestions. One physician asked if arterial insufficiency/vasculitis had been explored. Also, what about Mucormycosis. Many thought it looked like pyoderma gangrenosum, even though the article stated that had been ruled out already. Regarding PG, one physician stated that “grafts and debridement are sure to fail. Systemic immunosuppressives, Clobetasol in and around the wound, no sharps of any kind. Santyl has worked well for many of my patients.”

    Liked by 4 people

    1. He has tried santyl and surgery avoidance. When they were leaning very heavily on PG as a diagnosis of exclusion, he was given cyclosporine, dapson, prednisone, remicaide, etc… The would continued to spread through those treatments. Mucormycosis is not a term I feel readily familiar with so I will have to look into his records for that. I am planning on sitting down before the weekend to write a template of detailed medical treatments, tests, results, etc… which I will blast out via e-mail to the many kind hearted doctors who have taken the time and care to respond to me.

      Liked by 7 people

  3. I know it is too late now but should he have soaked his hand in water immediately this happened. You should tell the name of cleaner so others can take care. Hope a cure is found.

    Liked by 2 people

    1. His hand was immediately rinsed at home and they did it again at the hospital following their contact to poison control. I am not interested in being sued so I would just suggest people take care by being careful with all chemicals. What happened to my husband is incredibly rare, and I don’t mean to suggest what happened to him is common, just that it’s possible because we live it everyday. Thank you.

      Liked by 2 people

      1. He did rinse the hand immediately after the burn and before we went to the hospital. The hospital had him flush for a long while again after contacting poison control. The active ingredients in the cleaner were sodium hydroxide and potassium hydroxide.

        Liked by 1 person

    1. I am not certain; thee are thousands! Within the e-mail I have created folders and am sorting them according to what they are and whether they require a follow up with more detailed history. I’m so sorry! I feel terribly that so many people are feeling overlooked…I just can’t keep up with everything quite yet!

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  4. I can’t do much for you as I’m not a medical professional, but I am a physician recruiter. I did share your blog on my LinkedIn in hopes of getting it in front of as many physicians as I’ve connected with. Best of luck in your search and healing.

    Liked by 1 person

  5. Ok I put this out there to a chemistry group that love this stuff, They want to know who took the photos? Was it a green product line? (something new in it.) Was it bought at something like..$1 store? Made in what country? Sorry, I hope to help get an answer.

    Liked by 1 person

    1. The photos of my husband’s hand? They would have been taken by either myself, my husband, or one of his doctors. We have a massive gallery of photos we took during the experience and the doctors often took photos too. It was not a green product line. Not a dollar store purchase; I usually see it being sold at home improvement stores and such. The main ingredients were sodium hydroxide and pottasium hydroxide. Not sure where it is made, but the company is American.

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  6. Just curious if he is taking any medication for diabetes? Seems very simple and unlikely, but I was just told of a situation where diabetic meds was suspected of making a wound worsen. I’m sure your healthcare providers have already been down the medication interaction road if he takes any. Just a thought. Best of luck. I truly hope you find the answers you all need.

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  7. I found another research paper talking about heparin and necrosis; it states to use warfarin instead, but I wouldn’t use that either. I am aware these are mainly talking about thrombosis. However, I am posting this to point out that in some people, they are susceptible/allergic to these medications. Sort of like Red Man Syndrome can occur in some people who suffer from an acute allergy to a specific medicine they are taking.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2503266/?page=1

    **Have they doctors looked at HIT/HIT-II? This should be looked into.
    http://bja.oxfordjournals.org/content/90/5/676.full

    All my best,

    Liked by 2 people

    1. I don’t believe they have looked at this and I am noticing a trend in the mention of heparin. I will put this near the top of my list of questions for the doctors. It is especially concerning me because he has been discharged to home with a PICC line and we are currently using heparin daily. SASH method for the daptomycin then another syringe of heparin in the second lumen. I would feel terribly if this had something to do it and I’m the person pushing the plunger!

      Liked by 2 people

    1. He has done many, many rounds of hyperbaric chamber treatments. One of his infectious disease specialists here at home runs the program and is a big fan. Unfortunately it hasn’t done much to help.

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  8. MRSA ?…… I got a bad infection, MRSA, after hand surgery. I will keep your Family in my thoughts and prayers. If MRSA was already mentioned, I apologize.

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    1. There were a couple of instances in which he tested positive for MRSA, but that was typically after being an inpatient with a big gaping wound. The wounds get swabbed and he receives (blood) lab work every time he is in and the vast majority of the time he does not test positive for MRSA or any infection for that matter.

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  9. Many prayers and may God himself be your healer. I BELIEVE IN THE POWER OF PRAYER! AND SHARE! My kids believe that and thank God that some people learned how to make houses and taught other people….and some learned how to build cars…and taught others… surely …someone knows how to fix this….and God allowed that…teaching will happen and that is the intent of share…. we will share….and pray. From Wisconsin!

    Liked by 2 people

    1. I too believe in the power of prayer and I cannot describe how appreciative I am for all of the prayers we are receiving. I am hoping and praying that one of the many suggestions and ideas are the one that leads my husband to healing and good health. Thank you.

      Liked by 2 people

  10. I am sorry for all you and your family are going through. I have no medical suggestions for you, but I will pray to the Great Healer who can help. Keep asking, seeking, and knocking on every door….and don’t forget God’s door. I do believe in the power of prayer and I will be praying for you and your family. God bless you all

    Liked by 2 people

  11. I sent you an email a couple of days ago, but haven’t seen a response, so I wasn’t sure you had received it. My son and I (both general/vascular surgeons) both think it looks like it could be calciphylaxis. Although it usually occurs in the presence of renal failure, it can occur without kidney problems. The heparin may actually be part of the problem. I have seen at least 3 cases of heparin-induced injuries such as this in my career. Prayers for your sweet family.

    Liked by 4 people

    1. Thank you so much and I sincerely apologize for the slow response. I have been absolutely inundated with responses and have been trying to get through them as much as time allows. The condition you mention is one I have put on a list to discuss with his doctors as it has been mentioned several times in communication from various doctors. Thank you so much for taking the time to reach out. I am working on putting together a more comprehensive response including timeline, tests and results, medications, procedures, etc… that I will be firing off to doctors requesting more information. Again, thank you so much.

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  12. All I can offer is the most powerful thing, a prayer. May God make ease for you and your family. Sharing, hope you find your answers. Amen

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  13. Hi.
    perhaps you shouldn’t have waited so long before reaching out for help..
    It sounds like the accident with the drain cleaner was just an unlucky coincidence. Maybe you were bitten by some kind of tick and the spillage of the drain cleaner fluid upset the wound or something.
    This may be a shot in the dark, but have you tried using vitamin therapy? It might sound a bit quacky, but regardless of weather you believe in it or not, it might be worth a look.

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    1. I have been working to help my husband from day one. This is simply the first time I desperately reached out on the internet. I have spent the last several years very busy traveling from hospital to hospital over several states. I have spent countless nights reading medical journals and doing online research. This has consumed my life from the start.

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      1. You sound like a most amazing woman and wife. No doubt your husband is better just for having you and your children along for the journey. This is baffling, but I pray you get an answer and healing.

        Liked by 1 person

    2. Probably the last thing that this woman needed to hear was that she should’t have waited so long. It sounds like she is doing everything possible and your thoughtless statement is destructive at best.

      Liked by 2 people

  14. Have you considered pythiosis? It would fit the description and explain why he hasn’t gotten better with any of the treatments he has received. I’m not a doctor and wish you the best. You are in my prayers.

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  15. Your story is tugs at my heart. I am a patient who knows all too well what it’s like to feel at a dead-end for treatment options for an all-consuming, life-altering, completely debilitating condition…and the sense of hopelessness as one after another treatment attempt fails. You are an amazing person to work so hard, research so much, and to continue so relentlessly to seek solutions in the face of so much grief & treatment failure.
    After years & years of severe decline, by God’s kind grace, one treatment option combined with significant dietary changes turned things around for me. No cure, but life is more than manageable again…and there is ever so much joy in the daily blessings of being able to dress myself & walk & drive & eat & participate in life.
    My prayer is that you, your husband & family will experience a similar turnaround- or complete healing! Soon. May God’s great grace & mercy be shown to you all.

    Liked by 1 person

  16. …no further comments since February 20, 2016? I posted the following on my daughter’s facebook timeline after she reposted this: I’ve read every comment and it seems as if the responders who blame the heparin are on to something. That makes it so much more horrifying if all the suffering, including amputation, is a result of being treated with heparin. This link regarding heparin and skin necrosis was referenced: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2503266/?page=1 I called Philip [my husband] after reading what the active ingredients are, since he knows Chemistry. I also wanted to tell him that I want to get rid of any ***** we have (go ahead, ** *******, sue me). He said that he has always worn protective gloves and goggles when he used it. He also said that if one rinses it off with water immediately, there is no burn. There was no mention in the account of rinsing with water before going to the hospital which was five minutes away; the blogger only mentions, in a reply, that they rinsed with water. The warning says to rinse for 20 minutes. This is a horrifying account.

    ***I will just add that I feel terrible for you, your family, and your husband. I hope you can find the right medical solution and move on with your lives. Sending healing thoughts and wishes. ❤

    Like

    1. Thank you. He did rinse immediately after contact and again for some time at the hospital. As a precaution, we have ceased the use of heparin, which we felt comfortable with after being informed that SAS was fine in lieu of SASH. He will refuse any and all heparin in his future medical treatment. I have not been incredibly effective in replying to comments here as I had specifically asked for responses to go to the e-mail address provided, which I have been going through every evening when we are not at the hospital or after I get home at night. We are pursuing many leads right now and it takes a great deal of time. While I sincerely and wholeheartedly appreciate every individual that has taken the time to reach out and offer beautiful prayers, it is difficult to say that I will be able to respond individually to each person. His stump has continued to flare, the area has worsened, and I am spending as much time as I can being respectful to others wanting a response while keeping at the forefront being there for my husband and kids.

      Liked by 4 people

  17. God bless your husband and your family. We will keep him, and all of you, in our prayers. I wish I knew of someone who could help you, sadly I do not. But God will hear all of the prayers you will now be receiving and I pray for a cure.

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    1. I have brought it up to a couple of the doctors my husband has been working with but they showed little interest in entertaining the possibility. It remains on my list and will come up again and again on my end until someone can give me some evidence it’s been ruled out. Some doctors don’t like it when the wife shows up with a stack of e-mails and a hundred questions and suggestions, but I won’t let it deter me. 😉 I won’t stop until my husband is better!

      Liked by 1 person

  18. Put manuka honey on the wound! It will suffocate the infection, it will turn any drainage into the immensely powerful hydrogen peroxide. It may give your husband the leg up for his immune system to start beating it back, it cannot possibly hurt any more than what he is experiencing, it will not make things worse!

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  19. Howdy. I’m a second-year medical student in Mississippi. It would be helpful to include all of the tests that have been done this far, all results, all medications, any other health conditions, etc if you’re looking for more than a guess. I think it’s especially important that you find out what bacterial cultures were done. I doubt the cleaner is the problem. Your husband probably isn’t the first person to ever have this widely used product cause a serious and unheard of reaction. Bacteria, specifically a hospital-acquired infection would make more sense considering that’s where infections like this happen and that’s where he went with an open wound of some kind when this all started. Please find out what cultures were done, because many serious bugs only grow on specialized media or don’t grow in culture at all. After reading the article though there’s no indication that this is fungal, bacterial, medication-induced, vascular, autoimmune, or what. The person who can help you is going to need some labs to determine that very basic and absolutely essential detail. The person that can help you really is going to need a “punch” biopsy to look at under a microscope and see what is actually taking place at the cellular level. My advice is to find out every test performed thus far and add a gallery or summary of the results. I’d also add all the photos you have, epecially the earliest ones. You’d be best off finding a pathologist and microbiologist to speak with.

    Liked by 1 person

    1. Thank you. If you would like to send an e-mail to the address on the bottom of the blog I can reply with the document of more medical details I have been sharing with various healthcare professionals. I appreciate you taking the time to reach out.

      Liked by 1 person

    2. The process started as aseptic necrosis, do you think it had transformed into bacterial infection? What about the chemical triggering immunocomplexes formation? Could they cause this recurrent necrosis? The more I think about the case the more I am convinced there is an immune system breakdown. Oncology drugs work in this direction.

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  20. Dear family,

    I never open the SERMO messages because I am quite sceptic about sites like it. I am oncologist and have always tried to find an option for many patients. I would like to say that I believe in God but life has been quite hard to me in many fields (professional and personal). However I had a theory and would like to share it with you. I will write it in the blog of SERMO, but I guess many colleges will not understand it and I will not get a click or so. Please, read it and try to find someone able to see Medicine in a global way.

    I am sure the best professional have used all their talent to help you but it is something different and it was not in the common checklists and protocols that they use; they should have done three different specialities or be very intelligent and creative.

    If someone hears my hypothese, I would like you to make possible the contact with me. If someone put its into practice and it works, I need you to say who I am and go to the clinics where nobody could help you to tell about my hypothese. God gave me great skills and nobody let me grow..

    I will write it now in SERMO.

    My best wishes.

    Liked by 1 person

    1. Thank you so much. I have been in contact with a woman from SERMO who has invited my husband’s PCP to join the site and take part in the conversation. I am wholeheartedly hoping he takes them up on the offer.

      Like

  21. Sometimes pyoderma gangrenosum is tough to treat.

    I don’t mean to sound accusatory but sometimes when no answer can be found the problem may be factitial. It sounds crazy and people who are otherwise normal engage in it for reasons not always understandable. Just something to consider if things remain unclear.

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    1. Naturally along this long road the issue of possible fictitious disorder has come up a number of times. I understand that it is a necessity for doctors to look into it as there are people who self-harm. There have been doctors who became frustrated and hung their hats on that idea along the way despite the fact that every psychiatric evaluation he has undergone (there have been many given how many places we have been during this ordeal) has ended with the conclusion that it would be unlikely for my husband to have a fictitious disorder. They have ALL concluded that either A. He is normal and well adjusted mentally. or B. He struggled from time to time with adjustment disorder (AKA situational depression) which I believe IS an indication of good mental health in his case. A person would have to be psychotic or completely oblivious to reality if he or she were to endure the pain and suffering for this length of time with no answers. I can assure you, as the person who knows him best, this is NOT the case. There isn’t a shred of possibility. I am an intelligent and observant person. I can tell by the look on a doctor’s face or the tone in their voice the moment I know they are entertaining the idea, and believe me, I would have observed SOMETHING in my husband over the years if he were the cause of this issue. I have found zero indication and absolutely no reason to entertain the idea for more than a moment. I have lived with him through the perpetual cycle of hope, and I have watched his optimism and dreams of this surgery or that medication being the key to the end, and I have mourned with him when it didn’t turn out the way we had hoped. I have seen the wound flare with my own eyes, sitting next to him while it spread all on it’s own across his hand and now his arm. He has been in the hospital, with the good old purple marker tracing the edges of the wound while I watched alongside healthcare professionals as it aggressively spread beyond the drawn borders. I would never in a million years stand by a person capable of creating such a nightmare, and I certainly would not bring my innocent children along for the ride. I do not mean to sound abrasive toward you, it is just a sore subject for me because I have had to watch his quality of care decline in the presence of doctors that have decided it was more realistic for it to be something my husband is doing rather than to accept it is something beyond their own scope of comprehension or ability. I have also seen some amazing doctors stand by my husband and defend him in the face of those that would not. So there is my long-winded way of saying, I get where you are coming from but the answer is absolutely not.

      Liked by 3 people

      1. I applaud your approach to every response I have read! You have become a heroic Christian wife, mother, and caretaker in my eyes. The Lord has certainly given you a gift in this situation– tenacity, intelligence, determination, and the greatest of these- the truest measure of love for others I believe I have ever seen! Your family and those touched by you are truly blessed!! I AM praying for you! I did post about potential for a holistic approach and would love to be able to assist here. However, I am not offended if this wouldn’t be your priority method. I would like to point out that if it is a chemical toxin that began this whole problem and every medicine I have seen noted here is a chemical as well then I can’t seem to make sense of treating a chemical toxin with more chemical toxins? You have my email address if you decide to try

        Liked by 1 person

  22. My fiancé had a line and because his platelets were so low, they kept saline running through it 24/7. This might work for your husband. I made a little pouch for the bag or put it in a fanny pack.
    He also had Mucormycosis and had to have the septum in his nose removed with a substantial margin. Is there a possibility of amputating 6 inches higher?

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    1. While the possibility of amputating higher is of course there, it is not a road we are looking to explore anytime soon. Because there is no indication as to why this is happening, it seems as though it would only bring the issue closer to his body, which is something we most certainly don’t want. As it is, the area has continued to spread and is now a few inches up the forearm already. We would like to keep as much of his arm intact as possible to keep more space between “it” and his torso while we try to find the answer that works. I think we would need at least three doctors to give us a high degree of certainty it would end with more of the arm being removed, and I don’t see that happening anytime soon.

      Liked by 1 person

  23. Hi, my wife just told me about this story and I’m really very saddened to hear about what you and your family have had to go through. I’m a molecular biologist by training and currently work as a director of product development at a DNA sequencing company – have you thought about having the infection sequenced? It certainly looks and sounds like an unusual microbial infection – my best guess for how this all happened is the exposure to the caustic chemicals of the drain cleaner will have caused some abrasion on the skin and while cleaning the dirty sink, just happened to have been exposed to a rare infectious bacteria or fungi that would not normally be contagious except that it was basically directly exposed to an open wound. Being that the infection doesn’t appear to spread beyond the hand/arm would be indicative of an infectious microbe that lives in the flesh itself; not blood, and would be consistent with infection occurring by a minor abrasion caused by the drain cleaner.

    Anyway, that’s all just a guess, but I would assume that by now the doctors will have tried and failed to culture the infection. Most microbes in the world cannot be grown in a lab so this failure is not unexpected. Getting a whole genome sequence without a culture would be extremely difficult but you could pretty easily search for 16S or 18S RNA sequence which will confirm that it is either a bacterial (16S) or fungal/other eukaryotic (18S) infection along with at least the genus if not the exact species of the microbe. This may not answer everything but it’ll get you a lot closer and with the bug ID’d you may get lucky with it matching something that’s known and has a cure.

    There are methods in place in hospitals for detecting microbes in septic patients but I believe they also use cultures and qPCR assays, which is not DNA sequencing. I’m sure if you presented your case to any microbial academic labs they’d be quite interested in trying to sequence it. Doing 16S/18S sequencing is relatively quite simple and cheap and is often done in undergraduate labs.

    Good luck!

    Liked by 4 people

    1. I will be adding this to my list of definite follow-ups. I like that you gave me specifics for the sequencing too because when I look at the options online it is pretty overwhelming and I wouldn’t know where to begin. Is this something I would need to get one of his doctors to work on with us or do you think I could successfully approach one of the undergraduate labs directly?

      Liked by 1 person

      1. When I had mine done it had to be done through the doctor. I had blood samples taken at UTSW in Dallas and from there they did some test and sent others out to emory, Mayo Clinic and somewhere in California….ask your doctor and if they won’t find one that will I had to see a hematologist…prayers also wanted to add when I had my mrs a I got Mississippi mud from my chiropractor…I was hesitant but my mom used it for her torn acl…you can put a teaspoon of it in water and drink it…something in the earth there that they don’t have anywhere else. I couldn’t obviously put it on the wound but did seem to help drinking it. Again I have an immune deficiency and when I had mrsa it took 2 years to go away completely I had 3 different wound sites and slow to heal every doc thought I had diabetes or thyroid because I was so slow to heal and I dont. I had 4 different antibiotics and solutions to pack the wound. One little pimple made a 4 inch deep hole the size of a writing pen in my armpit that took 4 months to close. They pain I had it can’t imagine what he went through. We deep cleaned our home and got all new soap every month to minimize infection…changed clothes as soon as any of us came home and put them straight into the washer and didn’t wear shoes in the house….silly things but to help with germs. I pray you get answers but definitely do the genome testing!!!!

        Liked by 1 person

  24. I have shared your story and I am praying for you! I admire your efforts to reach out for answers, don’t be discouraged by providers who seem intolerant of your lists of questions. I can not tell you how many times I hear providers accuse and even criminalize patients for not taking responsibility for their own care. What you are doing is amazing, please don’t loose heart. I can only hope to work with patients and families like yours all the time! I teach my students to never stop asking questions and to be open to every possibility. I believe God will put the right caregivers in your life who are not intimidated by a lack of knowledge and will gladly join the journey to learn with you and help you find answers. God Bless and God Speed!

    Liked by 3 people

  25. Sending nothing other than prayers for healing for your husband. May God bless your family with an answer that’ll end this crazy ride you’ve been on.

    Like

  26. I am not a doctor nor a clinician, just a junior Genomics researcher willing to give a suggestion. How about getting his DNA sequenced and see if there is any mutation in his coding region that pre-disposes him to this condition. This approach will take a lot of guess work out of the question on what condition he has. Also, potentially get a sample from the necrosis area and get it sequenced to get the true identity of the pathogen that’s causing this. There is lab at Emory “Emory Genetics Lab”, that might be a potential avenue and be willing to help or the company Illumina who might be willing to perform the sequencing.
    I am sad to see you suffer, but in this day and age I am positive you will find a smart person willing to help you and your family. I wish you all the luck.

    Liked by 3 people

    1. Colleen Frazier Cunningham I have seen a wound like this only once in my long nursing career, it was HIT Heparin Induced thrombocytopenia……http://www.ejvesreports.com/…/S1533-3167(12…/abstract…….. Delayed-onset HIT is a rare condition which is difficult to diagnose and can cause dramatic outcomes. In this case report, a claudicant patient developed delayed-onset HIT after heparin exposition during bypass surgery, and developed severe ischemia in the limbs resulting in bilateral amputation and coronary disease. This syndrome should be part of the differential diagnosis of diffuse arteriopathy in all patients that have been exposed to heparin in previous weeks. Anti-coagulation therapy should begin with fondaparinux or danaparoid. Despite recognition, adequate therapies are very limited with a high risk of death, of about 20 percent.2

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    2. This is exactly what I was thinking…I have an immune deficiency and I have been hospitalized 6 times in the last year and a half and they have done poor testing on me so far everything has come back normal except this one gene and they said it makes me predisposed for infections almost like a chemo or transplant patient. I would recommend the testing!!!

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  27. I may not know you but I feel as if I can say, with a certain amount of confidence, that you are an angel. A rock. A pillar of hope, strength and undying love. Given to your husband for those reasons. May God guide you, bless you, bless your whole family and also give comfort for your weary soul. I can’t fathom your heartache and yet you live it, with what sounds like a great amount of grace, everyday. Prayers already sent. With that…I shall add my two cents, you never know. The only common denominator I see, from what I have read, is you and your children. Could one or more of you be a carrier (ie..have the pathogenic agent but are non-symptomic) of something that is re-infecting him? Shot in the dark, like most of the others, but I figured it was worth a try. God bless and I pray a solution is found!

    Liked by 1 person

  28. No medical experience to share, simply a kudos to you for fighting so hard for your husband, along with prayers for an answer & complete recovery.

    Liked by 1 person

  29. I don’t have any medical advice for you just some personal advice. I can’t imagine how difficult all of this has been and now to field a million questions most of which are helpful some of which are ignorant and accusatory all probably well meaning but hard nonetheless. You patience and grace in astounding. You talk of your faith openly but you truly display it in the way you graciously answer the questions that are repeated over and over and the ones that seem accusatory. If all believers walked their walk like you do here perception would be drastically different. So no medical advice not smart enough for that but as a social worker it seemed like maybe you could use someone saying to you- great job. Your care for your husband and relentless search is incredible. Your grace and kindness towards others regardless of their words is inspiring. Hang in there mama your kids are so fortunate to have a mom like you and your husband is equally blessed to have a wife like you. We will be offering up endless prayers for you. As a side note I know this will probably be laughed at but it seems like you believe in prayer and I’m sure you have done that but have you taken your husband to a group of people and elders in your church that you trust and had them all lay hands on him? It doesn’t need to be in a church or fancy just a thought. I was born with two holes in my heart and ASD and a VSD and was dying and scheduled for surgery all medically documented while receiving the best medical care. My parents took me to their bible study group that we have all grown up with they laid hands prayed and my hole were gone. 12 years later I still had delays from my early medical issues and could not stop wetting the bed at night small in comparison to yours I know but a big deal to a junior higher, they laid hands and it never happened again. I and my parents had prayed endlessly on my own but apparently there was power in that group of believers. I still go to hospitals I belive in medicine but I also belive in prayer and have seen it work first hand. Just a thought. Hang in there girl you are so incredibly strong and an inspiration to me. Sometimes you have to be a mama bear and show your claws and roar. You are doing great don’t belive otherwise for a second. Try your best to brush off the comments that say otherwise.

    Liked by 1 person

    1. Thank you so very much for all of your kind words. I appreciate it more than you know. While I do believe strongly in the power of prayer, I have to admit I don’t think my husband would be into the idea of anyone laying hands on him. He does lean on God and one of his best friends in the hospital is a phenomenal chaplain we are lucky to see while there. We also have a huge community of people from our church praying for him but I don’t know that he would take it outside of there or a step further. If I could make him do stuff we might be open to a few more “different” things in addition to what we are doing but alas, men just don’t want to listen to their wives’ directions all the time! 😉 Thank you again for your kindness. ♥

      Liked by 1 person

  30. I emailed you I think over a month ago asking about chemotherapy and biotherapy. Has he seen an oncologist? I am an RN on an oncology floor, which is of course why my brain goes that direction. I’d like to print your blog and pass it along to some of the doctors I work with if I can. Would you be willing to send me the article with the more specific medical info that I could include?

    Liked by 1 person

  31. Hi! I’m wondering if there have been any updates or healing since you originally posted their early this year? I think about you and your family often.

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