Necrotizing Fasciitis

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Dear World,

On the morning of December 24th I felt an unusual pain in my left hand between the thumb and forefinger. The pain increased and in the afternoon I got a high fever, at some point above 40 degrees Celsius or 104 degree Fahrenheit. I went to the emergency department and was hospitalized during the night between the 24th and 25th of December. On the afternoon of December 26th I underwent surgery to find out what was happening, and was then diagnosed with Necrotizing Fasciitis (the wikipedia article on NF gives a fair summary), caused by the common streptococcus bacteria (again see wikipedia article on Streptococcus). A popular name for the disease is flesh-eating bacteria. Necrotizing Fasciitis is a rare and aggresive infection, often deadly if left untreated, that can move through the body at speeds of a couple of centimeters per hour.

I have gone through 6 surgeries, leaving wounds all over my left hand and arm. I have felt afraid of what the disease will do to me, anxiety over what will happen in the future, confusion and uncertainty about how a disease like this can exist and that I get the right treatment since so little appears to be known about it. The feeling of loneliness and that nobody is helping, or even can help, has also been present. I have experienced pain. Even though pain is something I’m less afraid of (I have a back problem) compared to other feelings, I needed help from several pain killers. I’ve received normal Paracetamol, stronger NSAID’s (e.g., Ketorolac/Toradol), several Opioid pain-killers including Alfentanil/Rapifen, Tramadol/Tradolan, OxyContin/OxyNorm, and Morphine. After the first and second surgery, nothing helped and I was still screaming with pain and kicking the bed. After the first surgery, I received a local anesthetic (a plexus block). After the second surgery, the doctors did not want to masquerade my pain, because sign of pain indicate further growth of the infection, and I was given the pain-dissociative drug Ketamine/Ketalar and the stress-releasing Clonidine/Catapresan. Once the third surgery removed all of the infection, pain went down, and I experienced many positive feelings. I am very grateful to be alive. I felt a strong sense of inner power when I started to fight back against the decease. I find joy in even the simplest of things, like being able to drink water or seeing trees outside the window. I cried out of happiness when I saw our children’s room full of toys. I have learned many things about the human body, and I am curious by nature so I look forward to learn more. I hope to be able to draw strength from this incident, to help me prioritize better in my life.

My loving wife Åsa has gone through a nightmare as a consequence of my diagnosis. At day she had to cope with daily life taking care of our wonderful 1-year old daughter Ingrid and 3-year old boy Alfred. All three of them had various degrees of strep throat with fever, caused by the same bacteria — and anyone with young kids know how intense that alone can be. She gave me strength over the phone. She kept friends and relatives up to date about what happened, with the phone ringing all the time. She worked to get information out from the hospital about my status, sometimes being rudely treated and just being hanged up on. After a call with the doctor after the third surgery, when the infection had spread from the hand to the upper arm (5cm away from my torso), she started to plan for a life without me.

My last operation were on Thursday January 2nd and I left hospital the same day. I’m writing this on the Saturday of January 4rd, although some details and external links have been added after that. I have regained access to my arm and hand and doing rehab to regain muscle control, while my body is healing. I’m doing relaxation exercises to control pain and relax muscles, and took the last strong drug yesterday. Currently I take antibiotics (more precisely Clindamycin/Dalacin) and the common Paracetamol-based pain-killer Alvedon together with on-demand use of an also common NSAID containing Ibuprofen (Ipren). My wife and I were even out at a restaurant tonight.

Fortunately I was healthy when this started, and with bi-weekly training sessions for the last 2 years I was physically at my strongest peak in my 38 year old life (weighting 78kg or 170lb, height 182cm or 6 feet). I started working out to improve back issues, increase strength, and prepare for getting older. Exercise has never been my thing although I think it is fun to run medium distances (up to 10km).

I want thank everyone who helped me and our family through this, both professionally and personally, but I don’t know where to start. You know who you are. You are the reason I’m alive.

Naturally, I want to focus on getting well and spend time with my family now. I don’t yet know to what extent I will recover, but the prognosis is good. Don’t expect anything from me in the communities and organization that I’m active in (e.g., GNU, Debian, IETF, Yubico). I will come back as energy, time and priorities permits.

29 Replies to “Necrotizing Fasciitis”

  1. Whoa, that was an exceedingly horrible way to spend christmas.

    I wish you all the best in your recovery!

    (Do let us “virtual” people know if there is any of the boring computer-stuff we can help out with.)

    • Thank you Paul. It will take time, but the prognosis is looking good.

      /Simon

  3. Congratulations on surviving! Take all the time you need to get well soon. Health and family come before everything else.

    • Thank you Jimmy. Indeed, events like this is what get you focused and help sort out your priorities.

      /Simon

  4. So glad you’re in safer waters. Thoughts and prayers with you and yours for a speedy recovery.

    • Thanks Paolo. Yes, I’m trying to focus on recovery and family now, and it is looking promising.

      Take care,
      /Simon

    • I’m happy to hear that science is helping out here, there seems to be much we don’t know about the decease — and minimizing extensive surgery will surely help many to a better life.

      /Simon

  8. Wow, that is hard. Such fast diseases take you completely unprepared and remind you how fragile the human body can be. Thank you for the news, I hope you get better after such an ordeal.

    • Thank you Elessar. Yes it is an humbling experience.

      Take care,
      /Simon

    • I’m glad to have put things in perspective. 🙂

      Thanks,
      /Simon

  11. Simon,
    I don’t know you but, I just have to add at least a brief note thanking you for being strong enough to endure your experience with necrotizing fasciitis and, too, for being SOCIALLY strong enough to share it in this blog post.

    Like most, I’ve been awestruck by the very concept of strength since I was a little boy (and that was EONS ago! 🙂 ) and so, oddly enough, it’s kinda spiritually beautiful to see that at the same time your body contained the necrotizing fasciitis it also contained a spirit sufficient to keep you alive for your family and for those of us who appreciate and even FEEL some of what your soul’s experienced…

    Thanks, and Keep STRONG, Simon!
    +Vincent Wright

    • Hi Vincent,

      I draw strength from similar stories — mostly from http://nnff.org/ — when I was at the hospital, so I hope I can return some by writing down my experience.

      Take care,
      /Simon

      • Simon,
        I’ll definitely bookmark http://nnff.org/ for my friends and colleagues.

        Thanks for sharing – and I hope you continue to draw good strength from NNFF far into the future…

        #KeepSTRONG, Simon!
        +Vincent

  12. Hi,

    thanks for sharing your experience. I’m glad you’re ok.

    P.S.: I think by “6 inches” you meant 6 feet. 🙂

    • Hi Gabriel. Thanks for letting me know, it is now fixed. The English language isn’t my native tongue, and the imperial units doesn’t come naturally to me, so I’m sure there is a bunch of similar mistakes (help appreciated).

      Take care,
      /Simon

  13. I thought my Christmas was bad as I broke my lower jaw but yours was worst.

    Good luck and take care. Reading your post it look like you’re seeing the light at the end of the tunnerl.

    • Thanks Stefano. Recovery is going well. Take care of your jaw!

      /Simon

  14. Glad you are doing well, my 10 month old son got the same thing last month, started in his right hand, he had 5 surgeries, it got all the way up into his upper arm. His was also strep. Had all his fascia removed, has his muscle, and almost all of his skin.
    He has been home 2 wks, we plan to start physical therapy next wk. Any advice?

    • Sorry to hear about this! I was doing physical therapy for a couple of months, but today I don’t do anything beyond normal training at the gym. I couldn’t extend or collapse my fingers properly in first ~3 months, and my training was to exercise the muscles a lot. After a month I started to (after advice from the rehab people) gently tie together the finger in its collapsed form for 30 minutes using a bandage, once a day or so.

      I think young people have a much quicker rehab phase than adults, so I’m hoping your son is doing well!