M.R.S.A. – a lonely journey

In writing this story about my own personal experience of MRSA infection, I am not looking for sympathy – simply understanding of where I’m coming from and of what has helped to form my views. I welcome comments.

Part 1: Medical History

MRSA – Multiple Reasons to Shout Aloud. They say you never forget ‘the day’ you were told you had cancer. Well, I’ll never forget the day I was told I had MRSA. The news came like a bolt out of the blue. It has had a major impact on my life and continues to this day to be an unknown entity.

I have a long history of chronic sinus infection with multiple admissions to hospital for surgery and intravenous antibiotic treatment over a period of 20 years. I also have an inherited genetic condition, Ehlers Danlos Syndrome (EDS), which is basically a connective tissue disorder that affects different people in different ways. In my case, it’s manifested itself in the connective tissue of my joints leaving me with a tendency to dislocate joints/to tear ligaments easily and in some instances, this has required surgical repair. It also caused me a lot of problems during pregnancy, both with pregnancy loss and as a result of two full-term deliveries (lucky old me!) with numerous admissions to hospital for gynaecological surgery. I’ve had at least 40 admissions to hospital so far with all the various medical problems over the years. Another side effect of EDS is a tendency to form abnormal scar tissue following injury/surgery. It took many years of failed surgery before my diagnosis of EDS was made but by then, it was too late. The damage had already been done. With my history of acute frontal sinus infection requiring repeat surgery to manage it, scar tissue now blocked the natural drainage channels and severe infection (abscess in the bone of the skull) had become a reality. My life was in real danger at times because of the possibility of rupture of the thin wall of bone between the abscess and my brain, and with an associated risk of developing septic meningitis.

Read Part 2 tomorrow.

25 Responses to M.R.S.A. – a lonely journey

  1. Anon says:

    Great post. Scary to look back. Looking forward to part 2.

  2. [...] Lonely Journey – Part 2 MRSA: My Room Shared with Aliens! This is a follow-on from Part 1 of my story [...]

  3. [...] occur. I am no expert when it comes to talking about MRSA but I have learnt enough through my own experience of MRSA infection, to be able to share some facts with [...]

  4. [...] blog before now will know that in recent years I’ve had a serious battle on my hands with an MRSA infection. My life may not exactly have gone according to plan but it ain’t bad when all things are [...]

  5. [...] some major surgery. The operation was the culmination of two long, hard years fighting a serious MRSA infection in my skull. As many of you will already know, I’m no stranger to surgery but the blog world [...]

  6. [...] Three days later, it was discovered that my surgical wound was infected with MRSA and thus began a lonely journey which continues to this day. The following week while I was longingly gazing out of the window of [...]

  7. Carol Pacelli says:

    My sister had sinus history much like yours minus the EDS. After repeat surgery’s pic lines for IV antibiotics, nasal lavage with antibiotic solutions, she never became totally infection free. This went on for over 5 years.
    During this time she was also being seen by an infectious disease Doc too but it wasn’t until he retired and the new Doc thought to check out her immune system. Because of so many years of chronic infection, her body’s ability to fight off infection was decimated. Specifically, she was extremely low on something called, Igg-M (if memory serves) I believe it is a type of immunoglobulin substance that lives in your blood plasma that is one of the many factors that help to fight infection.
    She began to have infusions of this factor and as soon as her levels reached normal , she began to respond to antibiotic therapy.
    I sincerely hope this helps.
    I myself found out I have acute sinusitis from MRSA and so far nasal irrigations with mupirocin have not made a lasting difference. I’m very scared.
    I pray you receive comfort and a cure.
    Remember, if you don’t feel a doctor is helping, search for another until you find the best one in the country or planet if necessary. Just because someone is a doctor doesn’t mean he or she is as well versed or as experienced as a specialist.
    Boy could I tell you stories about how I was given the wrong treatment for neurologic bladder syndrome. But that is another story.

    Hope this helps.

    PS: If you haven’t seen an infectious disease Doc than do so asap and if necessary go on to see an immunologist (a specialist in treating the compromised immune system.

    Hugs,
    Carol

  8. Steph says:

    Carol – Hi! and welcome to this blog!

    Your comment is hugely interesting to me and couldn’t have been better timed. I had a conversation with my doctor last week which left me despairing about where to turn next for help. You may be interested to read this post below and it’s comments.

    http://biopsy.wordpress.com/2008/05/04/battle-of-the-bugs/#comment-1508

    You’ve just given me the confidence needed to pursue finding out more about my immunity status. I don’t need any doctor to tell me I’ve got a problem as I KNOW I have – I just need qualified help in finding out the best way to deal with it. I don’t think we have infection control specialists here. We have microbiologists who work in the hospitals only (as far as I know) treating in-patients. We do have immunologists though and thanks to your advice, this is exactly the route I now intend to follow.

    Thanks! Carol You’ve been a great help.

  9. Laura says:

    I received my biopsy report this morning, despite negative nasal test for MRSA a biopsy was done during sinus surgery. I am a nurse and feel like I have lost my life. there are so many questions and so few answers. Will I be able to return to work? How will my coworks act when they find out the results. can I infect my grandchild? and the list goes on. Thank you for sharing your story and allowing my venting.

  10. Steph says:

    Laura – hello and welcome!

    I’m always pleased when I hear that my story has helped someone else :-)

    I presume the report from your sinus surgery came back positive for MRSA? I would imagine that they took a swab of some pus found during surgery and this is what was cultured. One of the problems in treating sinus infections, is that it’s difficult to get a high enough concentration of antibiotics to reach pockets of infection within the skull. This is why an area like an abscess can remain MRSA+ despite intensive antibiotic treatment. I hope that your surgery will have helped your situation and that you will be able to return to work once you’ve completed your antibiotic treatment and a decontamination programme. I would suggest that you seek reassurance from your doctor as regards your infection status. Remember, you are not the first hospital worker to pick-up MRSA and you certainly won’t be the last!

    Here’s a link to a US website on MRSA with plenty more information and discussion.
    http://www.mrsanotes.com/understanding-more-about-recurring-sinus-infections/

    I wish you well.

  11. Laura says:

    I am not on any meds at present. The surgeon is waiting for follow up with Boston MA lab. She thinks it doesnot need to be treated, this scares me. I have to wait nd see. Thanks again, Laura

  12. Laura says:

    Steph did you find yourself suddenly depressed at times? I am having trouble with this. and also find my concentration is not what it was. I did start on Vancomycin inhailents. It is rather time consuming but if it works it will be worth it. I am back to work but still feel like I am at a distance from my friends. Thanks, Laura

  13. Steph says:

    Hi Laura

    MRSA infection is a scary experience. It’s also a lonely one as your infectious status can leave you feeling like a leper in society. I think how you cope with this depends on your own attitude and the attitude of those around you. A huge amount of ignorance exists re MRSA, so don’t be afraid to hold your head up high and get on with your life.

    For some, having an MRSA infection is like having a dirty little secret and it really shouldn’t be like that. Don’t make a secret of it, learn as much as you can about it and tell those you can trust. You will be educating them and one day they may be very thankful you did. Take care.

  14. [...] I share Food Monday with another of my blogging friends. Steph is always cheerful despite her complicated medical story, all documented at The Biopsy Report. I love to share meals with friends and when I am here at home [...]

  15. Laura says:

    Steph, I am so frustrated. Over the past 5 months I have been on 12 weeks of antibiotics and still have problems. The last cultures have been for strep and an unidentified bacteria, what ever that means. I’m not sure how it works over there, but here the insurance companies rule. I don’t “need” to see a Infe. Disease MD. I just want to be healthy. I have no energy, I’m always tired. Any suggestions? Thanks for being here for me and the others out there, Laura in USA

  16. Steph says:

    Hi! again Laura

    Sorry to hear of your continuing troubles. The problem with antibiotics is that while they do their work targeting unwanted bacteria, they also wipe out your natural defence and allow new bacteria to set up home. It’s a vicious circle.

    I usually feel my best when I’m on an antibiotic (once it’s kicked in) but when it comes to an end, I can almost guarantee that an infection in my head will start smoldering again within weeks. I hate saying that but it’s true unfortunately.

    In my case these days, the culture always reports a heavy growth of Staph A. It seems that I can’t shift it out of my system since treatment for the resistant form of this bacteria (MRSA).

    It’s been my experience that a low dose of antibiotic (sensitive to the culture) over a long period of time is more effective than high dose, short courses of antibiotic. By more effective, I mean that the result lasts longer :neutral:

    I know we’ve a lot to be thankful for with having antibiotics available but you also have to wonder at the new array of problems which they’ve caused and with which medicine is barely keeping pace.

    Frankly, I think the best way forward is for long-term patients to become better informed so that they can work in tandem with the medics to find the right answers. If nothing else, it gives you back some control over your own life. Best of luck!

  17. Laura says:

    Hi Steph, thanks for the encouragement. One of the things I don’t understand is how I can be MRSA negative, and told I am cured, then months later I am positive by symptoms and remain MRSA neg. by culture. My job requires 2 neg cultures to return to work, but that is only if they know you have MRSA. I chose not to tell them. I need my job. Well enough whinning. Have a good day, Laura

  18. Steph says:

    Laura

    I well remember going through a phase where I doubted my docs reassurance. It’s hardly surprising when you’ve suffered repeated set-backs despite being told that all is well. I found the best way to deal with this was to air all concerns so that nothing was left unsaid. Many of my worries were unfounded but some were very valid to the treatment process. Having confidence in your medical care, is half the battle! I wish you well.

  19. Joy USA says:

    I too have EDS same problems as you and have been fighting MRSA since Aug of 08. My daughter has EDS and is type 4. I am supposed to have UPPP surgery and also Septoplasty of my nose. After reading this blog I think I will stay on my CAPAP and forget the surgery. The MRSA has consumed so much of my life in the last 8 months, I am still on oral antibiotics going on 4 weeks this time after just getting off 2 weeks IV. I have not gone more than a month in the last 8 months without some type of antibiotics. Will this ever end? I have a cyst in my left armpit left from this last infection that just isn’t going away and now we may have to have it cut out. What if they cut the cyst open, will that spill the MRSA into my blood system? No one seems to have the answers to my questions. I pray for all of that are fighting this thing ,,I have no idea where my MRSA came from but my doctor says that you can get MRSA anywhere.

  20. [...] and pressure returned in my head and my right eye began to close over with swelling. Because of my previous history, I was seen urgently by the surgeon who oversees my care. A swab ruled out MRSA but my new [...]

  21. Janet says:

    Make sure if you do a swab or a sinus culture You are off any antibiotic at least 5 days or the culture will
    not be accurate… no nasal sprays or saline rinse
    either all can give a false reading from the labs!
    Good luck…

  22. Steph says:

    Janet – Cheers!

    You speak with the voice of experience! Thanks for visiting.

  23. [...] The second photograph was taken 3 weeks later while I was still recuperating from the surgery. I was actually on a sailing holiday at the time when I developed severe headaches and my eyes and forehead started to swell. I knew something serious was going on but I didn’t know what so we made haste back to the hospital. This photograph marks the beginning of my journey with MRSA. [...]

  24. Tom Hoff says:

    I had MRSA 5 years ago. 2 months ago my nose and eyes swelled up. I took 4 doses of steroids which cut the swelling each dose but came back when I stopped. An area where I had a back operation 5 years ago started hurting badly at the same time. This may be a recurrence of the MRSA which I think stays hidden in your system somewhere. I had 13 week infusion of a strong antibiotic which seemed to “cure” my condition. I am saying a prayer that it’s something else but then again something else could be worse.

    • Steph says:

      Hi Tom

      I can sense the dread in your comment and I don’t blame you.

      Having had many recurrences of MRSA, I too now believe that once you’ve had one bout, it leaves you susceptible to another. I wish the medics would come clean on this issue and tell us one way or another. Anyone volunteering?

      Anyway, Tom, good luck and I hope you get the right treatment asap. Thanks for leaving a comment.

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