A Lonely Journey – Part 3

MRSA: Major Resistance to Staying Alone! My story continues…

Part 3: The Diagnosis

Shortly after I was moved to a single room, a young woman entered the room and introduced herself as being from ‘infection control’. She had come to break the news that the nasal swab taken in A&E had tested positive for MRSA. To put it mildly, I was gobsmacked!

My mind went into overdrive as I tried to rationalise this news. “She must have made a mistake.” “This can’t be happening.” “Surely MRSA is something that happens to other people.”

It had never even crossed my mind that I might have an MRSA infection and certainly, nobody had mentioned it since my admission. I knew enough about MRSA however to know instinctively on hearing this news that the implications for me, following the recent surgery close to my brain, could be very serious indeed.

My ‘informer’ continued to trot out general infection control information while all I desperately wanted to hear was information relative to my own condition. She could not give me this. All she could tell me was that I was now considered an infection risk to other people and therefore must be isolated and ‘barrier nursed’ from that moment on. I was in effect, to become a prisoner in this new room. She departed leaving behind a general information leaflet on MRSA. No reassurance was given, nothing.

I was left alone in this room with endless opportunity for my mind to run amok. I remember lying there thinking “Help! what does all this mean?” “Is it really serious?” “How do I tell my family and my friends?” “Will they be able to visit me?” In the hours that followed I felt very alone, and somewhat ashamed. The word leper springs to mind.

Someone appeared in my doorway wearing a face mask, a surgical apron and gloves and proceeded to place a large bin in the room bearing an illuminous sticker proclaiming “Danger – infection control.” No words were exchanged. The door to my room was also labelled with an equally alarming sticker “Do not Enter – Barrier Nursing – contact Nurses Station.”

By this stage, my emotions were all over the place. No reassuring visit came from any nurse/doctor – I was left for several hours totally on my own, to my own imagination as to what might follow. This should never have happened and in hindsight, I can see that maybe if I’d made more of a fuss, someone would have come to my rescue. I think I was too terrified at the time to make my views known. After a long wait, someone finally did arrive from the surgical team that I’d come to know at the hospital and I have to admit that from then on, my care was good.

It’s been a long hard road since. MRSA infection did result in having very serious consequences for me (see below). These days I’m better informed about MRSA but I will never, ever forget the loneliness of those first few hours of my MRSA journey. I have not contacted any of the various support groups as I feel that I’ve developed my own coping strategies over the years. It is a real luxury to have this outlet in which to air my views. I welcome comments.

MRSA – R.I.P.

16 Responses to A Lonely Journey – Part 3

  1. [...] I was in hospital being barrier nursed in isolation because of an MRSA infection, I nearly went out of my mind with boredom. I had a wonderful friend [...]

  2. [...] It was like as if the patient was superfluous to the job in hand. When I was originally diagnosed with MRSA, I was barrier nursed but now this was different type of isolation. I could see endless activity at [...]

  3. [...] I was first diagnosed with MRSA I was treated with the utmost urgency and received excellent care. I was barrier nursed in isolation [...]

  4. Melissia Regis says:

    Hello and Happy Holidays! I cannot believe that I found your posts. I thought I was the only person in the world with chronic sinus caused by MRSA who also happens to be blessed to have Ehler-Danlos. I have been more fortunate than you, only have about 10 major surgeries, but having many outpatient procedures and lots of outpatient iv therapies. I am a nurse, so have managed to stay out of the hospital due to the support of my doctor. I would love to hear from you and share experiences. I t seems that we have the same type of EDS, although in the past year have lost my mom and uncle to ruptured blood vessels, aortic and brain. Am currently going through testing to determine type as all 4 children have EDS as well. God bless and take care,
    Melissia Regis
    kregis@comcast.net

  5. Steph says:

    Melissia – Hello and welcome! I’m thrilled you’ve found me. I’d be fascinated to talk with you more ‘cos as you say, I think we may have rather a lot of common! I’ll email you in more detail just as soon as I can find the time but please don’t hesitate to contact me again if you wish. You can find my email address if you click ‘About’ at the top left of my blog page. This is an exciting development indeed :-)

    If you haven’t already found the post below, you may be interested to read more about my background here

    http://biopsy.wordpress.com/2007/10/27/a-medical-puzzle/

  6. Bonnie Getz says:

    Hi,
    Two years ago I had a total knee replacement with a bone implant above and below my knee. I was in the hospital a week and then I was transferred to the rehab part of the hospital for another 2 weeks. The doctors and nurses all told me I was doing great so I was discharged. Two days later the nurse came out and saw my knee for the first time in 5 days. It was totally infected. I had to be readmitted to the hopital and had 3 more surgeries. Now I have to walk with a brace on my leg and use a walker for the rest of my life. I am only 58 years old so this will be a long time for me. I found out from my medical records that the doctors and nurses knew something was wrong but never told me. They let MRSA eat up my knee. I had to have a skin graft also. It all goes back to the hospital would be at fault if they didn’t discharged me fast. Now I started a nonprofit called Fight Staph Infections Inc. I want to educate the public on MRSA. I recently had another shoulder surgery and was in the hospital 4 days. You better believe I did things totally different this time. If you have time please look at my website. I am trying to add more articles about mrsa all the time. Please contact me if you have any questions. I would like to hear from all of you.
    Thanks and take care
    Bonnie Getz

  7. Steph says:

    Thanks for visiting, Bonnie

    I’m sorry to hear of your experience with MRSA. I, too, believe that it is the duty of those of us who’s lives have sadly been affected by MRSA infection, to share our knowledge so that others may be spared the potential dangers of this resistant bacteria. Lessons must be learnt from mistakes made.

    I wish you all the best in your campaign.

  8. Maya says:

    Hi,
    I don’t see much recent activity, which may be good. I have recently been diagnosed with MRSA in my left frontal sinus. I have had 6 sinus surgeries starting 18 years ago, and have been relatively infection-free for 5 years. I don’t like taking antibiotics, so I usually don’t complain about my headaches until they stick around for awhile. My ENT retired and I was going to a doctor that was nice enough, but never took a culture. After the first course of Zithromax didn’t make me feel any better, I picked a new ENT based on nothing more than the fact that her name was the same as my sister’s. She was so sharp and took a culture immediately. I had pseudomonas and MRSA. This news absolutely floored me. I am starting my 4th different course of antibiotics. I am so tired. Everything tastes funky. I just want to wake up one day and feel good. I live alone, my family is far away, I work all the time, and my best friend lives an hour away. What do you do to energize yourself? I also have Samter’s Triad, so I can’t take anti-inflammatories including ibuprofin, aspirin, and NSAIDS. This morning I was covered with hives and had a fever. Now I’m so full of benadryl that I can barely stay awake. I think my doctor will want to do a surgery, but obviously there are risks when cutting into bone around MRSA colonies. I am so tired and my headache is relentless.
    Any suggestions?
    Thanks,
    Maya

  9. Steph says:

    Hi! Maya

    Really sorry to hear of the rough time you’re having with your sinuses. You don’t mention ever having a CT scan? This would determine the extent of your infection without recourse to surgery. A routine x-ray is of limited use as you’ve a history of previous surgery.

    I’m all too familiar with that relentless headache and feeling as if life is on auto-pilot. The best weapon I’ve found, is distraction. Keep busy and avoid stuffy environments as much as possible. Fresh air will help to energise you so try to plan a daily walk outdoors. I add probiotics to my diet to counteract the effect antibiotics have on digestion.

    I’ve had 2 major sinus surgeries since contracting MRSA four years ago but had to get clearance (from MRSA) before surgery could proceed. My MRSA has not recurred since.

    I hope this is helpful to you.

  10. Harriet Miller says:

    I live with MRSA in my sinuses. I have had surgeries. I have a port and have had numerous different antibiotics administered, at home, through my port. My MRSA is as bad as ever. The infectious disease doctor said that we cannot use anymore antibiotics unless it is life and death situation. I am constantly terribly fatigued, need so much sleep, cannot do normal things like grocery shop. I also have lung disease and have colonized pseudomonas in my lungs that cannot be eradicated. I look back at how active I used to be and it makes me sad. I have five children. The youngest one is 12 and probably will only remember the sick years. I asked the infectious disease doctor how long I could live with all of this infection. He said that he does not know but that if I steer clear of crowds and wash my hands, I might live for years. I find that a bit hard to believe since I feel horrible and I wonder at what point the MRSA will get through to the brain. It is a scary thing to live with.

    • Steph says:

      Harriet

      I’m sorry to hear of your circumstances.

      Your concerns are very understandable. MRSA does indeed complicate treatment of any underlying condition caused by infection.

      I can only wish you well in the future and hope that a successful treatment will be found. Take care.

      Regards,
      Steph

  11. Vicki says:

    I just found out that the surgical culture found MRSA. Have been having constant headaches and last month that surgery for my sinus/septum. I am on Bactrim and frankly have no idea where this came from. I could use any info and support. Seems to be quite complicated.
    trotterleg@aol
    Vicki

    • Steph says:

      Hi Vicky

      Sorry to hear you’re in trouble following sinus surgery. Don’t be afraid to discuss any worries you have with your doctor/surgeon. He/she should be able to reassure you as regards treatment to eradicate the MRSA.

      Don’t worry about where the MRSA came from. Up to 30% of the people you meet every day are either infected or colonised with MRSA. Focus on getting well again.

      Hope things improve soon.
      Steph

  12. c ray says:

    I have done this sort of backwards from the stories I have read here…but I believe I have found something that appears to be working. Almost a year a dr diagnosed cysts on my neck as mrsa. I went through shock repulsion depession-you name it. But within 3 months I had bigger worries. I started hearing voices in my head with huge paranoia and fear. That took me out. Changed my life 180. I lost Every person I loved, college, my house, my children. My greatest love ended up dying before I could improve any. “Losing my sanity” has tore me down more than I have ever realized I was capable of being tore down to. But being who I am at core, I will build myself back better, wiser, and stronger. After finding a safe place to stay after losing my house, I was able to evaluate myself and came to conclusion yhat this was a physical problem not solely a mental problem-which is all any general practicianer I saw thought (as they continually sent me to psychiatrists). I knew my skin on neck was full of cysts, lymphs where swollen, my hair wasn’t growing-but thinning, my teeth were breaking, ajd any injuries or cuts wernt healing. This had to be an infection. I finally saw a naturopath, she put me on an EAV machine that diagnosed me with systemic candida. I used liposomic vitamin c, chlorella, braggs acv, NAC, ALPHA LIPOIC, many to bring my glutathione and histomije levels back up. After that couple months I was able to heal and felt my body was in a much stronger place to find the root cause of infection. I started taking cream of tartar. This finished cleanering out candida and actually made the voices go away! At first I thought it was the potassium in the tartar, but it ended u being that cream of tartar cleanses the blood. By chance I started doing hydrogen peroxide sinus floods and that also made the voices stop. At a point I realized I cant to peroxide floods forever- they are to harsh (but good to get past the bioflm that must ne in my sinuses. So I came across my mrsa ointment from the year before. I mixed an inch of that in saline spray and sinus flooded with that mix. I am on the third day and my voices are 99% gone. Small cysts that jad always remained on my jawline are desolving, I can feel it in my entire body that I am healing! This journey has been the most powerful journey I have ever experienced. I figure that the lower lows a person feels, the higher the highs will feel for them also! Good luck to everyone fighing this battle. You are not alone.

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