C-Diff

Clostridium difficile :cdiff

The ugly monster that lives inside me.  Five years out of surgery and with all the life changing ways I have adjusted to my new normal, nothing defeats me like this infection.  In my previous posts I have mentioned how my beloved rescue Staffy Bella had “diagnosed” me several times with this awful disease.  The last couple months I have been living in a sort of denial of how sick I was, I didn’t have her with me anymore to warn me of how sick I was and I didn’t want to listen to the inner voices in my head that something was very wrong.  Only someone who has had this debilitating illness can truly understand it’s effects on the body.  The diarrhea may be perceived as just a nuisance to some people, but the reality is it is physically draining.  Imagine going to the bathroom 10 times before 8:00 am and going to work being on your feet all day and trying to pretend that you are fine.  Dehydration sets in rather quickly as do the other symptoms of nausea, fatigue, pain and tenderness in the abdomen that feels like your body was a punching bag for a champion fighter.  You are hungry but you can’t eat, you don’t go out because you know you will be sick, you can’t even enjoy the comfort of your partner for fears of being sick.  In my case it also adds to my IBS symptoms and exacerbates the pain from my back surgeries.  I also have the perfect storm of being allergic to most antibiotics.  Currently there is only 2 antibiotics that can treat recurrent C-Diff and I can take Vancomycin but it comes at a hefty $500 copay for a 10 day supply (I will be on for close to 3 months)  Insurance companies and pharmaceutical gouging will be another blog post!  In addition to the cost, Vancomycin also makes me very sick to my stomach, but it is a necessary evil to fight this disease.  I have explored other treatments, in 2016 I had a Fecal Transplant which involves taking healthy stool from a donor and transplanting via a colonoscopy into a sick person.   Gross I know, but if you get passed the gross factor, Canada and other countries have been performing for decades.  I won’t get into specifics but suffice to say, after my transplant I was rid of the infection for a year and a half.  Fecal transplants have about a 95% success rate compared to antibiotics to cure C-Diff, but many people like myself with recurrent C-Diff may need repeated transplants.  In my case, I believe I was reinfected after suffering from a kidney infection back in February – a transplant does not protect you from this as antibiotics are a cause of C-Diff as well as a cure sadly.

As I write this I am fighting the urge to throw up from the Vanco and trying to find a way to get fluids and nutrients into my body to feel stronger, it is a constant battle that I will have for the foreseeable future, but I will get thru it again.  I will have days like today that I will allow a little pity party, try and shake it off and dig deep to find the strength – I WILL FIND IT and hope to beat it once and for all!

Osteomyelitis, Staph Infection In Spine

 

Have you ever had a nightmare, where you are scared and trying to scream to people so they can save you but you can’t get the words out or be heard… you wake up in a cold sweat and out of breath?  That’s what the next hospital stay felt like every day.  I was trapped in a shell of pain,  I couldn’t get out and no-one seemed to be able to get to me and make it stop.  Even as I type this the details are blurry at best, I remember Doctors and nurses and blood draws and confusion of what to do with me.  I remember morphine and IV bags… I remember the look on my husbands face of helplessness and frustration.  I remember many of the ER doctors remembering me because we had spent so many visits to the ER together… oddly, this comforted me, they genuinely seemed concerned for me but also baffled by what was causing me such pain….. blood counts starting coming in, something was very wrong, my white cells where off the charts, so at least they at least knew they were fighting infection, but how to fight it?  I was awaiting a CT SCAN aspiration – this involves inserting a large needle into the spinal column to drain fluid and determine what bacteria is causing infection so it can be eradicated.  I remember being awake, which was explained to me that I had to be able to tell them if something causes pain or other sensations, there is some sedation but you are aware of what is going on.  I remember lots of pressure and praying it would be over soon.  Sadly it was over soon, my spinal fluid was filled with blood and pus… I was being told I had to go into emergency surgery.  To back up a bit, my husband was not with me as I was admitted during the night and it was a weekend so my test was going to be some time the  next day, we didn’t know when and there was no time to let him know I guess.  So back to surgery, I was unable to give consent as I had been midly sedated for CT SCAN, I remember a sense of urgency to get my husband to the hospital to give consent as it  could not be done over phone, I remember crying and thinking I would never see him or my children again and I needed to tell them I loved them one last time….I was lying on the gurney on the way to surgery and I still didn’t know exactly what whas happening, it was like watching a movie in slow-motion accept I was the main character.  I can’t really write about what happens next in order as I don’t have real memories or they are so fragmented I can’t be sure what is real and what was dreamt…I have to think about how to continue my journey, I’m not sure I can relive this part yet, reliving this is harder than I thought and I am in such a good place now, but I feel like I need to put it in print to leave it behind??