Round 2, Day 3

My story began back on September 28, 2015, when I landed in the ER, two days before my 50th birthday.  On my facebook I wrote this:

Doc said I probably got this because I took antibiotics for dental work last week. Talk about stomach pain and other bad things I never want to experience again. Took 2 liters IV this morning, got meds, Doc called just after I got home with test results. Sucks to be me at this time. Nurses in the ER at NCH and Dr. Bouchard are the best. I see a lot of bleach in my future. http://www.cdc.gov/hai/pdfs/cdiff/CDiff-One-Pager.pdf

 

You can track that journey to today, via facebook.  Little did I know that 6 months later, I’ve still got the virus, and am feeling worse than ever.  After many up and down days, mostly not eating, lots of nausea, and finally having a follow up appointment with my regular doctor, I was referred to a specialist in Littleton, NH.  My GP had told me that I was no longer infected with the disease on 2/24/16.  The gastroenterologist asked if I had ever been retested.  No, no I hadn’t.  The first thing he did was schedule a retest, and of course set up appointments for endoscopy and colonoscopy to see how things looked from the inside.  In the meantime, on Monday, 4/4/16, I brought the “sample” to North Country Hospital for testing.  They told me that they would send the results to the gastro first, then a  copy to my GP.

On Wednesday, I came home to a message on the answering machine from the gastro.  The doctor himself, saying call back.  I knew that wasn’t good.  On Thursday, of course I called him first thing in the morning.  He advised that my test for C. Difficile had returned “positive” once again.  So, I’d really never been cured. This time I was prescribed Vancomycin, a heavier hitting drug than the original Metronidazole I was given by the ER doc.  Prilosec, as well as Zofran, all on board now.  Friday I started taking the meds, and the pain in my belly is 9/10 compared to childbirth.  I even sent the dogs out of my room for the day and am isolating myself so I can get some rest.  Thankfully Tom is home to take care of me.  He’s getting to be a better nurse.  Maybe because I told him today if he didn’t help me out, I was going to end up back in the hospital where I can be nursed properly.

So my journey begins again, 25 pounds lighter than I was in September, when first diagnosed.  What do I eat?  Right now – not a freakin’ thing.  Just drinking water and hoping my headache and stomach pain go away.  So confusing – what to eat, or not, when I do have an appetite at all.  I see lots more cream of rice in my future, and maybe turkey sandwiches, which is really what I’ve been living on, along with gingerale and the occasional Pepsi and Angry Orchard hard cider (which I had given up for 2 months, and started again because I love the taste – just like cider!  The gastro told me to go with whatever works, of course gave an instruction sheet, blah blah, and I’ve been researching a lot online since the first diagnosis back in September.  Today though, not a good one.

So I’m back in bed again, in pain, weak, feeling woozy, and just wish I could go to sleep and wake up and have this all be over.  I’ve got the chills off and on.   I miss food so much!!!  My weight today is about 153.  I can fit into size 10 jeans, and my high school class ring (Class of ’83 Peru Central, NYS).  I feel like I’m wasting away from being that strong person I used to be, reduced to this lightweight whiner.  Self imposed isolation because I’m scared of getting germs, and I’m at Howie Mandel level OCD regarding touching anything in public places.

The best kick in the groin about this drug – without insurance it would cost $1650.  Yes, you read that right.  It’s about $30 a pill.  I hope to God it works this time.  As it was, it cost $72 for the 14 day course every 6 hours.  And the co-pay for the endo/colo (which cannot be done on the same day due to insurance) must be paid in advance.  There goes all the money I used to spend on gardening, but I’m glad I decided a while ago I wasn’t going to do that this year.

So stay tuned, if you care, and I’ve heard from a few who also have suffered from this disease.  It kills people, and I have no doubt why.  This is definitely going to be an ongoing battle though, and I wanted to be an advocate for awareness if nothing else good can come of it.  Read and learn.  Mostly use BLEACH to kill germs wherever anyone has touched – like door handles – and WASH YOUR HANDS religiously.

Enough for now, I’m surprised I even got this much done today because this morning I was moaning in pain – and I’m still in pain but not moaning as much.  My head is throbbing, stomach is bricked up, and who knows what the intestines are doing besides being painful. Hoping for more restful day and that by tomorrow the pain is under control so I can at least move. Sucks to be me at this time.   https://cdifffoundation.org/

cdiffsurvivorsribbonhttp://www.cdc.gov/HAI/organisms/cdiff/Cdiff_infect.html