January 13th 2016
Last time I updated was nearly 6months ago... Long time, lots has happened, mainly Charlotte! She's great but has only slept through the night 5 times, the last being last night. I've been teaching her how not to eat at night. So hopefully she's got it now and Kristy and I can get some sleep....
At the end of August my gvhd started to get out of control a little and the decision was made to put me on prednisone which is a steroid, they started me on 80mg a day and said I'd be on them best case scenario for 4 months. Some of my symptoms from the gvhd started to get better in 12 hours! Lower arm and leg edema was getting bad and that turned around almost immediately I started the steroids.
One of the side effects was that I had lots of energy on 3-4 hours of sleep and was starting my day at 4am! It was great I was so productive! The kitchen was clean, dishwasher emptied and kids lunches made by 5am. I even got back to yoga for a little while.
After the steroid honeymoon period was over maybe 8 weeks in and i started to taper the dose some of the negative side effects started. Steroids can attack your bones and I was waking in the night with severe knee pain, having to take strong pain meds. Something my doctor said could be necrosis due to lack of blood flow. In extreme cases when people take steroids for a prolonged time they can need hip or knee replacements.
So because of this we started another treatment called photopherisis which does the same thing as steroids with few if any side effects. The only drawback is the time it takes. I get hooked up to a machine similar to a dialysis machine for a couple of hours for 2 days every 2 weeks. The first month I went in 2 days every week and after that 2 days every 2 weeks. I'm a little tired afterwards but that is the only side effect.
Of course I had the wrong kind of port so they had to take that out and put a new one in, which is always fun.
I had another small surgery recently. Zometa which I had been getting once a month to strengthen my bones because of all the ribs I broke, Zometa has a rare side effect of making a part of my lower jawbone to die. When the bone dies the gum covering it also dies so I had exposed jaw bone in my mouth... An oral surgeon cut away the dead bone and the gum is slowly covering the hole. It is a little painful to eat so that is helping me loose some steroid weight (about 22lbs)...!
So to recap, I'm having monthly kappa light chain blood tests (cancer marker) and although they are slightly elevated they are not increasing. The slightly elevated numbers have been put down to the inflammatory nature of GVHD.
I'm working again, I stopped for almost 3 months because while taking prednisone my immune system is nonexistent. When my doc started pushing out how long I could be steroids to a year or forever at a lower dose I asked him how I could safely (or as safe as possible) go back to work as a phlebotomist. I enjoy the work/people, the money is nice but my mental health benefits the most.
Feb 11th Update.
Well this post is taking forever! So a couple of weeks I got what I thought was a 24hr GI bug which turned in to a 10 day diarrhea fest. I ended up at KU for a few days and was scoped and biopsed. It showed stage 1 GVHD in my upper intestine. Mild but to get ahead of it they treated me by increasing my prednozone from 20mg every second day to 160mg for a week and then 80mg per day. So, kind of back to square one. I guess when GVH flairs up steroids are the only way to go.
So here I am with more energy than recently and I'm trying to maintain some fitness. A far cry from before but getting better.
Feb 22, 2016
Last update before posting this I promise.
GVHD had also led me to have superficial blood clots (2) in my left calf. which after taking Aspirin 325mg per day for a while turned into DVT's in both legs. So now I give myself Lovenox shots twice a day to help thin my blood and break down the clots.
Around Feb 14th I developed a fever and after blood cultures found I had a Staph infection in my blood. Both sites they tested, my port and a peripheral stick, so they started antibiotics and a day later they took out the port.
Once I was negative for infection I had a PICC placed and 4 days ago stopped Vancomycin and started Nafcillin. This runs 24/7 for 10 days. So I have a bag, pump and backpack for the duration. Bags last 24 hours so its not too much of a pain in the butt. Apart from day one when I was in McDonalds with Sophie and put the backpack on the seat beside me and managed to forget about it 3 or 4 times and tried to walk off without it.....
So... 5 or 6 days to go on Nafcillin (love the name)! a bit tired but back looking after the kids while Kristy is at work. I didn't go to work over the weekend. having my 'backpack' and feeling pretty worn out would have made it not as much fun as usual. Should be up and running close to 100% in a week or so I hope.
I have my steroid face back which is always fun, I guess variety is the spice of life...
