It’s been over a month since I updated, and unfortunately it
hasn’t been because there hasn’t been anything to update.
I made it through Halloween (did nothing but lie on the couch, watch tv and eat a little pizza), but waking up the morning of
the first was downright difficult. I was exhausted and didn’t want to get out
of bed. Mike finally got me up to get me to the shower, but as I stopped at the
mirror to do my pre-shower wound check, I knew something was wrong. Everything
was the wrong color and just looked like it was covered in syrup. There was a
new area that looked like it was protruding a bit. We called the doc and then
headed to the ER.
We were only in the ER a little over an hour and a half when
the ER doc came to look at me. They had already taken blood and culture of what
was going on. When the doc moved the surgical pad to look, I suddenly felt
fluid running down my back. That new protrusion had erupted and erupted
big. (Which was odd anyway because a
couple of other times I had even larger areas like that and my plastic surgeon
cut into them thinking it would be an abscess and it turned out to be
absolutely nothing.)
Once the IV challenge began, so did the pain. The first
attempt consisted of the needle going in and my arm turning into a sudden massive bruise immediately. This photo was taken on the 4th at 1:06 in the afternoon. The first attempt was on the 1st, so it already had a few days to heal.
The second IV went into the inside of my wrist. It only lasted 8 hours. In the picture above you can see where IV 3 was placed (inner side of elbow). It didn't last terribly long as well, because by 7 pm on the night of the 4th, we had a new one in.
When that one blew that night, after a couple of hours they set me up for a PICC line the next morning. Which was in place before 10 am. they told me it would be good for months, a year if I needed it. It barely lasted 24 hours and gave me a blood clot as well. while the doctors argued over it for a couple of days, they were actually able to get the PICC line working again but one doctor decided she didn't like it there and ordered it be removed and moved to the left arm instead.
I should probably mention at this point that even though I had been in the hospital a few days and was changing the bandaging on my wounds myself, I was not looking at them. I didn't want to see them and since I couldn't see them without a mirror it was easy to avoid them.
Somewhere about this time one of the partners to my infectious disease doctors came in to see me for rounds (may have been the day before, may have been the day after. The pain was excruciating so I kept as drugged as possible with my allowed Dilaudid and Norco. His announcement changed things a bit. He said I had been being treated with the wrong antibiotics because the bacteria I was dealing with was anaerobic and they had been treating me for an aerobic bacteria. He said he had only seen one other woman with this and told the nurse and I, we were dealing with actinomycosis. I began a search on the internet and found very little. The nurse and I added in "milk ducts" in our search and found this article: http://www.saudijhealthsci.org/article.asp?issn=2278-0521;year=2014;volume=3;issue=1;spage=53;epage=55;aulast=Suranagi
The more we looked the more we learned its a very rare condition, more common in animals in humans.
The doctor ordered a new culture to be taken and a change of antibiotics.
On the 5th I finally got up the nerve to see what I was dealing with.
It again, began changing daily. November 6th:
November 7th:
 |
November 9th:
I left the hospital finally on November 11. (yes for those who get it - 11 days and on 11/11)
I was set up with home health care and have a nurse who comes to see me at least once a week. Due to the blood clot I am on Coumadin and have to have that level checked twice a week.
I have to have a CBC at least once a week, and learned last week I am extremely anemic, which partially explains why I can't stay awake. My protein levels are so low I'm malnurished. The fluid that leaks through the wounds and cleans them is called serous fluid. It is filled with protein so as it leaves my body, so does the protein. Now I get to take ensure and iron pills on top of everything else. My dad did get a kick out of me drinking ensure just like him now though. This weeks blood test showed another issue as well -- now my liver enzymes are getting out of whack from the antibiotics(still have more than 4 weeks to go) (shown on Monday's blood test but were still fine last Thursday). Because I'm also on cholesterol meds which can damage the liver, I have to stop those for the rest of my antibiotic treatment.
This was the 14th, though since then the doctor has opened up everything up again.
and this is today:
The picture is a little deceiving as it looks far more healed than it is. The large hole to the left still has no actual skin and the coloring of the skin is completely purple.
So basically, I have gone through several surgeries, may still need some more, my insurance company has been billed well over $300,000 for the year. I have had severe amounts of pain. My body has taken a severe beating that Im told will take up to a year to recover. I have missed months of my life, and my job. All of fall disappeared for me. No apple picking with the grandkids. No haunted hayride. No corn maze. I'm exhausted constantly. For the first year in probably 25 years, my holiday cards wont be the first you receive, if you receive one at all, because I probably womt get them done. Most of Christmas decorations won't go up this year. My days consist of tv and sleeping because thats all the energy I have. Somedays I manage to stay awake a full 12 hours. Its a lot to get used to, and honestly I don't want to get used. Feelings useless is not fun.
As of right now, my last infusion day is December 18th...I'm really hoping that the Force really will awaken.
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