Thursday, August 3, 2017

Infection strikes again

(this blog post does not end on the same day it starts... it's been hard to find time to write, I've been very exhausted, and very busy... bear with me here...)

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You have no idea how much I am freaked out today. I don't even know if I can express it in words.

First of all-- DAD: Don't worry, I'm really OK. I promise. I am not writing this because the world is collapsing. I am writing this because this is the only place I "discuss" these hard feelings I have. I'm OK. I repeat, I'm OK!! Say it out loud to yourself "Sarah is FINE". Now, smile.
There. That's better. Now I can write. Love you. :)

OK, so why am I freaked out? Well, here is a picture, then I'll explain it for those of you who don't understand Hebrew...

The page goes on to give more information about what antibiotics
the specific bug is sensitive to. Unfortunately, the first three in the list,
I am allergic to. So we chose the fourth. It's sulfa based, hopefully it'll do the job.

OK, That was yesterday... Sunday. Between yesterday and today I feel like it's been a week. See if you can follow what went down these two days:

Sunday: Woke up, felt OK except for the aggravating and painful infection in my skin graft and my swollen knee of unknown origin. I had walked a lot over Shabbat, and my knee was very sore and swollen. But I had my Osteopath appointment to go to in Jerusalem. I also had to find out the results of the wound culture. I called my health clinic, had to wait an eternity for a nurse to answer. Then I was told that she can't give out results over the phone, but I can retrieve it over the internet with a code. OK, I didn't know that. So jumped on over to the internet and managed to wrangle the results to show up. Boy, was *I* surprised! At first I thought that S. aureus meant Strep A. That's what I had when I had NF. I was sure that was what it meant. All day yesterday I was saying that's what it is. But my doctor said I didn't need an oral antibiotic for it, just try another cream. I tried to reach my doctor to talk to her, because my knee was also swollen, and I felt I had a systemic infection going on and she wasn't taking it seriously enough. But I couldn't talk to her, just send texts to her through the secretary. It was nuts. So then the secretary said that my doctor said just wrap the knee and keep it elevated, and put the new cream on the infection.

Then I left in my car to go to Jerusalem. I was getting more and more anxious as this was settling in, as you can imagine. I have active strep A, and my doctor is being pretty passive, in my opinion. I have tried many creams over the month. I have tried triple antibiotic cream, iodine, neosporin, all of them many times, and I washed the area many times with anti-bacterial soap. All that, and it still cultured positive. Now she wants me to try another cream? Did she forget entire sections of med school? I said a few weeks ago that I think I need an oral antibiotic. She said she didn't want to play around with oral antibiotics with me because of my allergies. But this, this is playing around with my life. Antibiotics have a purpose in the world. I haven't been on any, or needed any in almost two years. It's not so terrible to use one when necessary. I felt she was being cavalier.

Oh, and I forgot to tell you that I did go to the health clinic last week on Friday to try to get an oral antibiotic. Knowing I'm traveling soon, and having this open wound on my skin graft has been very heavy for me. My own doctor isn't in on Fridays, but you can see the one that is on. That doctor wanted a swab of the wound in order to choose which oral antibiotic to give me. *But* you can't do blood tests or any cultures on Fridays in Israel unless you do it at the hospital directly. So, she gave me a referral to the ER to get an urgent swab, with the goal of oral antibiotics. OK, I thought, we're getting somewhere.

I got to the ER, waited a bit (not too bad), and saw two different doctors; one plastic surgeon, and one internal medicine doctor, both less than half my age. The whole visit was absurd... they didn't do anything the referral said to do, mainly take a swab of the wound, for the purpose of choosing which antibiotic to give based on knowing which bug was infecting the wound. "No, that's not necessary", "come back if it gets worse". They weren't impressed because it clearly wasn't cellulitis... yet. I said the object was for it to not *become* cellulitis. They said I have no fever. I said I also had no fever when I had NF. They said this is not NF. I felt like I was talking to a wall. Really? Oh, I coulda SWORN this was NF!? Huh, whaddya know! grrrrrrrrrrr.......... like I had nothing better to do on a Friday afternoon than argue with ER first year residents that I need antibiotics for an open wound. The plastic surgeon resident had the gaul to say that the skin graft skin seems a bit dry, I'm not taking care of it well. I almost screamed at him- "I have had this skin graft since before you were in high school, buddy, I think I know EXACTLY how to take care of it".

What I should have said before I walked out of there without antibiotics is "the last time we all played this game of 'let's not give Sarah antibiotics for an infection' game, the hospital had to write me a big, fat check". But, you know, we never say these things. I just walked out. I was too tired, and too much in pain. Oh, and my knee was swollen, too. I was thinking the knee swelling was the infection spreading, and that worried me, but again, the ER was dismissive about that as well.

I spent a painful but also enjoyable Shabbat with friends, trying to forget about my issues. But it was impossible to forget about them, pain does not let you forget about your issues. Ever.

On Monday I went to my family doctor. She was a little perturbed that the ER did nothing, and she did the swab herself. Then we had to wait for the culture. She examined the wound, and my knee, and felt the two weren't related. I continued to feel they were related.

I'd wind up waiting the whole week for the culture results.

So now were back to where I wrote up there  about finding the results on-line, three days ago. That's when I thought I read Strep A. It freaked me out so much, you can't imagine. It was a whole 24 hours later that I learned that it was staph. Mind you, that's no better, and can also cause NF, but for me it's different somehow. In fact, I learned that when I had NF, I had a combination of strep A *and* staph. I hadn't known that before. The infectious disease doctor was looking at it in my file right in front of her. Interesting.

OK, let's now jump to the day after I saw the osteopath, which would be Monday. I had set up an appointment with an infectious disease doctor who I know and trust, at Soroka. I had her cell phone number, and she had time to talk to me. Finally a voice of reason. She made room for me in her clinic the next day (Monday). It was with her that I learned that S. aureus means Staph A, not Strep A. OK, different bug, same bad. She looked at my knee and was not sure how to proceed. If it is swollen because of the infection, I'd need IV antibiotics, and that means hospitalization. If it was swollen because it is reacting, or for some other reason, then I can take oral antibiotics and go home. She didn't know, so she called an orthopedist in the hospital, and set me up to go see him.

I got to him, all the way on the other side of the hospital grounds. He took some fluids from my knee... nah, that didn't hurt AT ALL! No siree! (wehhhh)
It turns out that the fluid was not infectious, and my blood test was within normal limits, and I had no fever, so I got home (four hours later) with oral antibiotics. WHEW!!!!! With our trip to the states coming up days later, hospitalization and IV's were not on the agenda. I wish this could have been taken care of the week beforehand when I went to the ER to get it done *then*. Oh well. Everything at the right time.

I am on a sulfa-based antibiotic. It's the 4th one on the list of what this staph bug is sensitive to, but the first three I am allergic to. Hopefully it'll do it's job. It is wiping me out, that's for sure. I am so, so exhausted, and it's making me dizzy also. Quite unpleasant. Makes me feel weak, tired, weh. It's a seven day course, so I'll be on it until next Monday night, at which point I will no longer have a staph infection on my skin graft, RIGHT? Right! This has been going on for over a month.

The knee is still hurting, and still swollen. Only time will tell if it heals with the antibiotics, or if something else sinister is going on there. I haven't really had knee problems. I'm concerned that it may be PVNS tumors, but I'm not jumping to conclusions. Can't do anything about anything until I get back.

So, I have started on my new migraine medicine, Topomax. I am ramping up to the dose that the neurologist recommended. I have hopes that it'll work, and that the side effects won't make it too hard to stay on! I have a few new tricks up my sleeve for SOS when a headache does start to come on, and so far they have worked. I have stayed out of the ER for migraines now for a few weeks, so that's good. They have started up a few times with me, but as I said, I have new tricks up my sleeve that actually work! One of them I can't use in America, though, I don't have a license for it there. We'll see how things go.

So there are a bunch of things going on now, medicines changing, antibiotics being taken, hopefully this wound on my graft will close, and we're flying tomorrow. It is such a long trip.... we're flying with a stop-over in Moscow. Six people, lots of suitcases, everyone with two passports. Lot's to remember.

And I'm just so tired. I just want to see my Dad already! And my brothers, of course, and cousins, and everyone else there. But the trip is a hard one. It's so, so long. And the infection is right where the thigh bends, makes it very uncomfortable to sit for too long. I wish I could just click my heels....

So, you'll hear from me next over there!
Bye for now!
(BTW, we have a house-sitter this time, so I am much more at ease! )

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