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ProfessorTomoe

Changing Medications (Level of Trust Required)

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3 hours ago, The Old Hack said:

Okay, this was kinda creepy.

Today I realised that I was running out of every single medication I am taking practically all at the same time.

I *try* to arrange for that to happen, so we only need to make one trip to the pharmacy.

Meanwhile, my mate likes to only get one refill at a time, so it doesn't seem like we're spending so much money... even when the pharmacy is an hour away (which currently works out to costing about $20 per trip in gasoline - another reason to get as much done in one trip as we can manage).

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1 minute ago, Don Edwards said:

I *try* to arrange for that to happen, so we only need to make one trip to the pharmacy.

Meanwhile, my mate likes to only get one refill at a time, so it doesn't seem like we're spending so much money... even when the pharmacy is an hour away (which currently works out to costing about $20 per trip in gasoline - another reason to get as much done in one trip as we can manage).

Thank you for putting things in perspective for me. I need to undertake the mind-bogglingly harsh journey of a ten minute easy stroll down to my local pharmacy where I usually only have to wait at most five minutes to get my prescription filled. I have very little to worry about, it seems.

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Prof, you have my heartfelt sympathies.  One of the manifestations of my sister's lupus was a vasculitis that caused the tip of her little toe to turn black and fall off.  She said if you're going to lose a body part, a toe is probably the one she'd choose, but it's still pretty scary.  Just know that it doesn't automatically mean you're going to get disassembled bit by bit -- I know that thought will have gone through your head, that this is just the start, but it is not a slippery slope you're sliding down.  It's just a toe.

These days, she jokes about, "This little piggy got beheaded...."  :-)

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1 hour ago, CritterKeeper said:

Prof, you have my heartfelt sympathies.

Much obliged. It's been a rough couple of months, which explains my absence.

1 hour ago, CritterKeeper said:

These days, she jokes about, "This little piggy got beheaded...."  :-)

My mother used to threaten to amputate my toenails at the neckline.

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Update: I have an appointment scheduled with an infectious disease specialist on Wednesday, July 18th at 9:30 a.m. CDT. The damned referral secretary first tried to hook me up with a wound care specialist, which would have done no farking good. How is that supposed to help a case of osteomyelitis? I got her straight on the subject and she fixed things, finally getting me set with the right doctor.

I hope.

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I've just returned from the infectious disease specialist. Here's the deal: I'm going to have to go into the hospital on Friday to have a PICC line inserted. Immediately after that, I go back to the infectious disease specialist's office and pick up a week's worth of supplies. I will then have to infuse myself daily with two antibiotics through the PICC line. I'm not sure if each drug will take 30 minutes or if both drugs together will take 30 minutes, but in either case it's something I'm going to have to do for the next six weeks.

I don't know how I'll do it, but it's got to be done. Man, they are taking my toe extremely seriously!

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1 hour ago, ProfessorTomoe said:

Man, they are taking my toe extremely seriously!

In my experience, this is better than them ignoring the problem.

I have less good news. That medication I spoke of earlier? Well, apparently my doctor is off on vacation. Their telephone answering machine suggests I call one of her colleagues who takes up the slack of her absence but that did me little good as this was not mentioned on the homepage I ordered my refills on. I have medication till Sunday and then I run out of two kinds of important medication. After a few more days, I run out of a third. I am not best pleased. Whether I can convince a strange doctor to write prescriptions for me in my own doctor's absence I'll find out tomorrow, I guess.

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2 hours ago, ProfessorTomoe said:

The story of how things went yesterday is too long, so here's my blog post:

https://dleejackson.lbjackson.com/2018/07/i-certainly-didnt-picc-this/

Oh, joy!

Could be worse.  My sister was on peritoneal dialysis for several months.  If you put a bunch of specially-made fluid into a person's abdomen, then stuff diffuses across the membranes that line the inside of the abdomen, so that things which are higher concentration in the body than in the fluid will shift into the fluid, and vice versa.  So, four times a day, she had to drain out the old fluid and put in a new bag's worth.  Four times a day, every day.  But, it meant she didn't have to go to a dialysis center three days a week and get hooked up to a machine for hours, and she didn't get the icky coming-down-with-the-flu feeling on Sunday night when she had to wait an extra day to clean out the built-up toxins.  So, overall, peritoneal dialysis was far preferable to hemodialysis.

Peritoneal is also cheaper, since once the catheter is installed into the abdomen, it mostly only costs the supplies.  She was a poor student at the time, and when she told the insurance she was going to switch, they said, "Great, now you have to pay for your own supplies, that's policy!"  So after some back and forth, she basically told them, "Fine, then I won't be able to switch, so you'll get to keep paying for hemodialysis three days a week instead!"  Suddenly the insurance company decided they would pay for her supplies after all....

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The at-home infusions have begun. It's a little bit of a clusterfark, since we've had to follow the instruction sheet both times and Mrs. Prof is loathe to follow instruction sheets. This is my bloodstream, though, so we're doing it right, for Pete's sake.

Here's a photo of what's required in order to get the process going:

large.MyIVSupplies20180721guz.jpg

The two egg-shaped things are actually my antibiotic pumps. No hanging bags of fluid anymore - just follow the instructions, and the eggs will pump the medicines into the PICC line inlets. In addition, there are saline flushes, heparin flushes, alcohol wipes, and a vial of one antibiotic that has to be mixed with saline before it's inserted into one of the eggs.

Once the infusion gets going, it takes around 30 minutes for the drugs to be pumped into me. After that, we do a saline flush, a heparin flush, and cap it off with an alcohol cap. Procedure over.

Another thing I found out: I can't lift anything heavier than 10 pounds (4.5 kg) with my left arm (the one with the PICC line in it) for the entire six weeks.That's going to be hard to work around.

Oh yeah—the drugs being infused into me are Cubicin and Invanz. I've linked both (the Invanz link is a PDF). Both are strong antibiotics that I hope will knock out the bone infection in my toe.

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I fell last night.

Messing around at bedtime (keep it clean), I jumped on the comforter and laid there for a while. When I tried to get my footing off the bed, my feet came out from under me. I landed on my knees, which is never a good thing.

I got turned over and eventually got my right knee under me, which allowed me to get up. Time on ground: around 10 minutes.

I am officially a fall risk.

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Don't know what I did overnight, but I woke up with excruciating pain (8.5) in my PICC line path, especially my shoulder. Couldn't even lift my pills to my mouth at first. It's leveled off, but typing is still painful. I sleep on the sofa (Mrs. Prof snores LOUDLY and the cats have claimed my spot, which I've donated), so I don't toss and turn much at night. That shouldn't have caused so much pain, though.

Please, oxycodone, kick in!

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11 hours ago, ProfessorTomoe said:

Don't know what I did overnight, but I woke up with excruciating pain (8.5) in my PICC line path, especially my shoulder. Couldn't even lift my pills to my mouth at first. It's leveled off, but typing is still painful. I sleep on the sofa (Mrs. Prof snores LOUDLY and the cats have claimed my spot, which I've donated), so I don't toss and turn much at night. That shouldn't have caused so much pain, though.

Please, oxycodone, kick in!

How is it feeling now?  I'm hoping if it never got better, you called your doc....

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It got better after a few hours. I saw the doctor later that day and told her about it. She told me to call the nurse during the week or 911 during the weekend if it happens again, since it might be a sign of a lethal blood clot. I haven't had any pain since.

In other news, I've had low blood pressure lately (105/54 at the infectious disease specialist), and I've been thinking it's due to the diuretic I'm on for edema in my legs. I sent my regular doctor an e-mail about it, and he advised me to lay off the diuretic for a few days to see if my BP comes back up.

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Had more problems with low blood pressure at a subsequent infectious disease doctor appointment. They were going to draw blood, but when they saw my BP was 105/40, they wound up giving me a half liter of saline instead. I e-mailed my regular doctor and told him I was dropping my blood pressure medicine. I'm now supposed to monitor my BP (on a brand-new Omron BP652 unit, which will replace the crappy CVS brand unit I had) and set an appointment on Wednesday next week if the symptoms continue.

Oh, and try to keep Gatorade in business while I'm at it.

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On 8/4/2018 at 3:08 PM, ProfessorTomoe said:

Oh, and try to keep Gatorade in business while I'm at it.

Glad you’ve still got your sense of humor.

Hopefully this is as simple as dropping the BP drugs.

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Going to two doctors today. First to my pain management doctor for a med check, then to my family doctor for a much more complicated appointment. You see, in addition to the BP problems, I'm developing upper respiratory infection symptoms despite being on two of the strongest antibiotics that are made. Also, last night, my right foot decided to swell up like a balloon. I'm confused as all get-out. What the smeg is going on with me?

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Shrink day.  Keep my current drugs at their current dose, but drop generic Tylenol PM, as she suspects that is what causes me to "sleep shop".

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16 hours ago, mlooney said:

Shrink day.  Keep my current drugs at their current dose, but drop generic Tylenol PM, as she suspects that is what causes me to "sleep shop".

Sheesh, these drugs have all sorts of weird side effects. I heard that someone blamed Ambien for them making racist remarks. :icon_eek:

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