I saw my neph today, and as expected, he shot down my albumin infusion idea. His rational: there's no data to support or even suggest that it works. My rational: why not try it anyway? His response: no.
Ok, so after a discussion about quality of life issues, and him still trying to justify our last interaction, I felt like I was able to make a little head way.
I NEED a break from this swelling....even if it's only temporary, I need it. So we're essentially going to see how much we can push the diuretics. There is a chance that my electrolytes could become whacko, and that's a pretty dangerous situation, but he also feels (rightly so) that I'm smart enough to get a drink of water when I'm thirsty (which I'm mostly likely to be even more so since I'm upping the dose) and to call if anything feels "off".
So we've switched from Lasix (furosemide) to Demadex (torsemide), but kept the dosage the same at 20 mg / 2x day. And we've also bumped up the metolazone from 2.5 mg / 2x day to 5 mg / 2x day. We'll try this for a couple of weeks and see if there's any response. In the meantime, I'll get labs done weekly (starting Monday) to check on my sodium, potassium and magnesium levels to make sure everything's still in check.
I also started on a potassium supplement, and lemme tell ya...this pill is HUGE! Holy hell, that's gonna be hard to swallow tomorrow morning, and it DEFINITELY won't fit into my little pill carrier/sorter thingy!
I also asked him to write an order to do a 24-hr urine over the weekend. Since I'm not participating in the drug-part of the clinical trial, I want to see if it worked, and a 24-hr for me will tell me that. Keep your fingers crossed over the next few days that I don't dehydrate, pass out, or cramp up :)
Our disease confuses the hell out of me. I've been told for ten years, by three doctors, that I need to LIMIT my potassium. I have not had a banana since 2001. (Not that I miss it - banana pudding on the other hand...)
ReplyDeleteI can't find my pill sorter. We moved twice in the last year and it just sort of disappeared.
You asked for a 24 hour urine? That must have caught him off guard! :)
I've done an albumin infusion before to get some relief from swelling... It was awesome. I peed off about 20 lbs. But, it did require a hospital stay. And it all came back a lot sooner than you'd expect.
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