#plasma exchange

[coherentmicom]

https://hallbook.com.br/blogs/840320/Antibody-Mediated-Rejection-Market-Size-Growth-Driven-by-Advanced-Therapeutics

[mrsmarymorstan]

Thought we were doing well on PlasEx this time around and that there might not be any complications! But alas, today my veins just did not want to be co-operative. Ended up with all 3 nurses gathered around me trying to find a vein that was strong enough to hold a return needle. It was like they were playing a video game together, swapping the scanner between them and plenty of back seat driving. (Go left! No, go right. Down a bit, up a bit! There! That one!)

But as soon as they found one it would immediately collapse back down again.

They eventually found one but god it took so long I thought they were just gonna send me home...

You're meant to stay relaxed during the process so that it can be easier but that is NO easy feat let me tell you!

Still, I always feel so much better after a PlasEx it's remarkable. Really feeling the benefits this time in particular although that might just be because I'm getting over COVID and that made everything so much worse for so long.

[mrsmarymorstan]

Today's Plasma Exchange was painful and tiring but went well overall. I am very much one big bruise now though, and am preparing for more pain tomorrow.

They're running out of insert options currently, so I'm getting bruises on top of my bruises. Literally. Apparently it's a steroids thing? It's very easy for the needle to slip and cause pain because your connective tissue is weaker.

But I am feeling more spirtely though! I am "god it's been a long day" tired, rather than "my body hates me" tired and that's quite refreshing!

But yeah, last one tomorrow and then we shall see how I fare in the weeks to come! I feel like this has done more for me than any of the steroids did. It just also happens to be a more exhausting procedure.

My specialist was also meant to come see me at some point this week but hasn't so goodness knows what is happening there ¯\_(ツ)_/¯

It's not like I have anything better to do when I'm lying in the bed with my arms stock still on two pillows unable to move a fraction of an inch in case something moves the wrong way. Other than listen to Discworld Audiobooks.

[mrsmarymorstan]

Day two of five is over and oppfff it was a rough one. I seem to remember that last time day 2 was a struggle as well? My veins did not want to play ball...

Luckily they managed to get everything sorted, but having to keep your arms stock-still for three hours is surprisingly stressful. Especially when the machine beeps suddenly and the nurse has to rush over to find a new balance point for you. It was all very house of cards, you know?

Luckily I have plenty of Audiobooks on my phone to keep me occupied without the need for hands! God Bless Libraries and Libby 💜

[sickwithoptimism]

Chronic Illness and Post-Traumatic Growth: Bittersweet Reflections

#ChronicIllness and #Post-TraumaticGrowth: Bittersweet Reflections on an article by Carolyn Thomas' Heart Sisters blog.

I am happier because I had to face what all of us try not to face: that we are going to die. It’s a Fact.”

…

Life has a sweetness to it and a beauty and a power that I wanted to celebrate.”

Valerie Harper (August 20, 1940 – august 30, 2019)

For those of you who have been following the Sick With Optimism blog, you may have noticed a distinct lack of communication over the past couple of…

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[fallennymph]

i get a day off treatment tomorrow and then one more treatment session of plasma exchange on monday. im puffy as hell i dont even look like myself and i hate it. also massive tube in my neck is horrible but im hanging on. 

just hope they let me go home monday, even if its just for a couple days. 

[cory5412]

The surgery was successful, we think. I was told that I have a lot of scarring on my veins and arteries, so they had to do some clean-up, and move the position of the fistula up a little bit. “It’s like you dip a pipe in cement, let it dry, then need to clean off the cement without hurting the pipe,” the surgeon said to me. That’s pretty intense.

So, i’m in a little bit of pain, but I’ve been at home, alternating between napping and audio chatting with some friends. 

I’m hoping go to work tomorrow, but we’ll see how that goes. My left arm (where they put the fistula) is in some pain (I’ve taken one tylenol 3, I don’t normally, but this seemed more painful than the catheter placements.)

So, we’ll see what happens. I hope it’s successful and usable because that surgery was very not ideal.

[cory5412]

Unhelpful

The process of getting a plasma exchange treatment is sort of weird here in my town. As I have noted previously, I live in a relatively small town. We have a single plasma exchange machine in the whole town. The machine itself isn't super difficult to schedule, because there are really only two are three people in town who use it.

That's part of the problem though. The process of doing "outpatient" plasma exchange isn't exactly trivial though. Because there are only a handful of people in town (it may be as few as two) who need the machine, the machine itself is almost never the bottleneck. The biggest problems are that the actual dialysis unit is only physically big enough for four beds, and that plasma exchange tends to require nearly constant supervision by a single technician, while regular dialysis seems to allow one nurse or technician to supervise several patients.

The other problem at my hospital in particular is that because the nephrologists want to be able to do it as an outpatient procedure, but the hospital isn't really set up for that. The software they use on their computers require that each time you come in for a treatment, you be assigned a "bed" (in some random part of the hospital) and is essentially counted not just as a visit or an outpatient procedure, but as a really short inpatient procedure. To be honest, I think that there isn't anything good about this particular arrangement, and I don't know why they can't count it the way they do things like lab work.

So, on Sunday, I show up at the registration desk and of course it's somebody who is happily unfamiliar with the situation. He calls the hospital's one-stop coordination center, and they tell him a particular visit number to use. He registers me into a bed and then I go back to the dialysis unit.

It transpires that the nurse has already started using a different number, on the advice of somebody who had pre-set all of those visits the previous week. We didn't really reconcile the numbers because up to that point we had never had any problems.

We get almost done with the treatment and the dialysis nurse calls a nurse from somewhere else in the hospital to help with the actual discharge process. The dialysis nurses all know how to do it, but aren't allowed to, because they are technically employed by a contracting company that runs the center and provides the services to the medical center.

That nurse detects (as they all always do) that something is up, and essentially says something to the effect of "well, I'll get around to it eventually." Okay, well, that's great but you can't ask another nurse to look after your patients for a few moments and come help out? This has all been premeditated, were you not notified that this would happen today? Why?

A few minutes pass and she calls back, informing the dialysis nurse that she used the wrong number, and it takes them a few minutes to work out that because the administrative person at the registration desk had used a different ID number for the visit.

The nurse continues to decline to come down to the dialysis unit to assist, so I put my shirt on and fidget around (playing Pokemon, as it were) and waited. The dialysis nurse and the hospital nurse exchanged a few more phone calls, where it sounded like blame was being exchanged. Based on what I could hear, the dialysis nurse was trying to assist in finding a solution, and the hospital nurse was interested in redirecting blame and ultimately getting rid of this problem.

Finally, after at least 60 minutes after having been disconnected from the machine, used the restroom a few times, and so on, the nurse came down, and she still hadn't done anything to actually reconcile the records, to my knowledge.

At the end of it, I was 90 minutes out of my normal day, and to be honest I didn't have anything else going on and I was having a relatively good time playing Pokemon, but it bothered me because somebody was talking about how the dialysis center is used as a profit.

Then, today, somebody from the hospital called and felt the need to ask if I was given excellent service.

Well, no, as it happens, the dialysis nurses were great as always, and then the hospital nurse finally showed up, an hour after we asked them to, acting put-upon for having to help a patient, blaming everybody when blame wasn't particularly due, caused confusion and delay for other patients, and ultimately creating a patient-hostile environment.

And so, feeling my current superpower of regular-human strength and endurance(!) I'm essentially on the warpath. It's time to write some sternly worded, factual e-mails, and make some calls. On one hand, it's a really inconsistent experience for me. On the other hand, I really don't know if the hospital thinks it's worth improving the experience for the one or two people (in a town of 60,000, plus outlying areas).