Some background: In early November 2020, I had a catheter inserted in my right carotid, as is usual for urgent-onset dialysis (should have been started in late September--if Terry wasn't literally terrifying in expressing her anger about it to various medical personnel, they likely would have waited till after Christmas, and I would be dead--I have a sneaking hunch a certain MD would have experienced a rather painful homicide had that happened. Terry and I are both Christians, but neither of us would turn the other check in a case like this. May God forgive us, but there you have it.)
Dialysis went perfectly fine via the catheter without pain, but my clinic kept trying to coerce me into getting a fistula surgery in my arm. (Usual for long-term dialysis in about 80% of patients.) I had seen what other patients with fistulas went through, and I was at least skeptical.
What the surgery consisted of is joining and artery and the corresponding vein directly to one another, causing the combined vessels to swell, making it easier to insert the needles that are used in this type of dialysis--almost impossible to use a normal vein. Had I known what lay ahead, I would have refused AMA (as do 20% of all dialysis patients--but not at my clinic). The clinic kept pestering me until I finally agreed. Surgery was done in late April, and was ready for the fistula to be used.
Then for the first time I saw the needles--big ole horse needles I can them--they are huge. What the clinic had said was they use needles comparable to IV needles--not true. The hole in the tip of the needle is clearly visible with the naked eye and a standard IV needle would fit inside it.
Now for me a standard IV needle is an annoying pinprick (maybe 2 of 10 on the pain scale), rising to that hurts! (5) if inserted very incompetently. The pain from a dialysis needle start at 4 (annoying but easily bearable) if the needle is inserted correctly on the first try. But often it isn't: very frequently the wiggle it around inside, often repeatedly (pain 5-7), and often repeat the insertion, which seems to add a point to the pain scale each try. At times the pain has risen to 9. Some sessions don't have these problems, but about 1 in 3 times, I go through this. BTW, there are two needles, one for outgoing and one for incoming blood. 9 on the pain scale is "bring me morphine NOW!" level of hurt.
Now the advantages of a fistula: less risk of infection and they tend to be less severe if they occurs. The clinic basically claimed that I needed to get the fistula so the catheter can be removed. "Catheters are almost certain to get infected and that infection is certain death." Those are gross exaggerations of the extra risk--it is true that catheter-borne infections are about three times as likely and about twice as likely to be lethal as fistula infections--these events are not actually common much less certain (sources: Mayo Clinic, National Kidney Foundation, ...)
So I have my thrice-weekly pain session, and I still have the catheter in, and they perform antisepsis on it every session whether it has been used of not. The need to do so seems to anger them --but some days they just can't get a good enough connection through the fistula (sometimes they give up, sometime when I'm hurting bad, I refuse continued attempts AMA). So whatever risk I have from having the catheter is still present and the risk (as well as the pain!) of the fistula is added to it.
Bottom line: I want them to stop using the fistula and revert to using the catheter (which has a pain level of 0). Legally they can't refuse to do dialysis, but they will try to find a way to punish me for defying them. I want to be sure something like getting insurance to refuse to pay isn't on the table (it probably isn't but I dare not guess). I will be calling my insurer today. Assuming they give a favorable response, I have three questions I am seeking insight about:
- When would be the best time to confront my clinic -- they are already aware that I would have refused the surgery had I known.
- How to minimize any resulting conflict.
- The possibility I could be making a mistake.