Friday, December 7, 2012

April and May, 2012 - Learning about peritoneal dialysis, and some good news

This post will cover a few things from April and May of 2012.

April 11, 2012  --  Today we went to a peritoneal dialysis clinic to learn all about, well, peritoneal dialysis. Mom's travel buddy Ed and my sister Amy also came with us. I had never heard of peritoneal dialysis (PD) until it I heard it mentioned at the amyloidosis support group meetings I went to in 2010. I assume when most people hear the word "dialysis" they think of hemodialysis, which is where the patient is connected to a dialysis machine a few times per week and the machine cleans their blood as it cycles through. Peritoneal dialysis (PD), on the other hand, involves draining a fluid into the abdomen to absorb impurities through the wall of the peritoneum, then this "dirty" fluid is drained out of the abdomen. This process is repeated as often as necessary, depending on the needs of the patient. The patient does this at home either doing several of these fluid exchanges during the day, or having a machine do the exchanges automatically overnight. It's easy enough to find out more about peritoneal dialysis on the internet, so I won't get into too many more details here.

They first had us watch a 15 to 20 minute video about peritoneal dialysis, then a nurse walked us through the basic process of doing the manual exchanges and answered whatever questions we had, especially regarding travel while on PD. It's a bit of work on the part of the patient (traveling or not), but the clinic trains the patient before they start doing it at home. The supplies, including the dialysis fluid, are delivered to the patient's home. The biggest aha moment for us was when they showed us about a month's worth of supplies of the fluid. Thank goodness the delivery person will stack it wherever you want inside your house, because it looks like a month's worth of fluid boxes will take up close to half of Mom's closet.

We didn't learn anything at the PD clinic to steer us away from peritoneal dialysis and consider hemodialysis instead, and the people at the clinic also strongly recommended PD over hemo. So Mom will let Dr. V's office know and they'll have Mom see a surgeon to discuss inserting the PD catheter in the abdomen.

May 16, 2012  --  We found out today that my sister Amy does not have the mutation for fibrinogen amyloidosis, so that's finally some good news, especially since she has two children. (People will sometimes shorten the word "amyloidosis" to "amy." So now we can say Amy does not have amy.) My other sister has not yet been tested.

May 21, 2012  --  Mom's application for a kidney transplant was not rejected, so the next step was to meet with a doctor for a brief exam and consultation. I went with her to this appointment. I think he talked about the surgery itself and what to expect post-transplant. I don't recall anything else significant from this appointment that is worth going into here. I believe the way we left this appointment was that he would present his report to the transplant committee and they would decide whether or not to proceed with the full evaluation.

Remember the Resources Page I added way back on November 20? At the time I thought the first section would have maybe 10 journal articles related to fibrinogen amyloidosis. Well, since then I have started looking at the references at the end of the articles I already have, pulling up some of those articles, looking at their references, etc. So now there are 16 articles listed on the Resources Page, and I have 19 more in my list for a total of 35. (13 of those I haven't found copies of yet.) They don't all deal primarily with fibrinogen amyloidosis, as some go back to before the fibrinogen mutation was discovered, but they're all related in some way to either the history, diagnosis, or treatment of it.

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