Which is the best route to go? the home dialsyis or peritoneal? I'm not sure I could get Dave to sit through a session of the home and all the needle sticking. HOw much equipment do you have to have on hand? Do you have to go to a center and get your supplies or is it shipped to you? So many questions I'm sorry just need to know what is the best and what we want to do. I know no matter which way he'll have to have surgery for fistulas for the dialysis and he's not too thrilled about that either too many surgeries in his lifetime.
What causes the IgAN? He had Guillan's Berret when he was 18 years old and now I am wondering if he's had IgAN since then and it just festered slowly and now just exploded in the last year. UGH so much to digest
Vicky,
My husband Marvin and I vote for home hemo. We love it! (Marvin's history includes a little bit of all modalities over the last 14 years -- in-center hemo, PD, transplantation, and home hemo.)
I'll try to answer some of your questions about home hemo:
--supplies (like dialysate, cartridges, etc.) are shipped to us from NxStage once a month (Marvin calls in the order, and it's delivered by UPS within a week); the other things (saline, gauze, tape, alcohol wipes, gloves, etc.) we pick up from the clinic when we go for our once-a-month check-up;
--the machine itself is rather small (compared to an in-center machine) -- it's about the size of a small dorm refrigerator; the PureFlow (a holding tank for making and storing three days of dialysate) is like a small cabinet, and we put the NxStage cycler on top of the PureFlow;
--this does require some room -- we actually cleaned out a bedroom and made a mini "clinic" for Marvin -- he built a cabinet/counter for blood work and my lab space, he installed shelves on two walls for more storage, we store the bulk of his big boxes of supplies in the closet, we have several "rolling" carts with drawers for immediate access to gauze, tape, syringes, etc., and he also has a recliner and a tv in there -- we installed a small sink in this room for water/discharge purposes;
--Marvin was on in-center hemo for most of his previous time (we couldn't get a PD cath to work -- tried two -- peritonitis
), so he was having to endure the needle sticks anyway; however, we now use buttonholes, and that seems to be some easier for Marvin ("some" -- doesn't mean it's easy just a little easier);
--our 18-month-and-counting experience with home hemo has given Marvin more energy, more control over his life and his treatments, more flexibility, more independence, better labs (last month's were "perfect," according to his neph), and the allowance of more fluid intake.
Marvin, too, has IgA Nephropathy. Since his brother also has it, we were told it was hereditary.
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