September 13 Update on Minga: Options Narrowing

Lily and her cousin Jennifer made the trek to Aguadulce — a three hour trip from Panama City for Lily — to see if they could get an honest read on whether Minga might find an ambulatory dialysis spot there or in Penonome. Both places are in Cocle province, so the same Seguro Social administers the public health care system and oversees who gets access to ambulatory dialysis.

They were fortunate to find the social worker who helped the Bustavino family when Lily’s other grandmother died. The woman was compassionate and brutally honest. The public health system throughout the country, and especially in Cocle province, is totally overwhelmed by the number of people who need dialysis. There is no spot for Minga in either Aguadulce or Penonome, and won’t be in the foreseeable future. Home dialysis is an option, but it would have to start with a manual process — there is a shortage of dialysis machines, and Minga can’t get one until December at the earliest. The Seguro Social can teach the family to do this manual procedure; it’s the best they can offer.

I have no idea what “manual procedure” means, but it sounds even more daunting than having the machine that goes Beep in the night.

I asked Lily if staying in Panama City and being treated there is a certain option, even if Minga does want to return home. Lily said they won’t know until Minga sees the nephrologist — whoever is on duty when her treatment review is scheduled, not necessarily the kind Dr. Felipe. Apparently, her spot in ambulatory dialysis in Panama City is considered transitional — not a certainty at all — because she is not a resident of the city.

Meanwhile, Minga believes that God will grant her a miracle and that she can return home and leave dialysis behind. Someone told her that a patient sicker than she had just that miracle: kidneys that started working again. Minga believes that God will know all that she has gone through in her life, and be no less kind to her.

This is when faith gets hard for those who really believe.

The options are rapidly narrowing, and the path forward seems more and more perilous.

4 thoughts on “September 13 Update on Minga: Options Narrowing

  1. Actually, “manual” dialysis might be the best option for Minga if the family thinks she can be relied on to set herself up 3 or 4 times a day. Robert did the manual dialysis for times inbetween hemo and home. For someone like Minga who sits a great deal of the day already, it might work perfectly. Basically she would have to have an IV pole, hang a bag of fluid, connect a tube/drain bag accessory to herself and the bag and then sit until the bag drains in and then open a valve to let it drain out. It usually took Robert around an hour or so. Obviously, the real threat is with infection because every time you do this, you need to have a mask, use alcohol pads to clean the connections, use anti-bacterial on your hands and no animals around. It works fine but for an active person, overnight with the machine is much better. Has anyone talked about the fact that to do home dialysis either way requires a surgery that puts a catheter in her abdomen? And then you can’t use it for up to three weeks or more so she would need the clinic visits for probably another month at least. I wish them the best figuring all this out – it’s not easy in America believe me!!

  2. The lack of services, equipment, and good medical care in rural Panama is frustrating to me; it must be ten times that for Minga and her family. Is there any way to persuade her to stay in PC for dialysis? God can’t always do miracles!

  3. for Dawn: I was going to call and ask if you know what this is. Minga does sit a good bit, and is pretty home bound now anyway.She wouldn’t be able to set herself up, but one of them could do it, with a backup of a second family member trained to fill in. They are still not clear on who that might be.They have talked about the surgery — are waiting for a final decision on what kind of dialysis she is going to get before putting in the more permanent catheter. Evidently what she has now is temporary in any case. So complicated. I think the issue of infection is huge, although apparently any number of rural people are on this manual dialysis and manage to pull it off.

  4. for Phyllis: I think first they have to ascertain whether a spot in Panama can be made permanently available to her. So far that’s not at all clear. If that’s her only option to stay alive, I imagine she’ll do it. But she really, really wants to go home.

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