Mom, June

[helwen]

Didn't want to write about this until I had more info, but some of it will be a while in coming.

The night of February 21, my mom called to talk about her latest doctor visit (nephrologist), and let me know that her kidney function was at 14%. Total failure is at 10%. Brothers got to know over the span of about a week or two, so she could get up energy for each conversation, I expect. There was a lot of conflicting information going on between different medical specialists, which is why I'm not posting this until now.

Lots of drama over getting a person to go to appts. with her (the drama queen being a friend of my mother's who basically was having control and self-esteem issues), lots of tests, including an ultrasound to determine what type of shunt she can have for dialysis. Veins are too small for the newer, smaller ones, so she'll be getting a graft tube, which has a 50% chance of rejection after the first year and then has to be replaced, among other possible complications. Also a longer recovery time from the procedure to get it put in than for the smaller one, before treatment can begin.

Some sources say patients have more energy after treatments, some less. Lifespan on dialysis depends on the individual and his/her outlook and how well he/she does on eating well, etc., but ranges from 2 to 5 years. And of course it completely changes one's life because dialysis is 3 times per week. Treatments will probably last about 3 hours per session, as she is a petite person. We are not predicting the upper range, certainly not until she has gone through the surgery and started treatment so that we have more data points.

She is currently planning for 2-3 years, and accordingly I'll be flying to CA in June for two weeks. She's been working on organizing things, donations, etc., as well as handling a few book sales from her book. Yes, did I forget to post that she finished the book and it's published? So that's one less time/energy suck. I'll be going through some things with her and bringing some small stuff home with me, as well as doing some lifting for her. Don't worry, heavy-lifting for my mom is generally boxes that weigh no more than 20 lbs. Her birthday is in June, so we'll have a nice little family gathering as well.

So, the more can be done this year, the more free time she has for more important things that sorting through stuff. She is still hoping to come back East in the autumn for a last visit; we'll see if that works out. She has a few other health issues like a hip that needs replacing (not likely now), which have kept her from traveling for a while. Next year, if she's doing not-so-great, she wants me to come out again, and then one more time for the funeral. We'll see how that all goes, too.

My flight departs for CA on June 5 and returns on June 19.

That's all I've got at this point, aside from that she seems to be handling it pretty well at the moment. Oh, and I sent her more stinging nettles, which she is now taking daily. It helps remove uric acid from the blood, which should help until she finally gets onto dialysis, probably sometime in May.

Comments

[oakmouse]

So sorry! *hugs* One of the things my rat fink brother brought about for himself by self-neglect was kidney failure (although we don't know yet if it's permanent or temporary). It's a really hard row to hoe, especially for someone who has a lot to live for. I hope your mom does well on dialysis and has longer than average.

*more hugs*

[helwen.livejournal.com]

Thank you. Well, it's probably fortunate(?) that she sometimes suffers from gout, and at least knew that her kidney function has been decreasing over time, otherwise I wouldn't have sent her the stinging nettles last year. Trying to get her to take enough of it was the challenge, but I think we're past that finally. And I have to remind her once in a while that the gout diet doesn't mean no salmon/nuts/whatever healthy protein food, it means make sure that's only 30% of the meal and make up the balance with neutral/good non-gout-inducing foods like greens. Fortunately she's always liked the good stuff. Her major challenges are actually acquiring the food, which situation has been steadily improving, and um... potato chips.

Oh, and misinformation... yes dark chocolate is good for you, but no more than 2 oz. per day! Usually she doesn't have a lot of chocolate, but apparently it's good for your brain or something, so she had extra before a recent presentation she was making, to make sure she would be sharp and on top of things!

She does still have her sense of humor, which definitely counts for something.

*hugs back*

[oakmouse]

Potato chips and soda pop are common problem foods for kidney patients, according to what I've seen in the nursing home industry and heard from nurse friends. They're so tasty and cheap and easy to buy.

A sense of humor will stand her in tremendously good stead, so very glad she's got that fighting for her!

[helwen.livejournal.com]

Fortunately she doesn't drink soda, and at least for juice she usually gets it with the pulp. I'd rather she just ate the fruit, of course, but if you can't get out to shop regularly, it's a fallback food.

I'm kind of irritated at the recommendations for clear foods for the day before a colonoscopy, which are basically clear broth and sugar in various forms. I suppose that makes sense, since proteins and fats are off the list but... ew. Oh, and clear, non-citrus fruit juices... I think I'll just be under-caloried today...

[oakmouse]

Yeah, the whole pre-colonoscopy thing is kind of ridic; what do diabetics do, for pete's sake?

Hope the test goes ok and isn't too obnoxious!

[helwen.livejournal.com]

Thanks, test went great, or so they tell me -- slept through the whole thing :D The doc did want me to consider a sleep study though (snoring). One thing at a time...

[oakmouse]

Yeah, snoring seems to be the latest "ZOMG PEOPLE COULD DIE FROM THIS (actually totally harmless thing we can make money from)!!!!" medical frenzy on the way in. They need to tell it to the Marines --- or more precisely, tell it to my ex-Marine dad who is almost 91 and has had bad snoring and sleep apnea since his teens. *g*

[helwen.livejournal.com]

LOL Thanks, needed this!

[oakmouse]

Hee! You're welcome.

[loosecanon.livejournal.com]

something that works: one *may* eat small portions of high-phosphur foods while attached to the machine, so bananas and the like are prohibited, but not utterly.

all good thoughts.

[harpnfiddle.livejournal.com]

As we found with my father's many illnesses, there is not necessarily a steady decline - it is likely to have some very good times, with some drops in function, and then some increases before the final decline. Take advantage of the good times.

[helwen.livejournal.com]

Good to know. I kind of suspected it might be like that. I can't say I was entirely surprised when she called, although I didn't know what would be specifically at issue for her -- we talk on the phone every week, so I could hear the changes over time. Useful, as sometimes if I really didn't like what I was getting from her I would poke and question to see if she'd fallen behind in some of her care maintenance. She has friends in her community and my brothers visit on holidays and one comes to do computer and accounting stuff as well, but nobody living with her in her home. She finally got a cell phone to carry around with her.

I hear you on the illnesses -- at the moment for her it's threat of gout, kidney function, high blood pressure, and arthritis. Then there are the infirmities, which can make taking care of the rest of it a challenge, but she has a pretty good system -- very organized, my mom. And her friend has got things sorted out and is very much on-board now. So, we'll all do what we can, in whatever time is allotted.

[helwen.livejournal.com]

Thanks for the info, and the good thoughts.

[shalmestere.livejournal.com]

Good luck!

[helwen.livejournal.com]

Thanks!

[bunnyjadwiga.livejournal.com]

*moral support*

[helwen.livejournal.com]

Thank you, much appreciated.

[kellan_the_tabby]

*offers hugs*

[helwen.livejournal.com]

Thank you.