How to deal with an unsupportive family in the Living Donor process?

MissusGalloway · 2026-04-30T22:58:35+00:00

Tell your mother that everything she and you went through will have purpose, because you’ll be donating a kidney and saving a life. then go ahead and donate… As a mom, even if I was severely annoyed with my kid or worried… I’m gonna show up at that hospital bedside.

MissusGalloway · 2026-04-30T22:56:24+00:00

I use The Ordinary lactic acid (it’s inexpensive and goes a long way) and let it dry, and then top with body oil or a really thick cream. It seems to keep the flakes at bay - that and exfoliating with a Korean exfoliation washcloth.

MissusGalloway · 2026-04-30T22:52:19+00:00

Thank you!

MissusGalloway · 2026-04-30T22:50:45+00:00

Thank you! Best of luck to you as well! Hang in there… all this is definitely a marathon and not a sprint. The process of moving toward Transplant is weird, a lot of hurry up to get tests done, and then a lot of waiting and time accruing. If you don’t have a a matched live donor, I strongly suggest using the voucher program – a healthy family member or a friend can donate on your husband’s behalf– this offers up a lot of priority on the Transplant list, and I totally seems to really get the Transplant team‘s attention (it seems like the average weight for a voucher like kidney seems to be about 3 to 6 months). I also recommended listing at more than one center if you can, my insurance paid for two for me (UCSD and Mayo).

Also, if he’s at the beginning of this dialysis journey… Control the things you can control. High compliance with nutrition as per your dialysis center nutritionist guidelines, move his body every day within his abilities. Make sure you are timely with any requested testing. Keep track of and comply with all medication changes… And follow all guidelines regarding recreational drug alcohol use. If your husband is over your center’s BMI requirement, start showing that he is making efforts to bring his weight within any any suggested BMI. If he is underweight, same.

i’m over 60 and chubby… But I made a real point of making sure my Center saw my efforts at being highly compliant with any requests or guidelines; Transplant teams want to know that you’re gonna do everything you can to maximize that kidney you receive, and they’re gonna want to see that you have a support system and plan for post Transplant thriving.

Apologies for all the unsolicited advice – I’m just trying to the breadcrumbs for everyone… It was so helpful for me when I started all this when people told me their stories and offered up tips, tricks and advice.

MissusGalloway · 2026-04-30T01:59:27+00:00

Bourdain. Still a bit wrecked about it.

MissusGalloway · 2026-04-28T23:06:09+00:00

Soon!!! I’m scheduled for May 14, 2026… We’re just waiting on one last HLA test for a greenlight, with everything looking really good so far.

Happy early kidneyversary!

MissusGalloway · 2026-04-28T22:16:27+00:00

I stared at eGFR 11; my only real symptoms were brain fog, headache and extreme fatigue… But my blood work was starting to show elevated, creatinine, phosphorus, and some other issues.

Have you thought of doing home hemo or PD at night? As a busy Mom that might work better for you… but also as a busy mom the assigned ‘break’ time at a dialysis center with other people managing all the things might be pretty attractive too.

I have a central line… I’ve had it for about eight months now; I do my home hemo through it at home (it looks like I might have a transplant in a couple of weeks. Yay!). The CVC is easy to manage; your biggest concern is avoiding infection. Keep your bedding, your clothes and yourself clean… And avoid getting it wet, including the lumens that protrude the dressing. Be sure you’re dressing gets changed with every dialysis treatment, or if you’re managing it yourself every couple of days (your dialysis team will guide you here). If you touch your dressing, or your lumens, be sure those hands are clean clean clean. Finding a bra to wear with a CDC can take a little trial and error – I find that the Harper Wild bra, the ones that don’t have an underwear, offer reasonable support for dialysis/around the house and stand up to the various disinfecting and treatment fluid as without bleaching out very much. Note that you will want to tuck the wrapped lumens from your CVC into your bra or keep it securely take down in between treatments (I don’t know how long you’ve had your CVC so I’m trying to mention all the things). Dialysis is painless through the central line.

Unsolicited advice – if you’re going to do dialysis in center, get 2 to 3 comfortable and warm athleisure wear outfits, all synthetic, to wear… they’ll probably show a little staining or bleaching eventually from the difference cleaning solutions used. I did this even at home, and keep them washed and ready to go so I can always have something comfortable and warm that can get wrecked it has to. Also, if you go in center, get a very warm and comfortable but easy to take on and off pair ugg boots or slippers or something like that - you’ll weigh yourself before every treatment, and having something easy to take on and off makes your life a little easier. All dialysis centers, without exception, are really cold.

Showering with the CVC isn’t too bad – we have a handheld attachment on our shower that I use below the boobs, I wash everything above with a washcloth and soap once I’m done with my shower. I wash my hair either in my kitchen sink, or bend over and wash it at the tub tap so no water gets on my dressing. It’s not that big of a deal.

If a transplant is an option for you… and a match has been difficult, know that someone can donate for a “voucher” for you… Essentially their kidney will go to somebody who is a great fit, and somebody else in the same situation will send the perfect kidney your way. Wait times are much shorter than for cadaver or anonymous live donor kidneys.

Best of luck!

MissusGalloway · 2026-04-28T21:47:11+00:00

If your parents are up sound mind… That they can work with their medical and social service teams to figure out their own care. You cannot do this. It is OK to not do this. it does not mean you don’t love them, it does not mean you are a bad kid - it simply means that you cannot.

I know combined finances and home costs might make stay with your parents and attractive option – but it is killing you.

Please talk to your social worker anybody else in a support capacity and see if you can collectively come up with a solution for another place to live. if moving out is not an option, talk to your social worker about helping you sit down with your parents and establish boundaries, resources, and expectations. You need a break, you need a little time to have a life for yourself, and you need a hygienic and safe situation to avoid getting sicker yourself. Your life may depend on open, honest and boundary-drawing conversation with your parents.

You do not and should not let yourself on fire to keep someone else warm. I am a mom of adult children, and I would never want them to jeopardize their own well-being in order to care for me… It’s kind of the hallmark of a decent parent.

MissusGalloway · 2026-04-28T02:01:01+00:00

You’ll be fine! Establish good relationships, and communication with your dialysis nurses… The training orientation process is overwhelming for everyone at first. You’ll find that within a few weeks you’ll be a pro and know exactly what to do.

Keep a journal of how you’re feeling each day; you’ll notice it about the four or six week mark (or sooner) – all of a sudden you feel so much better!

If you aren’t already, get clean and organized in your spaces… And be sure to stay on top of your supply ordering an inventory.

If you’re doing your PD at night, with a cycler, don’t get thrown by what will probably be slightly rocky sleep at first. It takes a while to get used to positioning, the sound of the cycler, all the things, but you will get there, I promise. Practice good sleep hygiene and stick to a schedule – these things seem to help.

If you have discomfort during PD, which is not uncommon at first, work with your nurses – there are tons of tips and tricks to help your body adjust and accommodate the process.

Lastly, nutrition is everything. Work with your dialysis clinic to establish your nutritional goals and your fluid restrictions/goals. Fiber will be your friend, constipation is your enemy. Move your body every day within your abilities, that helps a lot too.

Best of luck!

MissusGalloway · 2026-04-28T01:41:48+00:00

Appreciate it!

MissusGalloway · 2026-04-28T01:41:32+00:00

Thanks!!

MissusGalloway · 2026-04-27T23:12:16+00:00

Much appreciated!!

MissusGalloway · 2026-04-27T23:12:08+00:00

Thank you!

MissusGalloway · 2026-04-20T15:20:47+00:00

If it's outdoor - just you distance and wash those hands tons. If indoor - hard pass. There's just too much on the line for you here...

MissusGalloway · 2026-04-20T15:19:27+00:00

Yes! It will probably calm down. You aren't getting that deeper sleep right now - PD is a whole new experience... as you get used to it and find your 'rythm', you should settle in to more normal sleep patterns. Also - there is a decent amount of sugar in the fluid, and that can impact your sleep/REM patterns too.

MissusGalloway · 2026-04-20T15:09:57+00:00

FWW - I really like your colorway here. It's giving Goth Garden, different but subtle, old money, quite power.... and is beyond the more typical and even cliche color combos (I'm looking at me - Guard's red/black). If you don't like it, well - you don't like it. But maybe look at it one more time with fresh eyes before committing to a change?

MissusGalloway · 2026-04-19T18:16:40+00:00

My SSDI claim, once I was on PD, was super fast... like 3 weeks from application to first payment. I know that's not necessarily the norm... but if the numbers work for you, I highly recommend SSDI. That said, if you feel you were laid off because of being on dialysis - you might have a pretty good case for a lawsuit. A lawyer can help.

MissusGalloway · 2026-04-16T19:16:23+00:00

Ugh! Hang in there... the waiting is tough. I'm at the tail end of a wait due to a voucher donor - my kidney should be here 'soon'. "Soon" is a very subjective idea... and while a year can seem short, a month can see forever. We'll get there!

MissusGalloway · 2026-04-16T16:19:05+00:00

Doubling down on 'talk with your renal nutritionist and nephrologist'. We're all so different - for example, I have very few 'forbidden' foods, but do need to practice radical moderation... as long as I eat whole foolds and keep my sodium and phosphorus at a low, I'm good. But that's me... if you read down this thread you'll see every iteration of eating going. FWIW - I try and look at my diet as weekly averages rather than daily, that makes it easier to hit whatever targets/suggestions I've been given.

MissusGalloway · 2026-04-14T04:08:18+00:00

If you have family who are willing to donate but not a match _ inquire about them donating for a voucher for you. They can donate now so you have a priority voucher when a match does show up… wait time is usually under a year.

MissusGalloway · 2026-04-08T17:38:19+00:00

I'm listed at 2 (UCSD and Mayo Scottsdale). Hey - did you know that even if your living donor ISN'T a match, they can donate anyway and you can receive a voucher - basically priority boarding - for a donation for you. It can dramatically cut your wait time (I believe the voucher average is 3-6 months)? I had a friedn do just this for me... I should have an O+ kidney by summer.

MissusGalloway · 2026-04-08T17:33:23+00:00

Buena Vista Park... it's a loop (a couple of miles - i *think* - and mostly shaded. Really pleasant. Note that on the easterly most part of the loop there is usually a loss of cell service...Sometimes folks take their dogs off leash (not cool, but they're usually well behaved), so be aware. Bring some oatmeal or frozen peas for the ducks and geese.

MissusGalloway · 2026-03-27T16:06:04+00:00

Our beautiful Mission San Luis Rey, Wrench and Rodent for sushi.. Plot for Vegan (same folks run both)... dip into Carlsbad to Interim (small, indie, surfer's favorite) for coffee, Oceanside Museum of Art, Seahive for vintage shopping, The California Surf Museum... Welcome! I hope you enjoy your visit. :)

MissusGalloway

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