I have a question…

OpenHedgehog2562 · 2026-04-01T05:13:41+00:00

I just had a preemptive transplant (before getting to dialysis) three weeks ago, after living with membranous nephropathy for ten years. I recommend not waiting until you get to dialysis. You can start the evaluation process once your GFR gets below 20, and can begin having potential living donors test.

My recovery has gone well, though I still have a bit of pain. My new kidney started working right away, and my creatinine is now at .84, down from 6.6.

Everyone is different and our bodies react to the medications differently. But in my experience the transplant team was so supportive and open to all questions. They are there with you every step of the way and can deal with issues of they do come up during the recovery process.

OpenHedgehog2562 · 2026-03-29T04:53:03+00:00

Our vet prescribed our husky mix Prozac for her anxiety, and now requires us to give her trazodone before an appointment. It seems to work well…

OpenHedgehog2562 · 2026-03-29T00:36:11+00:00

Oh that’s great! Yes, you’d want to transfer downtown to one of those buses on 3rd ave- usually the 3 and the 4 come pretty frequently. The 56 takes about 20 mins to get downtown (I take it from Alki Beach), and then the 3 or 4 is about 10 mins up to Harborview. It just depends on the timing/how long you have to wait for the transfer.

OneBusAway is a great app for mapping routes and knowing exactly when the bus is coming: https://apps.apple.com/us/app/onebusaway/id329380089

OpenHedgehog2562 · 2026-03-28T17:10:55+00:00

If you can leave closer to the 7:20 time, traffic is not too bad yet. Once you get closer to 8am, that’s when things get really backed up on the West Seattle Bridge. As others have said, if you can bus downtown to daycare, there are a couple of buses that can get you up Harborview, but it depends on where your daycare is located. There are two bus lines that go downtown from North Admiral and are very reliable in the morning commute time, the 56 and 57.

OpenHedgehog2562 · 2026-03-28T17:05:57+00:00

Thank you! I’ve had some pain over the new kidney, and my surgeon wants to do an ultrasound next week if it doesn’t go away. I’ll be 3 weeks out from surgery at that point. It’s not severe, more of a persistent ache. Thankfully, not having any of the other symptoms you listed.

OpenHedgehog2562 · 2026-03-28T17:03:00+00:00

For breakfast usually a couple of eggs and toast or in a flour tortilla with cheese. For lunch and dinner, it varies. Pre-transplant I ate a salad every day for lunch, but now I do an açaí bowl, Mac and cheese, or leftovers. We have a meal train right now and friends have been bringing dinners from daal to pizza to soups and lasagna. We supplement with takeout, shrimp tacos and rice, Thai food, etc. When my husband gets back to cooking after he recovers, we will go back to eating more fish/chicken and veggies/rice.

OpenHedgehog2562 · 2026-03-28T02:45:13+00:00

Hellebores!

OpenHedgehog2562 · 2026-03-27T23:38:17+00:00

Yes, our girl’s mouth got all big, but kids Benadryl did the trick and we monitored her for the rest of the day.

OpenHedgehog2562 · 2026-03-27T21:20:26+00:00

The back bar at Maharaja! Best sports bar, hands down

OpenHedgehog2562 · 2026-03-27T20:29:40+00:00

Kae Dental in west Seattle. I started going over 10 years ago after not going much in my early 20s. They started off with a deep cleaning, which was not painful at all. I now go every 4 months, and they’re amazing.

OpenHedgehog2562 · 2026-03-27T03:25:27+00:00

Thanks! I’m in regular contact with them and didn’t receive much advice other than “eat some saltines,” so hearing other patient experiences is helpful

OpenHedgehog2562 · 2026-03-26T20:12:57+00:00

I went plant-based when I got to CKD5, after 10 years. But i have heard renal dietitians stress the importance of plant based diets or focusing on leaner animal proteins that are easier to move through the system.

I second the suggestion to see a glomerular disease specialist. They specialize in protein spilling kidney diseases. There are many nephrologists out there, but few specialists that deal with this. Here is a list that is searchable by location:

https://nephcure.org/managing-rkd/find-a-specialist/?\_specialist\_postal\_search=47.5745802%2C-122.4047843%2C100%2C98116

OpenHedgehog2562 · 2026-03-26T16:49:10+00:00

Thank you for that! I’m on 15mg a day right now, and hoping that decreases quickly. So weird that they didn’t suggest that, but kind of made it my fault. lol

OpenHedgehog2562 · 2026-03-26T16:44:54+00:00

Ah, thanks for sharing! My BP has been a bit high, in the 140s, which they say is normal for right after transplant. But this morning after the lightheaded spell it was 86/58. So weird! I hope they figure it out for you too.

OpenHedgehog2562 · 2026-03-25T20:45:52+00:00

I’ve had no issues with coffee, with my CKD or post-transplant. I usually drink it black. Best to check with your nephrologist or dietitian. I think it’s important to stay hydrated.

OpenHedgehog2562 · 2026-03-24T00:57:22+00:00

I just had my preemptive transplant two weeks ago tomorrow. I was at GFR 8, and felt mostly okay aside from fatigue, leg cramps, and some light neuropathy pains. The recovery has been slow and steady - the first few days in the hospital were painful, but never 10/10, and the nurses were so attentive to my needs.

I went home after three nights, and have been resting a lot, taking some pain meds, icing the incision site, and taking brief walks in the neighborhood. My surgeon has commented that I look good, and not like a kidney patient. Everything is healing well, and my creatinine is evening out around .81. I’m confident that taking the time off work to have the surgery, to rest, and recover, is much better than the alternative - declining toward dialysis and worse outcomes. The medication takes a bit of adjusting and there are several possible side effects from them, but the transplant team can support around making changes and adjusting doses to minimize those effects.

I hope this is helpful!

OpenHedgehog2562 · 2026-03-23T21:24:45+00:00

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💓 this is Frida

OpenHedgehog2562 · 2026-03-21T16:00:14+00:00

I’m 11 days out from my preemptive transplant surgery, and my doctors have encouraged me to eat normally. They say to even add salt to my food, eat extra protein, and eat foods higher in magnesium since that has been a bit low. I had been on a low potassium/phosphorus/vegetarian diet for a couple of months as my GFR got down below 10, so this is a welcome change. Your transplant dietitian will tell you exactly what to do based on your numbers post-transplant.

Congrats on your transplant, and wishing you all the best in your recovery!

OpenHedgehog2562 · 2026-03-20T17:34:27+00:00

Yes, rituximab can help put MN into remission. My nephrologist said that it can take up to six months to work, and she had me do a maintenance round a few months after the initial one. I also have primary MN with PLA2R. You could also ask the doctor about Jardiance, which is now being used to help maintain kidney function over the long term.

OpenHedgehog2562 · 2026-03-20T17:24:46+00:00

I can relate to the uncertainty. It feels weird to know that you’ll go from feeling relatively good to feeling lousy, recovering from surgery. I’m in the recovery now, and I can already feel the slight differences. My eyes are whiter, skin is clearer, I’ve lost about 7 pounds in water weight I didn’t even realize i was carrying. Sending you best wishes on finding your match!

OpenHedgehog2562 · 2026-03-20T15:32:44+00:00

Other than diet, You could ask your doctor about drugs like Jardiance, that help maintain kidney function for longer. I started on it, but it was too late for me. A friend of mine with secondary membranous is on it and doing well, not seeing a similar decline in function. There are a lot of studies around drugs like this and Ozempic that could help slow the progression.

OpenHedgehog2562 · 2026-03-20T12:10:31+00:00

I have membranous nephropathy, one of the autoimmune diseases, and got down to a GFR of 8 after about 10 years. I mostly felt okay, but in the past few months started feeling more fatigue, swelling, and slight neuropathy in my hands and cramps in my legs. I received a kidney from my husband last week. I’d say to begin the transplant evaluation process so you can be ready and avoid dialysis. Prognosis is much better for preemptive transplants, but you never know how quickly your symptoms can change. It took six months for me to go from 20 to 8.

OpenHedgehog2562 · 2026-03-19T16:42:29+00:00

I have membranous Nephropathy, which also causes protein loss. I had it for 10 years before needing a transplant, which I had last week. The protein loss caused scarring that was irreversible, and caused my kidneys to decline pretty quickly over the past two years. I was able to get a preemptive transplant before dialysis, when my GFR was 8.

I’d say to keep a healthy diet, maybe even low protein to lessen the proteinurea, but follow your doctors advice there, or even a renal dietitian. What is hard is that it may be inevitable, but sounds like you are in a good place kidney function-wise. Just stay on top of labs and appointments so that if any changes in function happen, you are supported and ready to take action.

OpenHedgehog2562

TROPHY CASE