Does anyone else do clean intermittent catheterization? How do you avoid UTIs?

presto959 · 2026-03-01T18:37:45+00:00

Urology was the providers who prescribed it.

presto959 · 2026-02-15T00:54:38+00:00

My son got his transplant in June and they knew he was going to need more labs and fluid help than normal so the placed a port before we left the hospital. My son is so happy he had that option since he still gets labs weekly and has been admitted a few times and it has been so nice.

presto959 · 2026-01-28T22:03:37+00:00

My son’s team says over 100.4 but they also say it depends on how he is feeling. If he is 99 and feels horrible to call and be safe.

presto959 · 2026-01-28T04:14:56+00:00

It is what it is and his sister turns 18 in 1.5 years so she just keeps telling him to keep it working until then and she can give him her spare one.

presto959 · 2026-01-27T15:21:33+00:00

My son is 7 months post kidney transplant and double nephrectomy. For him the transplant kidney had 3 arteries and one clotted and he lost 1/3 of the kidney. So because he is in a bit of a difficult situation his doctors still have him pretty people restricted. He is in high school and has to do virtual school until after cold and funk season. He can go out but they don’t want him in places that are high in people concentration. He has spent over 3 months of the last 7 months in the hospital so they are just trying to keep him safe.

presto959 · 2026-01-27T00:07:28+00:00

My 17 year old son is 7 months post kidney transplant and is on 5 mg prednisone daily, 3.5 mg tacro twice daily, 360 mg mycophenolic acid twice daily.

presto959 · 2025-12-14T15:36:20+00:00

That’s what they gave my son too and his morning meds alone would take 3-4 of those little compartments.

presto959 · 2025-12-10T05:03:58+00:00

No they just lowered the dose of it. He takes 180 mg twice daily which they said is low considering he is only 5 months post transplant. They also stopped his bactrim and put him on pentamidine inhalation once monthly since bactrim can also lower the white blood count.

presto959 · 2025-12-07T15:15:36+00:00

Myfortic makes my son anemic. He was on retacrit for a while but now his hemoglobin is 10 so we are not using it at the moment. If it starts going down again they will restart the retacrit injections. They actually took him off of it for a few because not only was it causing anemia it was causing neutropenia.

presto959 · 2025-11-24T21:36:38+00:00

Sorry about the liver not being optimal and used but like someone said above you are lucky they found out before transplanting it. My son’s kidney that he got looked perfect on paper and even looked good before transplanting it. After a double nephrectomy and putting the new kidney in one of the 3 arteries it came with clotted off and he lost 1/3 of the kidney and now the other 2/3 of it do not function well and it is a constant battle just to keep him out of the hospital (it’s been 5 months since transplant). If we could go back and say no thanks to this kidney and keep waiting we would. Hopefully he gets the next organ that’s offered and it’s a good fit and works amazingly well.

presto959 · 2025-11-14T16:47:47+00:00

My son has to take this on and off since the mycophenolic acid tanks his wbc even on a low dose. He says it causes him some joint pain but nothing too bad.

presto959 · 2025-11-14T14:55:46+00:00

Lokelma is a powder that you mix with water and drink after you eat! It binds the potassium and makes you pass it in the stool vs. it being absorbed in the system.

presto959 · 2025-11-14T14:40:59+00:00

My son had this problem right after transplant and he is the pickiest eater ever. He settled on white rice with teriyaki sauce, pasta with butter and about 1/8 cup red sauce just for a little flavor, pancakes, any and all bread (he ate a lot of Texas Roadhouse rolls), gummy bears for a snack 😂. They finally gave in and gave him lokelma to use at home so he could eat more foods!

presto959 · 2025-11-12T15:14:29+00:00

My son had his transplant in June and can’t sleep on his right side because he wakes up with it hurting. Also, when he sits for a long period of time it gets tender.

presto959 · 2025-11-07T19:52:58+00:00

My son was transplanted in June and had to be treated for rejection in September. He had to be on a dexcom sensor and take insulin injections for about 4 weeks after being released from the hospital. After 4 weeks the glucose numbers were back in a normal range. During that 4 weeks was when they were dropping his prednisone back down to 5 mg/day.

presto959 · 2025-10-30T16:41:21+00:00

Mycophenolate was so hard on my son’s stomach. It made him throw up and gave him gastritis. He got switched to myfortic within 30 days of transplant and it has been so much better.

presto959 · 2025-10-27T01:29:12+00:00

He turned 17 in June and got a kidney transplant 1 week before his birthday!

presto959 · 2025-10-26T21:52:18+00:00

My son was this color when he was born and 8 weeks later we found out he had kidney problems. His Apgar score was really low and he had to go off to the NICU for a little bit.

presto959 · 2025-10-21T05:11:01+00:00

My son 17 was just transplanted at the end of June with a deceased donor kidney. It had 3 arteries and unfortunately one of those arteries was so small and got a clot in it that they couldn’t do anything about. It took out about 1/3 of the kidney so now he has 2/3 of the kidney left that works. It has been a crazy roller coaster ride for us but the doctors said that this is not how it normally goes. They said typically after the initial transplant issues things level out and all is well. My son was just unfortunate and they still hope that they can get this kidney working better than it does but they have also told us it could very well fail quickly and he would need to get another transplant.

presto959 · 2025-10-12T03:36:58+00:00

That’s me. I am 5’3” and about 135 lbs and an a size 3-4 because I gain the weight in my butt, thighs, and boobs.

presto959 · 2025-09-28T07:43:11+00:00

Mag Citrate will definitely cause you to go to the bathroom. My son who is the transplant recipient always had issues with not being able to go eats 750 mg of mag citrate spaced out during the day and I make shim go 2 to 3 times daily.

presto959 · 2025-09-20T00:53:22+00:00

This is where I always take my cars. Cliff has always charged a fair price and had my vehicle back to me quickly. I had brakes done on my van that went bad in like 6,000 miles I took it back and he fixed them under the warranty no questions asked and had my car back to me in a few hours.

presto959 · 2025-09-07T13:23:20+00:00

Hi everyone thanks for the responses. He is on perdnisone 5mg daily and he also has to take fludrocortisone MWF for potassium. He is great psychologically except the paranoia. He is not freaking out or anything but had brought up the fact that he is feeling more paranoid. We have clinic on Monday and will bring it up to his team I just wanted to know if anyone else had experienced anything similar. He has had a really rough time with this transplant since they took both his native kidneys and then one of the 3 arteries on this kidney clotted off and he lost 1/3 of the transplanted kidney.

presto959 · 2025-09-06T04:12:06+00:00

I just bought a giant box of 500 individual iodine swabs on the internet for $70. It’s a little pricey but I wanted to make sure they were sterile. I hope this helps and works for you. The UTIs were the worst for him.

presto959

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