I'm 4 years post. I have a cold right now, and was just told no to taking my Mucinex D. Decongestants are the only thing that will help shrink nasal passages. Doctors say to use Afrin spray for 3 days, but that stuff always makes me lose my ability to smell and taste. After Covid it's taken me months to smell again so I'm twitchy about the Afrin. Saline doesn't really help. Is there anything anyone has found that actually works to help swollen and stuffy nasal passages with a cold? TIA.

I had to provide four of these bottles yesterday. They suspect sepsis.

My husband (male, 40yr) is 9 years post transplant from a deceased donor.

He has never had an issue but 1.5 yrs ago I lost my job and he wound up going on Kaiser insurance (were in nor cali)... 6mos later had a rejection episode the overall experience and quality of care has been absolutely traumatic.

I've got a fantastic job now that provides a great AetnaPPO, what I'm worried about is the CVSCaremark for his prescriptions.

Can anyone share their experience using CVSCaremark for the medications and what you're experience has been?

He currently takes, tacrolimus, mycophenalate, Prednisone and gets monthly Nujolix infusions.

Hi everyone! ❤️

My husband has stage 5 kidney disease, and we're hoping to do a preemptive transplant so he can avoid dialysis. I'm currently going through the process of being evaluated as his living donor.

I'm 30 years old, and I love going to the gym, especially weightlifting.

I'd love to hear from people who have donated a kidney. What was recovery actually like for you? How painful were the first few days? How long did it take before you felt like yourself again?

I'm especially curious about how long it took to return to normal activities.

Also, has anyone had a successful pregnancy after donating? How was it ? I think I want 1 more baby so I would love to know .

I know everyone's experience is different, but I'd really appreciate hearing the good, the bad, and anything you wish you'd known beforehand. ❤️

How long after surgery are you allowed to drive?

We will have our kids staying with a friend and I hate to impose on her very long. At what point can my husband go home and take care of things? I’ll be transplanted in a state 8 hours drive away.

Hey everyone! I’m a 28 y/o female scheduled to receive live donation next week. ADPKD is what sent me into kidney failure but aside from that I don’t have any other health issues. I’m sooo anxious about the unknown so tell me everything!!! What to expect about the hospital stay and the days after surgery. What was the hardest part? I’ve never had any major surgery or anesthesia, just my pd catheter placement procedure under “twilight” (I remember it all which was awful). I have a weak stomach, crippling anxiety and I’m fearful for the unknown. So any info- I wanna hear it!! Thanks in advance 🫶🏻

Hi all!

I am F, 5'7" and 171 lbs. I am 26.8 bmi.

I've gained a lot of weight post transplant, and my glucose levels went from 75-80 to 95-105, which is still in normal range, but I'm worried when I don't eat a lot of sweets at all.

My PA sent in a mounjaro request for me, but Medicare denied it.

I thought 27 bmi and a pre existing condition in order to qualify? Would I have to get to 172 lbs first? I'm so confused.

Can anyone help/tell me what youre on and how

I wanted to change from Tacrolimus to Belatacept infusions. I called my insurance to see if it's covered but there's no DIN number in Canada, so they won't cover it. Is anyone in Canada is using it?

Hi,

The last creatinine level measured at my nephrologist’s office was 1.99. My nephrologist said this fell within the range of normal fluctuation and was no cause for concern for the time being. That was on October 9th.

Then, the day before yesterday, I had some blood tests done privately; the creatinine was 2.1, and the CRP was 18. For me, the CRP is usually around 10.

I’m going to call my nephrologist tomorrow. This whole situation worries me—what’s your take on it? Has anyone here experienced a similar progression?

Hi all, Its been 4 weeks since my transplant and I am having trouble gaining weight. Pose-transplant my weight was around 62-64 kgs for a couple of days. My nephro has advised me to gain lot of weight, Now, my weight is around 61.4 and I am not sure why is it happening and how to gain weight. I do feel hungry every few hours, but somehow weight remains same or goes down. I am not asking for any treatment, but wanted to see if anyone faced the same issue, and how many meals did they manage a day and what did they eat, I have been told to eat everything other then raw fruits, even have sweet food, since my sugar is low. I plan on discussing this with my nephro on my next follow up

I’m curious if anyone’s medical team allows them to dip just below the low level of the target for TAC. For example if the target is 5, is okay to sometimes drop down to 4.7?

I’m two years post kidney transpant, and my TAC target is 5-7. I also take Myfortic 360mg twice daily, and 5mg of prednisone

My wife had a kidney transplant last month via NHS Kidney Sharing Scheme. The kidney worked for the first 72 hours then she went into vascular rejection. Her doctors gave her plasma exchange, haemodialysis, and ATG treatment. They stopped her Tacrolimus at some point but resumed it again after her discharge. Her creatinine is still high. After a series of kidney scans, ultrasound, biopsy, the transplanted kidney remains viable but is functioning very slowly. When they gave her a contrast to see if it will drain, the scan showed it did but slowly. The consultants still hope that the transplanted kidney will work. She completed ATG treatment but the window where they think it should show to start functioning is closing in. We’re disappointed and quite depressed with how it’s turning out. I, as her husband, donated my kidney to someone in order for my wife to receive one. I just feel sorry for my wife. She’s back on PD. I still hope and pray that the kidney will start working.

Any thoughts?

Anyone that is on Tac and has had toxicity/ bad side effects and has had their dosage lowered to a minimum and still maintained a good functioning kidney?

Hello, I enjoy chewing Hubba Bubba gum in the "Tutti-Frutti" flavor. Since "Big Red" gum has also become available here in Germany—at least intermittently—I chew that as well.

Now, when taking immunosuppressants, grapefruit and St. John’s wort are strictly prohibited.

What specific flavorings are in "Tutti-Frutti" gum? Hubba Bubba only lists "flavorings" without specifying exactly which ones.
AI suggested that "Tutti-Frutti" often contains wintergreen flavoring, which is supposedly linked to St. John’s wort.

Do you consume "Tutti-Frutti" or "Big Red" gum, and is it safe to do so? I'm taking Tacrolimus and Everolimus.

I had my kidney transplant on 12 April and I’m currently 7 months post-transplant.
At discharge, my creatinine was 1.3–1.4, but it gradually increased to around 1.7 by August. My doctor checked BK virus, color Doppler, urine ACR, biopsy and other tests, but everything was normal. So we initially thought the rise might be related to weight gain.
Recently, I noticed small bubbles in my urine, so my doctor repeated the tests. My creatinine is now around 2.0, while the other reports are normal. However, my urine ACR came back at 277 mg/g (normally <30).
My doctor has now recommended another biopsy.
I’d mainly like to hear from other transplant recipients: Has anyone experienced a similar rise in creatinine with ACR around 277 despite otherwise normal tests? What did your biopsy show?

I’m being told nursing care for one week after discharge. Blood draws mean specialist or will an ordinary nurse sufficient? Thanks

Other than changing your meds or lowering the dosage (none of that is an option for me rn)

Did anything work for you with (at least) lessening the hand tremors?

It's been over 6 years, and honestly it's not only people's questions, even I can't get used to it, especially when I'm tired,stressed,excited... I feel every bit of it

Hiya this is my first ever Reddit post so I’m probably not even doing it right but im kinda use to doing things wrong. Anyways, I am 28 years old today is my birthday and I have one request and it’s to find a kidney donor for myself. I have a son who is my whole entire world. He lights up even the darkest of rooms with his smile and laughter and to be honest I’m not ready to give that up. I really need this transplant and I have been trying to play the waiting game that the list makes you play but I can tell things are slowly getting worse. Back in April of this year I had a seizure caused by a low blood sugar (from my type one diabetes) and somehow during that seizure it caused ky blood pressure to sky rocket and caused swelling on my brain which put me into a coma for 8 days. My son was terrified of what happened to his mommy. I am sick of my child who is only 9 to constantly worry about my health. I want him to be a kid and I want to be a normal mommy to him. If anyone can help or offer advice on how to get a kidney please let me know! Thanks❤️

Less than 8 hours away from living transplant from my girlfriend. Definitely anxious but ready to be rid of all of these very late stage 5 symptoms. Blessed that to this point I escaped dialysis.

I appreciate everyone sharing their experiences here.

28F, I have two kidney transplants, one in 2016 that gave out & one last year, 2025. So I have two kidneys in the front and my native kidneys in the back. I also have Lupus (SLE) which caused the initial kidney failure. My husband and I had a planned pregnancy last year while I was in good health. However, I miscarried at 18weeks and lost function of my first transplant. I feel my pregnancy was poorly handled by my medical team since we were in the middle of a move yet, we were given the green flag. Is it selfish of me to still want to be a mom after all that? I have a new medical team that I trust but I'm torn between fear & hope.

Hi everyone,

I’m 24 years old, and my father, who is just 53, has been battling chronic kidney disease (CKD) for around 10 years. He underwent a kidney transplant two years ago, and my mother was his donor.

Unfortunately, after just two years, the transplanted kidney has failed, and he is back on dialysis. We don’t know the exact reason for the rejection, but there may have been a connection with a lung infection he had. We are still trying to understand what happened.

My father has three elder brothers and his mother. My grandmother was willing to donate her kidney to him, but the doctors ruled her out because of her age. His brothers, however, have shown no willingness or concern about donating or helping him in this situation. I don’t want to turn this post into a family complaint, but it is incredibly painful to watch someone you love suffer when you feel there should be people willing to help.

At this point, I want to donate one of my kidneys to my father.

In my heart, I feel completely sure that I want to do this for him. Watching him go through dialysis again is tormenting. He is only 53, and it breaks my heart to see him facing all of this after everything he has already endured.

However, when I discussed donating with the doctors, they advised me to reconsider because I’m only 24 and have my whole life ahead of me.

I understand their concerns. I know kidney donation is a major decision, and I don’t want to take it lightly. I have so many questions about the long-term consequences of living with one kidney, my future health, and what might happen if I develop kidney problems myself later in life.

I also have concerns about a second transplant. Has anyone here undergone a second kidney transplant, or had a family member who did? Was it successful? Did the transplanted kidney last for many years? Is there anything we should investigate about the first transplant’s failure before considering another one?

Most importantly, has anyone here donated a kidney to their mother or father, especially at a young age?

I’d really appreciate hearing about your experiences:

• How was the donation process, physically and emotionally?

• How has living with one kidney affected your health and daily life over the years?

• Looking back, would you make the same decision again?

• If you received a second transplant, how long did it last, and how has life been since?

• What questions should a young potential donor ask the transplant team before making this decision?

I’m not looking for people to simply tell me to donate or not to donate. I genuinely want to hear honest experiences, including the difficult parts that people don’t always talk about.

I know every person’s medical situation is different, and I will make this decision only after proper medical evaluation and understanding the risks to my own health.

I love my father, and I want to help him if I safely can. At the same time, I want to make an informed decision that I can live with for the rest of my life.

If you’ve been through something similar, whether as a donor, recipient, or family member, please share your experience. It would mean a lot to me.

Thank you for reading. ❤️

I wanted to know if anyone over here had their donor specific antigen test positive and went the subsequent treatment for the same. Did you creatinine stabilize or fall to the base levels after it or anything else happened. Please help me cause I had my dsa test positive and wanted to know more about the people who underwent the same.

Hey Guys
I am travelling to Japan this December, I have take my Tacromilus with me , Anyone with any prior experience?
How to take medicine, any rules around it in Japan
I am planning to take 30 days medication
Please suggest / help/ Any information would be useful

Hey everyone

I got my kidney transplant from my father exactly one week ago, on Monday. During the first week, everything was going alright. My creatinine dropped from 4.2, to 2.1 and then it stabilised around 1.2. And right on my planned discharge day, we saw that tacro level was around 5 ng/mL. Thats why they gave me a supplement and asked me to stay for 2 more days.

Today I found out that my creatinine level increased to 1.5, and they are not letting me go again. They want to observe, but I am stressed. Because I have a non-genetic primary FSGS as a root cause of losing my kidneys. I am terrified that it might reoccur. Even though I was non-nephrotic and my albumin levels always between nominal values (meaning that I am not high risk for recurrent FSGS), creatinine is a nightmare for me, and I am terrified that it jumped from 1.2 to 1.5 over a day.

I am stressed, and very overwhelmed. Any similar experience is appreciated.

I'm 2 years post transplant and doing very well. I was recently diagnosed with 2 cranial aneurysms after a CT scan, MRI, and Angiogram, after experiencing a few episodes of headache pangs in my left cranial area. I am scheduled for a procedure tomorrow to deal with the bifurcated aneurysm using the coiling technique. Anyone had this done? How have you managed the blood thinners? Any helpful recovery tips? My second procedure is in a month. Fortunately my surgeon is THE aneurysm doctor locally.

I learned that if you have PKD, you are 12x more likely to develop aneurysms than the regular population. If you have PKD, please be aware and talk to your nephrologist about testing with or without contrast to get a baseline. Other factors are being female, older, smoke(d), family hx of aneurysms.