Protein in my urine

[SweetTexas75]

Hi there! I am 6 months post kidney transplant. First I'd like to say that I was very blessed, I was approved and put on the list May 3, 2023 and I received my new kidney from a perfect match deceased donor June 13, 2023. My transplant team said that is very rare and very lucky.

I have had some challenges though. Just a few weeks after my transplant, I got my first of many UTI's. I was put in the hospital and a kidney biopsy was done. The biopsy showed I had an autoimmune disease called ANCA Vasculitis and it was attacking my new kidney causing rejection. I was given many IV infusions to help stop the rejection (Rituxan and Steroids). The UTI was actually a blessing in disguise because without that, they would not have found the autoimmune disease perhaps in time to stop the attack on my new kidney. I continued the IV infusions once an outpatient and they worked very well. I have had two more biopsies and my last biopsy showed no more attack or rejection.

My white blood cell count stays low like 1.6 or so. My red blood cells and platelets are also low, it's called pancytopenia. I just had a bone marrow biopsy a couple of weeks ago and get the full results at an appointment with my hematologist on Thursday. I am also anemic. I've had several more UTI's, two turned sepsis and one almost killed me, putting me in the ICU for 8 days (I also lost my pancreas to cancer five years ago so I am type 1 diabetic and had DKA at this time as well). I was sent home both times with a PICC line needing two weeks of IV antibiotics at home then a month of oral antibiotics. I've also had CMV causing terrible gastro problems. I am still tired all the time, no energy. My creatinine stays around 1.0-1.2 and my GFR stays around 60 but my transplant team says not to worry about my GFR. They did tell me if I get protein in my urine then we worry. I had a urine test yesterday at my urology appointment and it showed positive for protein (1+). so now I am worried. I don't do labs and a urinalysis again with my transplant team until the 11th and 12th.

Any thoughts would be greatly appreciated! I look forward to being apart of this group! 🙂

[Seanthesheep]

Hi Sweet Texas. Wow. You are having a tough time. You must be a real strong lady to remain so positive. I am 72 years old and three years post transplant. Apart from the occasional dodgy tummy I have had no real problems so I am not the best one for advice. It does take about a year for the transplant to settle and to get your head around the emotional side.

I am just wishing you all the best for the future and hoping things turn your way. You really deserve a change of luck.

Wishing you and you family a very Happy Christmas and a healthy new year.

Best wishes

Sean

[SweetTexas75 in reply to Seanthesheep]

Hi Sean! Thanks for the nice message. I'm glad to hear it takes about a year to settle, I thought I would come out of surgery healthy and happy! Boy are you right about the emotional side too. I am also wishing you the best of luck in the future and a very Merry Christmas and healthy New Year!!

Mandy

[peregrin]

I'm four years post-transplant. My protein is at 2+ and has been so for about six months. My transplant team tells me not to worry.

[SweetTexas75 in reply to peregrin]

I will try not to worry too! Before my transplant I was on Losartan and Kerendia and it completely removed all protein from my urine. I am going to ask my transplant team if that is an option if needed in the future. Thanks so much for your reply! Happy Holidays!

Mandy

[peregrin]

They did put me on a small dose of Losartan as a preventative measure

[Darlenia]

Hi SweetTexas! I can see that you're definitely going through a bumpy time post transplant. My hubby (transplant at 71) had a rough time of it too after surgery - we didn't really notice the transplant fix-it wing in our center until my hubby wound up there a few times. The good news is that my hubby is on a pretty good path right now at age 74; we're cautiously optimistic for this continuing. My hubby, a T2D, has a problem with proteinuria too. When a person is diabetic, the condition can damage the filtration vessels so protein escapes into the urine. BUT, sugar and carbs and blood pressure can be controlled to reduce that issue. Ahtough my hubby tries his best to keep his glucose levels stable, it does spike here and there. My husband also suffers from utis like you. When we discussed his protein situation with his transplant doctor, the doctor mentioned that my hubby's diabetes, utis, and "the slow decline of his natural kidneys" all contributed to the protein numbers. His doctor accepted the figures as fine for my hubby. We were reassured that tests showed that there wasn't any rejection. You also went through an autoimmune attack but it's now controlled so that's a positive outcome. I know transplant patients face a lot situations re blood cell counts and so on. My hubby's is well below in normal in some readings but no one has expressed alarm about that yet. All I know is that his creatinine levels are around 1.7 and his eGFR is around 50 and his center is pleased with that. His nephrologist grinned and said, "You'll probably live fine with this kidney for a decade or so with the lab reports you're getting!" And we were pleased to hear that. After all, life is finite for all of us. It's a scary journey at times, sometimes it seems gloomy out there, but the sun comes out too. Hope that you see sunny days ahead in your next lab report and visit. Hugs!

[SweetTexas75 in reply to Darlenia]

Hi Darlenia! That makes me feel a lot better. It makes sense that my diabetes can be contributing! I'm so glad to hear your hubby is on a good path and that he has you because you sound very supportive and loving....though that's not hard when you love someone right! Thank you for sharing your story with me. Happy holidays to you both and your family!!

Mandy

[littlelinda50]

Hi, Sweet Texas, I have my kidney transplant May 2019 and my living donor was a perfect match and was not a relative which they said was very rare. You have a lot going on but sound like your handling it all very well. I did too get UTIs and I ended up seeing a urologist who put me on an antibiotic that I take daily to prevent them. I also take acidophilus and a fiber gummy that helps worh urinary health. After my transplant it was rough because it took them a month in a half to diagnosis me with Addison disease. I have my ups and downs. I have had hernia repair surgery and gallbladder surgery since my transplant. I have one more surgery to go and maybe things will get back to normal. As far as your numbers for me I focus on my creatine, bun, and GFR levels the most. I do look at my urine protein level but I know it can be different each time because of how much or how little I drink or what I eat. If any numbers bother you and they tell you not to worry about them ask them to explain why not and when to worry. You have a right to know.

[SweetTexas75 in reply to littlelinda50]

Sounds like you have a lot going on too! I also had my gallbladder removed along with my whole pancreas and an incisional hernia repair. I have a rare genetic condition called MEN Type 1. I am the first patient at MD Anderson to have this and to get a transplant because of the risks of cancer which I have already had pancreatic and lung cancer five years ago but they decided the benefits outweigh the risks for me. I have had a total of 13 surgeries (4 of them c-sections though...still surgery)!

I am on a preventative antibiotic for my UTI's too....Methenamine. Also I take cranberry tablets with 36mg of pac's, digestive probiotics and estrogen vaginal cream (sorry if that's TMI lol) all to help prevent UTI's. I have been feeling better for the last week so fingers crossed it continues.

Thank you for talking with me, we are strong women and we've got this! Happy Holidays to you and your family and wishing you a healthy New Year!!

[LisaSnow]

I want to assure you that having protein detected in the urine is more common in kidney transplant patients than we realize. In addition to kidney factors relating to the transplant or metabolic diseases like diabetes, medication side effect can also lead to protein leakage. The presence of protein itself is not usually a big concern, only if the amount increased unexpectedly that we should worry.Regarding UTI, I have never had one and I believe it is because I use bidet toilets at home. Basically it does water-based washing every time and decreases the chance of bacteria on the surface. Is it necessary? Of course not, but I really enjoy having it for comfort too.

Best wishes for a worry free and healthy holiday season!

[SweetTexas75 in reply to LisaSnow]

Thank you so much for your reply! That is a very interesting idea for a toilet, maybe a good Christmas present!! Happy Holidays to you too!

[Ahmad_92]

Hello sweetTexas i had protein in my urine in the first month after transplant itp was due to UTI,i had 3 UTIs first 45 days after transplant one of them put in the hospital for 3 days.Now i am on irbsartan as a protective from protin, also i was on bactrim for 6 months to prevent the recurrent UTI.

Most of transplant patients starts to settle after 6-12 months,hope your new gift will asjust to your body soon 😊

[SweetTexas75 in reply to Ahmad_92]

Thank you for your reply! What is up with these UTI's we all keep getting. I think I am now starting to adjust as I have been feeling better. My white blood cell is very low though, it was 0.8 yesterday so they are changing my medications and giving me zarzio injections. My bone marrow biopsy came back normal sooo we'll see. I'll just stay in my bubble for a while longer to stay healthy! Happy Holidays and Happy New Year! :))

[Ahmad_92 in reply to SweetTexas75]

You already made it to first 6 months, for me after 6 monthe was the point i felt i am me before the kidney diseas, happy New year, and happy holidays enjoy it 😊

[SweetTexas75 in reply to Ahmad_92]

I have been feeling so much better! The holidays have been great, I was able to cook dinner for my family and clean and play games, I had lots of energy! So glad you are feeling well too! Happy, Health New Year!! 🙂