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Living after Kidney Removal From UTUC
Hey everyone! I had my left kidney and ureter removed on 6-29-23 due to UTUC- Upper Tract Urothelial Carcinoma. They had already removed a large tumor that was positive for UTUC from my left ureter on May 19th 2023. The surgeon/Oncologist told me that it was very aggressive and that my left kidney and ureter had to be removed as soon as possible or it would be too late. Well, the pathology results showed that my kidney was full of cancer cells that were ready to blossom into tumors! My surgeon told me from the beginning that this surgery would only save my life for now. He said that it will come back over and over but we just don't know when. Anywho, I was out in the heat too long yesterday and came home not feeling too good. I had been sweating profusely, then I started getting chills like crazy, and when I checked my BP it was horrible! My worst was the picture that I attached. I drank a bunch of water, 2 Body armor, and ate some watermelon. Nothing was really working. I finally was like, you know what, I think that smoking some weed might work. I smoked some and BAM my BP was right back to normal! I know what to do next time. 😁 I also have Gastroparesis, RSD/CRPS, among a long list of other things. I was wondering if anyone else that has had UTUC, had a kidney removed, no treatment before or after, suddenly find themselves with sky high blood pressure? If so what did you have to do about it? I appreciate any assistance anyone can offer. Thanks!
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I had my lt kidney, ureter, & bladder cuff removed. The main 2 symptoms I had were extreme fatigue & malignant hypertension (extremely high 180/140 & higher). I have been on blood pressure medication since my diagnosis.
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2 ReactionsOMG there must be something about having your kidney removed that causes such high blood pressure! Thanks so much for letting me know about your experience with high blood pressure as well.
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2 ReactionsYour kidneys are directly related to your blood pressure, they release renin, which is responsible for raising your blood pressure.
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6 ReactionsI had a partial nephrectomy in 1985 and lost the balance of my left kidney in 2010. I also have high blood pressure but it was pretty easily regulated with losartan. Honestly, living without a kidney was never a big deal for me, just keep yourself hydrated and life should go on fairly normally.
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5 ReactionsI’ve also found this to be true.
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3 ReactionsHi guysl,
I had my right kidney/ureter/bladder cuff/adrenal gland and a whole lot of lymph nodes removed August 22, 2022. My resting blood pressure is 113/72. My blood pressure around a doctor is 130/82. I do not have salt in the house and try to buy low salt prepared foods and I drink water, pineapple juice or milk - totalling 1600 to 2000 mL per day.
I went through 4 cycles of chemotherapy (Gemcitaban/cisplatin) before the RNU surgery, and started 12 cycles of Nivolumab immunotherapy 6 weeks after surgery. The entire kidney was compromised and classified as Grade 4 tumour.
The UTUC returned as high grade Non-muscle invasive bladder cancer. All the visible spots and lesions were removed via TransUrothial Resection in March 2023. Did 6 weeks of BCG immunotherapy, which did not work. Now I am scheduled to have a tumour at the site of the bladder cuff resection removed. Odds are that I will loose the bladder within the next year.
Make sure that your urologist does regular cytoscopies to catch any restart of UTUC in the bladder - 50% possibility after RNU.
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6 ReactionsHi Irwants2know! I'm so sorry that you have been through so much already with UTUC. I had the same surgery as you did except my surgeon took out about 10 lymph nodes. I'm lucky in that my surgeon/oncologist told me from the very beginning that UTUC is very aggressive and will return over and over again. He said to expect it to return in my bladder but, it's possible it could show up in my other kidney or ureter. I will be checked every 3 months for at least 2 years including scopes every 6 months I believe. My doctor couldn't warn me enough about how aggressive this is and that it needs to be watched very often and closely. My thoughts and prayers are with you my friend. 🙏🤗☺️
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1 ReactionTerrible, makes my cancer issues seem like heaven on a plate. I hope your suffering ends
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