25 with CKD (between stage 4-5), Brand New Patient!

[rickster12]

Hello,

I just joined this forum so this is my first post! My husband, Jared, was diagnosed with Chronic Kidney Disease (somewhere between stage 4-5) last month after a routine blood test. The doctors discovered high levels of creatinine in his blood and protein in his urine, his blood pressure was 160/110. This was quite shocking to both of us since Jared is 25, healthy (or so we thought) and we have only been married for 3 years.

The weird thing is...he has NO symptoms. He feels the same as he always has!

Our primary doctor sent us to a nephrologist and urologist. After a CT scan and Ultrasound, the kidney doctor discovered that one of his kidneys is basically not working and the other one is functioning somewhere between 15-18%. The next week, our urologist installed a stint in his ureter after discovering a kink in his ureter and is hoping that this will relieve some pressure from the kidneys and possibly reduce his creatinine levels (we are still waiting on the results). Even if the stint helps, Jared will still either need to go on dialysis or receive a kidney transplant.

Currently, Jared is taking Amlodipine Besylate (generic form of Norvasc) and has experienced swelling and pain in his right ankle. At first, we thought this was a blood clot and rushed him to the hospital (this was a couple of days after his stint procedure) and had an ultrasound done on his leg, the tech discovered no blood clot. The ER doctor sent us home and told us to come back if it got worse. The next day, Jared met with his kidney doctor who told him that this was a side effect of his medication. A couple weeks later (last night), Jared's left ankle began to hurt. We are assuming that it will follow the course of the right ankle and begin to swell within the next couple of days. Is anyone else on this medication and has experienced the swelling of the ankles? We are considering switching medications but are hesitant since his BP lowered to 136/90 since taking it.

We are going to start looking for kidney transplant matches within the next couple of weeks and Jared will be undergoing tests and the surgery (if needed) at UCLA this next year. Thankfully, we have plenty of family and friends (myself included) willing to donate, we just need to see if anyone is a match. We are praying and hoping that at least one person will be!!! My husband is hesitant to let anyone donate for him. He is afraid of something happening to the donor or that the donor will need their kidney some time later in life. For this reason, he is hesitant to let anyone close to him donate.

Anyways, that's my story right now...I am writing to see if anyone has a similar story or can provide any insight. This is new territory for us and we are scared and unsure of what will happen next!

Hi, I know this is an old post but I hope things for Jared have gone well since December. I started dialysis in October. Let me give you some history. I was first diagnosed in July of 2010 (stage 3 at that time). For 3 years, diet and monitoring was the treatment (and lots of meds to get my BP down). My kidney disease (now stage 5) was a result of diabetes. I was once well over 300 pounds, lost over 100 of it, but not before the damage was done. I am also on amlodopine. 10 MG a day (was at 10 MG in morning and 5 MG at night, but my blood pressure after being on dialysis for six months is actually a bit low now). Also, tell him not to be afraid of dialysis. I am not saying it is easy, but knowing how I felt right before going on, if his doctor feels it's time, it most likely is (you can get a second opinion if you choose, but I have a feeling how he feels he will know too it's time. I can say that since I started dialysis I feel much closer to "normal" than I have in years. Yes, the time is a pain but having a better quality of life to me is more important than the quantity. And don't be afraid to get the word out about donations (kidney). If you don't feel comfortable flat out asking, put it up on facebook, just make it known how to call and any basic info the hospital where he is being tested provides. And most importantly STAY POSITIVE! By this I mean both of you. That is one of the main ways to beat this. I can tell you that (despite having several close friends that mean equal to me) if it wasn't for two of them, I might not be here today. Hang in there!