Hi, i donated my kidney 2 years ago to my father, who is doing excellent. I was being checked every 6 months for 2 years through the Organ Transplant Institute in Miami. Upon graduating from the donor program, I am now being told that I have Chronic Kidney Disease Stage 3A. I am shock, because i am 48 yearsold, who takes excellent care of herself by eating healthy, exercising 6x a week and keeping a healthy weight. although, the organInstitute changed my creatine basesline to 1.3, i’ve been steady for the past years. No one from that institute has EVER told me that I have CKD stage 3, which i think it was their responsibility to tell me. The only thing they did tell me was to check my blood pressure regularly. I then went and got a second opinion from a nephrologist in my my county and they confirmed again that I have CKD stage three. He told me to adjust my diet by eating less protein. I mentioned to him that I had Covid last year and he said there may be some connection with it damaging my kidney . I then went to another nephrologist for a third opinion and of course she confirmed the same thing , but said I can do whatever I want not having to adjust anything. I am left confused and devastated. Of course I’ve made every adjustment as possible and have been reading all books about renal diet. I am now going to speak with a renal dietitian today. I don’t have the heart to tell my parents what is going on because my dad is doing extremely well with my kidney and do not want to hurt them. i will probably never tell them. Does anyone out there have some advice for what I should or has been through the same situation?
Kidney Donor who now had CKD stage 3a - Kidney Disease
Kidney Donor who now had CKD stage 3a
You can get educated with a site like kidney school, and several others like Davita.com, and American KidneyFoundation websites. There is a popular book by Lee Hull for eating a high vegetarian low protein diet. Be sure to avoid nsaids like high dose aspirin, Advil. Aleve, etc. Watch sodium and potassium, as well as calcium and phosphorus levels You can take Tylenol and prescription from your doctor for pain meds. Be sure to follow up with a nephrologist and a team with a renal dietician, social worker and RN to help keep an eye on you and give you tips. You can Google all kinds of food lists that tell you the amount in foods and drink, renal diet recipes, etc. Sign up for a kidney class at Davita or Fresenius Kidney Centers. Welcome to this great forum, where you will get all kinds of info and positive support . If you have diabetes, there is a new drug called Farziga that helps slow the progression of CKD. When I was first diagnosed with CKD in 2020, there was not much info or support about lowering protein as a tool. You are lucky to be living in this decade with abundant resources. I am sending positive thoughts your way!
I may have the wrong website for kidney school. Everyone, please correct me if needed.
I understand your surprise at finding yourself at Stage 3a. That may not be unusual for a person with one kidney according to some of my research. I know that my hubby, also in Stage 3 with one functioning kidney (a transplant), has similar creatinine levels as yours and his team is happy with it. I suspect some kidneys simply don't grow or expand to take over the loss of the other. And the eGFR tables and others are rather inflexible since they're based on data from people with both kidneys. The nice thing is that you, as a donor, will always be at the very top of the transplant list should your remaining kidney fail. If things remain as they are, I suspect that won't happen. Simply monitor your labs on a regular basis. I suspect it will turn out fine since your lab reports (like my hubby's) are remaining steady. Blessings!
I agree the Institute should've informed you of that if before donating but it's a great thing you've done nevertheless (and I wouldn't tell your dad re your CKD). And you can improve function naturally. My 66y old mum had a nephrectomy (cancer) 5y ago yet subsequently increased eGFR from 36-76, although it has since dropped back for reasons unknown but which we are now addressing.
If you're unclear about doing it yourself, I'd suggest seeing a Naturopathic nutritionist specialising in ckd. Good luck.
Sorry may I ask which is your creatine, BUN and 24h urine proteinuria last 3 set of exams? Do you regularly take NSAD? BP is normal? Rgs
Thats awful. I am so sorry to hear this. My husband was tested as a live donor for me. Unfortunately he was not a match as he has clotting issues. This was always one of my biggest fears, if he did donate a kidney. I used to ask the medical team about it but they just brushed it off and said it would be fine. Its also a reason why I refuse to let my sister get tested. What an awful predicament to be in. I think i would be the same and not mention it to your dad. Definitely look into a renal diet etc. I really wish you all the best. You did an amazing thing for your dad. Take care.
I think her doctor's recommendation to reduce protein is good; it's probably based on her lab reports. She probably doesn't need to do anything about her electrolytes (sodium, magnesium, potassium, etc. ) and so forth if they're in the normal range, since driving them lower can actually be harmful. It's such an interesting balancing act. I agree with you how smoothly the transplant center brush off the potential complications of being a donor. They asked about my adult children and I innately sensed it wasn't wise - since then, one has been diagnosed with debilitating psoriatic arthritis, the other one is tipping into T2D, and so on. If life goes just right for the donor, it's okay. But sometimes it doesn't.
hi, yes it’s definitely an unfortunate situation. I for sure am a healthy a healthy person , hence having chronic kidney disease stage three. I’ve changed my diet but not too much because I’m healthy and always ate healthy I also do a lot of exercise. That’s why I am baffled by this whole diagnosis. it breaks my heart. Especially since I did everything right. This is an unusual situation. I’ve cut out more out of my diet but . now, since I am getting closer to my new blood panel , my anxiety goes up. This whole situation is bizarre. I’ve had Covid last year and I’m wondering if that has anything to do with it. But in the meantime my anxiety is through the roof. I have been talking to a renal dietitian and she gave me some good advice and will be speaking to her again today, because i have more questions and she can put my mind at ease.
Wishing you all the best. I really hope things improve. Please keep us updated.
Great thing you did for your dad. Recognizing that everyone’s situation and functioning are different I just wanted to share that I too was diagnosed with stage 3a and had no idea where it came from. I was older than you when diagnosed so there was some conjecture that an enlarged prostrate could be involved. However, in Jan 2020 I was diagnosed with heart failure ( not congestive) and it was at a serious level whereby the ejection fraction for pumping was at 20 per cent with normal being 55-70 percent. So nephrologist told me kidneys take a lot of blood to function well and obviously mine were not getting an appropriate amount. He said that could have led to the kidney disease. I took cardiac rehab and upon completing that joined a gym for 3 to 4 90 min sessions weekly, strictly cardiac. Meantime last echocardiogram. revealed that heart ejection fraction was at 45 per cent, a dramatic improvement, obviously benefiting my whole body, to include my kidneys. My last blood test showed GFR and creatinine and bun falling into normal range, what I call high normal. For the most part I had been asymptomatic ref heart failure, even though that is hard to believe. but it does show that the potential for improvements does exist. I tell you all this not to scare you ref the heart but to perhaps give you something else to consider. I wish you the best and it is obvious that you are a caring person.
Cree
adjust your diet. It is simple and cheap. Just no fun. But then again, I never liked eating animals in the first place.
What make them suggest this,you mentioned that your creatine is 1.3 which normal for single kidney, did you test positive for protein in urine? My father donated kidney for me and since the operation he is 1.5 and i remember that in the second day after operation i asked my nephrologist is it safe for him,he said it might decrease in the future but staying at 1.5 is normal for him with one kidney. His all other tests are perfect from blood to urine, except for creatin.
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