It's perfectly normal to feel as you do, as the words kidney disease is overwhelming when it first is heard.
It sounds to me like you have a wonderful and competent nephrologist, who will work closely with you to get this under control. Ask to have labs explained, keep a notebook
with you at doctors appointments and write down what is said. Bring a member of your family or good friend with you to scribe at the appointment.
Don't be afraid to ask questions.
Remember that it is a process, often trial and error of medication and takes time to put it all together.
I know- I was diagnosed with Membraneous Nephropathy in April of 2017, so I understand your feelings, concerns and fears.
I have been treated with Lisinopril and in February of 2018 given Tacrolimus 3mg. I was on it until June. I am not a candidate for prednisone, but my present nephrologist feels that Rituximab would be a better choice of treatment for me, still to be determined when as we had to get the Tacrolimus out of my system.
I deal one day at a time, and am grateful that this was caught and although can't be cured, can be controlled.
I eat a diet with lots of fresh and fresh frozen veggies, apples, strawberries and blueberries. I don't have an issue with potassium or phosphorus, but still keep an eye on dairy, potatoes and other foods which are high in these areas. I drink plenty of water, especially in the hot weather, do not eat red meats or high sodium products and walk daily. These are all important.
I would ask your doctor for a referral to a renal dietician who will be able to give you more definitive quantities and food selections. Sounds like alot but it will help set you on a great course of action.
I know that it is difficult, but try to stress less and breathe as they know what it is, are treating it. You can only control so much.
Just know that you are not alone. Reach out and I will always respond.
Sending you my prayers, hugs and healing thoughts..
My husband has membranous too. He was diagnosed in 2013. We have had our ups and downs but he is doing ok. He was diagnosed in Stage 4. His doctor has tried various treatments and all have helped. We just hang in there and keep praying.
I was started this month on 30mg of prednisone for 35 days then next month an antigen for a month, the following month prednisone then the antigen a month later..
6 months of this treatment first.
He will see if there is any improvements in my urine and bloodwork and then after the results go from there for more treatment..
My husband still does all the things he did prior to being diagnosed. We do move at a slower pace but part of that is due to my health. He has had to take prednisone several times and it makes him sluggish but he continues on. Hubby has had chemo too, which is a huge help.
Remaining positive and reaching out to others is a great help too. This is all scary at first. If you have a significant other, have them go with you to the doctor. They are just as scared. Our doctor lets me ask questions and answers them. I have taken notes and asked for lab results. If you are in a large city, see if NFK has a local office and find a support group. Attendan6 kidney related events you can to find others. It all with help.
I was diagnosed with Wegeners in 2015. My kidneys had completely failed at that point, but I was treated with prednisone and rituxumab. Mine has been in remission since.
I have membranous Nephropathy also I To was scared in the beginning I feared the unknown of this kidney disease. I was diagnosed in May 2013 in Stage 4.
My Nephrologist started me on a regiment of Lisinopril, Valtassa to control my potassium and Rituximab which is a chemo treatment medicine given in IV form. These medicine help to slow the progression of the disease. With this treatment my GFR is 50 and Creatinine is 1.4 at my last lab work. When I was first diagnosed my GFR was 23 and Creatinine 2.7.
Good Luck!! My thoughts and prayers for you. Let me know if you have any other questions.
Thank you so much. As of now my GFR went up from 22 to 29..
He said his goal with me is to get me in remission and then try and get the GFR up to a higher level..
Right now I just finished 3 days of 1000mg of prednisone I.V..
He sent me home from the hospital and put me on 30mg of prednisone for a month and he will switch my medication to an antigen for a month then back to prednisone for a month..
He said for 6 months I will be alternating 2 drugs and then determine if that therapy is working.
My nephrologist started me in August on 1000 mg of Prednisone I.V in the hospital and put me on 30mg Prednisone by mouth at home for 35 days..for September he started me on chemotherapy pill form at home for 35 days.
In October 3 days of I.V Prednisone , 1000mg a day for a total of 3000mg at the hospital as an outpatient...Then another round of Prednisone 30mg a day by mouth for another 35 days then back to chemotherapy by mouth for the month of November..
He's going to alternate the Prednisone and chemotherapy for 6 months and do monthly bloodwork to see if I go into remission..
Wondering how you are doing today? Hubby and I are trying to think of other things that might help. NKF has a peer program where you can talk with another Kidney Patient on a regular schedule. Thought that might help.
Depression does not surprise me as hubby went through that. He still has times. Sick and drained, yes. The med is part of the culprit for that. Prednisone has diffferent effects on people but he felt tired and weak. Do you like to read? Find something that you like and do goofy things. Funny movies or books. Coloring makes me calmer. Music can help. Talking with others is always good. Don’t be afraid to cry and scream. That never hurts.
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