Hi guys, my boyfriend was diagnosed with IGAN last year with GFR of around 25.
He is currently on a 6 month course of predisone, also taking kayaxelate every second day for hyperkalemia, 2mg of a ACB inhibitor, and calcium channel blocker for blood pressure. We are very concerned because the blood pressure pills are not effective, and he can not increase his dosage for the ACB inhibitor because it elevates his blood potassium levels. He did a 24 hour blood pressure test last week and his average BP was around 150/100!! We are sooo worried, while his nephrologist does seem to care at all! What should we do? He eats healthy, very careful on salt and he is not over weight.
Anyone out there with advise for us? Can anyone in stage 4 share your story about how you manage BP, CKD and everyday life. Is there anyone who can stay stable in stage 4 and not progress?
He is only in his early 30s....This diagnosis is taking such a toll on me, I try to stay positive but the diagnosis crosses my mind several times a day and sometimes I am soo worried I feel sick and depressed. I dont know what will the future hold instore for us.
K
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Keeper2017
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I am sure you know that worrying does not help. I will give you a number at the end of this post to call for direct support. It is for a Peer Mentor program and you and your husband can talk to someone who personally can help support you both.
The Blood pressure issue is common with CKD. Mine was high but I got it down when I changed my diet and lost weight. It is now pretty normal 125-130/70 . I do take Iberartan only, I also drink a lot of water during the day and I try to be active for a least part of the day. If your nephrologist is not worried, then....maybe you shouldn't be. The reading is a little high, especially on the diastolic. Do you take the readings at the same time? Do you take it in the am or pm? Did he have coffee or tea before the reading? Is he bloated? They are all factors. Prednisone will also raise the blood pressure.
There are many different BP pills out there. I am sure if you ask the doctor can try something else that will not raise his potassium. That's kind of counter productive to CKD.
And finally, yes, I am stage four and have been steady for over a year. I have labs next week and I think they will be better since I have lost more weight.
Your future is what you want it to be. There are thousands of people who live great lives with CKD.
Call this organization and see if you guys can get some direct support with someone specially picked for you. phone: 855-653-7337
I had 7 strokes with BP of 200/100 often. Went to many Drs and teams of Drs in hospital.
My husband finally noticed if I got the meds 24 hrs. In the middle of the night it stayed lower. I’m on 2 diuretics, 2. BP’s-hydrolazine is one, don’t know the names of the others right now. A specialist in Philadelphia tried all she could, finally said she had nothing else to try. My cardiologist was the best. I’m new to stage 4 now. We are trying a macrobiotic diet
In the past this diet healed me of many things I wasn’t even trying to do. It’s Stricked but you get use to it.
I totally get how you feel. My hugs to you and warm wishes and blessings to you both. My son is also in his early 30’s and has near similar numbers as yours in addition to having IGAN.
Your doctor should be looking at different medications/dosage to address your blood pressure issues. This is all a matter of trying out to get the best options. In addition walking also helps. I know that that really helps my son. He walks for half an hour twice a day and as often as he can.
Cutting down or even stoping added salt can also help. You can spice up your food with ginger, garlic, peppers and other natural spices. Avoid processed, canned foods and red meat as well as NSAIDs. Eat low potassium veggies. Leach your veggies. Some medicines are also potassium sparring. So check for that too. There are other medications that do not do so. Your doctor should help. If he does not then may be you could go to a different nephrologist who is more sensitive to your needs. There are online/ in person classes such as on davita.com that can help. You should get as much information as you can to educate yourself and yes as Bassetmommer above said please do not worry. You will see better days. Have faith.
Incidentally my son found Lee Hull’s book (Stopping Kidney Disease) very informative and helpful.
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