Scared and Confused

[rere96]

Hi, im a newlywed and my husband has been suffering from kidney problems his whole life. He is 32 years old. After a recent visit with a new nephrologist it was shown that he is leaking alot of protein in his urine (547mg) after a 24 hour test and his creatine is up to 2.25 since his last blood test 4 months ago. His Efgr was at 49 a couple months ago and last blood test showed it at 39. Doctor has requested a biopsy after seeing ANA positive on blood test. I am terrified as to what this may be and am scared for my husbands future quality of life. The nephrologist scared me and im stuck in a whirlwind of googling what this can be. My husband also has uncontrollable high blood pressure that seems to be reacting to Lipitor well. Any words of encouragement or direction would help. Biopsy is scheduled for the 20th and fear is setting in. This is our first year of marriage and at such a young age i am terrified as to what this may hold for him. He was misdiagnosed with Polycystic Kidney Disease because his ultrasound shows cysts, but the kidney size and all other organs are normal. Please any help would be appreciated i am terrified after losing my brother who was only 18 to cancer last year. I feel as though I'm going to receive the same news.

[drmind]

First, allow his doctor to evaluate and treat his symptoms before jumping to conclusions. What struck me odd was your comments about Lipitor which is a statin used to lower cholesterol and not blood pressure. Is he takintlg any blood pressure medication? If not, why hasnt he beem doing so with what you described as very high blood pressure? Has he been under the care of a nephrologist and being seen regularly? Sending sone positive thoughts that you can have things explained soon and get him involved with some treatment.

[rere96 in reply to drmind]

I’m sorry I was typing anxiously and didn’t mention the right medicine! Yes he takes Lipitor for his high cholesterol as well the blood pressure medication he is taking is niphedipine. We monitor blood pressure sporadically and it’s pretty normal at home and jumps up at the doctors office. He is now under the care of a nephrologist which is the one that requested the biopsy. I think it’s the unknown that’s scaring me. He’s been tittering at grr 49 for over 2 years and then this time it was 39 and his creatine was high. He had ruled out polycystic kidney disease although he does have cysts on the kidneys. But his Ana screening he’s suspecting lupus or something autoimmune. I’m scared because of the vagueness. And even more scared about the biopsy

[drmind in reply to rere96]

Thanks for your reply. I cant speak about the biopsy as i never had one. But, blood pressure is one of my problems as it likely the cause of my kidney problems. My nephrologist asks thst i take my blood pressure twice a day and chart it for.him to see during our next meeting. It might be a good idea for your husband to do.

I know its difficult not to worry, but if you can try to stay calmer. Excessibe stress can only make every problem worse. His kidney doctor is trying to diagnose his problem and hopefully find some adequate treatment.

My GFR went down and up a few times and likely causes were poor diet, chronic (unknown) dental infection, excessive antibiotics, and unstable blood pressure. We cant diagnose, but we can share our experiences and hope others get some assurance and support. Please keep us posted about your husband's health. We care.

[Sparker88]

I’m sorry you’re going through this. I was diagnosed with iga Nephropathy last year at 33. It was really hard for my husband and me. Therapy has really helped. Make sure you both receive the support you need. <3

[rere96 in reply to Sparker88]

thank you for the response, I hope this is something we can figure out and get treated. I worry about the unknown I hope whatever it is can be helped.

[4to3]

Hi, I am an 80 yr old male. 18 months ago EGR was 26. I suspected it was statin related but no doctor would agree. But at my age, I figure I'd like to experiment. It was a choice of dying by kidney failure or by heart failure. After trying many statins, I stopped statins on my own. Then I was given a research report by my nephew doctor which showed vit B1 effective at restoring kidney function. So I started eating "kidney friendly foods," and started taking 500 mg of powdered vit B1 daily. After 9 months my EGR has gradually increased to 41. What caused the improvement? I don't know. If my EGR gets above 50 I may start experimenting with statins again. Then I'll know for sure if statins were the problem. So there are some things you can do for yourself. PS some doctors will agree to a patient taking statin every other day, or every third day, All the best to you and your husband.

[rere96 in reply to 4to3]

this is something that I’m going to look into maybe it would be beneficial to him!

[cefur in reply to 4to3]

how long did you have heart failure and CKD?

[Hidden in reply to 4to3]

Hi 4to3. Regarding cholesterol: years ago I had a boarder with high cholesterol and with his agreement, I changed his diet to the one advised by Dr Robert K Kowalski in his first book, The 8 Week Cholesterol Cure (I haven't read his latest). On a personal note, if I eat wholefat dairy (butter, milk, cream, yoghurt, etc) my cholesterol goes up. With no dairy fat (I drink skim milk ) but still eating meat fat, my cholesterol drops significantly. Hope this can be of help. And thank you for posting your experience and knowledge. I'll be looking into taking Vitamin B1.

[Kam73]

Has he adjusted his diet to reduce his animal protein?

[rere96 in reply to Kam73]

yes I have lowered all his sodium intake as well as cut red meat and incorporated more fresh veggies and fruit.

[Turtlepad513]

Congrats on your wedding. It can be really hard to be a newlywed and suddenly be thrown into being a care partner of a chronic disease. You are such a gift to him.

It also can be hard to deal with this at such a young age. I’m 34 and at egfr 17. Worry, stress, and anxiety is not uncommon. Therapy can help, and NKF Peers might help.

I know people who have lupus that caused kidney disease, they were able to find a living donor and continue living their life.

[rere96 in reply to Turtlepad513]

Thank you for the kind words. Yes it is very difficult navigating through this and finding days to be positive is really hard. I think I'm mainly afraid of the unknown. To not know what is going on and what's its doing to the person you love i think is the scariest part of it and losing him would be a nightmare. I'm glad I've found this forum with people who share their experiences from their walks of life. It makes it a little bit easier to cope through all of this.

[RhenDutchess123]

The BadNews...he is losing Kidney Function..

The Good News: There is alot he can about it....Read all you can about his diagnosis and follow a Kidney Friendly Diet....there is also Transplant and Dialysis, which people can live for msny years on...and new Treatmenrs are being develooed all the time...

Take one day at a time....and one breath at a time...and one step in front of the other...

Your Support and Love for him will be very valuable...and its okay to be scared...but being scared is not an action...Just the fact that you looked fir a forum such as this is alone a great step...You got this !

[Darlenia]

Hi! My heart goes out to you. I've been in your shoes with my hubby. I was exactly where you are now three years ago. My world was spinning. I couldn't eat or sleep. I thought of the grim reaper. Sometimes I wished it was me with the condition, rather than him. Eventually, I realized that I needed to control my brain - and keep my focus on reality, not the fears. I had a chat with my primary (who gave me a sleep aid that I never used) and began to bring myself around - walking, meditating, etc. I forced myself to replace pessimism with optimism. It helped a lot to focus on the fact that my hubby was alive, that kidney disease has many treatments, and so forth. And then I put a plan in place to keep my hubby by my side for years to come. We didn't want the disease to rule our lives, we wanted to rule the disease. Initially, our plan involved diet modifications when his kidneys were still functioning, then it moved to selecting best form of dialysis when they failed, and then the plan evolved even further to getting a transplant. I assumed early on that kidney failure was a death sentence; but I can tell you that it isn't - there are many avenues and treatments to keep people alive and functioning. Since your husband is so young, he likely will qualify for a kidney transplant should that time come. And he may just be able to entirely skip dialysis. (Keep an eye on his eGFR; he likely will be able to hop on the transplant list if his eGFR drops to 20 or below. See this site should that time come: srtr.org/transplant-centers... ) And as each day goes by, more advances are also made in the renal field. In the meantime, remember to focus on the good things happening today, not fears for tomorrow. In other words, don't suffer today for things that may may never happen. I truly suspect your hubby will be with you for a good number of years. I say this as a lady who saw her hubby go through kidney failure, dialysis, and a transplant all within three years time. My hubby is doing very, very well today. Looking back, I spent way too many hours worrying needlessly. Sending encouragement and positivity your way for a great outcome!

[rere96]

your words really helped me, I’m glad I have a place like this where I can confine my feelings with people who have similar experiences. Thank you for the optimism.