Looking for positive

[Maggyf2416]

Just don’t know what to think.... everything I read is doom and gloom. I’m 55 and trying to enjoy life and bam...globular nephritis or something like that... anyone have positive results from their treatment

[Jayhawker]

I was just a few years older than you when diagnosed with CKD. I was definitely both anxious and stressed when initially diagnosed in late October of 2013.

There have been several ups and downs as I’ve pursued effective renal care. While there is no cure, effective management may improve renal function or stabilize it or slow the progression.

So, I learned as much as I could about CKD and what I could do to better support the renal function I had left. I searched high and low to find a good nephrologist as well as a medical team who would work together on my case.

Then I committed myself to wrapping my brain around this change in my health and all it’s ramifications as well as learning how to work in tandem with my nephrologist and medical team.

As I began to adjust, I realized that with diligence on my part and effective medical care, I continued to feel and function quite well.

I’m still working full time. Most days I feel and function well (my data has been in Stsge V but over the past 3.5 months has moved back up to Stage IV; I’m not yet on dialysis and am waitlisted for a deceased donor kidney).

In short, I’ve learned how to live well while managing CKD.

I’m linking to a YouTube song that I listened to a lot at first as I’d exercise on my elliptical machine. You may need to copy the link into a separate browser to get it to play. But this song captures EXACTLY how I felt about CKD then and still feel about it today.

Jayhawker

youtu.be/5pBjopDymts(Not working as expected?)

[Maggyf2416 in reply to Jayhawker]

Thank you so much... I just listened and what an inspirational song. I’m trying very hard to lift myself out of this lonely and helpless feeling. AND stop crying... I can’t seem to stop the waterfall.

[Jayhawker in reply to Maggyf2416]

I know—I have vivid memories. We’re here. This forum is full of kidney warriors. Don’t hesitate to share emotions, ask questions, even vent. We understand.

Jayhawker

[Bunkin]

Hi! I was about your age when I found out how bad my kidneys were, by accident. I was shocked , worried and sad. But I pulled myself together and found a program involving supplements, exercise and diet which kept me off dialysis for 5 years! My GFR was 11 when I started and 2 when I went on dialysis. You will have good days and bad. I always seem to have strange things happen to me that the doctors have never heard of! Luckily I have my faith that sees me through although I’m tested quite often. In February if this year I received my new kidney! So my advice is to live the best possible life you can. You never know what’s around the corner😊. Prayers for you. God can do anything!

[Maggyf2416 in reply to Bunkin]

Yes God can do anything! Trying so hard.... how long did it take to pull yourself together?

[Bunkin in reply to Maggyf2416]

I’m a work in progress 😂😂😂 Honestly I have good days and bad days just like anybody. But I was determined I was going to research and do what I thought was best for me. I’ve no doubt you’ll find your way. You’ll have good days and bad days too. But don’t let it deter you from trudging forward, doing the best you can. If you need anything you can always reach out to me. I think the worst part is feeling like you’re alone and nobody understands but you’re not, you have us!!

[Bunkin in reply to Maggyf2416]

Also Maggie it’s ok to cry it out, it’s a normal reaction so if you feel like crying, do it! I did it, it helps you regroup!!

[Bunkin in reply to Bunkin]

Sorry I misspelled your name!!😊😊😊

[Maggyf2416 in reply to Bunkin]

Thank you for your replies and no worries for spelling... at the moment I have no more tears 😭

[Bunkin in reply to Maggyf2416]

That’s awesome! Mission accomplished 😊😊😊😊

[Bassetmommer NKF Ambassador]

HI Maggie, Of all the diseases that could happen this one has some manageable things to help you prolong the health of your kidneys. Diet is extremely important. Learning about CKD. Be prepared for the changes that happen. Have the best most cooperative patient centered health care team. All these things are positives.

[Maggyf2416 in reply to Bassetmommer]

How do I know I’ve got the best team? I’ve seen this nephrologist for quite some time but I don’t know what team will be administering the immunotherapy? I go to get the results from biopsy from him tomorrow. (Nurse has told me over the phone but couldn’t answer any of my questions)

[Bassetmommer NKF Ambassador in reply to Maggyf2416]

A good doctor does the following:Does not pass you off to the Nurse Practitioner, PA or other people in the office to see you unless you agree to it.

The Doctor takes the time to explain everything. They allow you to ask questions and then check for understanding.

They go over your labs each visit.

They look at your record and show you what they are looking at.

They allow you to either record, make notes or have someone with you on every visit to help you understand.

You are able to get an appointment in a timely manner. They are not too over booked.

You feel like they understand you and are not condescending.

When you ask for an explanation, they do not make you feel stupid.

If you ask for a referral for a specialist, they are not put off and make the referral.

They communicate with all your doctors before making a treatment decision.

This is patient centered care and all doctors should be made to uphold this practice.

[rabbit01]

I can help! I was diagnosed with 17% egfr in 2015 when I was 48. I spent the next four years living from blood test to blood test and each time watching it lose another precious percent. It was a miserable existence. I finally started peritoneal dialysis in October 2019 as my egfr was down to 7%. I dreaded the thought of doing it and seriously considered not starting. But the reality has been far better. I feel so much better on dialysis and I do it at home. I actually see the doctors less now than before I was on dialysis. I am so grateful to live at a time and in a country where dialysis is available.

[Maggyf2416 in reply to rabbit01]

Thanks for sharing... and giving me some hope. I just feel right now that I’m a time bomb.... alone and helpless

[rabbit01 in reply to Maggyf2416]

Well I felt like that too. I would imagine it's quite common. Kidney disease is fairly rare so apart from the people I have made friends with here I don't actually know anyone in my position. Hopefully your kidney function will pick up again. You mentioned being at stage 1 for a decade so that is positive.

[Maggyf2416]

I met with dr yesterday. My actual diagnosis from biopsy- Glomerulonephritis due to antineutrophil cytoplasmic antibody ANCA positive vasculitis. Scared still but all out of tears.Started one part of treatment (prednisone) yesterday and will start the other next week sometime ....

[Jayhawker in reply to Maggyf2416]

That’s a start... Now you know what you’re dealing with; treatment can begin.

Jayhawker

[rabbit01 in reply to Maggyf2416]

I know lots of people who have done very well on prednisone. It's great you are getting treatment. I was never offered anything dur to my nephrologist being useless.

[Maggyf2416 in reply to rabbit01]

Do you have a different nephrologist now? If not get one! I’m not looking forward to the side effects of prednisone but it is what it is.

[rabbit01 in reply to Maggyf2416]

To late for me as I am already on dialysis. I do have a different nephrologist but that's only because in UK pre dialysis and dialysis are different departments in the hospital. My first nephrologist was hopeless never prescribed a thing but sadly I trusted their professional judgement. Just typical of my luck to get a rubbish one!

[Maggyf2416 in reply to rabbit01]

Shame on them😞 but I’ve been reading that people have come off dialysis? Below is why I really don’t trust many. I now have a nephew and a niece (nurse practitioner and surgical nurse specialist- only one on MS Coast) and they help me understand and also these support groups with people like you help so much.

10 years ago when this began with my eyes and blood work showed possible kidney involvement, I couldn’t find a rheumatologist here so was referred to USA in Mobile Al. That rheumatologist referred me to a nephrologist but only after telling me I’d be on dialysis in 6 months... the nephrologist disagreed thank goodness. However, because because of the words that rheumatologist said I got my ophthalmologist referral to Ochsner in New Orleans. Went through all tests and more again. Saw eye specialist, nephrologist, urologist and rheumatologist. Came down to positive RA with no symptoms and unknown name for other autoimmune but I had to maintain visits with nephrologist. So I got a referral back to Gulfport where I live. All along i was positive for ANCA vasculitis but blood work (now I understand better) never showed enough kidney involvement to have biopsy. (3 nephrologists = no biopsy until now) saying all this because I can’t help to wonder if they would have biopsied me years ago would my treatment be this aggressive? Could I have prevented getting to this point with diet? I was only told watch sodium which I thought I was doing. I like my current nephrologist but it took my eye doctor to tell me I needed a follow up with my rheumatologist (eyes flared again) - then after several months (thanks COVID) I got in and she ordered the usual tests and called me personally to get on ball and get nephrologist to look at the results. I had just had my follow up in November with nephrologist... anyway, long story long 😊, it was my rheumatologist that really has had me all these years. She is worth the drive to NOLA and will keep up with me and my progress along the way.

I drove people around me crazy for so long, personally lost some friends along the way but I guess they weren’t really friends. I did find out I had celiac disease during this journey but that was at my persistence. That was 7 years ago and when I found out I must continue to be persistent when it comes to my health and drs. (Drove my drs crazy this passed week and will continue if I need to)

Taking prednisone, I realized I wasn’t given any guidance except take with food... so that is my focus tomorrow. Don’t know when I’ll start the immunotherapy...

[rabbit01 in reply to Maggyf2416]

I have an autoimmune condition called IgA nephropathy. Basically an antibody called immunoglobulin A (IgA) builds up in your kidneys causing inflammation in the filter elements (nephrons) which ends up killing them overtime. I also have another autoimmune condition called pernicious anaemia which is where your body cant absorb vitamin B12. I would imagine that there is some connection between the two conditions but medical science has not yet figured that out.

There is no history of kidney problems in my family but my mum had very extreme Rheumatoid Arthritis which as you well know is an autoimmune condition so again I suspect it is linked.

I think you did the right thing when you say you “drove people around me crazy for so long” You have to be you own advocate with this disease.

It sounds like you are doing all you can. Eating more fruit and veg, reducing red meat as much as you can and avoiding salt is all reducing the load on your kidneys. Keep yourself well hydrated with water. Do your best to keep you blood pressure down. Anyway good luck with it all.

[Hidden]

Hi there,I am similar to you but in a different way.

My husband has just been diagnosed with CKD, stage 4. His eGFR is 22 and is currently on Presnisolone but his blood tests after 10 days of steroids were the same.

I just can’t cope with not knowing what is going to happen in the future, I worry about money, my family, our quality of life..I am so depressed and can’t see any positives for the future

[Maggyf2416 in reply to Hidden]

The support groups and family helped me tremendously this week. Am I completely positive? No, but I’ve got a plan now and taking some meds at least. There is financial help so when researching for anything keep that in mind. I stumbled across financial help when looking up rituxin which is quite expensive, my insurance will cover it but there are copays and other costs... but I may qualify for help. I cried continuously most of last week and didn’t sleep so I understand... get your tears out (I’ve been told it’s completely normal) and try to focus, I think my positivity is around the corner and I hope yours will be too soon.

[Hidden in reply to Maggyf2416]

Are you in the UK?

[Maggyf2416 in reply to Hidden]

No US

[Hidden]

What is rixuxin?

[Maggyf2416 in reply to Hidden]

Immunotherapy infusion drug

[Lianelady]

Hi Maggie, I am one of the very rare people in the world diagnosed with Fibrillary Glomerulonephritis. I was diagnosed 4 years ago. Sounds similar to what you have. I was treated with Rituxan 2017. Nasty drug. I went in to partial remission. I just had a 4th biopsy last month and my kidneys are 100% infiltrated with disease and 50% completely destroyed. I completely understand how you are feeling. Its overwhelming. I will start again on Rituxan next week and hope for the best. I have done plenty of research and gone thru many down days. I am very strict with what i eat now. no red meats, no processed foods. If you need someone to chat with or just need advice, message me.

[Maggyf2416 in reply to Lianelady]

Do you take prednisone also? And I’d love to chat! I’m working on eliminating red meat. I have celiac disease so processed food has been pretty much out of my diet for quite some time. Besides grass fed ground beef it’s chicken, seafood and fish. Bought sweet potatoes, asparagus, kale and romaine for this week. Strawberries and grapes also. It’s a start for sure. I still have tears from time to time mainly thinking about the unknown. 😞