Assistance required - CKD (FSGS): Hi Everyone... - Kidney Disease

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Assistance required - CKD (FSGS)

Jsea profile image

Hi Everyone,

I am currently in stage 5 of CKD. (FSGS) I am trying to find others in a similar situation to get an idea of what I should be feeling / experiencing. I realize not everyone will be the same but there should still be some common similarities. I feel like this will help me relate and potentially let go some of the frustration and/or depression.

I was diagnosed with CKD roughly 5 years ago. (@ 35 yrs of age) Everything was relatively fine (outside of a lower than normal GFR) until February of last year when I suddenly went suffered from Acute Kidney failure. Thankfully my Kidney function was restored but my GFR fell from 52 to 18. Since then, my GFR has slowly declined to the current level of 10-12. Now I am waiting on transplant testing / my GFR to fall to single digits for a transplant or dialysis.

Is there anyone else currently in Stage 5? (or even late Stage 4) If so, can you describe a normal day or what you experience in regards to pain / difficulties? I was diagnosed with Focal segmental glomerulosclerosis (FSGS) but I am interested in responses from anyone with all types of CKD.

I also have an ulterior motive as the specialist(s) believe the CKD is a secondary, if not a tertiary, condition but they are unsure of the primary. If I can compare different symptoms and group the similarities, perhaps I can see what is not common to assist with a determination.

I am at my wits end contending with this disease. My quality of life is beyond sub-par and I find myself exploring the darker parts of my mind because of this. I don't want to let this continue / fester as it will only hurt me, and my loved ones, in the long run.

Thank you to all that take the time to read & respond.

13 Replies

Hi Jsea,

I'm at stage 5, my last GFR is 9. I'm in my early 40s, still working full-time. Generally feels ok but when I am out under the sun for too long, I get tired and short of breath. So far, it hasn't been very painful. I got my PD catheter surgery and that wasn't too bad, a bit uncomfortable and hard to move around for a week but that's all. Will be in dialysis training in earnest later this week, so don't know much about how that would feel at the moment. My main problem right now is trying to figure out what to eat. I don't normally cook and trying to remember what food has potassium and phosphorus.

I only started joining this group about 2 weeks ago and so far everyone has been very supportive and helpful.

Jsea profile image
Jsea in reply to curiousmind2019

Do you mind me asking what type of CKD you suffer from? How are you Creatinine levels? As well, how do you feel in the morning?

Good for you sticking it out and continuing to work FT. I am not sure if that is "the norm" but I feel like it's an accomplishment considering the circumstances. I still work FT as well but the last couple of weeks have been the worst I've experienced and it has definitely impacted my job performance / attendance. Thankfully my job isn't taxing / laborious but getting there is more of a hurdle then the job itself.

I will have to create another post to describe what I am experience to compare it to others. I have a feeling some of my issues are either rare or ultimately unrelated to the CKD.

I haven't had the surgery for dialysis yet; my nephrologist has briefly mentioned it but nothing more.

Do you have a potential donor?

Good luck and best wishes!

curiousmind2019 profile image
curiousmind2019 in reply to Jsea

Hi Jsea

Glad your job is not too laborious. Yes, getting to work can be more tiring sometimes. I look forward to your post on how you are feeling.

My ckd started from iga nephropathy that we suspected back when I was a teenager and was officially diagnosed when i was 20. My creatinine is 5+.

I started PD dialysis training today. It wasn't too bad, can't really feel the liquid going into my tummy. I think all the waiting to start dialysis was much more nerve wrecking. I'm glad the process is under way.

Honestly, can't wait to have longer doses of dialysis as my nephrologist said that I will feel better. Less shortness of breath and less fogginess in my head.

Take care and positive thoughts!

Hi Jsea, I too am in stage 5 with GFR 12. I was diagnosed 10 years ago when my egfr reading was 260. I managed to slow it with a good renal diet and lots of time at the gym. I am 85 years old and all is well except for the Kidney thing. The only signs I have is a little tired at times but no pains or discomfort of any kind.

It's a hard blow at your age but it certainly not a death sentence. For you it's a temporary thing till you get a transplant. The reason this old soldier is responding to you is for what you said."I am at my wits end* * * * * darker parts of my mind* * * * don't want this to happen. ect.

When you let those thoughts enter your mind it will only harm you. I would say you should eat a good renal diet and find a good gym and keep your mind occupied. By the time your my age, they'll have little digital kidneys.

Good luck Jsea and keep a good thought.

BarronS profile image
BarronS in reply to vertish

Hi. What was your reading 10 years ago? Was it a 26 or 260?

vertish profile image
vertish in reply to BarronS

Hi BarronS, I was diagnosed May 2008 with GFR 260. My last test was January 2020 with GFR 433. The Ontario lab testing system changed to: CKD-EPI 2009 equasion and that puts me at 10

BarronS profile image
BarronS in reply to vertish

Do they know what the underlying cause was?

Bassetmommer profile image
BassetmommerNKF Ambassador

Hi Jsea,

Life is what you make of it. Yes, yours will have challenges ahead but you can and I hope will have a wonderful life. When you face a diagnosis as we all have of some degree of CKD, it is a huge blow. You will grieve the life that you had because it will change. This is normal. Let yourself get used to the changes and challenges and then I hope you will find a new normal.

I am stage four and my CKD was brought on by medications. I had a lot of kidney stones that were created from high uric acid. Then things got even worse because I developed diabetes. I was in my 50's when this all started. Now I stage four. But I have been holding my values since I changed my diet and hope to maintain where I am for a long while.

Along with this community, there is a peer mentor program designed for Kidney patients. It is a place to have a mentor assigned to you who will be there for you specifically with your questions and support. We do not replace your medical team, but are patients who are trained to listen and be supportive....because we walk the walk.

It is free and they will match you with someone who has similar issues. It is really a nice thing to do and know someone is in your corner.

Here is the number 855-653-7337 and here is the website to sign up

The peer mentor program bestmommer mentions sounds like a solid idea. Prior to becoming CKD4, my bladder was removed due to cancer. I became an urostomate. I have a stoma (outlet) an inch or so from my navel where urine is emptied into an external pouch. For two years, I have become a mentor for BCAN (Bladder Cancer Advocacy Network), and I have been a member of an ostomy support group, one of over 300 local ostomy support groups belonging to the UOAA (United Ostomy Associations of America). It really helps! I've also attended a couple of meetings of a local kidney support group.

WYOAnne profile image
WYOAnneNKF Ambassador

Yes, you do need to keep a positive attitude. I too was diagnosed with FSGS and am now 19+ years post transplant. Besides volunteering on this site as an "Ambassador", I also received training and am a "Peer Mentor." I agree with "Bassetmommer" that this program could really help you.

Not everyone deals with CKD in the same way. The Peer Mentor program is set up to help those going through this kidney journey because of this. We are not medical professionals, but can answer your concerns and questions from our own experience.

Also, have you been referred to a renal dietician? Many have been able to stabilize their CKD by following a kidney friendly diet and keep up with their water intake.

Good Luck to you!

Hi Jsea

I was diagnosed in 2004 with FSGS. It was very aggressive.

I had a living related kidney transplant in 2006. Unfortunately the FSGS came back and I have been on dialysis since 2007.

Tiredness and fatigue, nausea and feeling cold due to anemia are some symptoms I remember having. I still have some of them since I am on dialysis. Any other questions let me know.

Im at stage 3B, my GFR is 40. I cant say much about stage 5 but i can relate to havin multiples of health issues. I was diagnosed w hypothyroidism when i was 25yrs old. Ive had the hypertension since i was a teen. The CKD at the time of diagnosing, my GFR was 40. When i saw the nephrologist the 1st time my numbers were at 72. An then went back to 54. Not only do the CKD make me tired, my thyroid doesnt help it. The last time i saw my PCP, she informed me i was low again. She had me do an EKG cuz my blood pressure has been in the hundreds for both. Its like playin russian roulette tryin to figure out which one is actin out.

Bet117 profile image
Bet117NKF Ambassador

Hi Jesa,

Welcome! You have come to the right place for support as this is a community filled with wonderful, knowledgeable and supportive people.

To begin, your feelings of fright, despair and confusion are absolutely normal. There isn't a person who heard the word "kidney" and didn't feel the way that you do. However, the important thing to remember is that although kidney disorders are not curable, they can be managed.

Putting together a medical team who are willing to communicate openly with you and your family in plain language as well as communicate with each other to partner in your care is essential as they are your foundation. Due to your drop, I would ask your doctor the questions that you are seeking answers to.

Although I don't have fsgs, I do have an autoimmune kidney disorder, so I know the frustrations that you feel and face.

Despite your being at stage 5 the important keys are working with your nephrologist and putting together an action plan which suits your needs; this will include treatments, medication and diet which is the big key.

If you haven't already, make a list of what you are eating and bring it to a scheduled nephrologist appointment for discussion.

Your doctor should shed some light for you and or refer you to a renal dietician in your area who will put together a list of foods which are healthy, nutritious and appetizing based on your labs, if they haven't done so already. Eating well with low protein, low sodium, potassium and phosphorous are very important as well as water consumption.

If at all possible, bring a family member with you to your appointments to scribe for you as it takes pressure from listening and trying to remember everything that is discussed. Two pairs of ears are better than one and will help with support.

Print out your labs from your patient site and check off any flags and note questions for your doctor so that you don't ever leave the office wondering.

Until your doctor tells you bleak news. don't go there. Think positive and ask what can be done to keep you as healthy as possible and cope.

The Peer Mentor Program that Bassetmommer mentioned may also be another consideration as they will match you with someone who has "walked the walk". You are right; everyone is different and their bodies function and are receptive differently to different things.

Just remember that you are not alone; reach out to any one of us at any time and we will always reach back; be it a post or a Private Message.

Be positive and proactive!

In your corner!


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