Stage 3/4 Kidney disease: I need support before my appointment

Posted by mignon @mignon, Nov 24, 2019

I got diagnosed with stage 3 to 4 kidney disease about 3 months ago. Although my GAF was around 30 all others measures were well within appropriate limits. I asked my nephrologist why this had happened as i’ve Always been healthy and all previous blood work over the years had been good. (I’m 71 years old). He said he had no idea why and at that moment I decided to try and get a second opinion at the Mayo Clinic. The appointment I was given was for 3 months in the future and is now 2 weeks away. I’m asking for some words of encouragement from anyone who has been down this road. I have no idea if i’ll Have a future and if so, no idea at all what it might look like. Now that my appointment is only 14 days away, my anxiety level is definitely on the rise. Thank you for anything you can do.

@kamama94

@mignon, welcome!

I waver between Stage 4 and 3b and cannot qualify for a transplant even though I have only one kidney left with about 33% function and must follow a very strict (but delicious!) renal diet.

I have other medical conditions and am disabled and in a wheelchair. I no longer can crochet or play the piano or do oil paintings but I still can write novels and cookbooks and be of service to others in small ways (including a 12-step recovery program) and I gotta tell ya, my life is a hoot!

Days are filled with laughter and friends, four-legged as well as the two-legged kind, and nights are filled with pleasant dreams.

There are many things I no longer can do but plenty I can do and still enjoy.

None of us really knows how long we have on earth so we can cherish each day that comes to us even if it brings troubles as well as joys.

If I live long enough, I'll eventually need dialysis and I'm already planning what to do while I'm in the recliner getting my blood cleaned, besides take a nap, that is. I'm sure I'll find something to enjoy during what can be a time-consuming and uncomfortable process two or three times a week.

Meanwhile, I have beautiful friends here. This is a wonderful group, we listen to one another and support each other and exchange information and we're so glad you joined us.

People can live a very long time in stage four and still do many things they enjoy. so there is hope!

Once again, welcome and journey with us!

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Thank you, Kamamama, for your incredibly moving and supportive post! Would that all patients first diag. with a chronic disease had the benefit of your reassurance and hope .

Mignon, With my recent CKD 3 diag., my 1st thought was: Oh, No! This is a death sentence! Finding this support group very quickly calmed my initial fears and has continued to arm me with suggestions and resources that I can trust and follow.

One tip for that visit in addition to other excellent ones provided by others is that I've found that making a copy of my questions & labs for both the doc and me to follow helps tremendously. Nephrologist asked me to hand her my just requested copy of 1st lab results and although she covered the report thoroughly, it would have been most helpful for me to also have a copy to mark and highlight.

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So glad time is closer for you.hope you have all the qeustions,and get all your answers. Cant wait to hear how things turn out!

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@mignon

Thank each and everyone so much for all of your suggestions and most of all you kindness and thoughtfulness. It has already helped. I’ve never known anyone with serious kidney disease and I am so grateful to read each of your comments. I am also extremely grateful to have gotten an appointment at Mayo. The earliest appointment was in Minnesota. I live in NYC but know this is the best thing I could be doing for myself. I look forward to staying involved with the group and hopefully at some point being able to give support and encouragement to others.

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Welcome @mignon! I have nothing to add to the information all of these wonderful people have offered.
I was diagnosed in August of 2016 and quickly progressed from Stage 2 to Stage 3, now 3b. Mayo Clinic Rochester has been my Friday ritual since moving back to Minnesota in 2018. Everyone there has been so supportive and caring. I learned the more information I can provide them, the easier it is for them to rule things out! You will be glad to be there.
Susan

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Please relax as anxiety will not help the kidneys. I am stage three with a GFR of 35. When I was told this I knew that I did not want to go on dialysis so: I started a kidney diet also with a very low salt intake. Three months after starting this diet my GFR went to 42 and let it be known I am 82 years of age. Wow! It was easy to live without the salt. One can get used to it easy enough. Using much fresh fruit and vegetables and no prepared foods.The nephralogist I see says he can do nothing for me but wait for the GFR to get low enough for dialysis. (I think I should look for another doctor). Any way it is really up to you. We here at the Mayo do care for you so let us know how you are doing as the time goes bye. Peach

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Hi Mignon. I can understand your circumstance, I am soon to turn 62yrs old. I have for the last 2-3 yrs have had multiple health issues. I just had a work-up done, and I was informed that I had stage 3 chronic kidney disease, I was somewhat shocked because I was wondering what happened to stage 1and 2. Well to make a long story short, I was Sharing my issues with my pastor, he told me that he understood the human side of it with the worry and all and that people need to look to what God is doing in our lives, but the first and foremost thing is that, we need to remember the promises that God has given us, and always to trust and
believe. Mignon, I hope that this may have helped you. I know that our God will work through all the doctors hands. I hope that you did not mind me Sharing this with you.
Blessings,

raven

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@raven

Hi Mignon. I can understand your circumstance, I am soon to turn 62yrs old. I have for the last 2-3 yrs have had multiple health issues. I just had a work-up done, and I was informed that I had stage 3 chronic kidney disease, I was somewhat shocked because I was wondering what happened to stage 1and 2. Well to make a long story short, I was Sharing my issues with my pastor, he told me that he understood the human side of it with the worry and all and that people need to look to what God is doing in our lives, but the first and foremost thing is that, we need to remember the promises that God has given us, and always to trust and
believe. Mignon, I hope that this may have helped you. I know that our God will work through all the doctors hands. I hope that you did not mind me Sharing this with you.
Blessings,

raven

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I would like to know how god will handle the endochronologist who did not let me know of my failing kidneys for two years. When I noticed the GFR being at 35 and addressed this with the doctor he said "don't worry". I immediately changed doctors but the damage was done. I have put myself on a very strict diet. The rest of this story is still happening. I did notice that this doctors NP was handling most of his responsibilities. And the saga continues.

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