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

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.

@tellron, I want to welcome you to Mayo Connect. I am thrilled to meet you and to congratulate you on your soon transplant anniversary. I am also a liver/kidney transplant recipient - April 2009 at Mayo Rochester for PSC. I live in Kentucky, and I am a bit envious of you for being able to participate in the support group! I actually discovered Mayo Connect because I wanted to meet others after my own transplant, and I now enjoy meeting with patients from around the country and world.

I want to take this opportunity to invite you to participate in the Transplant Discussion Group. Would you be comfortable to share your own experiences as a way to support others who are not living in the Jacksonville area?
Here is a discussion where liver transplant patients are asking questions and supporting each other > Liver transplant support group
https://connect.mayoclinic.org/discussion/liver-support-group/
Here is one that is particularly relevant for transplant parients, especially at this time of year.
What do you do when your temperature goes Up, Up,..?
https://connect.mayoclinic.org/discussion/what-do-you-do-when-youir-temperature-goes-up-up-d/
@tellron, Will you be attending the Support group tomorrow?

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.

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!

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

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

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

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.