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.

Hi @mignon and welcome to Mayo Clinic Connect. Good for you for seeking a second opinion. You've waited almost 3 months for your appointment at Mayo Clinic and now that you're appointment is only 2 weeks away, anxiety is setting in. We can help! I'm calling in the support brigade. Please meet @trishanna @rosemarya @2011panc @kamama94 @cehunt57 @gingerw and others who I'm confident can give you a virtual hand.

I always say, put your worry into action. Let's start by creating a list of questions you have for the specialist. What questions would you like to ask?

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I think one of my biggest questions surrounds what kind of quality of life I can look forward to. I have a sister who is willing to donate her kidney but she has a different blood type than me. I do know there are organizations where there are “kidney swaps”. I’ve done a great deal of reading but it almost regardless of it you do dialysis or transplant your quality of life is going to be quite poor.

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@mignon

I think one of my biggest questions surrounds what kind of quality of life I can look forward to. I have a sister who is willing to donate her kidney but she has a different blood type than me. I do know there are organizations where there are “kidney swaps”. I’ve done a great deal of reading but it almost regardless of it you do dialysis or transplant your quality of life is going to be quite poor.

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@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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@mignon, even with a medical background or maybe because of it, I always take a list of questions to ask the doctors. Fortunately, I also can email them at their clinics with questions as they occur to me between appointments. If you can think of things you want to know and can write them down to take with you to your appointment, it might be very helpful. And please come back and tell us what you find out. We care.

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@mignon . I was hoping that @kamama94 would respond, and she has – beautifully! I do not have any particular advice at the moment. I do hope you will let us know what Mayo has to say so that we can contribute practical suggestions. For example, @kamama94 has a neat cookbook available to help you with diet, etc. I'm 80, have lost a kidney and breast to cancer, and this spring, was diagnosed with type 2 diabetes. Like you, I asked the doctor how come diabetes now. He said it's hereditary, but I doubt it. Anyhow, my kidney is Stage 3. I'm now learning to juggle three diets. As I like to say, I can eat anything so long as it's not food!!! Strangely enough, my health problems, while annoying, do not cause me any serious stress. Think that might be because I'm also caregiver to my husband, who has Dementia – a really terrible disease. Don't have time to worry too much about any one thing. My goal is to care for my husband as long as possible, and when I no longer can, we've a stack of crossword/coloring/puzzle books we plan to bring with us to the nursing home!! Need some quality colored pencils, if anybody can suggest a brand! Seriously, I do think the busier one is, the better off one is. Exercise of some sort, diet, family, friends, life! Today was a beautiful autumn day, and there are only two months and 29 days until the first broadcast of a Cardinal baseball game, and even though I'm a Cub fan, I can't wait to listen. You'll be in our thoughts and prayers. This much I can promise – whatever happens at Mayo, you'll be surrounded by lovely, caring folk, and really, it won't be as bad as our imagination tells us. Take care!!!

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@mignon

I think one of my biggest questions surrounds what kind of quality of life I can look forward to. I have a sister who is willing to donate her kidney but she has a different blood type than me. I do know there are organizations where there are “kidney swaps”. I’ve done a great deal of reading but it almost regardless of it you do dialysis or transplant your quality of life is going to be quite poor.

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@mignon Let me add my welcome to our group, also. I have lived with kidney disease for many years, and was diagnosed in 2015 with a very rare kidney disorder. Currently my GFR hovers between 32-37%, so it is classified as stage 3b. As @colleenyoung mentioned, making a list of questions up is important. Have there been any illnesses or maladies that could have contributed to a decline in your kidney function? If you have copies of your lab work for the past couple of years, that will be helpful to have with you. If you have a partner or someone to accompany you, a second set of eyes/ears can prove invaluable. Take the time to write down the answers you get from your questions, and make sure you understand the verbiage. Your quality of life is what you make it, in my opinion, at any time in your life. My husband continued all his regular activities over the 5.5 yrs of dialysis before transplant, including camping, traveling, motorcycle rides, etc.! There is a lot to do being proactive, like @kamama94 said. We are here to help you through this stressful time, and will endeavor to set your mind at ease. It is normal to be anxious; we've all been there! Ask away, we care.
Ginger

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Hello @mignon,

I'm pleased to hear that you will be seen at Mayo. I can understand your anxiety at this point. I would encourage you to read a discussion on Connect about how to approach an appointment with a new specialist. Here is the link to that discussion,
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Will you post again and let me know how you are doing?

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@mignon, Good Morning. I understand your concerns and questions regarding your kidneys. I would like to share some information with you as you prepare for your apppointment.
I like this podcast because Dr. Ladan Zand, a Mayo Clinic nephrologist, discusses chronic kidney disease and offer tips to keep your kidneys healthy, as well as conditions that put people at risk for kidney disease.
https://connect.mayoclinic.org/page/podcasts/newsfeed-post/national-kidney-month/

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@trishanna

@mignon . I was hoping that @kamama94 would respond, and she has – beautifully! I do not have any particular advice at the moment. I do hope you will let us know what Mayo has to say so that we can contribute practical suggestions. For example, @kamama94 has a neat cookbook available to help you with diet, etc. I'm 80, have lost a kidney and breast to cancer, and this spring, was diagnosed with type 2 diabetes. Like you, I asked the doctor how come diabetes now. He said it's hereditary, but I doubt it. Anyhow, my kidney is Stage 3. I'm now learning to juggle three diets. As I like to say, I can eat anything so long as it's not food!!! Strangely enough, my health problems, while annoying, do not cause me any serious stress. Think that might be because I'm also caregiver to my husband, who has Dementia – a really terrible disease. Don't have time to worry too much about any one thing. My goal is to care for my husband as long as possible, and when I no longer can, we've a stack of crossword/coloring/puzzle books we plan to bring with us to the nursing home!! Need some quality colored pencils, if anybody can suggest a brand! Seriously, I do think the busier one is, the better off one is. Exercise of some sort, diet, family, friends, life! Today was a beautiful autumn day, and there are only two months and 29 days until the first broadcast of a Cardinal baseball game, and even though I'm a Cub fan, I can't wait to listen. You'll be in our thoughts and prayers. This much I can promise – whatever happens at Mayo, you'll be surrounded by lovely, caring folk, and really, it won't be as bad as our imagination tells us. Take care!!!

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@trishanna This is a bit off-topic in this discussion, but I just wanted to address your diabetes comment. I was at my endocrinologist recently for my mild diabetes – diet controlled, A1c 5.8. He is a highly regarded endocrinologist; he also said that diabetes always has a genetic component, thus hereditary. He said that the genes that control it can be weak in some people, as mine apparently is – no one in my family was ever diagnosed with diabetes before. Of course in my parents day, they did not do as much testing as they do now, plus I was heavier than anyone else in my family had ever been.

@mignon I would be remiss if while I am here I did not also welcome you. I have nothing to add, never having had kidney problems, but you have some great thoughts from many people here. I hope all goes well at your upcoming appointment.
JK

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Are you located in Jacksonville FL? If you are, we have a support group that meets once a week from 11:00 to 12:00 noon. There are folks with liver and kidney transplants and people waiting for transplants. We can help with answering any questions that you might have. We also have a Mayo social worker there to keep everything in order. We meet in the 1050 Cannady Chapel. Our group name is Second Chance Support Group of Jacksonville. Hope this helps you out. I had a kidney and liver transplant Dec. 28 2016. I was very sick prior to transplant, dialysis 3 days a week 4 hours per day, in and out hospitals for 2 yrs. Then I went to Mayo! Awesome organozation. Only had 2 days left according to doctors unless I recieved my organs. Mayo procured them, I was transplanted. Had a couple of hiccups during 1st year but since then, life is good. My numbers are perfect. There is life after transplant. You can do it!

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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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@tellron

Are you located in Jacksonville FL? If you are, we have a support group that meets once a week from 11:00 to 12:00 noon. There are folks with liver and kidney transplants and people waiting for transplants. We can help with answering any questions that you might have. We also have a Mayo social worker there to keep everything in order. We meet in the 1050 Cannady Chapel. Our group name is Second Chance Support Group of Jacksonville. Hope this helps you out. I had a kidney and liver transplant Dec. 28 2016. I was very sick prior to transplant, dialysis 3 days a week 4 hours per day, in and out hospitals for 2 yrs. Then I went to Mayo! Awesome organozation. Only had 2 days left according to doctors unless I recieved my organs. Mayo procured them, I was transplanted. Had a couple of hiccups during 1st year but since then, life is good. My numbers are perfect. There is life after transplant. You can do it!

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@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?

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@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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