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

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?

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.

@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!

@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.

@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!!!

@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

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?

@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/

@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

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!