Want to hear from others who have Stage 4 Chronic Kidney Disease (CKD)

@smeegle Were you able to get an appointment with your nephrologist like you wanted? It's good to hear you have regular visits with your other specialists, seeing that you have a range of health issues going on for you! My thoughts would be to check with your nephrologist and see about getting started to be added to the transplant list now, like you also mentioned. It sometimes pays to be double-listed, that is, list at the preferred translplant center, and also have a back-up in place. My husband did just that, paying $500 co-pay for the evaluation at the second place, and indeed had his transplant at the second center he listed at! Turns out their wait-list was a bit shorter than the first center! There is an annual "re-up" to see how you are doing, where your function is, and your general health. You can be placed on the list, and tagged as "inactive" if your GFR does not meet the qualifications, but if you suddenly have an issue, you can be moved to "active" and any time spent on the list is applied to your case.

@cathyherman You asked about preemptive transplants so this next part is for you, also. A CKD patient can source out to find a living donor before a transplant is needed, to avoid a sometimes long wait for a new kidney. On the UNOS website https://unos.org/ there is a lot of information you can read through! And we have several discussions here on Mayo Clinic Connect about transplants https://connect.mayoclinic.org/group/transplants/ In my case, my sister was willing to be evaluated to be a living donor for me, but since I have multiple myeloma, I am not transplant-eligible.

Getting in touch with people who are willing to be considered as a living donor can be very emotional, and I would add, be prepared yourself for big swings in your emotions! I hope to hear from both of you, to answer any more questions that come to mind.
Ginger

I have an appt scheduled in early January but have requested an earlier appt. I'm on the wait list for any cancellations. Send that it's more of a priority to me than my Nephrologist. The local labs I use all appear to be using the old GFR formula so that's a bit of a grey area for me. I looked back and my just the GFRs we're 22, 17 & 24. Six months ago was averaging mid to upper 30s. I have one person (F38) hasn't been vetted) who had offered to be a live donor. I just cannot imagine asking her if she still would consider it as this is one of the ultimate gifts of life and a sacrifice on the donor's part not to be taken lightly. She is a long time friend so we may not even match. I think she has an auto immune disorder (lupus or MS... They keep flip flopping on the dx) but otherwise healthy. Never drank or did drugs of any type. Most of the time I feel that getting a transplant is just a pipe dream. My quality of life is pretty dismal =\> 75% of the time. I remain hopeful but not very optimistic.

Just found out I have this disease and would like to know what is the next step for me to take? Do I get a referral to Nephrologist or what do you think?

Just found out I have this disease and would like to know what is the next step for me to take? Do I get a referral to Nephrologist or what do you think?

Hi @frauline, I'd like to add my welcome. I moved your questions to this existing discussion:
- Want to hear from others who have Stage 4 Chronic Kidney Disease (CKD) https://connect.mayoclinic.org/discussion/stage-4-ckd/

I did this so that you can connect with others like @gingerw @anet @veteran @kamama94 @billagreste @sissieann @blessedmamie4 @cehunt57 @pdq1 @smeegle and more.

I also like to know what led to your diagnosis. At stage 4, it’s a good idea to seek the care of a nephrologist (a doctor who specializes in treating kidney disease).

Too ill to help atm - diabetic gastroparesis & narrowing esophagus, in hosp a week, back home unable to cook or even eat if I could cook, am w/o any help bc hosp staff, social workers, & docs & depts can't fire more than 1 brain cell at a time.

Renal function fairly good but suffering from malnutrition.

Nursing home in near future, sadly. Am losing everything incl beloved Service Dog Buckey.

Also, computer crashed and this is a temp one, no longer remember password & too debilitated to set up new one for now.

But sending hugs and blessings to all.
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Too ill to help atm - diabetic gastroparesis & narrowing esophagus, in hosp a week, back home unable to cook or even eat if I could cook, am w/o any help bc hosp staff, social workers, & docs & depts can't fire more than 1 brain cell at a time.

Renal function fairly good but suffering from malnutrition.

Nursing home in near future, sadly. Am losing everything incl beloved Service Dog Buckey.

Also, computer crashed and this is a temp one, no longer remember password & too debilitated to set up new one for now.

But sending hugs and blessings to all.
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My Dear @kamama94. I have wondered why I’ve not seen you on Connect. I am praying that you will be able to regain your strength and will adjust to food prepared by someone else. My heart breaks for the most unfortunate separation from best friend Buckey.
When you get settled, let us know how you are doing. We can use Connect to visit in your room.
Love and hugs❤️💐
Rosemary

Hospital goofed, have no home care, no one to prep food so just a matter of time before lose all self-care ability. Will not be able to afford computer or internet in nursing home. Son-in-law (lots of medical probs & full-time job) and neighbor will care for Buckey. My heart is shattered. Plse let everyone know how much I have enjoyed being a part of connect and how much I appreciate our friendships.
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