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

I have been taking it for the last 10 years...No Prescription Needed...

I (58F) have been at stage 4 CKD since August this year. My story starts back in 2000 when I had endocervical cancer 2b. I had extensive internal and external radiation that fried my bladder. Over the course of 15 years it had become completely ulcerated and I was totally incontinent and having frequent UTI's. For the next five years I underwent every treatment imaginable and after very lengthy discussion, research, second opinions and prayer, we decided on a cystectomy with conduit diversion and Urostmy in May 2020. That day forever changed the course of my life. I had problems from day one after that surgery. The primary issue initially was jejunum syndrome and subsequently AKI and CKD. I ended up with a second Urostmy and two nephrology tubes by December 2020. I had no previous kidney problem prior to this. I stayed at stage 3 until summer 2021 (nephrology tubes removed at my request to to frequent infections adjacent to where the tubes were located). In June, my GFR dropped to 17. It has come back up to the 22-24 range since August. My primary symptoms (which my Nephrologist says is not related to my CKD) is extreme fatigue, weakness, loss of appetite (weight loss of 80 lbs in past 12 months), shortness of breath (bad), PEMS, many antibiotic resistant UTI's. I have been hospitalized 16 times in 23 months). I take Sodium Bicarbonate 650 mg (2 tablets the times daily... and was someone mentioned before they are huge). I also do home IV hydration (1L daily) in addition to constant oral hydration. I also have Crohn's disease which doesn't help matters at all. It was in remission for a very long time but had been building since December 2020 when I had a bowl obstruction following the second Urostmy surgery (hospitalized 21 days that month with a Ng tube... PTSD... As I was determined too weak and my body couldn't take the stress). I started on a 21 day short-term course of Prednisone and Asacol today to alleviate the inflammation. Well discuss what's next in January. My big question here is do we have to wait until we are fully in ESRD or GFR of <15 to get on a transplant list? I feel like I'm walking a fine line dangerously close but not quite there. My Nephrologist has already sent me to Dialysis Education at the local center so that I would "knows" what my options were when the time comes and not be forced to make any decisions in haste. I personally would rather begin that process and get on the lists because it can very well take years and years (if even) before it might possibly become available. I don't see my situation as one that will improve. Heck my GFR dropped from 38 to 17 so fast I was amazed. But only recovered sightly from that steep decline. Any thoughts? Probably a lot of wishful thinking on my part. I just have a need to have hope. (Thank God I have my faith as it has served me well they this trial). I was not scheduled to see my Nephrologist Shaun until late January but I put in a request for an appointment asap. I also have very regular visits with my urologist and gastro (with all records sent to my GP who I have been with since 2000).

@smeegle Welcome to Mayo Clinic Connect! I am away from my home base right now, but wanted to let you know that once you drop to 20% function, you can start getting listed for transplant. There are also people who are able to find a living donor and have a preemptive transplant, without ever going on dialysis. I will answer more completely tomorrow!
Ginger

I would like to know how to get a Preemptive transplant when UNOS doesn’t make adjustments. Have Type 1 for 47 yrs. At stage 4 Kidney failure, GFR was below 20 for a yr. then was 23 and not listed. Also have Enzyme Pancreatic Deficiency and on CREON. Stomach has gone crazy.

@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

Tell me when just watching a patient's organ's decline became the treatment of choice. That seems to be it for nephrologists. We live in the cyber age. People pay billions for a ride to the edge of space. Those with CKD wait and watch until they reach the edge of death. Something very wrong with this picture. All kinds of gadgets invented to help heart function. What about the kidneys. CKD is not some new, exotic disease. Seems to me the nephrology isn't a very creative field.Needs to be a concerted effort to stop the disease in its tracks. Also, nephrologists don't seem to pay much attention until you get to stage 3. At least that's what happened with me. Good luck to us all.

You are so correct! It makes you aware how unimportant your survival is if somehow UNOS gets there act together. The policies when having an underlying condition for example type1 juvenile diabetic for 50 years , stage 5 kidney failure . EGFR new policy adds 4 or more numbers that of course is over 20. EGFR # to me is the formula used last 50 years . Local doctors and my transplant coordinator weren’t aware of new formula. Dialysis isn’t an option. I need a kidney because of for 50 years type1 juvenile diabetic. My EGFR before policy change way below 20. Transplant center implied that numbers weren’t considered because the centers have to be within their evaluation. Hospital numbers. Love some input . Now I’m having severe GI problems weight very low. Longer I wait my organs work overtime and seem to be stressing other major organs . Thank you

Quick note: if they can manage a condition they won’t find a cure. To much money for pharmaceutical companies and doctors with deep pockets. As long as UNOS is run by deep pocket board members and have never dealt with a loved one . That individual isn’t in need of an organ with or without an underlying condition won’t get one. Numbers are what count to them. Underlying condition more high risk. The UNOS site says the same thing 100 different ways. We need more educational individuals to step up and take every scenario in account for all organs. Every loved one deserves to know they are irreplaceable and worthy of saving. Please check out UNOS and board members .

I have read and reread UNOS. It’s interesting that Transplant Cordinator’s do not seem to stay in the know with changes. EFGR was changed couple months ago. They calculate every one the same regarding race. My TC had to get back with me. There is a section in UNOS about needing a transplant sooner than later. Doesn’t matter they always act very by the book and I dismiss . Which means my local doctors also need to calculate EGFR to meet the new standards. The whole process if I live or die depends on if UNOS will ever do the right thing. I have learned that if you don’t have a family member with an underlying condition your chances of survival do not exist. Knowledge is power and the people associated with making educational guidelines are not involving the right people. UNOS needs a wealth of knowledge regarding all kinds of scenarios with educated individuals. You can’t treat an organ transplant the same if someone has juvenile type 1 diabetes and stage 4 kidney failure. Many other underlying conditions that need to be considered. All the the research shows waiting is not an option and results in death!

I have a living donor. We match first cousins. GFR isn’t below 20. Stage 4 kidney failure, Pancreas issues taking Creon and stage 4 kidney failure. Even if my GFR remains hovering at 20. My blood work indicates that my organs are over compensating and taking nutrients from where they can get them. I’m malnourished and bones are brittle due to extremely low calcium and other vital nutrients. I am not thriving. I’m actually not healthy enough to even undergo any kind of surgery. When I started the process of a kidney transplant undergoing surgery was not an issue. Once again GFR wasn’t low enough. My GFR has been extremely low many times. Dialysis’s is not an option. Type1 diabetics need a kidney eventually. When the time comes I will be told you are not healthy enough. My main organs are already showing signs of stress because they are over compensating . My issues are text book and study shows health care system needs to act more aggressively when treating kidney failure. Quality of life sucks and doctors say it’s not because of your kidney. I have every symptom. UNOS is a silent killer and I hope one day someone will hold them accountable. Transplant centers are hesitant to take on patients with underlying conditions in need of transplants. I am worthy and deserve to be treated that I matter. My living donor is thrilled to help. We are on pause which means I’m rapidly deteriorating and time is my enemy. When people suffer from kidney failure and type1 juvenile diabetes health decline is rapid. Two years ago I was running my own business Equestrian Facility . I’m a top athlete in that arena. Look at me today and you would never imagine what I’ve accomplished . I was told do not ride. No muscle, bone density and malnourished. Could break every bone if I was to fall off. When you have a gift and a connection with what you love for 50 years. You would hope that the transplant process would be handled from beginning to end with the same passion. Life is valuable and UNOS and others need to stop making policies for pharmaceuticals and other products that fill deep pockets.