Connect
← Return to Want to hear from others who have Stage 4 Chronic Kidney Disease (CKD)
Discussion
Want to hear from others who have Stage 4 Chronic Kidney Disease (CKD)
Kidney & Bladder | Last Active: Jun 1 4:57am | Replies (216)Comment receiving replies
@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
Replies to "@smeegle Were you able to get an appointment with your nephrologist like you wanted? It's good..."
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.
Connect
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.