Stage 4 CKD and getting on transplant list

[LaVMills4]

Hi, I am new to this community and am interested in knowing more about Stage 4 CKD. My doctor does not want me to go on dialysis but to be put on a kidney transplant list. What are the types of things that need to be done before getting on a transplant list

[Ladybug_05]

Hello! I'm in end stage renal failure (was recently stage 4) with my GFR at 9% and I'm on Perotineal Dialysis as well. What percent function are you at? The transplant list is a very long process and it is likely that you will need dialysis to make it to transplant.

Before you do anything, your nephrologist will need to refer you to the hospital that will be doing the transplant and they will require classes and tests before deciding if you are a good candidate for transplant. I had to get an echocardiogram, x-ray of my upper body, reproductive health exam (papsmear for me), eye exam, dental exam and a psych evaluation on top of a total of 26 viles of blood taken and 2 cups of urine. Depending on your age, a colonoscopy may be needed as well as a heart stress test.

They also have you do an in-person evaluation with a social worker, nutritionist and their nephrologist while taking some other tests as well to determine physical fitness (for me I had to walk up and down 3 flights of stairs). They look for things like diabetes, hypoglycemia, high blood pressure, mental instability, weight issues and more to determine if you can handle the stress of transplant.

Often times, stage 4 ckd is when symptoms will start showing up if you haven't already started showing symtpoms. Things like fluid retention (edema), fatigue, concentration and memory problems will become apparent. You can also experience a metallic taste in your mouth and your breath will not be pleasant, due to the build up of toxins in the blood.

Overall, you will begin to feel sick. When I was nearing the end before needing emergency dialysis, I had all of those symtpoms in a matter of days and I went from being able to function perfectly fine by myself to being unable to walk due to muscle weakness and fatigue. Also, if you end up with sporatic chest pain, call you doc IMMEDIATELY. It is a cardiac rub and means that your kidney failure is affecting your heart's ability to function properly.

Although dialysis is not anyone's first option, it may be necessary and I would definitely keep it in the back of your mind. I do Perotineal Dialysis (PD) at home on a cycler at night. PD is when they put a permanent catheter into your abdomen and use the Perotineal cavity and lining to do dialysis. You can do it during the day (4x a day) and then switch to nights, which is what I'm doing with a cycler (machine that does the exchanges). Hemodialysis is also an option, which requires more preparation (4-9 months for fistula maturation) and is done in-center 3x a week or at home 6x a week.

I did not plan on dialysis and ended up needing to do hemodialysis through a chest catheter for 7.5 weeks. It is not a fun time and I really hope that you keep your options open and talk to your nephrologist about your expectations. Wait times for a deceased donor kidney are years long depending on the blood type, so forgoing dialysis may not be practical.

I hope this very long blurb about transplant, CKD and dialysis was helpful! Good luck

[KelliC_NKF]

Welcome! It is great that your doctor is referring you for a transplant! The evaluation process can take some time and its best to complete it as soon as possible so you can start accruing time on the waitlist. The fastest way to get a transplant is to find a living donor. You can find information about the evaluation process, surgery and tips for finding a living donor here: kidney.org/atoz/atozTopic_T...

[KelliC_NKF in reply to KelliC_NKF]

You may also want to check out our Kidney Transplant Community; healthunlocked.com/nkf-kidn...

[TaffyTwoshoes27]

First, my Transplant Coordinator at the Hospital in charge of my transplant and evaluation said you DO NOT have to be on dialysis to be evaluated for transplant. Second, I believe your doctor has to start the process by contacting his/your preferred transplant facility. The Transplant List is done by regions, so, for example, I live in GA. There are 3 hospitals that do transplants. As long as I evaluate and am registered at one of the facilities, I did not need to qualify or evaluate at the other two.

The guideline my hospital told me is that patients must be NO farther than 4 hours travel to the transplant facility. I think that is the norm everywhere.

BTW: If you qualify to be on the transplant list, the facility will require that every two years you must re-evaluate (take all the medical tests required by the facility) again to remain on the list. Compliance with your diet, dialysis (when/if your doctor places you on it), doctor and clinic appointments, blood tests, etc., is paramount. The transplant hospital has the discretion of removing candidates from the List if the patient is not compliant.