Kidney Transplant

[K4kamran]

Hi everyone… I’m 36 years old male from Australia and have kidney failure last month. I’m currently on dialysis. The average wait time for kidney transplant in Australia is 2 to 7 years. My doctor told me i can get transplant early due to age factor. My question is that can someone explain their transplant experience. As i am scared of surgery. And after the surgery what are the chances of getting better? any health issues which can effect life quality and also precautions before surgery. I don’t know when i get the transplant but i was curious thats why asking. Thanks

[Bassetmommer NKF Ambassador]

A transplant is giving your life back to you. The process to get one can be long and takes time. So you should start it soon. The sooner you are on the list, the sooner you will get a kidney. The first start is to see if anyone you know will donate one of their kidneys. That is the fastest way to get one. They do not have to be a perfect match. There is a program explaining it all on the National Kidney Foundation website.

The evaluation process is multiple tests from top of your head to your toes. There are chest xrays, and cardiac tests and blood draws. That all should be explain in detail from the transplant center.

I have not had the surgery, but I am on dialysis. I have been on my list for three years. I cannot wait for the surgery. Again, each center is different as to what to expect. The recovery is pretty quick, like less than a month. But you have to take a lot of medications and see the transplant center for sometime. I am not sure if it is the same there as it is the USA.. Call them and find out.

Good luck to you and I hope you get a new kidney soon.

[Zbiguy]

Hello K4kamran

I had a kidney transplant 1 1/2 years ago and feel so much better then before transplant. Bassetmommer advice is right on lots of test prior to transplant. In the USA they have what is called a paired program so if your donor isn’t a good match the kidney is put in the paired program. That speeds up the process I had a kidney transplant 3 months after entry into the program. There are a lot of drugs post transplant but after a year they are way less then the beginning. The surgery went without a problem and without much pain at all. I was 63 at time of transplant so you have youth on your side. Your Nephrologist can prepare you and advise on how to take care of yourself prior to transplant. Good luck on your journey.

[Ballspinner]

Hi, I had a living donor transplant after 4 years of hemodialysis at age almost 69. I had a slowly progressing genetic form of kidney disease (PKD) and didn't start dialysis until about 15 years after diagnosis. I started the process of getting onto the transplant list the year before I started dialysis and was approved the same month that I started dialysis. Doake sure you have good health insurance to pay for the transplant and meds. You will have comprehensive testing just to get on the list, not only physical but mental and social as well. They have to make sure you will be compliant in taking your meds and have social support at home to get you to appointments and help in recovery. For me, I wasn't really scared of the surgery since I had already had other surgeries during my life and knew what to expect right afterwards. Luckily my new kidney pinked up and started working immediately and I was urinating gallons, so it seemed! My main problem was nausea from the anesthesia ( a med helped) and weakness. I had had a partial hip replacement 3 months earlier and so I was a fall risk and need to use a walker to walk around the nurse's station. I couldn't use opioid pain relievers because they made me sick, so they found a different kind of nerve pain reliever. Just keep asking until they get what is right for you. You should expect soreness in the new kidney area ( they put it under your muscles in the groin area to the side of your stomach) for about 4-6 weeks. The pain gets better with time. You will be started with a lot of meds, some of which drop off at 3 months, others at 6 months. They will get up to walk the day after your surgery and try to do so at least 2-3 times a day in the hospital. For me, the first sign that I felt better since dialysis was that my face pinked up and I looked healthy! It's a slow process to really feel better, but you can hasten it by walking and gentle exercise. Follow the guidelines the doctors give you and learn to organize your meds so that you take them on time every day. Also , drink as much water every day that your doctor recommends. You will have a lot of follow up appointments at first, then gradually they will lessen . I now have appointments every two months as well as blood and urine tests three and a half years later. You will get your life back, but have to be more careful about cooking and eating safely, getting your vaccinations, and choosing social activities that are safer due to the immunosuppressive drugs you will take for the life of the transplant. Hang in there and take good care of yourself!

[ShyeLoverDoctor]

On average transplant patients live longer, healthier lives and of course are free from dialysis.

However, transplant is not for everyone! You may be disqualified due to medical conditions, Or you may choose not to have one. It’s very individual.

The fact is, most people on dialysis are dead within 5-10 years of starting, and that statistic hasn’t changed in a long, long time. However —- it also depends on how old you are when you start and what other medical conditions you have. Some people live 20 years or more on dialysis!

Transplant medications increase your risk of cancer, namely lymphoma and melanoma, the deadliest type of skin cancer. To some people, they don’t want that and would rather stay on dialysis.

Most transplant patient are on steroids for life to prevent rejection, which can of course cause weight gain and diabetes. Fully 20% of all people who have a transplant, end up with diabetes. Steroids will eat away at your bones.

. The first year post transplant, is hard. They do not truly warn you. They assume every patient wants off dialysis so badly that they won’t care. YES, they will fully inform you of the risks. AND the drug side effects. But you don’t just get transplant and ride off into the sunset. The medication dance never stops, ever. Being immune suppressed is no picnic and there are a lot of diseases most people get during their fist year - the BK virus which can kill off the new kidney or CMV, cytomegalovirus, which can kill you. Or EBV, Epstein Barr Virus. You have to be very careful not to get food-borne illness - say goodbye to sushi, rare meat, buffets, salad bars. You might get an illness - Covid-19 among others - that may not kill you, but it will kill the new kidney.

I highly recommend getting evaluated for transplant. They will explain all of this to you. Just because you are put on the list, does not obligate you to get a kidney. You can turn down any kidney they offer.

You may be OK on dialysis now, but it’s still a long way down. Dialysis doesn’t remove all waste products from your body, they build up. You will end up having to take binders (Drugs that attach to certain substances so your body won’t absorb them ) with each meal, you can end up itching all over your body, etc.

Remember dialysis only replaces 10% of what healthy kidneys do! You are still quite sick. They are not a full, 100% replacement of normal kidneys. Perhaps no one told you this.

[K4kamran in reply to ShyeLoverDoctor]

Thanks Shye for all information. Your comment is not encouraging anyhow I appreciate it. Everyone has right to live if they can. At least a try whether it’s dialysis or transplant because there is no other way.

[ShyeLoverDoctor in reply to K4kamran]

Yes my second paragraph says “Transplant is not for everyone.” It’s not a cure. Like dialysis it is a form of life support.

You did ask what surgery is like. Everyone has a different experience. The operation for me went fine but one week later I had a complication that 1 in 10,000 has, was back in hospital for four days and they almost had to removed my entire colon. Being re-hospitalized is common.

I had already had general anesthesia four times. I’m not very afraid of going under. I’ve had my gallbladder removed , uterus removed. I’ve never had any bad reaction to anesthesia , never had voniting like some do. The operation was the easy part.

[K4kamran in reply to ShyeLoverDoctor]

Sorry to hear about the complications you had after the surgery. Can you please tell me about your current situation of transplanted kidney? Is it working well?

[ShyeLoverDoctor in reply to K4kamran]

My last creatnine was 1.00 with a GFR of 67. I have no signs of the BK virus, CMV virus, or EBV, all of which are an issue for transplant patients. No protein in urine. This is pretty darn good. Transplant doctors are ok with creatnine up to 1.5, GFR in 40s. Kidney is doing well. They told me I had “a younger donor” but nothing else. I wrote three letters to donor family who did not write back but that’s very very common. So YES, the kidney works well. IT WAS ALL WORTH IT AND I WOULD DO IT AGAIN.

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My main problem is high blood pressure which is being caused by my immunosuppressant drugs. That is quite serious.

The other issue is my immunesuppressant drugs can cause melanoma and I had a melanoma 6 months post transplant. However I also had 3 prior to transplant. It’s not like I only had it post transplant.

Also on steroids I have gained 20 pounds. ALL THREE of my doctors said on steroids patients again 15 to 20 pounds in the first year. 99% of all kidney transplants patients I know have had large weight gain. the only one who has not is fanatical about every bite he eats and exercises religiously. He was once 200+lbs about eight years ago, lost the weight and is very vigilant about keeping it off.

My blood sugar now runs high and I may end up with diabetes. My nephrologist recommends either ozempic or having weight loss surgery. Fortunately I started paying attention to what I eat, try to exercise more and my weight gain has stopped.