transplant

[Savreen1]

Hello Everyone, last week I had appointment with my nephrologist. My gfr 23 he advised me get prepare for transplant procedure. He asked me for blood tests for transplant. Being bit nervous and scared after this discussion.

[S_dillow]

congrats.just do the tests and stuff needed and keep working with your nephro.you ll be ok

[Hidden]

It seems a bit early for that but I guess it depends on your rate of decline. If your GFR was dropping rapidly then maybe your doctor thinks you'll be needing one shortly. I was improving from the bottom up and when I reached a GFR of 19, they put an application in for a transplant. I kept improving on dialysis and am not eligible for transplant now.

[Savreen1 in reply to Hidden]

yeah I feel it’s early as I have 3 years old daughter so hard about this. How did u improve??

[userotc in reply to Savreen1]

I presume youve tried diet and lifestyle to improve matters, as many on here have? My mum's eGFR was only 36 after a nephrectomy ~6y ago and has steadily climbed to ~60.

[Hidden in reply to Savreen1]

My improvement is somewhat of a mystery. My kidney failure was caused by a vasculitis autoimmune disease that affects small and medium blood vessels. Being on dialysis for 9 months and taking medications put my disease in remission and somehow allowed my kidneys to recover to stage 4.

[bumblebee_tuna]

My advice - start doing the prep work right now, don't delay. Find out what transplant centers are close to you. Some centers are better at live donors, some do mostly deceased donor transplants. Do you have a potential live donor? If not - be ready at GFR 20 to go on the list, don't wait until your are on dialysis. If you have private insurance, find out which centers they approve.

[Beachgirl32]

I stay at 22 percent years . Yes most centers won’t put you on the list until 20. I know when they told me to prepare I even had a home visit from the home diaylis pd nurse. My efgr kept going up and down but I didn’t go on dialysis until three years after that visit . Watch your diet and excercise I was walking almost two miles a day at 20 percent . You do want to get on the list at 20percent cause you do have to have an evaluation and if anything need fix you have time to take care of it . Are you update with mammograms and pap spear colonoscopy. Things like that you have to have .

[barbara55109]

It look like you are in Australia. Most of the folks here are in the US. Some things will be different in australia than the US. The biggest difference is insurance. How transplant waiting lists and distributed is also very different. Check out this site for Australian rules - transplant.org.au/types-of-....

Starting the testing process early means you can get on the list right away once you meet the criteria. It sounds like your Dr. wants you to be prepared. I don't know how long the wait is down under, but I've got a 6 year wait in the US. The sooner you get on the waitlist, the sooner you can get a kidney when you need it.

[2sday]

I recommend you do what’s necessary to get on the list. My husband got on the list as soon as his GFR hit 20. He was on the list just over a year and received a transplant 2 weeks ago. So far things are going well and he never had to do a day of dialysis. I spent many years on dialysis and I have to say having a transplant is preferable for me. We are a kidney transplant family now and we are so grateful.

[Hily]

You are very lucky. I raised this subject with the Neph at egfr 16, he said possibly, but I have not seen him since-6 months.

So grab your change with both hands and count yourself lucky. I hope it all goes well for you.

[bumblebee_tuna in reply to Hily]

You have to be your own advocate. Make an appointment and tell him you want to go on the list -- he has to submit the application. Your nephrologist is not the one that has to spend years waiting for a transplant.

[Hily in reply to bumblebee_tuna]

I phoned his secretary 3 weeks (make that 4 weeks ago now) ago to ask for an appointment, she said she would call me back - still waiting. I need to sell my house to move to another health board where care might be a higher priority .

My legs are giving me nerve pain now and am finding life more difficult. Burps are back.

[hope1419]

Savreen, I know exactly how you feel. I was 45 and my daughter was 12 when my dr brought up the talk about "being on rhe list! " It scared me to no end! I went and got a second opinion, but my GFR was 18 and had been dropping at least 3 consecutive times. It takes time to run the tests and get on the list, and at least in the US it can take between 4 and 8 years till transplant depending on your blood type and location. I enteres the list in 2019, I got called last year, but refused the kidney as I already had a living transplant donor. I just wanted to postpone transplant and use my own kidneys as long as I could. I finally got transplanted 4 months ago. My GFR was 9.5 or so on the day of the transplant.

SO, My advise to you, read and get as informed as possible. If your gfr 23 is a one time thing based on previous testing, you can raise through diet, stress control and hydration. Also, you should know the cause of your kidney issues and take the meds your dr. gives you to control those causes. Get on the list as soon as possible, but if possible postpone transplant as long as you don't need dyalisis. I maintained GFR 13 for about 4 years without dyalisis. I asked my dr for the longest ai could wait. He said to watch for gfr, but also creatinine and bum. I remember he told me bum approaching 100s and gfr in single digita was pushing it, but also watch the symptoms and how I felt. I kept close watch of those numbers. While you wait, read about "the big ask", which is basically strategies to ask for a living donor. That part is also hard to do, but as young as you and your child are, it is your best option. The living kidney transplant pre-dyalisis gives you the best chances of the transplant lasting longer. That should be your goal, to find a kidney donor and to stay healthy on your native kidneys as long as you can. Remember that both types of dylaisis and transplant are treatments, not cures. They both have advantages and disadvantages and they don't last for ever either. Give yourself some time to get over the news, but embrace it and be proactive about it. Learn about what brought you here and how to slow down the damage and plan for the future. Oh, and look for possitive messages in this forum. For a while I had to stop reading it because I got scared about all the issues people brought up, but you also find success stories and you progeam your mind towards success. I know your love for your child will drive you as did mine. She is now 17, and I am hopeful I will be around st least other 20 years! Good luck!

Let me know if you have any questions. My experience is in the US though.

[Savreen1 in reply to hope1419]

Thanks so much for lovely reply. I feel so lucky to part of this group. Whenever I’m upset I posted my feelings and get positive vibes😇

Actually I’m in Australia and my husband want to donate kidney for me but as our daughter is very young so I don’t want out both us in trouble but my Nephrologist said I can’t go on the list until I start the dialysis. So I’m worried about this. At the moment I want to increase my gfr🤞🤞

[bumblebee_tuna in reply to Savreen1]

I would at least find out if your husband is match. I know it's scary but it's not a particularly dangerous surgery for the donor and a preemptive transplant is really the best option out there.

[hope1419 in reply to Savreen1]

I understand your concern about your husband,, but I agree with Bumblebee, you should check if he is compatible. Mybdonor left the hospital the next day and she recovered fairly fast. Is not been able to be in the list unless in dyalisis, your doctor or his oractice preference, or is that an Australian law? It doesn't make sense, especially if you have a donor. Read the laws as well. Be an informed patient. It is betternto transplant without having had dyalisis.

[CuriousCKD in reply to Savreen1]

I would research every article you can find about nutrition and ways to increase your GFR. There are people who have been stage five, and were able to increase by diet and hydration, walking, etc. It won’t cure you, but with hard work, you might be able to stabilize. There are great books on Amazon, and if you are able to find it on the internet, you might try to access a website called DadviceTV.com This fellow was stage 5 and told he had to go on dialysis immediately. He told the doctor to give him 3 weeks to research for ways to help himself. I believe he is up to 3B ckd, and his website is full of info on everything Re: CKD. I don’t know if you have underlying issues that compromise any thing you could do, and I certainly wouldn’t have the audacity to advise you to forget dialysis or sign up for transplant. However, in the meantime, it could be very helpful for you to go on a strict nutrition program, etc. God bless you, and the best to you and yours. ❤️

[WYOAnne NKF Ambassador]

A transplant is a true miracle! Yes it is a bit scary, but the results are fantastic. Read all you can about the transplant process and what to expect afterwards. Ask questions of your nephrologist. Get knowledgeable! Knowledge is power. You will be on a lot of meds - antibiotics, steroids and immunosuppressants afterwards. Many of us have a rough 6 months or so getting used to our meds. I am now 23 1/2 years post-transplant and have a wonderful life, filled with a career, friends, travel, etc.

When I was first diagnosed with CKD, a friend gave me a special book mark. I have tried to live by the saying on it everyday.

ATTITUDE

The longer I live the more I realize the impact of attitude on life.

Attitude to me is more important than facts.

It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people say, or think, or do. It is more important than giftedness or skill.

It will make or break a company, a church, a home. - The remarkable thing is we have a choice everyday regarding the attitude we will embrace for that day.

I am convinced that life is ten percent what happens to me, and ninety percent how I react to it. Rev. Charles Swindoll