hi,. I'm a 19 years old with a GFR of 22%, I have chronic disease anemia and hypertension.
I was told months ago I'd be getting a pre emotive transplant and I got a letter aaying ive been referred to the transplant team. Does anyone know where this goes from here. And how long it might be before I get a new kidney. I'm trying to finish my degree.
Thanks 
the waiting time is around 3 years but you just don't know it depends on tissue match etc & luck you won't wait long to see the transplant team then they do all their blood testing etc then within a short time you get a letter saying you are on the list you have to be prepared to drop everything & go when the call comes! all the best x
Beanbags, all I will say is don't put your life on hold waiting. Presumably you are in the UK?
You will have some blood tests etc and health checks to ensure you are well for transplant operation. You will have your tissue type and antibodies checked. That's pretty much it. If there is a suitable and willing live donor, that may be looked into but it takes time. You'll be told to have a bag ready...
I went on the list at 17- hoping for a transplant before dialysis started. I waited for 19 years. And it failed after 2 weeks. I had no suitable family members so it was the lottery. Things have changed somewhat since then, but just live your life as full as you can. Im into my 26th year of dialysis now. Yes it's a lifetime, but im well, i go to work and have a life! A transplant is just another form if therapy. It's not a cure. Sorry to be so negative. I wish you luck x
Hi Nicolala. Thanks for your reply, sounds like you didn't have a great time with it. I only have one possible live donor from my family so I'm not resting all my hopes on tha to be honest. I'm trying to live my life like you said. Doing my degree, working, keeping positive. I just hope I'm not confined to dialysis all my life
Hi beanbag5. You have the right attitude, which is being positive. If your live donor works out, it has a higher level of success than a cadaver one. Transplants aren't always the cure they are sold as. Yet it is possibleto have a good life on dialysis. I wish you well. X
Just a question to you Nicola, I've just been to hospital for a work up to transplant, I went last year but my Numbers went up to 23% which was a great surprise, I've since gone back to 17% and dropping a bit faster than before, my Doc referred me early as I'm otherwise healthy my iron is dropping and cannot absorb vit D anymore, so don't know how long I'll be complication free. I could have a transplant before ever going on dyalysis. I do not have a donar unfortunately. Any how I have been put off. The toxic drugs, risk of cancer and diabetes, and the kidney only lasting 10 to 14 years. I'm torn, I accually got freaked out after the talk with the consultant that I said I couldn't go ahead with it. Am I doing a stupid thing? I know it takes years before I could get called up but I don't think it's necessarily the best option, any advice?
I've been to the seminar where you meet a person who had the operation and listened to a surgeon, it didn't help. I'm 47 years old, quite active and work part time.
Hi chin 69.
I can't give you advice, everyone is different. I can tell you my experience and information. Dr's don't tell you the whole story about transplantation. They want success stories. Personally, I wouldn't consider one before dialysis. And you may not necessarily get one once on the list. I am O-positive- the most common blood group, but I have a rare tissue type. These can affect how soon a match is available. I was on dialysis for 16 years before mine. In that time I met many transplant patients whose had failed. Some lasted months, the longest I know was 15 years. He suffered cancer from the drugs. Typically you will be on a high dose of steroids ( prednisolone) cyclosporin and microphenalate. Google them. I also needed cholesterol drugs, drugs to prevent diabetes and drugs to prevent TB. I suffered none of these before the transplant. The drugs are toxic and side effects can be horrendous. After my brief experience - mine lasted around 2 weeks but docs fought to save it for 3 months, I took myself off the list. I will never do it again. The op itself is relatively straight forward. I needed almost daily biopsies to see what the kidney was doing. These also carry a risk.
Dialysis itself is not fun. I started at 19 and I'm now 45. It can affect your life, your family, your ability to work. Holidays. Diet. Everything. For most people, it's the reason they dream of a transplant. They see it on the news and don't see the negative side. You are still young. With good dialysis and a positive attitude, you can still have a good life. I know I'm perhaps being negative and others will say I'm wrong. Trust your instincts. But to reply to your initial question, you are not making a mistake in saying no. Even if you change your mind, and a kidney does come up, you can still say no. I hope this answers your questions, but if not feel free to ask anything. I will answer as honestly as I can.
You have been a great help, I still see it as a choice, but not the miracle cure, I'm going to still say no for now. Thanks very much.
Hi Chin 69
Just to give another view - I had a transplant in 1993 when I was 31. I'd been on dialysis for about 5 years - some haemo, some CAPD. It's true to say there are side effects from the tablets, some harmless some more serious like the non Hodgkin's lymphoma I had after about 15 years. But mostly it was visiting the renal unit at the hospital every 4-6 months.
I was working when on dialysis - part time - but used to go 3 times a week for 4 hours and I was tired after a session. There is a lot of wear and tear on your body and your veins can become very thin and you need to be very careful with fluid restrictions and potassium levels.
Basically what I'm saying is that there are pros and cons for both options.
I'm now in the same position as you - after 22 years my kidney began rejecting ....... Unusual apparently after that length of time, so for the past 18 months my gfr has fluctuated between 10 and 12. Although I am again on the transplant list I am unsure which route to take, transplant (if lucky enough to get another!) or to opt for dialysis.
It's not a 'miracle cure', no, a transplant isn't going to last forever and a nurse once said to me look at it as a break from dialysis. I must add tho that I'm glad I had my transplant - I know I was one of the fortunate ones for it to last as long as it has.
Hope this helps - but only you can make the right decision for you.
Best wishes whatever you decide x
Thanks for your reply, I've just had notification of it! I'm glad you feel well, I'm feeling more confident with the idea. I've been offered perennial dyalysis when I need it in the future, I have no serious health issues, just the Autoimmune disease Igan. I have an appointment tomorrow I'm sure the doctor will bring it up again. Thanks again for your help.
Hi Chin69,
I am sorry to hear that listening to someone who had the operation didn't help, perhaps hearing a success story might. I was also very scared about having a transplant initially (fourteen years ago as it happens) and will need another one at some point. However, for me, the risks outweigh a life on dialysis. I know it is not the same for everyone. Nowadays, anti rejection drugs are better, cancer screening is better, success rates for transplants are better. Your quality of life in my opinion will be better after having a transplant, but your consultant is duty bound to inform you of all the risk factors. I was so much more healthy and energetic after my transplant, I could eat better and felt I had my life back, I returned to full time work and even had a baby! If you are careful on dialysis, you can still be well, it is just you need to adjust to a different lifestyle. I am also 47 and still work part-time, because as you say, there are side effects; one of them being that I pick up bugs etc due to a suppressed immune system. I wish you all the best with what you decide; I think you may feel differently after a long period on dialysis. At the end of the day it is your life and how you feel that matters, but I hope I have helped in some way. Sarah.
Thank you for your story, especially how the anti rejection drugs are better. I have an appointment tomorrow I'm sure my doctor will bring the subject up again, I feel a bit more confident now to discuss it again.
Hi Chin, I'm so pleased you are feeling more positive. I hope the doctor can give you helpful information at your appointment tomorrow. Why don't you write a list of your concerns and take it with you. I know that even now I sometimes forget things to ask. I wish you all the very best. Kind regards.
Good idea about the list. My doctor said I'm doing well 15% function although potassium is high. He's given me another 6 weeks then I can decide to go back on kidney register. Keep well.
Hi Chin, I'm glad you had the chance to discuss things with your doctor. Has the doctor suggested any changes to your diet to help lower your potassium? I believe that bananas and chocolate are a no, no., but I know that most renal units have excellent dietians to help. I hope you are feeling ok and that you can use the six weeks to get as much information as possible about transplanation/dialysis, but as another person posting said, it is a personal decision. I'm fine apart from a seasonal cold, all the best to you.
i feel sorry for your plight
Any way transplant is sustituting a good kidney in place of your damaged kidney.
what is your GFR level ?
A doner must be available , soon after transplant u are not ok.
Do u have other medical histories?
plz write me back
pray for your good health.
Transplant is the best option especially for a younger person but of course its not a cure just another form of treatment many peoples last a long time some don't unfortunately know one can tell My husband who is 60 now did very well on dialysis for 5 years but now is struggling on his third fistula & heart problems due to the dialysis veins calcifying due to the dialysis he is older as i say but for a younger person a transplant is the way forwards! dialysis batters your body some people live many years on it but unfortunately some don't!
Dear Friend, I,sincerely, wish you a quick recovery and pray for you to lead a happy long life.
Hi BeanBag, I'm sorry to hear you have had this diagnosis, I remember when I was told that I had kidney disease, I was very down, but thankfully there are treatments out there. Having had dialysis and a transplant (fourteen years ago from my dad ) I can tell you that this was a great option for me. I felt so well. Fingers crossed that your family member is a match. Have you heard about the paired donation scheme or altruistic one? The first is where a member of your family is tested, and if they are not a match for you, they may be a match for someone else on the transplant list and a potential live donor for another family in the same situation as you, might be able to give you theirs. I don't know the ins and outs of it, but it may be worth you contacting NHS Blood and Transplant, or asking your team about it. The altruistic donor scheme is where a stranger offers to donate a kidney- one step on from blood doning I suppose. My advice in the meantime, would be in line with what a lot of people have said; keep as active as you feel you can whilst retaining some reserves for any bad times you might have- or simply to stay feeling well. Watch your diet, particularly potassium levels (although I am sure you know all this) and most important of all- stay positive! I hope there is a kidney out there for you some where- all the best!
I would think seriously about transplant. I was approved at Mayo preemptively. Multiple friends and family tested to donate. At a year friend and I were being considered for a chain, then I got a phone call for a " perfect match" deceased donor. It went great, immediate function and creatinine back to normal. Mayo has a very high success rate so I feel confidence in continued health. It sometimes feels like a part time job managing the meds and self care but so worth it! I have a friend who had her kidney 38 years before dying in her 80s of another cause. Please consider it seriously. You deserve to miss dialysis if possible.
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