Feeling scared about what's to come

I am a pre dialysis patient with a kidney function of 15% going to see the transplant team today, they gave me a leaflet to read about what a transplant involves and it sounds horrific, i am very frightened about what is coming next and struggling to feel positive about the idea of a transplant, i wonder if anyone else has felt this way and how they coped with the anxiety?

10 Replies

  • Hello there :0)

    I too was really scared when i was 1st told but can assure you there is nothing to worry about ..I opted for peritineal dialysis as my daughter was very young and it fit into my life well. I was very lucky to be able to go onto the transplant list and recieve my new kidney in 18 months. They really look after you and its by no means horrific. I was sore and they had to 'fiddle' with my meds to make sure everything was settling well. I was out within a week and the well being feeling outways all the bloodtests and the operation etc. You will have to take meds for the rest of your life and may experiance side effects but the transplant team do have alternatives for you to take ... I suppose they have to give you worst case senarios but think positive !! 12 years later i still have my transplant and its still going strong :0) Loving ur user name, thats the way to think ;0) any questions i will be more than happy to help x

  • Hey glasshalffull, when I got the call for a transplant I was very scared, but I can assure you you have nothing to worry about, it is a major operation and it will take time to recover, at one piont after mine, June 17 2012, I felt like I wished I didnt have it done, but now I am so happy I did, it gives you a new lease of life, I can do things I never thought I would do again! Yes I had a few problems straight after but now it has settled down and I feel great, try not to worry, the medical staff will look after you. I promise you by around five months after the transplant, maybe sooner for you as I had kidney and pancreas, you will feel like a new person, just dont let it get you down. Take a look at my website renalbuddies.com for more help and advice. You really have nothing to worry about, Dont let it get to you, take time to relax, maybe put on some relaxing music and get lost in a good book. If you want to know anything else about a transplant feel free to ask me either through here or on my website, if I can help I will, good luck and stay strong. x

  • Hello, I thought I would share my experiences of kidney transplant. I had mine on Oct 30th last year after a 4 year wait for a suitable donor. I didn't go onto dialysis until March 2012, and so didn't wait that long before transplant. My creatinine levels were around the 500 mark with GFR of 10 (I'm 62, and age is used in the GFR calculation). At about 5:00 in the morning I had a call to say they had a kidney for me and to get myself over to Nottingham ASAP. I remember feeling strangely relaxed about it, even though I knew it was a major operation. After getting to the hospital and having pre-op checks I was wheeled down to theatre and remember lying on the trolley talking to one of the doctors, and the next thing I remember was waking up in recovery! You will have a number of tubes coming out when you come round and you will be on a morphine feed for pain (which works well!). Catheter for urine, intrevenous drips, a drain in the operation site (there is some post op. bleeding). Nothing to worry about as the staff look after you well. I was in hospital for just a week. However, I did have a bit of a downer a couple of weeks after as I was very anaemic and not feeling too happy with life. I did have a small phase where I wished I hadn't had it done. However, every day gets better, and 3 months down the line my last creatinine result was an astounding 125. I feel better now than I have done for years and just looking forward to a happy healthy life. Good luck for the future, and please don't worry about things. You will be in safe hands, and you will like me look forward to that future.

  • Hi

    I had my transplant nearly two years ago. It is a big thing, and so it's bound to feel scary beforehand, but I found once I was at the hospital (Bristol) I was just wanting to get on with it. As ever in life, it's the anticipation that's worst, but the event itself is not at all bad.

    I was out after six days, then lots of monitoring and tinkering with meds, but it all settled down and by three months afterwards I felt great -far better than I had for years. Touch wood, all continues to go well. So, don't worry about worrying - just look forward to the future. It's all well worth it.

  • Wow thanks for sharing all your stories you are all so strong and positive about your new kidneys, i had my transplant assessment yesterday and am now waiting to hear if im on the list, the doctors and surgeon gave me a lot of information and made me realise that accepting what's going to happen and staying healthy, fit and positive are really important. Its great to know that other people have been through a transplant and are living a better life because of it!

  • Hoping you are feeling stronger and more positive after your transplant assessment. Once you are on the Transplant list, your selection for a kidney is down to a computer matching you with a suitable, available kidney - unless you are having a live donation from family/friend. Some people think others get preferential treatment because they know the doctor/surgeon etc. which is not possible as selection is only made by the one computer in this country and, therefore, not by any person. I waited about 2 3/4 yrs for my cadaver transplant: others, due to their health condition, may wait longer or receive one more quickly . Live donations are "quicker" as they are an arrangement between 2 consenting adults. Things can only get better for you, Good Luck!

  • Hi, To be very honest your be fine, dialysis and a transplant is pretty horendous surgery but it will make you feel so much better and able to do things, I have had my transplant 11years this march and am fit and well and play golf regularly and love it, be positive your be fine xx

  • my kidneys work at 16%,they have been like this for 2 years now.i find cutting back on protein and dairy products really helps.good luck

  • Hi! I know it's been a few years since this post. I was just curious on how you are doing now? After reading your post I too have tried to cut back on protein and dairy but it's almost like everything I eat has some kind of protein. I'm at 15% kidney function and I would like to preserve that for as long as I can. Your post motivated me!

  • Hi :) I know how you feel, I'm 17 and I didn't have the buid up to transplant / dialysis (they just stopped working with no warning feb 2013) I'm now on haemo which I'm still trying to get used to because it all happened so suddenly but it is honestlty not as hard as you expect, I promise, I do haemo and I have found that the relationships I've got now with the nurses make it a lot easier. LIke you I'm getting worked up for a transplant and it's scary but like everyone else has said it's worth it afterwards, for now we just have to think positive and be brave.

    Keep smiling, looking at it in the right way I can honestly say kidney failure has affected my life in a good way too. Just keep smiling, everyone on here is here for you! xx

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