I just wanted to share my positive news and encourage those of you waiting for a transplant. 4 weeks ago I got the call saying they had a suitable kidney for me. I have been on the list for 3 years and had haemodialysis for 2 years. Shock, joy, disbelief, excitement and anxiety all kicked in at once. The renal team at Addenbrookes in Cambridge looked after me so well. I came home 8 days after the operation and I feel like a different person. I had been told I was highly sensitised, I would be a difficult patient to match and to expect a long wait. The kidney didn't work straight away, it was 'sleepy' but after 4 days, it kicked in and I now pee for England! The drug regime is quite tough to get to grips with but I am told it gets adjusted over the next few months. I am realistic enough to know that there will be bumps along the way and not everything is plain sailing, but I wanted to let those of you on the waiting list, not to give up hope, stay as healthy and as positive as you can, your turn will come and it will be life changing.
Sending all you lovely people on this forum positive thoughts and best wishes
Julie (UK)
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Juliepkd
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Congratulations on your "Gift of Life!" The first year can be a little rough, till you get on the right dose of immunosuppressants for you!Stay positive and keep us posted!
Not all on the list, waiting here in the U.S. will get the call. With 100,000 waiting for a kidney, less than 17,000 will get the call in one year. That means 83,000 continue to wait each year. Health problems pop up often causing more issues that remove them from the list. Sadly I waited on the list nearly 10 years. Listed at a center where average wait time was just over 26 months. My PRA level was consistently 99-100%. I went through 4 full rounds of IVIG to no avail. Finally my transplant center invited me to list elsewhere as I was making their statistics look badly. I've tried other centers but they require me to do tests and jump through arbitrary hoops having nothing to do with graft viability, only meant to keep me off list. Meanwhile thousands die while waiting on the list. Hope, not giving up has nothing to do with getting a kidney.
We are all of course thrilled with you and your transplant. Here's hoping you have decades of dialysis free living. Many Blessings
The injustice is real. I hope and pray kidney filtration options such as implantable bioartificial devices become available soon, very soon, where PRA levels, immunosuppressants, etc. no longer play a role. What a difference that would make in people's lives. Thousands, if not millions, would be served worldwide. Your history galvanizes me to support this approach even more. We all deserve quality lives.
I am so sorry. It really wasn't my intention to brag or make anyone feel so unhappy. Of course I understand that not everyone will be as lucky.The system in the UK must be so different to elsewhere. We are such a small island our kidney transplant list is national and is managed by the NHS. I don't know what PRA levels or IVIG is/are, but it sounds like you have been pushed from pillar to post and it must be distressing and disheartened.
The criteria in the UK must have different parameters. I know as a nation, the UK has the most precious resource, our NHS, we are rightly proud and highly protective of it. I certainly would not be alive today if it were not for it and neither would my siblings.
I do understand that thousands die across the world from this dreadful disease. I will not waste this precious gift and will always be so grateful to my donor and their family for making the brave and selfless decision to give me and others a second chance at life.
Please try to stay as well as you can. Thinking of you and others in your position. Best wishes. Julie
Oh no I deeply apologize for this. In no way was I trying to make anyone feel upset or think I was or am upset or so unhappy. I have been blessed to be going into my 21st year on dialysis--very blessed. I am always so thrilled to hear others get their transplants. CONGRATULATIONS.
Are you still on dialysis after 10 years or did you eventually get a kidney? I too have a PRA of 99% and I've been listed for a yr and a half. I figured I would take longer than the average person because of it but I didn't think it would be that long.
I don't know how you do it? I have been on dialysis 3 months. I hate it and I tell myself every day, "This is not forever, This is not forever" I am turning 60 in the next few weeks, I don't have 20 years, They will only transplant me up until I turn 75 and only if I stay in good health. I pray everyday someone will save me from this.
Congratulations, Julie! Whew, it's a lot to take in and deal with , especially at first, but you will be so glad you did it! I had my transplant a year and a half ago and it was a whirlwind! Thankfully I've had my husband to help get me to all my appointments and to be a support for all my ups and downs! You can do it, girl!
Juliepkd congratulations I’m so happy for you and your post gives me hope. I have been told I’m a hard match cause high pra levels my daughter didn’t even match me but reading a post like your makes me feel all things are possible and I’m a big believer that it will happen in god time not my time for I’m sure he has his plans for me, again thanks for making my morning reading your post. Hugggers❤️😍❤️
Congratulations! So good seeing these kind of stories on here. I’m coming up to 2 years in august since I had a transplant after being on dialysis from 15-27 years old, hopefully everyone on this orange can get their medical needs met too. Sending good vibes all round.
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