New Kidney: Just recovering from... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

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New Kidney

Christine501
Christine501

Just recovering from getting new Kidney, at second call-in. Was EGFR 7 so was very tired. Blood results improved dramatically and no pain from operation site. Can't praise all the medical staff enough for their support. Wishing you all well on your Kidney journey - take care.

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Susan_101
Susan_101Moderator

Wonderful to hear good news. Its fantastic to see that the majority of UK transplant centres have reopened and the list is no longer suspended for people waiting on the call. Please do continue to share your recovery, i hope it call goes well. You may wish to keep in touch with the PKD Charity UK and even join their private Facebook group, its a lovely place to share you experiences. facebook.com/groups/pkdchar...

Thank you Susan. It's a worrying time waiting for a transplant, especially now with Covid 19, but happily Transplants are getting back on track, so those waiting should not lose hope.

That's good news Christine.

I wish you all the best in your recovery.

Thank you. I have the wonderful NHS Staff in the Hospital, who have helped me all the way.

Congratulations!!! Speedy recovery and cheers to living your best life.

Thank you. It is definitely a 'new life', and I will take care of this Kidney, and be forever grateful to the Donor.

Wishing everyone in the Community the same good fortune, that I have had.

Hi Christine and congrats on the new kidney. My question is how much pain is associated with the surgery to “install” the kidney? I am waiting for a transplant, myself, and I’m a little nervous about that part!

Hi, I am now 2 weeks from the Op. I can honestly say that I have had no pain from the Op itself, and all the pain relief initially probably helped, although I have only taken Paracetamol for the past 8 days. Obviously there is an amount of discomfort, moving around- I still have the metal sutures in, and there is a considerable amount of injections and bloods taken, but it is a small price to pay for a new life. Unfortunately I got Oesophagitis post-op, which has delayed my discharge, and caused the new Kidney to be sluggish, so had to get a Kidney biopsy, which was mildly uncomfortable, but not painful. Approximately 50% of transplant patients get a biopsy, which allows the Doctors to undertake interventions to stimulate the Kidney or up the ant- rejection medication.

Please don't worry about the discomfort - it is manageable. Concentrate on the way your life will improve from what it is now, and think how lucky you are to be getting such a wonderful gift

Best wishes

I am so excited about you new start, enjoy the new kidney 💚💚

Thank you. I can't adequately describe how positive I am for the future. I wish you well on your journey.

Just checking in on you, and hoping that you are doing well. 💚💚

Hi, Doing great - thank you. From EGFR 7 pre-Op, my last bloods showed EGFR 50! Creatinine now in double figures, so Docs pleased with my progress. No problems from Op site, but getting used to all the different new tablets, and their side effects has caused some minor issues with balance, and tiredness, but this is a small price to pay. The tablets will gradually reduce to what will then be the daily dose for life.

In addition to the physical improvement, I am now able to eat without too many restrictions, but more importantly, the worry of being on Dialysis and the Transplant List, has gone. I am now looking forward to getting fitter, and losing weight, and planning my holidays for next year.

To everyone on the site waiting for a transplant, I wish you all well, and hope that you all will be as lucky as me. Keep as fit as you can, and stay as positive as you can. Best wishes.

This is so wonderful to hear! Keep on and all the best moving forward 💚💚

Thank you. Now 3 months since transplant and all going well. Tablets reducing now so less side effects. One thing I have noticed is that my sense of taste has improved considerably and I can now enjoy food more than I have in years. Also, I now have very few food restrictions so am enjoying things I haven't eaten for years. However, as I still have my own two weak kidneys I intend to still follow a sensible diet.

Best wishes on your journey.

Hi just wondering how many tablets your on after the the transplant.

Hope your well

Hi, Initially I was on about 30 (including my BP tablets) but now I am down to 19 per day. The further you are from your Op, some of the steroids, anti-rejection tablets are reduced and then by about 6 months post Op you will be on your regular dosage for life, unless there are any additional needs. It's fairly straightforward but you have to take the tablets over 3 times daily - some with food, some on an empty stomach. It's a small price to pay for a life without dialysis.

I have been getting good blood results and Doctors are happy with my progress. There are however some small side effects of the tablets, but nothing major - just balance issues directly after taking the tablets, and some fatigue, but you can easily adjust your day to manage the side effects.

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