New to this.

[Rmatthew]

Hey, I’m Ross and I was on dialysis for 12 years before receiving a kidney transplant in august this year. At the beginning it was very hard due to the kidney taking a while to wake up, I was in hospital for 19 days, almost had to get a biopsy, but they then gave me a high diesel of steroids because they thought there was a small rejection. Also, my bladder was very very small due to being on dialysis for so long. After the steroids, my levels were coming down to where they should be. It’s been around 5 months now and I’m feeling great now, with just some side effects eg: Losing my hair at an accelerated rate for example. I’m mainly here to talk to people in a similar position or have been through similar things as I don’t know anyone else who has.

Thankyou!

[pops81]

Congratulations Rmatthew! Its been a while since I had my transplant so it would be difficult to give you accurate info since protocols and meds have change so much during the past 40 years. But I and many others will tell you (unless your team says otherwise) to do your best to get active even in this age of covid-19 and to hydrate and hydrate some more. I know its been the opposite of your normal with dialysis for so long, but this is the new you. You want to be safe about it but if you haven't yet - get up and get moving and bring along a bottle of water with you. Enjoy this new phase of your life and be well.

[Rmatthew in reply to pops81]

Thankyou! My transplant team have said to remain active but because of covid 19 were currently in lockdown and have been told to isolate, but I have been active with walking. I have to admit it has been very strange now being able to drink as much as I want, from when I was on dialysis as I only drank between 500ml to one litre a day, the recovery is coming along nicely as I now only have to go to the clinic every 3 weeks.

[kidneytransplan in reply to Rmatthew]

I'm a 3-year "transplanter". I am doing great now. My first year after the transplant was the most difficult due to the side effects of my medications. I too started losing my hair. There were 2 reasons: Around5-6 months after major surgery this happens but the hair growth returns to normal. The second reason was the steroid "Tacro" was causing hair loss so my doctor switched me to "Envarsus" which is the slow-release form of Tacro. Problem solved immediately

[Rmatthew in reply to kidneytransplan]

The worst part for me was the 19 days in hospital, took a lot of meds adjustment, and a small rejection. The drug I’m on is advograf which is also the slow release form of tacro.They had me on prograf initially but changed to advograf.

[agirlwithhope95]

Hi Rmatthew! Great to hear that you're getting back into gear! Personally I have not yet have a transplant but I have researched a lot about it because I might need it in the future. From what I know, it took almost 6 months bfr a patient with kidney transplant can finally start brisk walking and gradually increasing intensity of his physical activity. And the losing hair rapidly is also a common side effect but it will soon get back to normal after up to 6 months, it is your body levelling all the hormones and accepting the new kidney. It is great if you drink lots of green juice, celery, lemon, kale, cucumber. I hope you'll feel better having this community of individuals to accompany you through your journey.

[Rmatthew in reply to agirlwithhope95]

Hey, I hope you’re doing well! I’ve been able to walk quite well for around a month now, it’s just such a massive change from not having a lot of joint pain etc. Things have been going well since I got home, just finding it strange to adapt to feeling better than when I was on dialysis. Thankyou for the info, some of that stuff I didn’t actually know!

Also, Thankyou for being so welcoming!

[mtwskk in reply to Rmatthew]

Your doing great the hair loss will slow down just give it time. You might also get the shakes initially but they too will go away it's just you getting used to the kidney. If you have any questions you can contact me I'm 9 years post transplant had a rejection several biopsies and a sleepy kidney to. It was extended and end of life but I thank God everyday for my kidney. Life is good and it will be for you too. Enjoy life a very precious gift.

[Rmatthew in reply to mtwskk]

Yeah I had the shakes really bad the first month or 2 post transplant and was also freezing cold for about a month after, did you experience that at all?How did they deal with your rejection? Also do you know how long it took for your kidney to wake up?

I do feel a whole lot better now thankfully!

[mtwskk in reply to Rmatthew]

The kidney took between even 2 and 3 weeks. I was held up in a hotel just down the street from the hospital as they didn't want me in the hospital while there were sick people there. I'd go back to the clinic every other day.

The rejection was in another hospital, the state hospitals deal very well with rejection the private ones dont as they get a black mark against them for every rejections. Mine was a private I'm still not welcomed back there. It's fine as I found the state hospital that does everything like clockwork

[Rmatthew in reply to mtwskk]

Can I ask how they fixed your rejections? I’m with a public hospital aswell, never been to a private hospital before

[mtwskk in reply to Rmatthew]

They didn't fix the rejection I actually lost it the hospital missed an antibody that wasn't comparable. It was awful my brother-in-law's kidney. I was in icu for like 2 weeks before I woke up and told my husband undo whatever they did as I was not very well I was really out of it. He had to fight them to take it out. And me it took another week to recover in the hospital and I was back on of dialysis. But that's all in the past. By the way a private is just a for profit like at Luke's or Froedert, Aurora, etc

[Rmatthew in reply to mtwskk]

Wow, I’m really sorry to hear that! That’s terrible. Yeah I’ve head about a few of the private hospital here in the UK, but it costs a fortune apparently, plus I’ve been with the public hospital in Glasgow since I was 2 years old with kidney failure and they’ve been brilliant! I’m glad your kidney is doing great now.