Live Transplant - what to expect?

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CKD1983
Posts: 3
Joined: Mon May 23, 2022 10:42 am

Live Transplant - what to expect?

Post by CKD1983 »

Hi there,
I am a 38 year old mother of 2 who has had CKD since i was a child (scaring of kidneys). After having my two lovely boys my kidneys are now at the end of their life and i am waiting to set a date to get a live transplant from my amazing brother who is a match! I am just wanting some information on this, real life information, not just what the Drs tell you. How do you feel afterwards physically? I have an eGFR now of around 12 and am fine most of the time, i do get tired but i work and have 2 young children (6 and 3) and just get on with it, i do wish i had more energy and hoping this will come once i get the new kidney!!
My questions are: How do you feel physically after the transplant, in the first few weeks and first few months?
How bad are all the drugs you have to take? Do you put on lots of weight? Feel awful?
How long should i plan to take off work and have my husband helping with the boys etc? I do a desk job and work 4 days a week, i can do a lot from home so i was hoping to take 1-2 months off but also need to think about help with the boys!
What is the worst part of all this?!
How long after the transplant, assuming all goes well, do you feel "normal"? Able to go to a party say or out to dinner?
I am so grateful to my brother and science for making this all possible but there is a lot of unknowns, any info please share with me!!
Thank you! x x
CKD1983
Posts: 3
Joined: Mon May 23, 2022 10:42 am

Re: Live Transplant - what to expect?

Post by CKD1983 »

PS i am being looked after by Kings and will have the transplant at Guys in London so any info specific to this even better, thank you! x
Zennor1
Posts: 1
Joined: Tue May 24, 2022 9:58 am

Re: Live Transplant - what to expect?

Post by Zennor1 »

Hi, I had a live kidney transplant from my sister in early 2019. It was a triple zero mismatch and same blood group. We are both well, healthy and all those positive words. My eGFR prior to transplant was about 10 and has remained stable in the low 80's ever since the transplant. I was working right up to the transplant.

Transplant was at St Georges and to be honest was pretty straightforward. For the first few weeks I had to go back for a clinic three times a week to check on bloods etc. You saw the same people and tried to outdo each other with gruesome anecdotes (well we did as it helped) . I now do bloods every three months which I am happy with as it will pick up any issue early. My sister also gets regular checks and will do for life which is reassuring for both of us.

Some recollections as notes:
1/ I felt immediately better when I came round from surgery - and ever since
2/ The adage that you don't know how ill you are until you get better is true
3/ If you do smuggle in a can of lager and a packet of crisps to celebrate the end of diet restrictions hide them for the consultants rounds
4/ Try to avoid doctors taking bloods - I know they have to practice but not on you
5/ I take Tacrolimus and Mycophenalate as immunosuppressants. Side effects from tacro. are well known, I got Type 2 diabetes and (even more) illegible handwriting. No other drug issues. Not bad considering the alternatives. Never had steroids so cannot comment
6/ Getting back to a level of fitness depends on the individual. With young children it is pretty quick out of necessity. Just don't push it if your body says stop. For me it was around three or four months.
7/ I was not allowed to drive for six weeks after surgery. I think this is the norm, I believe it can be sooner if you can get your consultant and insurers to agree. I tried and got a straight no from both. There was no home-working back then so this was the limit on me getting back to work
8/ I got some pain around the incision for some time - I concluded it was the scar tissue stretching and it is long over.
9/ Get registered on www.patientview.org and you get your results in real time
10/I still check all my blood results, that the drugs are correct, the right dose and in date. I take the view that it is my body and my responsibility
11/ And for me, apart from the renal team and proper web-sites such as this, I avoid the internet for advice.
12/ I cannot get life cover at anything other than an exorbitant rate. Travel insurance is fine, but premiums are loaded.
13/ I don't get any more colds and stuff like that than I used to pre transplant. I have taken the decision not to travel to areas where I would be exposed to new types of infection, so stick to Europe and North America. I do cover up in the sun and use factor 50 on exposed bits.

One final thing, I asked for and got photos of the surgery. My sister was pleased as she had never seen one of her own kidneys before.

That is pretty much it as far as my experience goes.
CKD1983
Posts: 3
Joined: Mon May 23, 2022 10:42 am

Re: Live Transplant - what to expect?

Post by CKD1983 »

Thanks Zennor, that it really useful! May i ask how old you and your sister are? I have no idea what type of match my brother is, they havent told me a huge amount, just that he is good. We do seem to have an positive crossmatch on the more sensitive test but they have done 1 round of plasma exchange on me and that sorted that out, so they think fine to go ahead. No idea what this means for the longevity of the transplant, not sure they know either! Am waiting to speak to a new dr on this before we set a date. All very exciting, but hate thinking i have xx many years left/like the count down has begun. Need to shift my thinking.....

Good luck with everything, hope your kidney works wonders and lasts for many years.

C x
Skm
Posts: 58
Joined: Sat Sep 01, 2018 10:13 am

Re: Live Transplant - what to expect?

Post by Skm »

Hi ckd1983,

I have to agree with everything Zennor said.

A new kidney is transformative. I hope all goes well.
I had hair loss, enough to thin my hair but not go bald. I think it was due to the “stress” of the transplant or the tacrolimus. It lasted about 6 months before resolving and my hair went back to its usual thickness.

Let us know how you get on.

Sue
Transplant May 2015
Thumps
Posts: 1275
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: Live Transplant - what to expect?

Post by Thumps »

Hello! I had my live donor tx at Guys in 2008 and they were fantastic throughout.

There's a checklist somewhere of things to take for while you're in hospital on this forum, worth checking out! I definitely recommend earplugs and an eye mask for when you want to sleep during the day time (and you probably will!)

As has been said, you'll be going to and from the hospital pretty frequently for the first few months. I don't know if it's changed but I had to go three times a week for the first few weeks, then twice a week and then once a week. By the end of the first year it was just monthly for me but it's different for everyone.

I was fortunate to be able to take three months off work at full pay. I think I felt ready to go back after about 2 and a half months, but life is pretty tiring while you recover. Do not underestimate how tired you'll be, even though you'll feel better! You might need to take it easy back at work for a little while on your return, a phased return or half days if you can manage that with your company may be wise! Be kind to yourself.

It's also hard to remember but important that you note this recovery is not linear! One day you'll feel like you can take on the world, the next you might just want to sleep, so lots of available support is vital. A lot of people say it's like a rollercoaster going through this and I think that's a great metaphor, but the end result is so so worth it.

Really important to look after your wound site(s) afterwards. Picking up anything heavier than a kettle was a no-no for me for six weeks at least and I had the same experience re: driving.

Your boys are at the age they need to be picked up or want to climb on you, so you WILL need help for at least a couple of months as you simply won't be able to do it! Might worth explaining to them in simple terms in advance that they won't be able to get boisterous on/near you for a while and having your husband around to help with gentle reminders not to will be super important.

I would also recommend spreading the load where you can - have friends round as well to help both of you by cooking/cleaning and similar, or batch cook ahead of time - a bit like after you've just had a baby tbh!

I used a walking stick for the first few weeks on public transport - not because I needed it but because it created an invisible barrier so people didn't bump into me and gave me seats while I was still feeling quite wobbly and vulnerable! Handy tip ;)

Taking handfuls of medication every four hours for the first few weeks is a bit of a chore but it's all for the long term good! Side effects wise from the drugs, the very high doses of steroids I was on for the first few months didn't make me put on much weight but I did get 'moon face', which means that your face gets rather puffy and you don't quite look like yourself for a while, but as the steroids get tapered down this disappears very quickly. I also had a bit of hair loss on my head paired with excess hair growth on my arms and face from taking Ciclosporin but I was taken off that drug and put on Ceptava which mitigated both of those things.

I think I went out to dinner at about 4 months and to my first proper party at about 6 months. :)
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
Thumps
Posts: 1275
Joined: Thu Sep 14, 2006 3:50 pm
Location: London, England

Re: Live Transplant - what to expect?

Post by Thumps »

One thing I'd say which might be controversial - I did not feel 'better' for the first few weeks at all. In fact I felt worse!

I'd been coping on a eGFR of 10-12 for a few months before my pre-emptive living donor transplant from a friend, so had no dialysis or anything. As such, I'd had no restrictions on eating or drinking or anything like that. I was tired a lot but otherwise really didn't feel very ill! I'd been told that post-op there'd be this sense of wellness and a great energy surge and I simply didn't get that. I think folks on dialysis have a 'better' experience immediately post op than those of us who have pre-emptive transplants because they get that joy and energy surge. That wasn't my experience and some other pre-emptive tx patients I've talked to said the same. I don't think it's talked about often enough.

Having to suddenly start taking a bunch of medication when I didn't feel very unwell was very odd. I had to start taking immunosuppressants two weeks before the operation to start damping down my immune system in advance. I got quite severe pins and needles in my hands and feet and found hot or cold things really painful (think it's called parasthesia). In general I found the load on my body of taking so many drugs in the few weeks after just made me feel quite nauseous and just a bit toxic, if that makes sense?

Between the cocktail of medications and the physical recovery from the operation I was really quite angry at times, feeling more ill than I had done before the op. It took me a couple of months for everything to settle down and to be able to see the long term benefit. If that becomes an issue for you, Guys used to have a psychologist attached to the renal team to help with any feelings you might need to talk about. Worth knowing in case you need it!

Either way - it's so so worth it and how wonderful that your brother is your donor! I have such a strong special bond with my donor after everything and the experience overall was so positive for both of us, despite the bumps in the road!

GOOD LUCK I hope it's as easy as possible!
PKD/PLD diagnosed 1994, CKD stage 5 Oct 2007, Living Donor Kidney Transplant Dec 2008, still going strong!
MatthewC
Posts: 73
Joined: Sat May 05, 2012 3:37 pm
Location: Oxfordshire

Re: Live Transplant - what to expect?

Post by MatthewC »

I donated to my brother in 2013 (at St George's) and so, for a donor's point of view, have a look at my blog http://diaryofakidneydonor.blogspot.co.uk/.
I was surprised to realise too late that he felt so bad that he hadn't ever really thought of asking the questions you are asking befor the operation.

"Transformative" is hardly an adequate word for him - it took them a while to sort out his tacro dose (vs high creatinine) but even so, the impact on him was immediate and astonishing - he just looked so well after 24 hours! Another unexpected outcome was the massive impact on his family (5 adult kids) who really were the only ones who saw him at his worst, and I still well up when I remember them coming to thank me in my hospital bed at the day of the operation.

As for how long it takes to get back to "normal", he was back at work after four weeks or so; as a donor I was beng careful and didn't carry anything heavy for three or four months, and felt I had lost a bit of stamina. However, I quote from an email he sent me six months later:
"I don’t think I have been in our garage for years – but the trailer tent is now gone, several trips have been made to the dump – I can put a car in there! Seems like a strange space to have. Vegetable patch is planted with runner beans, French beans, two types of tomatoes, swiss chard and potatoes all on the way. Grass is cut, hanging baskets planted – everything grown from seed. Cleared out the spare room – more trips to the dump. Can’t remember when I could last do all this sort of stuff in one weekend.
So, stick in there and I hope it all goes well for you.
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