anyone out there had a kidney replacement or dialysis yet? Or maybe thinking its close to being that way?
kidneys.....: anyone out there had a kidney... - LUPUS UK
kidneys.....
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mariearmstrong
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Hi, yes! I am almost 10 years post transplant. Can i help, what do you need to know?
has it worked for you? did you go thru dialysis before the operation? were there any major complications post op? was it hard finding a donor?
Hi, I was on dialysis for about a year. My createnines before starting were 1600!!! Tried first to do peritoneal dialysis but my body didn't tolerate it so I never ended up on this method after training at the hospital. I had an emergency line and went on to heamodialysis. It's a strange feeling at first but you're body gets used to it. I had been accepted onto the transplant list so set about asking family if they'd be prepared to test for suitability to be a live donor. Only my mum was prepared. My then partner also said yes. So they went about their tests and me all of mine. Both were matches for me when another person wanted to test also. They too were a match. So 3 matches for a live donation lucky me! I chose the last person. It took about a year as the transplant nurses kept going off sick and I went through 3 different nurses in the end. I carried on working whilst dialysing no problem. So the transplant day arrived with me having dialysis the day before. All went fantastically. Donor left hospital next day and myself 5 days after the op. You will return to hospital most days at first for blood tests to ensure all's well. If so after a few weeks you're discharged back to your own renal unit for monitoring. I've had 2 problems which temporarily caused my kidney transplant to suffer. One was an infection due to not drinking enough fluids and recently gastroenteritis and septaceamia where I was chronically dehydrated. YOU MUST ALWAYS DRINK PLENTY, ABOUT 3 LITRES DAILY!!! About 10 years on my transplant is working well, not as fabby as at first but still good. My createnines were 70 in the first years but now are about high 80's/lower 90s. Please be prepared to possibly become huge due to steroids and very quickly. I'm 25kgs heavier and cannot get this weight off. You will be on immune suppression, possibly a statin to keep your blood vessels clear of cholesterol. Possibly blood pressure pills and maybe other news too. Also you need to know that it's not all rosy after transplant. You just swop one set of problems for another. But you're alive and free from dialysis. If Lupus has caused your renal failure it can still do it again to your transplant. So drink plenty, take all your meds, do your blood tests and report to your renal nurses of you feel unwell. All the best and if there's anything else please ask. I'm a straight talker I don't believe in tiptoeing in roses. It's your body and you will need to know what's going to be happening to it. X
that was remarkable information! Much more than any doctor would explain! That's why I prefer asking the people that have experience. A doctor rarely ever experiences most of these intensive care situations and cant 'tell it like it is'. thank you for sharing your reality. Its helped me loads, and probably others. I feel prepared now. And 3 matches!! that is awesome. Made my day! Im at 15% function and the doctors are looking at me sideways. I think im starting to see what is coming
If you like a bit more info on how I found both types of dialysis please ask. You will need small ops before you can start either. These are access points in your body in order to be able to dialyise. A tencof ( spelt phonetically lol) for peritoneal which is just below belly button done on local aneathestic. You'll need an av fistula in your arm but before you get that you may have a line in your neck, a vascaph or a line in your right side, upper chest, a haemocaph all done under a local. If you choose the peritoneal way be prepared if you work or have children or dogs at home that you will be going in hospital daily for your training so you'll need to get some help at home for care of them. Haemodialysis they may start you off slowly as it's a shock to the body. When up and running it's usually 4 hours on machine plus time to get you on and off and usually there are 3 sessions a week, Mon, Weds, Fri or Tues, Thurs and Sat. Still more I can advise you if you like x
Yes 20 years this month . Was only on dialysis for 8 months as I had my fathers kidney. Unfortunately my father passed away 2 years ago, so sad but I feel so honoured that I still have part of him keeping me alive
All the best Hayley x
20 years wow and what a legacy! X
that is wonderful about having a part of your father still helping you to live and survive. what a blessing. I have yet to find a match, but its still early. im preparing for what lies ahead. Thank you for your reply. What was your situation like pre-op if I may ask?
To be honest it was all pretty straight forward for me. They said I would know when it was time to go on dialysis by they way I was feeling. Feeling sicky, itching & generally unwell. I think my levels got to around 600+when I started dialysing . Some people go higher. They say 1000 creatinine & there's no function & u can become really poorly. I had suffered for years, over 10 with damaged kidneys from the lupus but all the meds kept it at bay. I was on huge amounts of water tablets & blood pressure was a problem. The op was good I was only in hospital for 5 days. It's after . Had to have bloods checked at hospital twice a week for a month or two. I was lucky as didn't have rejection. You start off on loads of drugs after transplant but every week they stop a few. It's finding the right levels of immuno suppression for you. I'm on quite a low dose of cyclosporine because I was having a lot of infections. I wish u all the best & hope it's all plain sailing which I'm sure it will be. If I can answer anymore questions feel free to ask. X
Tremarel, gosh they got you on dialysis early around 600! I was at 1600 before I started. Was still working as well. Must say I felt a bit rubbish! My suppression is prednisolone steroids, Tacolimus (Prograf) and very low dose of mycophenalate. What were your injections for please. Do you feel as well 20 years on as mostly I feel unwell. Are you being looked after for your Lupus and who do you see if so? What blood tests do you have for Lupus and how often? Thank you if you can answer these questions. I'm never well these days and am not looked after for my Lupus.
Hiya sorry for late reply. Just felt so exhausted from doing nothing last few days & hurting like mad. The fibro been giving me jip. The weather plays a big part in the up & downs of the fibromyalgia . With that and the lupus I just got job to move & even touching my skin hurts. The injections/infusions I do weekly are for my immune system. I was having so many infections & shingles they done deeper tests & found I wasn't making any antibodies , all my IGA,IGM& IGG levels were so low I was open to life threatening diseases & infections. I infuse weekly takes me a few hours.
To be honest everyday is different I never feel well though. I have also been suffering with bad bowel problems last two years which doesn't help. All consultants must hate seeing me they all say I'm a challenge. I see rheumatologist every few month for lupus , kidney transplant monthly, immunology every 6 months, neurology for a muscle problem arghh the list goes on ! I have all sorts of blood tests. Off to transplant clinic in the morning. Had infection few weeks ago & had antibiotics which pushed my levels up so being checked again tomorrow. I think all the drugs make u feel rubbish most of the time. My creatinine is around 200 at the moment it has crept up . It was 120 when I had the transplant . It's not too bad for twenty years post transplant. As you know it's all the other things that come along after transplant isn't it & having lupus. Always something
All the best keep smiling Hayley
Thanks Hayley. Sorry you're having a bad run of it. Me too. Just like you say there's never a well day anymore. Bits n bobs just keep trying to pack up and drop off lol. I can equate with the skin. Mines in an appalling state top to toe, angry red and itchy rashes, I feel like I've been scalded with boiling water, and anyone thinks the Sahara Desert is dry then you haven't touched my skin, worse than coarse sandpaper, like you it's painful. Mostly i'm on either once or twice a year to transplant clinic. I've been under cardiology, am waiting for respiratory appointment, dermatology also, see ophthalmology and rheumatology once in a year and a half, that needs to change! It's good for people to see the truth of it all post transplant, it's not a cure all, other things go wrong and like you I suspect that the tonnes of meds we have to take are culprits for some of these. I'm trying to get through Tonsillitis and a nasty chest infection at the mo so off to GP tomorrow as I cant kick it well enough to go to work. I work with newborns so its not fair to them and I don't think i'd last my 5 hour shifts. Hope all goes well at Transplant clinic tomorrow Hayley, never nice waiting for your results is it, just hoping that function is good once again. Really must do my bloods, i'm months behind, big oops! Take care of yourself, x
I've had Polycystic kidneys disease since I turned 26 years of age, I am now coming up on my 49th birthday this year. I've had 3 ops to put in a fistula with the first two failing. My kidney function has stabilized at 15% but it did drop to 12% which kicked all this ops now. It a lets get ready now kind of deal. But I'm having second thoughts about all this and was wondering if it would be better to just let things progress naturally because I am in constant pain 24/7 and have to rely on pain injections just to cope.
Is this a normal feeling to go through with end stage Kidney disease? My specialist says "I'm just feeling low" to which I replied, "wouldn't you be after 20+ years of this?".Anyway, Thanks for listening. I hope everyone is well as can be.
Mac#
So sorry you're in pain, in this day and age and with so many meds about, nobody should experience pain in my opinion. You're only 49 (I'm 51) so with dialysis or transplant you can have years more life. Ive had 7 grandchildren born since my kidneys went at 40. Worth being around for. You do sound really low by saying maybe it's best to let things progress naturally, in other words do nothing and die to say it bluntly. I'm not surprised you feel that way and id say yes it's normal. You're facing alot and the future for you is not the same as you thought it would be. Life turns upside down. Even us toughies have down moments. Depression is common in Lupus and with a transplant because of the meds. I'm not the person I used to be before diagnosis, I can be quite a miserable cow now lol. It's important to have a good GP or consultant who will listen to you. You can always get things off your chest on here, we all understand. Lupus is crap and tough but you need fight in you to kick its butt and your consultants when you feel you aren't getting help or answers. I don't know if you'll still get pain from your kidneys after transplant. I had Glomurolonephritis my filters inflammed, scarred and failed. Post successful transplant my kidneys are almost gone now, shrivelled down a few years ago to less than the size of a newborn baby's. Worth asking the consultant if this is usual as if no kidneys surely no pain you'd think?? Really hope you can get sorted and feel better than you do at the moment. Big hug.
Hi. Thank you for your reply, Polycystic kidneys means both my kidneys are swollen to around 3 times there normal size. I do have a great GP who constantly apologises to me because he can't do more. But as I tell him, He does what he can, and I'm fine with that.
What I find the hardest thing to cope with is not being able to work and having to listen to people say things like "I'm lucky" because I get my benefits paid. But as i always tell them, have you ever tried doing nothing all day every day? There is only so many ways of doing nothing and remain sane. The last job i did have was driving coaches which I could do because I had an understanding boss who let me work what i could when i could but i was told by the DVLA that I could no longer do that, so I have nothing to do all day.
I used to be in construction and loved helping people especially the elderly, I would do what ever jobs they needed and only charged for materials used. That way i knew they wouldn't be ripped off by unscrupulous trades persons. So you can imagine that doing nothing everyday takes it toll.
Sorry for moaning, I know there are those out there that have it worse than me. So thanks for listening. This is a great site.
Never be sorry for having a moan, getting things off your chest. I can fully understand that you're being driven nuts by being at home, so would I be! Are you able enough to do some voluntary work such as help out in a charity shop for instance? Even if you had to sit at a till? If so this will get you out of your prison cell , your 4 walls,.and would give you something worthwhile to do and give you adult social interaction. Anything is a blessing when stuck indoors. Could you do voluntary work such as a befriender to the elderly or maybe a hospital volunteer in some way? Yes you are lucky to get benefits but I'm sure you'd rather be your old self making a living. People certainly can say the wrong things as they need education in chronic illnesses and what it does to a person.
Hi again. all those ideas are great but One of my problems is not so much a medical one, I don't sleep to good, more like cat naps. I have no energy and feel so tired all the time. My GpP won't let me have a few sleeping tablets so about once a week my body just crashes and I wind up sleeping for a day through exhaustion. I did try offering to teach at my local college as a teachers assistant on a builders course, the college even offered me a bed to rest and somewhere i could do my medication and supply a security guard to walk me on to and off of the premises because of my meds i carried. But once again the benefits agency said if I did i would lose all my benefits. So I set up a small workshop at home to mend things for people and wound up fixing their computers or building new ones for them but now, even this has become a struggle.
I am the tenant rep for my building which I can still do as the residents here pretty much all have health issues, so I make sure that jobs get done and our homes is secure. Basically I'm their unofficial caretaker who makes sure our council are keeping up with repairs which is just emails and phone calls most of the time and a monthly meeting.
I know I shouldn't moan really as I do make the most of what i can do, I guess I just get so down after a while, depression often makes things look dark. I just wish it would come to an end. It's hard to explain when writing on sites like this, but looking back over my past years it seems that all I have really done is to go from one problem to another with a few good times thrown in between. A failed marriage being attacked when i was 18 losing my hearing which cost me a career in the army, you know everyday things like that for the best part of my life and culminating in this. I don't think I have anything left in the pot, because all i see is what next will happen?
I know i have depression, I've just got to that point where I no longer care.
Anyway thanks for letting me vent, at least I know at least someone out there will understand.
I wish you all the very best.
Mac#
before I was on lupus meds, I found I couldn't go near vitamins and health supplements because it would beef up my immune system and encourage a flare up, basically everytime. Now I find being on lupus meds, I have completely gorged myself on health supplements daily. I found one thing to improve and that was my mood. I take a lot of vit D, B's, C, E, B12 sublingually, a vegan protein drink that contains vitamins and fiber, and my mood is unbeatable now. I also think my thyroid meds have kicked in some energy and positive mood also. I would really recommend a healthy supplement diet if you are on lupus suppressants. I will admit I am on Prozac as well. That one I found to be a life saver many years ago going thru menopause, and after I found it also supported lupus health, because it would control moods, which seems to control flareups. anyway. when I tried weaning off Prozac, my lupus went nuts, so I went back on, and decided to stay on it. anything to avoid a flareup, plus it keeps my moods pretty even
definitely....just like I said before...never met a nephrologist that had dialysis or transplant. never met a rheumatologist that had lupus or took steroids before. never met a cardiologist that has had a heart attack. these doctors don't know what their patients are going thru on a personal level. and in a way, they must not 'feel' too much to stay focused on your problems. But it still cuts deep when a dr says the wrong thing at the wrong time.
Well said!
I hear ya! The job im at now is the most brainless job, still a bit physical labor, but minimum wage and a job not many people line up for. If I loose this job, there aren't many other jobs out there that will take a limping old woman that needs crutches. I feel like tiny Tim LOL. I cant bare the thought of going from job to job, that would be too much stress, so I cling to this job. I have just applied for disability, but told them I don't want to stop working, I just want to be covered in case I find myself without a job and in the hospital. stuff I wish I didn't have to worry about, but that is lupus
I know you have had lots of replies mariearmstrong, but thought I'd just add my voice. I suffer with SLE which started when I was in my twenties. Because it was practically the dark ages then and Lupus was quite new the doctors tried all sorts of treatments on me! Despite everything, I didn't start dialysis until 25yrs later and Iyr later I had my transplant. It's still doing well and the anti rejection drugs I take are very similar to those for Lupus, hence I've been in remission for a long time. Lupus has still given me a few problems, but nothing that my renal team haven't been able to sort out. I have them and my wonderful donor family to thank for getting me through my 'journey'. Keep wellxx
I have had my transplant for nearly 27 years and have only just been diagnosed with SLE and Hughes Syndrome. I was never given a definitive diagnosis of why my kidneys failed (was told that I had scarring from recurrent UTIs). The medication I take to prevent transplant rejection is similar to the medication for Lupus and so probably why it wasn't obvious for such a long time.
I began my Lupus journey after waking one morning to find one side of my face paralysed .... and so it began! I have now been diagnosed with SLE and Hughes syndrome and although suffer greatly with different symptoms I consider myself fortunate that each morning I can smile and I can pee (sorry for tmi) which means my kidney and face are both still working!
Reading the posts on this site has given me comfort that I am not alone and that the symptoms I continue to experience are just part of the disease. Onwards and upwards I guess 
In answer to the original question I was on CAPD dialysis but only for 4 months as I was critically ill and a needed a transplant quite urgently. Creat is now around 130 and eGFR 48 % BUT please remember we are all different and so our bodies will tolerate levels differently Xx
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