Living or existing with Kidney Failure

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Grey
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Living or existing with Kidney Failure

Post by Grey »

Living with kidney failure or should I say EXISTING with it.
What gets me the most nowadays is how people around me, who at first were sympathetic when my kidneys failed, shame he has kidney failure, seem to forget the gravity of it all and as time passes, because I have lost weight and don't look sick, I now get comments like " my how well you are looking" . Those comments are obviously based on external physical observations only, the image they can see. Just because with kidney failure you don't grow a great big lump on your nose or something physical that stands out, it is so easy for them to look at you and use their "normal judgement measurement of well being" and come to the conclusion, oh he / she looks so well. Meanwhile inside we are either dead or dying, being kept alive on life support called dialysis without which we would certainly not survive. In fact my kidneys now weigh about 5kg’s each and to help understand how eaten up with cysts they are they are now like 2 rugby balls in me. A second misconception is how easy it is for someone who does not know what dialysis actually involves to come to the conclusion that, oh he is OK, he's on dialysis. Well surprise surprise, not actually. As already pointed out, dialysis is a way of keeping a patient alive, a form of life support and it does not fully replace the functionality of your own kidneys. Although it keeps you alive it leaves you at the mercy of many and varied complications brought about because dialysis just cannot do the same job as a kidney, leaving poisons in your blood, which can result in may deadly problems including increased risk of heart attack, calcified arteries and a foggy brain making it very difficult to function normally. I often read on a kidney site comments where patients who have just had a transplant make comments like, “the first noticeable thing after transplant was just how clear their minds are and that a “mind fog” has risen allowing them to think clearly again”. So all in all being on dialysis brings an increased risk of mortality and a leaves you with a harsh cruel inconvenient way of life, most patients will tell you how they struggle coping with dialysis alone! Last year 1300 people in the UK waiting for a kidney donor transplant either died or became too sick to have one. Words cannot explain the stress and on-going pressure patients with kidney failure have to live with, using that dastard dialysis machine, getting hooked up every night, not being able to just take a dip in the sea or pool because there is a pipe with a hole in your abdomen that will become infected, not being able to travel (well not easily) because you need to drag along the machine and boxes of dialysis fluid and other bits and pieces, not to mention the almost permanent constipation that causes untold problems with the process of PD dialysis. It's enough to drive any sane man / woman crazy! You will not believe me but you need a spare room dedicated to keeping all the supplies necessary for just one month’s dialysis at home. Each night I use 2 x 5 litre bags of dialysis fluid along with sets of piping and fittings drain bags etc needed to do the dialysis. My life now days is acceptable during the day, although patients on dialysis get very tired bordering on exhausted just living, but then comes that dreaded evening when you have to once again face the machine and get hooked up for a minimum of 8 hours getting woken every 2 hours because you cannot drain all the fluid that has gone into the peritoneum (cavity housing all our internal organs etc) before it can pump more in. All this changes when and if you are lucky enough to get a donor kidney. From a life point of view you get your life back again, but not without serious risk of different complications . In order for a person’s body to accept and not reject a donor kidney, you now have to live with seriously strong Immunosuppressive drugs or immunosuppressive agents, antirejection medications that inhibit or prevent activity of the immune system that will otherwise reject the donor kidney. This brings extra risk amongst which is an increased risk of cancer and general infection because the bodies immune system is suppressed.

So now where do these "donor" kidneys come from. There are basically 3 sources. 1. Deceased (or Cadaveric) Donor: This is a kidney which comes from a person who has just died, generally by way of accident's, and they have made it clear they are in favour of organ donation should it happen to them. I do hope people reading this consider being a donor and make their wishes clear especially to friends and family and join the “Organ Donor” register. 2. Living Related Donor: A kidney which comes from a blood relative such as a parent, brother or sister or close relative who match the recipient’s blood group and tissue type etc, and of course are fit enough to be a donor. Included in “fit enough” will be a clinical assessment of their general health and the possibility of complications in their lives as they age including diabetes etc that would rule them out. (Diabetes is the next highest cause of kidney failure to a genetically inherited cause) 3. Living Unrelated Donor: A donated kidney from someone not related to the person who needs a transplant such as a spouse or friend and finally. 4. Altruistic donation is when a person offers to donate a kidney to someone who needs a transplant but whom they have not known previously or do not know well. This could be unrelated or even a distant family relation or friend of a friend or work colleague etc. There are 6 different matching criteria, the first and most important is blood type, then they match tissue types etc to get the best possible match giving the transplanted donor kidney the best chance of working. A transplanted kidney can last for many years if things go well and the match is good reducing the need for the harsh drugs needed to prevent rejection. It costs the NHS a lot of money to keep someone alive on dialysis, as an estimate about £20 000.00 each year so it makes sense to try and get as many transplants done as possible. Luckily for those of us in the UK, the system (NHS) covers the costs of a living donor making the life giving gift of a donation including to some extent loss of income because of the transplant and or travel expenses if from another country. My blood type is O- so anyone with an O blood type, otherwise fit and healthy could make a donation to help improve my life. The problem I face is that because any O group kidney donor can be used on any recipient blood group, say someone who is A group needing a kidney, can in fact use a donor from an O donor, therefore very few O group kidneys ever become available on the general lists we spoke about. Net result is that any unfortunate patient who needs an O group kidney like me generally has a very long wait before a suitable match becomes available. (If in fact one does at all). The best chance someone like me has is that a kind donor offers an O group kidney directly to me, thereby short-circuiting the list system. So far in my case there have been 3 offers. The first would have been my elder daughter, who sadly also has inherited the problem, so is ruled out as she may well need a kidney herself in the not too distant future. Then my other daughter, who sadly is pre-diabetic and obviously ruled out in case the diabetes damages her kidneys. Then my dear wife, who has offered and been tested but she is A group so not a direct match. In her case we have been put in a swapping plan called the "paired exchange system” where mismatch partners like us go into an exchange list and hopefully her A group kidney can go to someone who needs an A group and has an O group to offer/swap. Failing which I am left to make the best of a bad job as it were and hope for the best.
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
jbell
Posts: 389
Joined: Sat Apr 14, 2012 7:47 pm

Re: Living or existing with Kidney Failure

Post by jbell »

Hi Grey just read your post and it makes me a bit sad, because you are so right. People just pass my CKD over these days like as they cannot see anything wrong with me I am obviousley fine. No amount of trying to explain makes any difference either, your post was quite clear. I tried to read parts of it to my husband and daughter (captive audience today) but both quickly lost interest and returned to their iphones laughing ! Talk about feeling invisible and unheard and they probably think I moan such a lot they have stopped listening. I got the feeling you were feeling a bit like thhat as well, but I dont really have any good ideas to educate my family and friends to the seriousness of this illness, it is quite depressing all in all :(

Just out of interest Grey I am blood type Bneg what kind of donor do I need ?
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
Dotty
Posts: 160
Joined: Tue Mar 25, 2014 7:16 pm

Re: Living or existing with Kidney Failure

Post by Dotty »

Grey, your post summed up perfectly how friends and family are starting to treat me...the "oh how well you look" really struck a chord.

This is not a journey I would wish on anyone and I hope it has a successful conclusion for us all. I am only just entering the world of dialysis. It sure helps knowing that others have similar thoughts and feelings.
47 years old.
IGA Nephropathy diagnosed May 2013 with eGFR of 22%
PD dialysis started May 2014
3rd PD catheter fitted and failed July 2014
Hemodialysis started July 2014

Red Lippy and PMA (Positive Mental Attitude) gets me through each day!
MidgeMan90
Posts: 132
Joined: Fri Jun 22, 2012 8:49 pm
Location: Staffordshire Moorlands
Contact:

Re: Living or existing with Kidney Failure

Post by MidgeMan90 »

Hey Grey,

I totally agree with pretty much everything you have said there. I have been transplanted for nearly 3 years now via a living donor (my mother) and everything is going pretty well at the moment I won't lie but I feel your pain on PD. It brought back some unpleasant memories as I read through what you were saying and it makes me more grateful that I have a working kidney and I only wish you exactly that in the very near future.

The ignorance towards kidney failure is quite staggering and people don't put it on a level with cancer, heart disease but it is a terminal illness at the moment and it should be treated as such. The biggest units at hospitals will usually be cancer, heart, renal but I feel renal lags behind somewhat in the public conscious. What you were saying about people thinking everything is fine and dandy as we look physically better is unbelievably true and I have experienced it a lot. I sometimes feel like I nag if I go on about kidney failure and how it inhibits me as people think once you are on dialysis or transplanted that everything should be back to normal and we should perform like 'normal' humans but this just isn't the case. We aren't 'normal' humans and we never will be again fully. I just don't go on about it anymore and get on with things, which is probably a poor attitude and a dis-service to some top people on here and kidney patients worldwide.

I don't really know what the point of my post is but I wish you the absolute best and hope things take a positive turn for you as I am sure you deserve it.

And everyone else experiencing problems, complications etc as well.

All the best, Dan.
Diagnosed with end stage renal failure out of the blue - 11/02/2010
Haemo - February 2010 - April 2010
APD - May 2010 - June 23/2011
Transplanted via live donor - 24/06/2011.

Doing my best to look after that kidney.
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

Re: Living or existing with Kidney Failure

Post by SKM23435 »

Grey,

As someone just about to start dialysis - I recognised your post as unpalatable truth.
I'm now live on the transplant list and like you blood group O. I guess I'm in for a long wait.
I think the real horrors of dialysis won't hit me until I start it. They tell me I'll feel better on it but listening to you all on here I'm not so sure.

I've also already noticed people's lack of understanding. I look ok so what's the problem.
There is also the assumption that dialysis will make everything normal - which as you point out is not true.

I guess what I'm trying to say is that although people generally don't understand, this forum is full of people that do. I personally find that comforting (ie I'm not going soft or mad, others in the same club feel the same).

Best wishes
Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
jooles
Posts: 246
Joined: Fri Jan 18, 2013 2:11 pm
Location: Dorset

Re: Living or existing with Kidney Failure

Post by jooles »

Hi Grey. Sorry to read your post although I can empathise with a of it. We started our journey together - along with the lovely Cathy who I hope is doing well after her transplant. Who knows how long our journey will be - but when I read of all the poor little kids dealing with dialysis, I thank my lucky stars. I hate my machine but I love it too. I am constantly reminded when I read the US posts of how lucky I am to have it l funded. Our disease cannot be understood easily by others, even our nearest and dearest as, like you say, it is not visible. I try to be glad that they do not know the extent of my pain / discomfort especially my kids. After all, we do not know the extent of others' suffering if their illness is also 'invisible'. Living with this is really quite shite. But we are all still living. And our future donors are out there somewhere. Keep believing and hoping. ( and next time I post a 'down' message, please quote me! It's bound to come soon!)
Jooles
FSGS
Born 1966
APD Sept 2103 - March 2015
DCD Transplant QA Portsmouth 19th March 2015
cathys8
Posts: 76
Joined: Fri May 18, 2012 9:15 am

Re: Living or existing with Kidney Failure

Post by cathys8 »

Grey what an articulate post. I can definitely relate to all of it. Pre pd when my kidneys were functioning at 5% and I could barely walk up the stairs people were constantly telling me how well I looked, the implication being that I must feel well. Now I've had my transplant and while it's great and I do feel much much then when on dialysis we all know it's not a cure, simply another form of treatment (with a better quality of life we hope). Thankfully we have the support of each other on this site. It has been a lifeline to me as I know it is to many others
Cathy
40 yr old with Alports syndrome
CAPD since Sept 13
Nov 2012 - listed for transplant
27 Mar 2014 - I got the call!!
lizbee
Posts: 246
Joined: Thu May 02, 2013 11:02 am
Location: Glasgow

Re: Living or existing with Kidney Failure

Post by lizbee »

Hi Grey you have put my feelings into words and I fully agree with you with regards as to how others see us with CKD, I am just about to embark on dialysis and for me that will be it, there will be no transplant for me, but as you say the dialysis machine will keep me alive for however long it takes for me to die.........one of the things I have noticed whilst sitting in waiting rooms at both hospitals and my doctors is that you usually find a rack with leaflets about nearly everything medical you can pick up and read, but there are never any leaflets about kidney diseases and how or what happens if you find that you have one.......maybe that is something the NHS could look at and then perhaps others will look at us and feel sympathy instead of my don.t you look well.............................


Liz
I am 61 years old


diagnosed 17 years ago with Membratts disease

Now receiving dialysis

I am Scottish and live in Glasgow.
jbell
Posts: 389
Joined: Sat Apr 14, 2012 7:47 pm

Re: Living or existing with Kidney Failure

Post by jbell »

I think all the NHS would have to do is lift extracts from the posts on this topic and put it out to the public, I am certain they would be shocked to realise how awful and difficult kidney diseases are. I know if some of the people I know and this includes family and friends read these posts they might understand me a bit betteras people are indeed very blase about kidney failure.
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: Living or existing with Kidney Failure

Post by wagolynn »

Just a thought, I do wonder if we, with a condition or the general 'healthy' populace, would ever say to someone, 'you look as though you should be dead, will it be long?'. The norm is not to mention someone looks awful but rather gloss over it on the grounds that they must feel bad enough without pointing it out.

Whilst this does not help our condition, it may, I think, take the sting out of how we think we are perceived.

With any condition, it is very difficult to begin to imagine what it is like on the inside unless we have been there. Even then, thankfully, it is difficult to recall the details of a past condition, the message on the tee shirt fades very quickly.
lizbee
Posts: 246
Joined: Thu May 02, 2013 11:02 am
Location: Glasgow

Re: Living or existing with Kidney Failure

Post by lizbee »

My little grandson who is 6 years and whom I love dearly knows I have "sore kidneys" but finds it hard to understand how sore they are cos he can.t see them, so he just nods now when I say my kidneys are real sore today, about 6 months ago the consultant phoned me and said you have to get a cat scan so have arranged it for next week, when I came off the phone I was telling my son and the lttle one asks what a cat scan is so I try to explain to him about the machine and what it does. taking pictures of my sore kidneys so the doctor can decide what he wants to do with them being very bright like his granny he pipes up if they are taking pictures of your sore kidneys can you ask them to bring them home to show me he was very disappointed that would not happen.........................


Liz
I am 61 years old


diagnosed 17 years ago with Membratts disease

Now receiving dialysis

I am Scottish and live in Glasgow.
MandyV
Posts: 1717
Joined: Mon Apr 10, 2006 10:17 am
Location: Fulham

Re: Living or existing with Kidney Failure

Post by MandyV »

hey Grey - sorry you are going through such a tough time - is there a renal counsellor in your unit that you could talk to?

I was on PD for nearly 6 years and so understand exactly what it is like but I decided that I was going to act as if it was a (relatively) minor inconvenience and do exactly what I wanted as far as I could. Of course it requires much more planning but it is entirely possible and indeed one of the benefits of PD that you can travel - if you are going by car, take it with you, flying, either take it with you or get Baxter to deliver to your destination (I had deliveries all over the place!). As for swimming - why on earth not? I did - more in the sea than pools, but did do both. I am not decrying the hard slog it was at times but I did get through it and am very grateful indeed for my tx (and long may it last) - that being said it was not as bad as I expected in some ways, though I did not think that it would be so long waiting for tx.

Also - whilst I cannot deny I felt like I could leap over tall buildings post tx I certainly never had 'mind fog' so we are all different. People are not good at serious illness - it's not limited to CKD - I have seen and heard crass comments to and about loads of different conditions. The thing is that often with ESRF you get a yellow tinge to your skin and people can think it is a bit of a tan and therefore look 'healthy' when in fact it is the opposite!

Lastly your comment about O kidneys - as far as I am aware on the cadaveric tx list not 'everyone' can get them - only B blood group people who get a points deduction if it is an O kidney may get them. That means that yes you are slightly disadvantaged but not as badly as B group people are because for every other blood group the number of people waiting for transplant is roughly in the same proportion as the general population, but for B group kidneys there are a multiple and they are therefore the most disadvantaged. The issue really comes with the paired and pooled scheme as an O donor can give to pretty much any other group and therefore they may not join the scheme.

Keep your chin up and I hope that you feel better!
ScrapheapHuman
Posts: 109
Joined: Mon Apr 15, 2013 12:24 pm

Re: Living or existing with Kidney Failure

Post by ScrapheapHuman »

I have to say, this post scares me somewhat. Although I am the sort of person who needs to know what is ahead of me so I can 'prepare'

Last year when my kidneys dipped I felt awful, I just knew something was not right and asked for a blood which confirmed my suspicions. Then after about 3 months, they seemed to improve. But lately I have not been feeling great. Infact today is a bad day... I usually wear contact lenses and make-up I hate my glasses with a passion, but on days like today I don't even have the energy, nor the desire to even put my lenses in, never mind any make-up.

The scary part is, no matter how I feel right now, I know it is going to get worse! That terrifies me! I am a childminder by day, and can have up to 6 children, which is now getting too much for me. By September I will be down to just one child, then my own two, and I don't have any plans to take on much more - possibly one part timer for financial reasons. But I guess knowing what is ahead of me can only put me in a better position.

I too am blood group O, and have my Dad and husband willing to go through the process, but my Dad is a B - But apparently they can do a non-blood group match transplant, as long as the tissue matches.

I am generally a happy person, and keep telling myself 'it could be worse!'
An arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means it’s going to launch you into something great. So just focus and keep aiming.

http://scrapheaphuman.blogspot.co.uk/
Grey
Posts: 450
Joined: Wed Mar 30, 2011 12:04 pm
Location: Chester

Re: Living or existing with Kidney Failure

Post by Grey »

Emma, you should remember that what will be will be, as my old mother used to say, so worrying or not worrying will not change a thing. Well not so true, actually getting ourselves all worked up over something may even make it worse. So the best position is ....know all the facts that will then allow you to make good informed decisions along the way. Not working yourself into a mess means you have a clear mind when called upon to make decisions. We are all in this together and are here to help each other. You will be just fine !
After a long time of waiting an anonymous donor has arrived in my life.
Words cannot express my gratitude to this lady and my paired exchange wife donor making it all possible
transplant 19th June 2015...Going very well mind you 2 years later
ScrapheapHuman
Posts: 109
Joined: Mon Apr 15, 2013 12:24 pm

Re: Living or existing with Kidney Failure

Post by ScrapheapHuman »

Grey wrote:Emma, you should remember that what will be will be, as my old mother used to say, so worrying or not worrying will not change a thing. Well not so true, actually getting ourselves all worked up over something may even make it worse. So the best position is ....know all the facts that will then allow you to make good informed decisions along the way. Not working yourself into a mess means you have a clear mind when called upon to make decisions. We are all in this together and are here to help each other. You will be just fine !
Thank you, this site has been amazing. My husband usually hates forums, but he also loves this one. When I am thinking something, he always tells me to pop on here and ask.

Last year when my kidneys dipped I was so scared as I had no idea what was going to happen, it almost feels like my body had to give me a wake up call to say... be aware of what is going to happen. I do feel calmer knowing what is ahead of me, it's just the not knowing when it is going to happen that I hate. Also worried about how I will cope and the usual fears about dailysis and transpants

Thank heavens for this place :)
An arrow can only be shot by pulling it backward. So when life is dragging you back with difficulties, it means it’s going to launch you into something great. So just focus and keep aiming.

http://scrapheaphuman.blogspot.co.uk/
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