Appointment on 12th Aug (brought forward) bad news :(

[Duker5]

Hi all,

I had bloods done on the 6th of August for an upcoming appointment on the 12th of August (brought forward from the 9th of September) anyway my gfr has dropped from 27.1% in March to 6% now and Creatinine has risen from 227 in March to 880.

Needless to say I was admitted on the 8th of August after receiving a phone call telling me I needed to come in and be seen straight away! They took bloods and did an ultrasound and they said my kidneys were too small to try steroids as they don't think they'll do any good now, and the bloods came they took Thursday night came back and they said they didn't have to start me on dialysis straight away as they first thought as other levels were stable.

I'm more than shocked and quite scared as to what to expect now, as they've said I will almost certainly have to start on dialysis in the next week or 2, i've to go back in the morning to speak to a specialist dialysis nurse I think they said, but don't really know what to ask or what type of dialysis is the best either long or short term?

Anyone whose been on (or is on) haemo or PD have any thoughts?

Thank you.

[jan4alan]

This must be terrifying for you. The nurse you see will give you lots of information which might be difficult to take in. So if you check out some good website for information you will get loads. Try kidney research uk, they have lots of info, NKF ,national kidney federation is worth a look as well. Also you might be able to check out YODDA, which is the Yorkshire Dialysis Decision Aid. This gives clear info. It's possibly on the kidney research uk website, as they funded it, but might be online now anyway.

Personal choice is very hard to get to grips with. I wanted peritoneal dialysis but having had several attempts I had to give up. I like the fact that it doesn't affect any part of your circulatory system whereas haemo dialysis does. Now I have home haemo dialysis, I'm very well leading a busy active life and have some flexibility in the regime because i do it at home with support from my very lovely caring husband. Nobody wants this but I'm very grateful to be well, and lets face it alive. It does take time to adjust and obtain the full benefits of dialysis as you psychologically have to adjust as well as physically adjust to a new way of life.

Good luck with the next phase of your life. You will be ok but it's one of those face the fear and do it anyway. The annoying bit is when the staff treat it as everyday and normal but it isn't to you at all. It's huge in your life. You can do it!
Jan

[MandyV]

Gosh - that must have been blow. In many ways the worst part is the time now - the anticipation and not knowing what is in store.

Whichever dialysis you choose if at all possible i would go for the home sort, you will at least have a degree of control over your life and I found that essential. I opted for PD and got on absolutely fine with it - it all takes a while to get used to but the PD nurses were there every step of the way and very supportive. You ideally want a nephrologist who is a PD specialist as there is sometimes a bit of an art with getting things running smoothly and knowing if and when to change things. If you search back on my posts you can see that I traveled extensively for work and pleasure and could not have done that on haemo. Additionally (as I later found out) haemo was far from straight forward for me with my extreme clotting.

If you are being listed for tx then, nice as it would be to skip dialysis, it will prepare you for the discipline post tx and you will really notice the difference. PD is good in that it also teaches you wound management and how to keep sterile and change dressings! plus it helps preserve your RRD (residual renal function) so if you are still passing urine you may well continue to do that for as long as it lasts (I did for around 6 years) which means that you don't have the level of fluid restrictions most haemo patients have (daily haemo is the exception)

Finally if you look on the NICE website you should find patient guidance on both haemo and PD and they should point out the advantages of each in addition to the info Jan has given you.

Good lunck

[Chris Wright]

Wow, that must be really scary for you.

A similar thing happened to me. At College in Manchester on a Tues, felt terrible, went to see the College Doctor at 6 o'clock in the evening, he said i had to go into my hospital that evening, in London, 180 miles away. I went in the next day and started dialysis the next week.

I can't advise as to which you choose, but the hospital staff should be experienced enough to talk to you about the ups and downs of each and which will suit you.

Best of luck, remember many of us have been through it and are ok now, even though it was frightening to begin with.

Let us know what you decide and how it's going.

Chris

[Tibbs]

Oh that sucks, I'm sorry you've had such bad news!

Hopefully you'l lfind the right dialysis option for you - have they discussed the possibility of transplantation?

[rheaybou]

Well what a kick in the bollocks that is!

The only thing I can say is that you are at a very good hospital with fantastic staff and have Sheffield Northern General just up the road. (I hope I remember that you are at Doncaster)

Apart from knowing you had reduced function I had a similar experience. I went for PD to start with, the thought of having a fistula was terrible for me. Starting PD gave me a easy introduction into dialysis and allowed me to work full time and feel normal. However this method doesn't work for everyone and there is no way to test to see if it will for you, its just trial and error i'm affraid.
If you pick HD you will need to have a fistula made, this cant be used straight away and you will need to have a line fitted into an artery in your chest/lower neck. The main downside to HD is that you will need to fit around the spaces they have availiable. You could be Mon, Wed, Fri or Tue, Thur, Sat!

However you will have at least three units open to you; Doncaster, Mexbrough and Worksop.

I would be looking to family now for a living donor kidney and when you are next in to see anyone they should be asking about the transplant list - get on it asap!

I know your head will be spinning and it will feel like the end of the world, but people are now setup to make things better for you.

[lizbee]

Hi all,

I had bloods done on the 6th of August for an upcoming appointment on the 12th of August (brought forward from the 9th of September) anyway my gfr has dropped from 27.1% in March to 6% now and Creatinine has risen from 227 in March to 880.

Needless to say I was admitted on the 8th of August after receiving a phone call telling me I needed to come in and be seen straight away! They took bloods and did an ultrasound and they said my kidneys were too small to try steroids as they don't think they'll do any good now, and the bloods came they took Thursday night came back and they said they didn't have to start me on dialysis straight away as they first thought as other levels were stable.

I'm more than shocked and quite scared as to what to expect now, as they've said I will almost certainly have to start on dialysis in the next week or 2, i've to go back in the morning to speak to a specialist dialysis nurse I think they said, but don't really know what to ask or what type of dialysis is the best either long or short term?

Anyone whose been on (or is on) haemo or PD have any thoughts?

Thank you.

It must be devasting and quite shocking for you to have that kind of news, I am in a similar position awaiting vein mapping for a fistulat to be made and then dialysis, to be its a waiting game and I am getting more and more apprehensive about dialysis the longer it goes on. I have been told that if I became ill they would start right away with dialysis with a line into my chest below the neck, I have fantastic doctors, they look after me very well but a the end of the day its not them inside my head just wondering how it will all go.....I have had a kidney disease for 15 years but it is just in the last 18 months that it all started to go downhill with gradual worsening of kidney function I am currently at 8% but other levels are not so bad.I suppose unlike you I have had time to come to terms with it all, but I am beginning to think that I might not have dialysis after all........I am not suitable for a transplant so not a lot of options for me.

I wish you luck and I am sure that you will be feeling a lot better when it all gets started.................

Liz

[wagolynn]

Liz,
A fistula operation is simple (from a patient’s point of view); I had mine done under local anaesthetic, in AM, out and back home in time for tea. In some cases, some surgeons prefer to use a general anaesthetic.
Dialysis should not be a problem particularly if there are 'good' staff at your unit.

Good luck.

[lizbee]

Liz,
A fistula operation is simple (from a patient’s point of view); I had mine done under local anaesthetic, in AM, out and back home in time for tea. In some cases, some surgeons prefer to use a general anaesthetic.
Dialysis should not be a problem particularly if there are 'good' staff at your unit.

Good luck.

Thank you for your good wishes, I know how its done they have kept me well informed and I have even watched a video of the surgery on you tube.........the staff are very good at my unit...........its my own head that can.t get around the idea of dialysis and I think cos of the long wait I am starting to question whether to go ahead with it or not. I have been very unwell with different things of late and the thought of all the trekking back and forward to hospital does my head in I can only have it done in hospital as my other problems stop me from getting any other type of dialysis................I am constantly tired, feel sick most of the time, and have been a lot, have infection after infection and I am just very down about the whole thing...........I also know that not to have it would eventually led to my kidneys failing completely so I am at a loss as to what to think......no matter how much information I have it does not change the thoughts I have in my head. I am told I am not yet sick enough to benifit from dialysis and I think just how much worse do I have to be.................I am just having a moan I do apologise but thanks for taking time to reply to me.

Liz

[jan4alan]

Duker I would love to know how you've got on?

Lizbee it was a bad experience for to start HD after PD but with a GfR of 6 for some time it was very necessary. I was scared stupid about the process but more about the way it was going to change my whole life. It took me about 6 months to feel the full benefit of HD, but I did feel better physically very quickly. I was taught home Hd from the start and including that learning curve I reckon it took me 6 months to psychologically get to grips with it. If I had HD at hospital all the time and no choice of doing it elsewhere I would have settled a lot quicker. So think of it as something you don't want to do but something that will benefit you greatly, enjoy the benefits when the time comes. You will be amazed at the difference it makes to the way you feel now. All the best lizbee!

[wagolynn]

lizbee,
You could reject dialysis but without any medical intervention, the average lifespan is said to be about 14 days.
Dialysis, in whatever form, looks to me to be a much better option, yes it will involve changes but the trick is to look for the advantages (like staying alive with a quality of life) rather than focusing on the disadvantages. Unfortunately, one of the likely consequences of kidney malfunction is a tendency towards depression.

We would all rather be 100% fit but we aren’t, as a species, we spend the bulk of our lives abusing our bodies anyway. We only start to think about this when things go wrong.

Sorry to preach but it is all so much easier if you can find the bright side, keep looking!

Good luck.

[lizbee]

I do understand that there is nothing but dialysis to go on with life......there is conservative care so there would be medical intervention.......I have had this disease fo r 15 years and I guess I am just tired of it all and the waiting, you talk about a better quality of life but I have yet to come to terms with the fact that dialysis might do that, but I have spoken to people on it and their kidney function is.nt that much better than mine even one lady who had a transplant and at that time my kidney function was better than hers. I have to find my own way forward in all of this, we are all so different and I am finding it hard to believe that my quality of life will be any better..............maybe I should not put these thoughts up here as most people want to be better and I might just be bringing gloom whenever I post..................

Liz

[bigbuzzard]

Hi Duker

I remember being called by Guys hospital a few weeks after a blood test on a Friday back in 2006 and asked "Can you come in on Monday, and how are you feeling?" I arrived in the renal dept for the first time to be told my creatinine was 960, function around 6% and could I come back on Thursday ready to start dialysis. I said, "How about putting it off until next week so I can go skiing in France this weekend as arranged?" - "We really would advise against that," they replied. so I took their advice, came back on Thursday when the result was confirmed (a bit worse in fact) and started haemo that afternoon after having a neck line plumbed in. On the Sunday, after two somewhat depressing dialysis sessions, I found this forum, and decided that other people seemed to be getting on with their normal lives despite kidney failure. Then back three times a week until I could change to PD a few months later. It all seems a long time ago now, two transplants, a marriage, a daughter and a move to a new life in the Devon countryside later. I think the last 7 years have truly been the most interesting and fulfilling of my life. Huge thanks to everyone here, and to the NHS for making this whole thing much more manageable than it might otherwise have been.

However things turn out, my best hopes and wishes that you and everyone else here can find a positive way through it all. Good luck with it.

[Duker5]

Oh that sucks, I'm sorry you've had such bad news!

Hopefully you'l lfind the right dialysis option for you - have they discussed the possibility of transplantation?

Yeah they've discussed possibility of a transplant but not had any meetings with anyone yet.

The only thing I can say is that you are at a very good hospital with fantastic staff and have Sheffield Northern General just up the road. (I hope I remember that you are at Doncaster)

I would be looking to family now for a living donor kidney and when you are next in to see anyone they should be asking about the transplant list - get on it asap!

I know your head will be spinning and it will feel like the end of the world, but people are now setup to make things better for you.

Yeah i'm at Doncaster. And this transplant list, how does it work exactly? I mean 7 people have said they'd be tested but how do they go about doing such things? I presume i'd still go on the list but wouldn't the wait be much less with having 7 potential donors already willing to be tested?

Can anyone tell me how the procedure on Friday will feel as I'm quite worried, the whole neckline thing is terrifying me, such as how far in they go and how long it will take etc, to how I'll feel afterwards

[rheaybou]

Yeah i'm at Doncaster. And this transplant list, how does it work exactly? I mean 7 people have said they'd be tested but how do they go about doing such things? I presume i'd still go on the list but wouldn't the wait be much less with having 7 potential donors already willing to be tested?

Can anyone tell me how the procedure on Friday will feel as I'm quite worried, the whole neckline thing is terrifying me, such as how far in they go and how long it will take etc, to how I'll feel afterwards

I had a neck line fitted after nearly a year on PD, remember this is going on my own personal experiences and feelings towards HD.

It was the most traumatic procedure I have ever gone through.....sorry but that is how I felt! It wasnt painful or uncomfortable, but just mentally knowing what they will/are doing made me terrified.

The whole thing took place in an xray theatre, this I was told was to make sure the lines are positioned correctly. You lay on your back on the table with your head turned to the left and are prepared, my advice is dont look at the stuff they are going to use!

The renal doctor who performed mine wanted to talk me through the procedure, I asked him nicely not to bother The anesthetic is the most painful part, the rest is just pushing and pulling sensations, the whole thing takes about 30 minutes. Was then wheeled back to the ward and then given a run on the on ward dialysis machines for 2 hours to ensure all was working well.

The promised me a pre med to take the edge off my nerves, but I never got one and forgot to ask, my advice....ask!

The first few treatments they didnt take any fluid, I was still on PD at the time. They ease you in to the time and amount of fluid(if any they need to take off)

If you ahve any other concerns/questions then send me a message and I can give you my email. Having gone through the same stuff at the same hospital it may help, or frighten you to death!

You should also think about contacting DaBKPA.

http://www.dabka.org.uk/

Now onto the real important part, you should be refered to Sheffield to meet with a transplant suegeon soon, but mention to the nurses and doctors that you have people willing to consider testing for living donor transplant.

The living donor team are fantastic, your potential donors need to call this number(see below), you are out of the loop as they see it as patient pressure. You will need to go along and give blood when they do etc. A word of warning, this process will take about 12 months to complete, so be prepared for one hell of an emotional rollercoaster ride. Carole, Lisa, Debbie and Caroline are the people you will deal with - they are brilliant.

01142715131 - ask for living donor coordinators.

http://www.saka.org.uk/downloads/saka_u ... r_2010.pdf

Feels like I have given you so much, but anything else I can do to help please dont hesitate to ask.

Richard