suggestion... how about introducing ourselves??

[MCQUEW]

Hi all -

I'm Billy and I have 3 kidneys, unfortunately 2 of them haven't worked in over 20 years and the other one, which was given to me by an anonymous donor, is unfortunately beginning to let me down. However since receiving my 3rd kidney almost 20 years ago I have got married, had a family..... and got divorced again. Cest La Vie. I have also been able to resume a music career as well as having a day job - so it's been good times. I plan to squeeze a year or two further out of my 3rd kidney yet. If anyone want to ask me anything about my experiences please fire away.

Billy

[MandyV]

Welcome to all the new members - I do hope that you will find the board fully of helpful information, supportive people and a great resource!

[Catherine60]

Hi everyone, I am new too . It is nice to know a bit about other members, my name is Catherine and I had a transplant in 2005. Since then I have become a granny twice! My sister flew in from Australia to donate a kidney for me, we call it Flo and I send regular post cards with messages from Flo. Post transplant I had a weird time making jam and sewing etc generally being homey and creative. Just like my sister Liz! Thankfully now I am fully back to my old self riding horses, training dogs and spending my days outdoors. Would love to hear if anyone had a similar experience .

[bigbuzzard]

Welcome to all the recent arrivals. Feel free to start a new topic if you've got any questions - even if they've been aired before, people are always happy to chat and go over things, and everyone is different anyway. When I first arrived here nearly 8 years ago now (what!?) it very quickly became an immensely helpful lifeline - I often describe it as being more useful than any of the clinical interventions that happened, just from the way it made me realise that loads of other people were going through something similar, and were also getting on with a pretty normal life.

Catherine - my first transplant was from a fellow musician . Just before he left hospital, we played together, which a friend happened to film - at 2'33'' of the film, we improvise exactly the same phrase, that neither of us had ever played before, which was a bit odd. There are loads of stories around of people with similar stories to yours after transplants (though I on't remember seeing many on this forum).

Billy - I'm also a musician - great to have another one here Google suggests you might be up in Edinburgh - for many years I came up to play at the Fringe there, in the Spiegeltent and at The Pleasance. Then in 2010, our 'post transplant' band, Big Buzzard and The Organ Grinders came to do a stint at Ghillie Dhu. Who knows, perhaps we'll be back in 2014.

[ste]

Hello
I had a Kidney biopsy in March 2011
My egfr was at around the 40 mark,then dropped for about a year to 20
Egrf has now dropped to 8 in the space of 2 months
I have been refered to the low clearance clinic at Manchester MRI
My sister and brother had bloods taken last week to see if a match
My sisiter has the same blood group,brother not the same
Waiting for my sisters typing to come back
They say I will know when I need to go on dialysis,but at the moment I am just a little tired at night,have slightly swollen ankles and feel cold
Has anybody on this forum started dialysis later than Egfr 8 and at what point did you start it
Which Dialysis did you choose and why?
Thanks in advance

[eliznew412]

I am 58 years old and have one son now in his 30s. I live in Bristol and work in a call centre full time.
On the renal side I was diagnosed aged 6 years and attended the renal unit for years. The psychological and emotional side was not addressed in my day, and I think still probably wouldn't be because had I had fairly good renal function up to young adulthood. However I has taken decades until I realised that I had been over-compensating for my own culture and kept my feelings fearfully to myself. Over time however I have noticed that any emotional effects are accepted if it is the GP or consultant that suggests there is effect emotionally but never if I say anything.

I have never had need to see the value of feminist thinking but a heavily masculine medical service does have an effect on female patients growing up "under" the system. It’s also difficult to complain about or address emotional damage and I think the British culture of encouraging the stiff upper lip, unless of course there is something you can DO about emotions. However I think I developed difficulty in really finding out about what I wanted out of life and spent most of my youth trying not to upset my Mum. I don't think Dad's were too much involved with bringing up kids in their day. To make matters worse my Mum was a nurse and nurses were easily sacked in her day and doctors were virtual gods. Consequently, although a very intelligent woman she was fairly cowed under by doctors and of course very anxious about me. Like most kids I picked up on the subtext socially and concentrated on avoiding trouble ie not expressing my feelings or hopes about treatment. At the age of 14 I realised that "they" wouldn't cure me and refused an invasive X-ray involving catheterisation. My Mum begged, pleaded, told me how much expense and care had gone into investigating me. The poor soul, (addicted to smoking from years of nursing) got the fags out and smoked a fag whilst trembling with anxiety. On reflection I think she was worried I'd be taken into care.

I am told that times have changed and that children are treated like real people I not expected to silently guess on the adult subtext. However I not so sure that times have changed that much, particularly during hard economic times. I can see the tendency for the clock to be turned back despite better self awareness and chat boards. There is I feel a real danger of the medical world being turned back with an increasing social gap between consultants and their patients. Emotions and personal experience are "immeasurable" and can therefore possibly discounted. Emotions and personalisation of treatment is more time consuming. Doctors fondly like to think of themselves as merely offering a service to consumers - ie patients are "consumerists". I think it is obvious however that when you are diagnosed in childhood, the situation is more complex and needs better attention than this.

Apologies that this is my introduction but I am still grappling with the above as a 58 year old woman. Sometimes us oldies can express things that younger patients may experience but can't vocalise.

1) As for what I hope for now, well to hang around long enough to be able to have a positive impact on the management of patients with long term conditions like mine. 2) To get a better job. 3) To live long enough to be more sociable and get to know other people better. 4) Last but not least hope to see my son get a job. He keeps applying but not getting anywhere. I can't help brambling myself with him been brought up with a very anxious Mum. I seemed to always had too much pressure.
That the thing about emotions and experiencing bullying, it may be difficult to measure but the damage doesn't stop with the individual and can spread out unless addressed.
I hope I live long enough to address what makes patients unnecessarily vulnerable.

[Stine]

Hi,
My name is Stine, I'm 26 years old and Danish - and living in Denmark.
In the spring of 09 I was diagnosed with Good Pasture's syndrome, which is an extremly rare autoimmun disease. I was on hemodialisys for 16 months and then got a kidney from my mom. The kidney is still working perfectly well after 3+ years.

I just found this site by coincidence

[Alibobs]

Hello there, I'm Ali and I joined this group as I have two sons aged ten and eight who have just been diagnosed with Alports and, by extension, so have I! We are awaiting genetic tests to confirm which kind as there is no family history. My sons are both deaf and are awaiting their newly ordered hearing aids. One is likely to start on ACE inhibitors after the next nephrology appointment. I have high blood pressure (controlled by ace inhibitors) blood & protein in urine but as yet no decline in kidney function. However, I have other mysterious health issues which my nephrologist believes *may* be Alports related, although my symptoms are atypical (arthritis, mainly.) In a couple of months we've gone from never having heard of Alports to discovering that 3/4 of our family have it! Bit of a head scrambler. Thought this forum would be a good place to learn more and connect with others in a similar position
I'm also a PhD student researching in mental health, I have an ex racing greyhound and I'm a music nut. Pleased to meet you all x

[Thumps]

Hi Ali, nice to see you here

There's a few Alports people here, and I'm sure you'll find people to chat to even if we may not be that knowledgable!

Hello Stine as well, a Danish member, how exotic!

[cassie]

Hi all...

26 year old from Manchester, UK
I was diagnosed with CKD aged 11 months and have had recurring kidney infections and UTIs all my life.
I had right nephrectomy in 2008 leaving me with one remaining kidney with a eGFR of 30.
My remaining kidney function has been declining ever since. I reached an eGFR of 10 in May 2013
I started peritoneal dialysis in july 2013
Peritoneal dialysis didn't work for me as I wasn't getting adequate dialysis, got peritonitis 3 times and suffered pain daily.
I have been moved onto haemodialysis now and have been receiving treatment at Manchester Royal Infirmary 3 times a week since the start of February 2014

My mum was a full live donor match but unfortunately had a heart attack, therefore she is now not eligible for surgery. I am currently still looking for a live donor.

Been struggling quite a bit recently so it's nice to find a forum of people going through something similar. Nice to meet you all.

[jooles]

Hi Cassie
Sounds like you've had a rough start to 2014. How are you finding the haemo schedule? It must be around about a month now for you, so time enough for the reality of the routine to sink in. This forum is great for support and people sharing their experiences is quite comforting and reassuring, I've found. Hope all goes well for you and that the year gets better for you.
Jooles

[jbell]

Hi Cassie, sorry to hear of your problems. How are things going on haemo ?, do you struggle with the new routine compared to pd ? It sounds like you have had problems for most of your life which must be very difficult to cope with. You will find lots of help and support on here, chat anytime janbell

[Ainsue]

Hello my name is Ainsue, age 32 from North London. My kidneys are ok but I have frothy pee and my doctor said I needed some blood tests. I've read a bit here today so I'll try to ask her what my results are and get a Gfr number.

[jbell]

Hi Ainsue, hope all is ok when you see dr, let us know your results. Welcome to forum we are a very friendly and helpful lot

[lizbee]

Hello all you lovely people who have joined the forum, I have been neglectful of saying hello to you all but I will try to mend my bad ways. I do hope you all get as much from the forum as I do........if in doubt ask away on here and generally there is someone who can help.

I am 60 years old

diagnosed 17 years ago with Membratts disease



Now awaiting dialysis with 8% kidney function.

I am Scottish and live in Glasgow..


Liz