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Author Topic: Hi from the UK  (Read 4889 times)
Matchb3
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« on: April 05, 2014, 09:40:15 PM »

I found this site while googling "kidney disease and forgetfulness".  It was such a huge relief to find other people who are experiencing the same thing. I am not going mad!

I'm 55 and I'm waiting to start dialysis. I've recently become anaemic so that's a whole new pleasure to endure. I'm diabetic and have sleep apnoea, so I tend to be on line in the middle of the night. I'm really looking forward to reading all the discussion threads. It'll give me something to do when I start treatment!
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Bambino_Bear
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« Reply #1 on: April 05, 2014, 11:19:43 PM »

 :welcomesign;

So glad you found us!
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I am a caregiver to my wonderful husband,  He is 4p and started PD October 2013. We have several living donors waiting to be tested for a transplant. Dialysis is a bridge to get us where we need to go. 
He had a transplant in November 2019.
talker
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« Reply #2 on: April 06, 2014, 05:34:12 AM »

I found this site while googling "kidney disease and forgetfulness".  It was such a huge relief to find other people who are experiencing the same thing. I am not going mad!

I'm 55 and I'm waiting to start dialysis. I've recently become anaemic so that's a whole new pleasure to endure. I'm diabetic and have sleep apnoea, so I tend to be on line in the middle of the night. I'm really looking forward to reading all the discussion threads. It'll give me something to do when I start treatment!

Hi Matchb3

Welcome :welcomesign;

Root around the many posts here and you'll find more relief, and suggestions with what you are experiencing.      :flower;

talker
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Be Well

"Wabi-sabi nurtures the authentic by acknowledging three simple realities: nothing lasts, nothing is finished, and nothing is perfect."

Don't ever give up hope, expect a miracle, pray as if you were going to die the next moment in time, but live life as if you were going to live forever."

A wise man once said, "Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present."
cassandra
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« Reply #3 on: April 06, 2014, 08:25:49 AM »

Welcome to the site Matchb3

    :welcomesign;

Take care, Cas
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
2020 start Gambro AK96

       still on waitinglist, still ok I think
kristina
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« Reply #4 on: April 06, 2014, 12:50:00 PM »

Hello Matchb3 and welcome to IHD.
I am in a similar situation. Until about 10 days ago I was in hospital for over two weeks because of ESRF and dangerous levels of anaemia.
I was almost unable to walk or look after myself and was told in hospital, that I was too anaemic and too unwell to start with dialysis now.
The doctors gave me an iron infusion, then some injections (forgot how these injections were called)
and as an outpatient I was given four "Mircera" injections until now.
These “Mircera” injections have changed my life for the better :
I  don’t feel so cold anymore, my Urea (bun) , Creatinine and haemoglobin levels have improved a little
and I can manage a little better again. I am able to read a book again, able to learn a little on the piano again, go for my walks etc.
and my appetite has come back again as well... 
Before the iron infusion and “Mircera” injections I felt completely incapacitated and could not do anything anymore.,
I could not even eat anymore and lost lots of weight because all my food tasted horrible, even a cup of coffee tasted bitter...
... At the moment I enjoy a little “honeymoon” of feeling better, before finally starting with dialysis
but hopefully this pre-dialysis “honeymoon” lasts for as long as possible before I have to start dialysis ...
The trouble with the situation at the moment is, that everything is so uncertain...
... Is your treatment similar to mine?
Where in the UK are you? I live in London.
Best wishes from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
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« Reply #5 on: April 06, 2014, 01:21:49 PM »

Hello Matchb3 and welcome to IHD.
I am in a similar situation. Until about 10 days ago I was in hospital for over two weeks because of ESRF and dangerous levels of anaemia.
I was almost unable to walk or look after myself and was told in hospital, that I was too anaemic and too unwell to start with dialysis now.
The doctors gave me an iron infusion, then some injections (forgot how these injections were called)
and as an outpatient I was given four "Mircera" injections until now.
These “Mircera” injections have changed my life for the better :
I  don’t feel so cold anymore, my Urea (bun) , Creatinine and haemoglobin levels have improved a little
and I can manage a little better again. I am able to read a book again, able to learn a little on the piano again, go for my walks etc.
and my appetite has come back again as well... 
Before the iron infusion and “Mircera” injections I felt completely incapacitated and could not do anything anymore.,
I could not even eat anymore and lost lots of weight because all my food tasted horrible, even a cup of coffee tasted bitter...
... At the moment I enjoy a little “honeymoon” of feeling better, before finally starting with dialysis
but hopefully this pre-dialysis “honeymoon” lasts for as long as possible before I have to start dialysis ...
The trouble with the situation at the moment is, that everything is so uncertain...
... Is your treatment similar to mine?
Where in the UK are you? I live in London.
Best wishes from Kristina.
Hello again kristina

That you are still recovering the health you need and deserve.

Oh my, well do I recall going back to those days when I first went off my normal health schedule.
Nothing tasted good. Nothing smelled good. Family and I actually laughed about all my sniffing and tasting food and drink.
If you have no objections, may I offer my prayers toward you.

talker
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Be Well

"Wabi-sabi nurtures the authentic by acknowledging three simple realities: nothing lasts, nothing is finished, and nothing is perfect."

Don't ever give up hope, expect a miracle, pray as if you were going to die the next moment in time, but live life as if you were going to live forever."

A wise man once said, "Yesterday's the past, tomorrow's the future, but today is a gift. That's why it's called the present."
Matchb3
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« Reply #6 on: April 06, 2014, 08:48:52 PM »

Hi Kristina,

I feel humbled when I hear about what you've been through. The iron infusion has kicked in after about a week and that, along with the sunnier weather, has made me feel brighter. But I still can't walk without getting out of breath and I feel so dopey sometimes that I no longer feel confident driving. The other day I realised I was driving along with the hand brake on!  Anaemia is so debilitating, isn't it? But at least it's one thing that other "normal" people can identify with of they've had it before. Especially women who had it when they were pregnant.

By the way, Kristina, I live in Norwich.

Thanks to you and everyone for your friendly welcomes!
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kristina
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« Reply #7 on: April 07, 2014, 01:48:17 AM »

Thank you talker and thank you Matchb3.
You are right Matchb3, anaemia can be very debilitating and I remember  getting out of breath whenever I tried to walk (that was before I was admitted to hospital),
in fact I had become so dopey before my treatment started, that in hospital I even needed assistance to walk to the bathroom because I had become dizzy when getting up,
 (because of my very low blood pressure at the time) and my confidence had almost gone...
...it is true, anaemia is something many people can identify with and it is not so hard to understand/explain as kidney failure is.

I do hope you feel better soon and drive your car with confidence again.

Kind regards and good luck from Kristina.

P.S. Are you interested to come along to the IHD-UK meeting in Cambridge as well? I shall try to come along,
but because of my uncertain medical situation, I don’t know whether or not I shall be well enough to travel to Cambridge...

« Last Edit: April 07, 2014, 01:50:02 AM by kristina » Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Matchb3
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« Reply #8 on: April 08, 2014, 05:53:21 PM »

Hi Kristina,

No,I didn't know about the IHD-UK meeting in Cambridge. I'd love to know the details about when and where, also about IHD-UK. In the short time I've been with IHD I've found everyone so supportive. It'd by great to know about a UK connection.

Thanks to all who have replied to me. 



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kristina
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« Reply #9 on: April 09, 2014, 01:12:19 AM »

Hi Matchb3,
Thanks for your answer. The details about the IHD-UK meeting this April 2014 are to be found in
the IHD member section  under the title: "2013 IHD Let's get together in the UK" ...
The Cambridge meeting is all organized by Sugarlump... :2thumbsup;...
and I am sure she will give you more the details if you contact her...
I shall try to come as well but I am not quite sure yet how "my two little fighters" are functioning...
... I had another "Mircera" injection and shall have the next one the following week...
... and hopefully these injections assist my  body and my "two little fighters" ...

Best wishes and good luck from Kristina.
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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Poppylicious
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« Reply #10 on: April 14, 2014, 05:33:40 AM »

Hi Matchb3 and a very belated  :welcomesign;!

I used to live in Norwich ... love the place.

 ;D
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- wife of kidney recepient (10/2011) -
venting myself online since 2003 (personal blog)
grumbles of a dialysis wife-y (kidney blog)
sometimes i take pictures (me, on flickr)

Everything was beautiful, and nothing hurt.
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« Reply #11 on: April 14, 2014, 12:47:12 PM »

Hello Match....

 :welcomesign; to IHD... I'm not too far from you... I'm in Dublin...

Visit us often, and keep posting... We LOVE busy posters, here!...

Darth, Moderator...
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Cared for my late mum, Elsie who had Kidney Failure... Darling mum died on July 15th 2014... May her gentle soul rest in peace....
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« Reply #12 on: May 10, 2014, 03:27:04 AM »

Welcome to the group:)

J
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Creator of London Kidney Social: https://www.facebook.com/groups/LondonKidneySocial/

Medical stuff, includes 3 kidneys, cancer, meningitis, 1 heart attack and its long and not that interesting! Maybe one day I'll write a book.! `

I have an eclectic taste in music, I fly kites, I read, write, tog, blog and have a bit of a passion for multicellular eukaryotes, and kites.

Founder of Kites4Kidneys - Start making your kites for WKD 2015..
https://www.facebook.com/kites4kidneys
cariad
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« Reply #13 on: May 10, 2014, 07:52:33 AM »

 :welcomesign; Matchb3!

Plenty of other Brits on here to keep you company. I live in England, not too far from you - but keep in mind I'm a Yank and by my standards I'm 'not too far' from just about anywhere in the UK.
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Be kind, for everyone you meet is fighting a great battle. - Philo of Alexandria

People have hope in me. - John Bul Dau, Sudanese Lost Boy
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