suggestion... how about introducing ourselves??

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kidj
Posts: 3
Joined: Sat Jun 14, 2014 10:05 am

Re: suggestion... how about introducing ourselves??

Post by kidj »

morningdew wrote:Hi, I'm Mornindew, or Joan. I'm Scottish, but have lived in Australia for many years. I am nearly 80. I have two sons and a daughter, two grown-up granddaughters, a chihuahua, and a miniature poodle. I had glomerularnephritis twenty-one years ago, and I have a message for Kidj. Although I always had blood in my urine, and my eGFR deteriorated slowly, it has only now reached 30 after all this time. I worried a lot at first, but then got tired of being worried and got on with my life. I have had twenty-one years of reasonably normal life since then. Now, I'm slowing down, but there are other problems in the picture too, due to aging, especially arthritis. In the time you may well have ahead of you, Kidj, who knows what medical advances may have been made. I wish you well.
Hi Joan,

Thanks for this touching message. I thought that my options in life will be constrained so much by the disease. I was thinking 'Don't get married' 'Don't do a PhD' and take the safer route. Your message is very reassuring of the fact that I took a risk and just try to live my life as I want it to be.
I will find the courage later on to share more about my experience so far. :)
HeatherC
Posts: 8
Joined: Fri Jul 11, 2014 10:04 pm

Re: suggestion... how about introducing ourselves??

Post by HeatherC »

Hi, my name is Heather. I am 26 years old and I suffered chronic renal failure at 17. It came as a real shock as I went to my GP for a different reason entirely, but thanks to her she gave me a full blood test and two days later I had my diagnosis. Stage 5 kidney failure, Creatinine level at 1200 and kidney function at 3%. This was in September 2005. I wouldn't have survived till Christmas. I was put urgently on peritoneal dialysis and my family went through the tests to be a donor. My mum and dad were not a match (both type A, and my dad is overweight and my mum has diabetes, but not overweight) and my oldest brother was type A, whereas I'm a type O. Thankfully my second brother was a type O and he went through all the tests. We waited a year prior to transplantation due to him being at university and he asked if he could finish his degree. Throughout being on dialysis I stayed at school, doing my A-levels. Shortly before starting my final A-level year we had a date for transplant. In September 2006, just over a year of being diagnosed, my brother donated his kidney to me. Throughout this, I still managed to finish my A-levels!

9 years on, it still seems fine. I have just finished a degree in diagnostic radiography and I hope to get a job soon to be able to practice my profession. I was inspired to take up my degree after my own experience in the NHS. I want to give back to the NHS what it gave me. :)
Johnylefox
Posts: 71
Joined: Thu Aug 07, 2014 3:57 pm

Re: suggestion... how about introducing ourselves??

Post by Johnylefox »

Hello,

My name is John and I am 39. I am from the North West of England. I work around Europe and the middle east.

4 years ago I had a works medical and passed it (save for protein in my wee which I had a flex cystoscopy for and this revealed a normal bladder). I kept the records/transcript and it showed an eGFR of 72. This was the same two years later, precisely 72.

18 months ago I developed a back pain/fever on New Years Eve. Anyway one week ayer I am peeing blood and 6 months later I go onto ACE tablets, covertly.

Prior to the birth of our first child in November 2013 I went to BUPA for a medical to see how I was generally doing. It flagged up an eGFR of 58 and creatinine of 127, four weeks later a biopsy confirmed IGA Nepthropathy.

Since then I have been having two monthly blood tests and the creatinine was 110 for 6 months or so. Last week it was 127.

There were problems with using different labs so now I use one place to do my bloods.

I understand I am 3a, and that if I am to have a kidney disease this is the one to have allegedly.

I am just facing so much uncertainty. A whole new raft of terminology to get used to. I don't know where to start.

Would you believe my partner only has one kidney and when we met and fell in love I always said I would give her one of my kidneys willingly. Now she jokes she wouldn't touch it!

I look on the positives, my bloods get done frequently so I should be alerted if things go wrong, rather than waiting years between tests, its not 6 times a year.

I can still work, and I have private medical for as long as I stay in this job.

Everything seems upside down. I know things may be fine, I know things may get very difficult.

Anyway, I am John and I am reluctantly joining this forum. Reluctant because my condition is far better than many and I feel like I have no right to complain. But in another sense, who knows what is next.
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: suggestion... how about introducing ourselves??

Post by wagolynn »

Hello John,

Sorry to hear of your problems, it is a shock when you are first diagnosed. There is no fixed time scale to how the condition will develop, the blood checks will keep the medics in step with what is going on. You should be having your blood pressure monitored, high blood pressure will destroy healthy kidneys never mind sick ones.

The NKF website has lots of help and a list of some useful books.
This site should clear up blood tests.
http://www.edren.org/pages/edreninfo/bl ... isease.php
and http://www.edren.org is a gateway to lots of reliable information.

Many patients get information of the internet about diet changes required when kidneys have failed, ignore this, don't change your diet without being monitored by a dietician it can be dangerous. On food, the closer you can get to the five-a-day (fruit and vegetable's) the better for your general health and therefore your kidneys.

You will of course find help on this forum.

Best wishes.
kidneymatt
Posts: 1
Joined: Sat Nov 01, 2014 8:10 pm

Re: suggestion... how about introducing ourselves??

Post by kidneymatt »

hi rick,
my name's matt. I have a chronic kidney condition...creatinine at 1.7 and anemia and looking for some people who can relate and/or provide me w/ some information about how to best reverse and or combat it.
craig.ferguson
Posts: 1
Joined: Mon Oct 27, 2014 3:14 pm
Location: Airdrie, UK

Re: suggestion... how about introducing ourselves??

Post by craig.ferguson »

Hi my name is Craig,
I live in Airdrie, UK
23 Years Old.
Was diagnosed with IGAn around 7 years ago.
Over the last few years my GFR stayed around 50ish, apart from a time in 2012 when i had shinggles my GFR dropped to around 30.
GFR was 48 as of around february 2014(this year) and has rapidly dropped to currently GFR 21 and creatine 318.
Things have moved so fast in the last few months and has really taking me aback.
I Joined this group a week or so ago and have found it to be really good.

Thanks
Craig
Last edited by craig.ferguson on Tue Nov 04, 2014 9:00 am, edited 1 time in total.
wagolynn
Posts: 1362
Joined: Thu May 23, 2013 2:49 pm

Re: suggestion... how about introducing ourselves??

Post by wagolynn »

kidneymatt wrote:hi rick,
my name's matt. I have a chronic kidney condition...creatinine at 1.7 and anemia and looking for some people who can relate and/or provide me w/ some information about how to best reverse and or combat it.
Speak to your consultant and GP they should be treating the anaemia. As to your kidneys there is no known way of reversing the condition, apart from getting your blood pressure low 140/90 or better.

Best wishes.
hotashel

Re: suggestion... how about introducing ourselves??

Post by hotashel »

craig.ferguson wrote:Hi my name is Craig,
I live in Airdrie, UK
23 Years Old.
Was diagnosed with IGAn around 7 years ago.
Over the last few years my GFR stayed around 50ish, apart from a time in 2012 when i had shinggles my GFR dropped to around 30.
GFR was 48 as of around february 2014(this year) and has rapidly dropped to currently GFR 21 and creatine 318.
Things have moved so fast in the last few months and has really taking me aback.
I Joined this group a week or so ago and have found it to be really good.

Thanks
Craig
Hi Craig,

There are lots of people here who will understand. It dropping is the first shock that you get, even if you have known for a while you have poorly kidneys when everything goes south its still a shock. Then they will start talking about transplants and dialysis which is a shock when they first tell you, then it goes quiet for a while then its all hands on deck. I am now just 9% GFR and I am going to have my PD catheter fitted today so by this time tomorrow I will have a front tail!. At around your GFR they will start preparing your for the transplant process so you will start the discussions if you have anyone who is willing to be a live doner (you still have to go on the transplant list) you will fill in forms and have various tests. You will have a chest xray, an ECG and a heart scan and you may also go on an exersize bike with a peg on your nose and a pipe in your mouth to see your lung function. There is nothing nasty at that point. You will also be asked to consider which dialysis you would want if it became necessary so look them both up and don't be afraid to ask if you can go to your local dialysis unit and speak to people who are actually having it so you can make an informed choice. It is scary but there are lots of people to ask on here. Take care
lizbee
Posts: 246
Joined: Thu May 02, 2013 11:02 am
Location: Glasgow

Re: suggestion... how about introducing ourselves??

Post by lizbee »

craig.ferguson wrote:Hi my name is Craig,
I live in Airdrie, UK
23 Years Old.
Was diagnosed with IGAn around 7 years ago.
Over the last few years my GFR stayed around 50ish, apart from a time in 2012 when i had shinggles my GFR dropped to around 30.
GFR was 48 as of around february 2014(this year) and has rapidly dropped to currently GFR 21 and creatine 318.
Things have moved so fast in the last few months and has really taking me aback.
I Joined this group a week or so ago and have found it to be really good.

Thanks
Craig
Hi Craig it is a shock when it drops so much, and then you are awaiting dialysis of some sort and that can take time too, I was kinda where you are now after my kidneys being ok for around 17 years. I am now on dialysis this is my 7th month and although I have had my ups and downs with it, I am now starting to feel better, like everyone says find out as much as you can and be informed all the way and you will do much better with your failing kidneys. This is a great place to find out stuff and everyone on here will be willing to help if they can..........stay positive and take care

Liz
I am 61 years old


diagnosed 17 years ago with Membratts disease

Now receiving dialysis

I am Scottish and live in Glasgow.
gavjg

Re: suggestion... how about introducing ourselves??

Post by gavjg »

Hello Everyone

I finally plucked up the courage to join the forum, as I am really struggling emotionally as I am on home dialysis PD and life is so difficult.
I started first on haemodialysis in August 2013 and because I was finding that difficult I decided to go on Peritoneal Dialysis in May 2014 and although apparently I am managing it well according to the hospital it still is extremely difficult.
I tried seeing a councillor which didn't help and I suffer from anxiety, I feel so lonely and it may sound stupid but I just would love a hug now and again, and I do find that the emotional side of support for a dialysis patient is quite limited.
At present I am doing CAPD manual exchange bags, 3 times a day 2.5L bags as originally I was doing 4 x 2L but said to the hospital it was too stressful and as 3 x 2L bags wasn't giving me enough clearance they compromised on the 2.5L bags and that's OK at the moment giving me enough clearance.
I feel stupid talking about things because in the past I have been bullied about certain aspects which has made me hide a lot of emotion but I feel like I cannot take much more, and suicide has come to mind quite often, or just stopping dialysis as a I feel that I have no quality of life.
I know I am a good person and have a good heart and I am always there for support if anyone needs it but do feel that I desperately need more support myself and that's why I have joined here.
I find it difficult meeting new people, but after a while I tend to open up more, I have tried several groups which wasn't a success and my doctor put me on Lorazepam to help me as a last resort.
I only take 0.5 at night to calm me as I find I am always worrying about things and I am like all the other dialysis patients who are waiting on that all important call to say that a transplant has been found for me.
I hope I can make new friends on here as I would love to be a part of the community, I live in West London and I am 45.
Thank you for listening to me rant on and I look forward to speaking to all of you.

Gavin x
jbell
Posts: 389
Joined: Sat Apr 14, 2012 7:47 pm

Re: suggestion... how about introducing ourselves??

Post by jbell »

Hi Gavin so sorry you are finding life so difficult. To be honest I think any kind of dialysis pd or hd is going to be stressfull and change your life such a lot. Will you start to use the pd machine through the night and stop doing manual exchanges ?, or am I missing the point and you have already done that ? Why did you not take to hd? I know it is an absolute pain losing so much of your free time and can be difficult at times as well but in my case I do feel the benefit on my free days. Do you get any suport from family or friends ? I find on my shift at the unit I feel a bit isolated as there are only 6 of us and next to me the youngest is 70 - 90+ and they all seem to sleep through the 4 hours. Which is probably the best way ! Having kidneyy disease is so difficult and other people don't always understand. I know emotional help is scarse on the ground as well. Do you work Gavin or are you too unwell ? You are not alone as the majority of people on here have had difficulties and low times, I am sure you can overcome this and hopefully things will settle down for you. I wish you well Gavin and stay in touch ...... Jbell
Age 48
CKD diagnosed 2010
Diabetic chronic complications since age 12
Registered Blind 2000
Need kidney/pancreas tx
Egfr 12
gavjg

Re: suggestion... how about introducing ourselves??

Post by gavjg »

jbell wrote:Hi Gavin so sorry you are finding life so difficult. To be honest I think any kind of dialysis pd or hd is going to be stressfull and change your life such a lot. Will you start to use the pd machine through the night and stop doing manual exchanges ?, or am I missing the point and you have already done that ? Why did you not take to hd? I know it is an absolute pain losing so much of your free time and can be difficult at times as well but in my case I do feel the benefit on my free days. Do you get any suport from family or friends ? I find on my shift at the unit I feel a bit isolated as there are only 6 of us and next to me the youngest is 70 - 90+ and they all seem to sleep through the 4 hours. Which is probably the best way ! Having kidneyy disease is so difficult and other people don't always understand. I know emotional help is scarse on the ground as well. Do you work Gavin or are you too unwell ? You are not alone as the majority of people on here have had difficulties and low times, I am sure you can overcome this and hopefully things will settle down for you. I wish you well Gavin and stay in touch ...... Jbell
Hi and thank you for your kind reply.
I was finding HD difficult because of several things like having to wait for hospital transport there and back, you have to be ready 2 hours before your session so it turned out by the time I was ready and by the time I got back was over 7 hours each time.
Because I use a stick due to vein damage from thrombosis I had in 2007 I get hospital transport, otherwise it would of meant I took 2 buses to get there and two back, I suffer badly with public transport due to my anxiety plus sitting on the machine unable to talk to the person next to me as the beds are too far away and the machines were also in the way.
So that's why I decided on PD, Doing the machine instead of the manual bags isn't an option as my bedroom is upstairs and the bathroom is downstairs so taking the big waste bags down the stairs plus other factors so I can only do CAPD manual exchanges.
I live with my father who is 85, that's a worry and although he is very good for his age I still worry about the future ! Things started going wrong for me in 1998 when I had an industrial accident on my neck, then in 2007 I found out I had kidney problems and thrombosis in my right leg, in 2009 my mother died of cancer and in 2013 started dialysis.
I don't work due to my disabilities, and still also find it difficult coping with losing my mother in 2009, it was a horrible death and although again I saw a councillor I am still finding life difficult.
Not to mention several disastrous turns with Internet dating, I was scammed out of £3000 so I have certainly had my share of problems, to my stress is like a pile of books with it getting bigger and bigger and when I manage to clear some of those books then more get put on the pile so it's never ending.
I am a good listener and like to think I can be there for others and offer some comforting advice, but accepting things myself is a different matter.
If anyone wants a chat, then please email me or PM me and I hope I can be of help to you all.
It's nice to be able to talk to other people in the same situation as myself, who understand what I'm going through
Henriettab
Posts: 48
Joined: Sun Jan 11, 2015 7:15 pm

Re: suggestion... how about introducing ourselves??

Post by Henriettab »

Hi Everyone
I thought I should give a quick intro and reason for joining the forum.
I care for my father who is nearly 89 and has had CKF since major surgery in 2009. He has moved from stage 3 to stage 4 and still seems to be declining. He has had UTIs, cellulitis, swollen legs, white nails, sleepy and getting more and more muddled although there are other health problems in the mix- stomach surgery , stroke, AF and mobility problems so I am not expecting miracle cures but come here for information as I need to understand everything and know what to expect.
Our recent visit to the renal department confirmed that conservative management is the realistic plan forward.
hotashel

Re: suggestion... how about introducing ourselves??

Post by hotashel »

Hi,

I am sorry to hear about your dad's decline, basically what they are telling you is that transplant or dialysis is not an option (I am not a doctor so if you require medical clarification do ask the doctors) but they will make sure he is comfortable and manage his symptoms.
take care xx
Dibs
Posts: 76
Joined: Fri Jan 23, 2015 1:29 pm
Location: Somerset

Re: suggestion... how about introducing ourselves??

Post by Dibs »

Hello.

My name is Nigel and I live in Somerset. I am 54 and have polycystic kidneys. I've known about this for 25 years. My eGFR is down to 11 now. I'm not on dialysis yet, but expect to be there in a few months. I am about to go on the transplant list. I can't say that I am suffering too much at present, just occasional cramp, itching, tiredness, feeling cold and aching side. I thought that I would come on here though because I expect things to start happening soon and might be glad of some advice.
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