suggestion... how about introducing ourselves??

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

Postby Steve1960 » Tue Jul 11, 2017 9:24 pm

wagolynn wrote:Hi Steve1960,

This can only ever be a personal choice (bearing in mind the from the medics).

If I had to make the choice, I would go for the reconstruction, risks, and all, my logic being, if it works a transplant my not be necessary with all the baggage that brings. All the tissue involved will be yours.

Best wishes.

I think you are probably correct, I am 75% convinced to have the reconstruction, I will be in UCH on Monday for the first clinic after my consultant referred me.
Steve1960
 
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Re: suggestion... how about introducing ourselves??

Postby dreamboy » Sun Jul 23, 2017 10:56 am

hi im seo from the philippines. my father has 500 creatinine level; he is now taking kremezin as recommended by his doctor. already taking for 3 weeks, but crea is still high. according to study, 3 months taking it can lower creatinine. we will continue to let him take it.
dreamboy
 
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Re: suggestion... how about introducing ourselves??

Postby Epgibbons » Tue Aug 01, 2017 10:19 pm

I think putting useful intro info into your signature would be better, thenevery post will include it. Also fill out the user profile, particularly location in case some one lives near you as discussing face to face is so good
Heart transplant in 1990, CKD started 2015, Heamodyalisis for 6 months, APDfor 18 months.
Epgibbons
 
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Location: Abingdon, Oxfordshire, UK

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

Postby yakusukosareta » Fri Aug 18, 2017 1:26 am

Hi! Im yakusuko sareta a transplant coordinator from Japan, we cater patients with heart , liver and kidney problems. Hope to help patients with the same problem here. Thank you.
yakusukosareta
 
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Re: suggestion... how about introducing ourselves??

Postby Bearded one » Mon Aug 21, 2017 4:32 pm

Hi
I'm Colin from Retford UK I was diagnosed with CKD in 2010 & type 2 diabetes at the same time (probably the cause of my CKD) it was only found on pre-op tests following a motorcycle accident.
In 2014 I had a tumour on my left kidney so that kidney was removed, the other one couldn't cope on it's own so I went on dialysis. Around the same time I developed eye problems & am now registered partially sighted. At that time I weighed 19st 2lbs(268lbs for our American friends) I now weigh around 220lbs & have cured my diabetes.
I was on dialysis for around 2.5 yrs and received a transplant in April this year from a deceased donor, so far things are going well with all my blood figures within range, I just need to lose a bit more weight as I put some on when all my restrictions were lifted :lol: & get fit. The main problem is motivation as I don't really have anyone to train with.
I'm now retired due to my eyesight as I was a truck mechanic and need to be able to drive for that
Diagnosed with ckd & diagnosed type 2 diabetes in 2010
Left nephrectomy in 2014 dialysis started
Lost 4.5 st & cured my diabetes & high blood pressure in 2014
Transplanted April 2017 from deceased donor
Bearded one
 
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Re: suggestion... how about introducing ourselves??

Postby SKM23435 » Thu Aug 24, 2017 8:43 pm

Hi Colin. Welcome.

I had a similar problem with motivation for exercise. Pre transplant it was easier - I wanted to be fit for transplant. Couldn't do a lot but I was at least motivated. Post transplant I was so much better and busy doing other things exercise seemed rather boring and a drag. Then I discovered audiobooks. I go to the gym, plug myself into a good book and 45 minutes flies by.

You've done a fantastic job with the weight loss so far. Hope you manage that last bit to your goal.

Sue
Started APD July 2014
On transplant and paired exchange lists.
Transplant 9/5/15
SKM23435
 
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Re: suggestion... how about introducing ourselves??

Postby rheaybou » Wed Aug 30, 2017 2:59 pm

Bearded one wrote:Hi
I'm Colin from Retford UK I was diagnosed with CKD in 2010 & type 2 diabetes at the same time (probably the cause of my CKD) it was only found on pre-op tests following a motorcycle accident.
In 2014 I had a tumour on my left kidney so that kidney was removed, the other one couldn't cope on it's own so I went on dialysis. Around the same time I developed eye problems & am now registered partially sighted. At that time I weighed 19st 2lbs(268lbs for our American friends) I now weigh around 220lbs & have cured my diabetes.
I was on dialysis for around 2.5 yrs and received a transplant in April this year from a deceased donor, so far things are going well with all my blood figures within range, I just need to lose a bit more weight as I put some on when all my restrictions were lifted :lol: & get fit. The main problem is motivation as I don't really have anyone to train with.
I'm now retired due to my eyesight as I was a truck mechanic and need to be able to drive for that


Colin,

If you are ever looking for motivation then I am just down the road in Harworth. I come through often on the bike and find cycling a fantastic way to get fit.
Now 35 with Alports and I had my first kidney-versary 18th feb 2013....I hope to have many more.

My living donor and his family are doing all well.

==
34 year old with Alports.

Living donor transplant take two 18/02/2013.....
rheaybou
 
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Re: suggestion... how about introducing ourselves??

Postby Ann Croft » Sun Sep 24, 2017 6:37 pm

Hi Everybody, more of a reintroduction really as was on here before (henriettab) but lost old sign on details and change of email meant registering again. I will put the details in a separate post .
Ann Croft
 
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Re: suggestion... how about introducing ourselves??

Postby Henriettab » Tue Sep 26, 2017 8:45 pm

Thanks admin-I'm back as myself now Henriettab
Henriettab
 
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I posted on this site under eliznew412

Postby Mike2003 » Wed Oct 04, 2017 1:05 pm

Hi everyone, I first joined this site back in 2008 I think. Apologies but I was unable to reactivate my username so had to borrow my son's details to say Hi again. I've been waiting a couple of days or say for a reply to my email to admin. I guess there must be a lot of emails to them.

I am 62 years old, living in Havant. I am at end stage renal failure 11%eGFR. I have one grown up son (still living at home with me! I count myself lucky to just about still be able to work full time. Its been a very rough road though as anyone searching on the old site board under "eliznew412" will see.

Sometimes its difficult to chat about the effects of being a end stage renal failure but I do appreciate it when folk find the courage to talk about thinks, particularly the embarrassing stuff. It can be a very isolating condition otherwise even at predialysis stage with diagnosis like a cloud over my head from childhood. Somehow having a place to get in touch with other patients reduces that isolation. There seems little time to go online but when I do someone always has something helpful to say. I am pretty amazed I reached the grand old age of 62! battling through depression, bullying, isolated etc. (Admin please can you sort something out so I can get my profile back - I seem to be blocked - isolated again! :roll: ). Cheers LIz
Mike2003
 
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Re: suggestion... how about introducing ourselves??

Postby JohnW99 » Thu Oct 26, 2017 9:32 pm

Hi my name is John, I am 51 and live in Worcestershire UK. I was diagnosed with an unidentified CKD 2 years ago following pre op checks for a minor op.

My father and half of his siblings (plus his mother) all died from conditions related to CKD.

I hope to find other people with the same condition, maybe the disease can then be identified and blocked from future generations.
JohnW99
 
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Re: suggestion... how about introducing ourselves??

Postby Jimbles7645 » Sun Oct 29, 2017 5:49 pm

Hello friends. New member.

My name is James, I'm 62 and from Belfast, Northern Ireland. About fifteen years ago, I had an unexplained illness where I just felt very generally unwell with zero energy. The only investigation that showed any abnormality was a low eGFR at around 50. The "illness" lasted about six months and then resolved spontaneously. I did see a nephrologist who basically reassured me and changed my blood pressure medication, since then I have had my GFR checked annually.

Roll forward to 2014 when I was diagnosed with a high grade cancer of the appendix (very rare, 1 per million per year) - it had spread to my right ureter. I had major abdominal surgery and reconstruction / reimplantation of my right ureter followed by eight gruelling cycles of chemo. A year after surgery, my renal function started to decline and my ureter was found to be blocked, assumed to be recurrence, but stricture caused (we think) by loss of blood supply to the ureter. Attempted to stent twice without success, so had a nephrostomy for six weeks, but basically right kidney "dead". My eGFR is now 28 and my oncologist has referred me again to the nephrology team in Belfast.

I have many health issues related (I think) to my cancer and treatment. I'm now wondering if some of my symptoms are related to my kidney function?? With a GFR of 28 - what symptoms should I expect? One really bothersome thing is low grade headache, until around three weeks ago, I NEVER suffered from headaches, but it's there now all the time, could that be related to my kidney function? All advice appreciated.

Much love and good health to you all. James xx
Jimbles7645
 
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Re: suggestion... how about introducing ourselves??

Postby wagolynn » Mon Oct 30, 2017 4:09 pm

Hi Jimbles 7654,
Welcome to the forum, you appear to be having a difficult time.

With a eGFR of 28 you should be OK, as far as kidney function, though it doe's need checking at intervals to see which way it is going.

The low level but constant headaches could be due to poor kidney function but I would mention this to your GP, they will have a better overall picture of your state of health.

I would be wanting to make an effort to get my blood pressure (BP) down to about 120/80, as high BP kills kidneys, even healthy ones.
To this end, get your salt down to no added salt, no salt in cooking food, avoid prepared foods (microwave meals etc.).
Stay away from energy drinks they tend to have salt added.
As a substitute use pepper and more herbs and spices, do not use Low salt or similar, they substitute sodium for potassium, which is not a good idea.
Otherwise, move towards a five fruit and veg per day diet (Search internet) which will improve your general health.

At this stage (eGFR 28), there is not much can be done, it becomes a waiting game, unless a specific cause can be found that might be treatable.
Claims that this or that diet will cure your kidney area rubbish, if anything can be done your nephrologist will say so, same goes' for things like taking bicarbonate of soda.

Intervention in the form of dialysis doe's not usually start until eGFR is around 10.

Best wishes.
wagolynn
 
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Re: suggestion... how about introducing ourselves??

Postby Jimbles7645 » Mon Oct 30, 2017 5:56 pm

Hi Wagolynn

Thank you for your helpful, common sense reply. I have made an appointment to see my GP. Thank you. James
Jimbles7645
 
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