suggestion... how about introducing ourselves??

This is the forum for the Kidney Patient Guide. We welcome feedback about the site and any information that may be of use or interest to other visitors.

IMPORTANT NOTE: This forum is not for queries that would otherwise be addressed to a doctor. If you have a question about your condition or treatment please consult your renal unit or doctor. We do not have any editorial or medical resources to answer individual queries.

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dreamboy
Posts: 2
Joined: Sun Jul 23, 2017 10:48 am

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

Post by dreamboy »

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.
Epgibbons
Posts: 13
Joined: Tue Aug 01, 2017 8:07 pm
Location: Abingdon, Oxfordshire, UK

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

Post by Epgibbons »

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.
yakusukosareta
Posts: 1
Joined: Thu Aug 17, 2017 11:57 pm

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

Post by yakusukosareta »

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.
Bearded one
Posts: 1
Joined: Mon Aug 21, 2017 3:45 pm
Location: Retford, Notts

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

Post by Bearded one »

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
SKM23435
Posts: 289
Joined: Wed Oct 16, 2013 2:39 pm

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

Post by SKM23435 »

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
rheaybou
Posts: 1381
Joined: Mon Nov 14, 2011 11:04 am
Location: Doncaster

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

Post by rheaybou »

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.

==
Alports.
Ann Croft
Posts: 4
Joined: Sun Sep 24, 2017 6:28 pm

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

Post by Ann Croft »

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 .
Henriettab
Posts: 48
Joined: Sun Jan 11, 2015 7:15 pm

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

Post by Henriettab »

Thanks admin-I'm back as myself now Henriettab
Mike2003
Posts: 7
Joined: Wed Oct 04, 2017 11:48 am

I posted on this site under eliznew412

Post by Mike2003 »

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
JohnW99
Posts: 23
Joined: Wed Oct 25, 2017 10:54 am

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

Post by JohnW99 »

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.
Jimbles7645
Posts: 2
Joined: Sun Oct 29, 2017 5:29 pm
Location: Belfast, Northern Ireland.

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

Post by Jimbles7645 »

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
wagolynn
Posts: 1370
Joined: Thu May 23, 2013 2:49 pm

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

Post by wagolynn »

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.
Jimbles7645
Posts: 2
Joined: Sun Oct 29, 2017 5:29 pm
Location: Belfast, Northern Ireland.

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

Post by Jimbles7645 »

Hi Wagolynn

Thank you for your helpful, common sense reply. I have made an appointment to see my GP. Thank you. James
JMan
Posts: 3476
Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Re: I posted on this site under eliznew412

Post by JMan »

Mike2003 wrote: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
Might be an idea to just create a new email address and login with that, also do check junk mailbox incase the 'reset' messages have gone in there.

Did I think PM you with my contact details, which are the same..

J
"Dialysis! What is this? The dark ages!"
L. 'Bones' McCoy, ST"
Read my blog:)
Live to Fly
Image
http://www.flickr.com/cybercast
Balty
Posts: 2
Joined: Wed Nov 22, 2017 8:09 pm

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

Post by Balty »

Hello! My brother passed away in July so I decided to pull it together on the body front, losing 50 lbs rather quickly through diet & exercise. I went to my GP for a physicial & all my blood work came back fine, except for my GFR, creatinine, & BUN. My GP concluded I've stage 3 ckd & referred me to a kidney doctor.

My GFR is 35 ml, creatinine is 2.01 mg/dl, & BUN is 40 mg/dl. My HCT was 36%, indicating anemia.

I've questions about whether stage 3 ckd is reversible? Can I raise my GFR (or at least maintain it)? Could my rapid weight loss have affected my GFR, creatinine, & BUN numbers? Are drug prescriptions available to bring GFR, creatinine, & BUN results into acceptable ranges?

I'm reading stage 3 ckd patients should adopt a low-protein, low phosphorus diet. If anyone could contribute any reliable diet tips on how to accomplish this, I would be most grateful.

My blood pressure, cholesterol, glucose, & BMI were all fine. Thanks to anyone who reads this board for comments, thoughts, & feedback.
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