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

Postby wagolynn » Fri Jan 23, 2015 4:00 pm

Hi Dibs,
Welcome to the KPG forum.
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Joined: Thu May 23, 2013 2:49 pm

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

Postby mancladuk » Fri Jan 23, 2015 4:38 pm

Age 42, Born with one kidney which failed around 24, transplanted in 96 had one of my mums, lasted 8yrs then developed Hodgkin's lymphoma under went 4mths chemo 15 days Radio Therapy, lost the transplanted Kidney started on overnight APD eventually that wasn't working for me so took the plundgeto Heamo dialysis doing 3 days a week. Now i'm still on heamo but doing nocturnal dialysis 8hrs every other night.

Been on the transplant list just over 2yrs

Thats me in a nutshell
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Joined: Fri Jan 23, 2015 4:29 pm

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

Postby wagolynn » Sat Jan 24, 2015 2:59 pm

Hi mancladuk,

Ah, such is life...

Welcome to the KPG forum.
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Joined: Thu May 23, 2013 2:49 pm

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

Postby tauresa » Mon Jan 26, 2015 8:08 pm

Hi, I am Anne and I am 48. Diagnosed with PKD when I was 34. I am starting dialysis tomorrow as my function is 5 and my creatinine is past 700. I still work full time and feel semi ok, apart from the nausea and tiredness. hopefully I will get some energy back so I can go out dancing again as I do miss that a lot. I am also on the transplant list and from a Latin background but live and work in Scotland. I feel is very important for me to keep positive and think about my condition as something I have but does not me in living my life, working and being a positive influence for my friends and Family. I am in need of advise with regards to what to take to my first Dialysis session? Do I take food? A blanket? Reading stuff ans what else would I need?? Any advice will be very welcomed. Thanks
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Joined: Mon Jan 26, 2015 6:32 pm

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

Postby hotashel » Mon Jan 26, 2015 9:00 pm

Good on you for being positive like you I work full time and before I started dialysis felt tired and sick but I still went to work every day as I had control over that. I do PD at home each night, I am assuming that you are doing haemo so I am sure that one of the others that have the experience of this type will be happy to advise you further, I picked PD as it suited me better due to work and children. Give it 3-4 weeks and you will feel so much better wait and see :lol:
Good luck keep us posted with how it all goes

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

Postby wagolynn » Tue Jan 27, 2015 3:16 pm

Hi tauresa,
If you are starting Haemodialysis, the first session is usually about two hours, to see if you have any adverse reaction.

If you have a fistula, any reading matter has to be handled with one hand, brand new books can be a problem unless you break their backs. That is work your way through the book folding down, onto the cover, a few pages at a time.

Blankets are usually provide if asked for.

Food, some units do offer tea, biscuits or sandwiches, or you can take your own food, again remember you will only have one hand free.

With a neck line you have both hands free.

Go in comfortable but warm clothes, you are going to be relatively immobile for the length of the treatment, time range is 3 to 4.5 hrs.

Best wishes.
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Joined: Thu May 23, 2013 2:49 pm

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

Postby cph1234 » Mon Feb 02, 2015 10:59 am


I have posted on this forum a few times but can't remember if I introduced myself.
My name is Clive, I have PKD. I found out I had it when I was 35. Its been a slow decline but now I'm 53 and my GFR is 9%. I have to have HD, as do most people with PKD (no room for PD).
I haven't started dialysis yet. I was going to have a transplant from my brother. He passed all the medical tests but since then another problem has come up and now they may not
allow him to donate to me :cry:

I have a fistula which was put in end of Sept (2014) and thankfully its looking quite good :) . The plan for me is I have to have a kidney removed first. Then I will have to start dialysis.
If my donor brother is not accepted then I don't know what to do, I don't want to put anyone else through it, but the alternative is to wait on the transplant list which I gather can be 2 or 3 years or more.

I have been lucky too, like tauresa (Anne) and Dibs (Nigel), in that not really any symptoms. I did get gout in last 2 or 3 years but now on allopurinol and that has worked. Apart from that I do get itching and I am a little tireder than I used to be,
but thats all. I still work full time and do take exercise - I enjoy walking. I feel I have things in common with many of the members of this forum.

I too would be glad of advice.
Posts: 33
Joined: Tue Nov 27, 2012 2:10 pm

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

Postby Dibs » Thu Feb 05, 2015 5:14 pm

Looks like we are at a similar stage, Clive. I was expecting to be on the tx list by now. Soon I'm told.
I will probably go for PD. The renal access guy said that I 'should' be ok. One of the kidneys is getting near the removal stage, but not yet.
Posts: 76
Joined: Fri Jan 23, 2015 1:29 pm
Location: Somerset

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

Postby Minerva » Sun Feb 08, 2015 4:11 pm

Hello! I'm new!

My partner has stage 5 CKD and is on PD 4 times a day at present. I wanted to join here to see if there's anyone in a similar position to me :-)
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Joined: Sun Feb 08, 2015 4:06 pm

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

Postby scoutikins » Thu Mar 12, 2015 7:09 pm

HI I'm Mel.
I'm 25 and on the road to receiving a second transplant. My first tx was from my mom in 2012 due to ign. Went into rejection about a year later. I originally stumbled across this forum when I was looking for advice about birth control but stayed when I realized its a nice place to share thoughts and experiences.

I'm in the in between stages of starting dialysis or finding a living donor kidney before it comes to that. Creatine just took a spike to 4.8 after chilling in the 3's for a long time. I'm scared but optimistic about the future. I wish the best for and thank everyone here!
Posts: 2
Joined: Thu Mar 12, 2015 6:29 pm

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

Postby Charles E. White » Sun Mar 15, 2015 10:22 am

I am Charles from Pleasantville, Ohio.
I do peritoneal dialysis.
I have started a herb and fruit drink and all my test results have improved each month, I am glad to say.

It's good to be here.

Charles E. White
Posts: 1
Joined: Sun Mar 15, 2015 10:07 am

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

Postby wagolynn » Sun Mar 15, 2015 4:26 pm

Hi Charles,
Welcome to the forum.

The only research I have been able to find on the effects of diet upon ailing kidneys (patients on dialysis) suggests that a high fibre diet prolongs life and the quality of life. As a very rough rule of thumb, most people in the western world do not consume sufficient fibre. If you are interested in this, try 'UK five a day' in your favourite search engine.

Of course, the restrictions in diet, lower intake of salt, Potassium, and Phosphate, still stand (in America there may also be a restriction on Protein intake). These restrictions are necessary because dialysis is not very good at removing them, and salt needs to be reduced to help lower blood pressure. However, diet adjustments should only be made under the guidance of a renal dietician as all of these are important to life.
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Joined: Thu May 23, 2013 2:49 pm

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

Postby Mrs travis » Fri Mar 20, 2015 7:00 pm

Hi everyone

My name is Kay, I am a 41 female, who was diagnosed back in December 2014 with a stone filled infected right kidney. The stones were due to UTI infections which were mistreated by my GP and I had to have a nephrostomy tube and bag fitted due to it being completely blocked and infected.

I am now scheduled for surgery to remove the right kidney in May as my kidney function is 11% and is completely blocked and is impacting on several other organs. There was also some debris in kidney which required further investigation.

I am having some physiological problems as I am/was a model but obviously been sacked by my agent. It was my sole income and have now spent my rainy day funds. I was very successful at my career. My partner cant near to sleep in our bed anymore as he hates the tube and bag almost as much as I do. I have been putting dressings on it to hide it but to no avail.

I know my health should come before my vanity, but I want to rip this tube out. I also don't want to have the surgery as they going to fit a colostomy bag. No one can talk me round, I just not having that surgery. And I know what that will mean health wise.

I am so angry at my GP as it should have never got to this, but it's not productive and wont change my outcome. My whole life as I knew it has dramatically changed. I am about to throw my partner out as he should have been more accepting about this, I didn't get sick on purpose but I am no longer the beautiful woman he married in his eyes.

Our daughter has been fantastic through it all, she's the one who came to all the appointments and scans and held my hand when I got the bad news that they found other things as well as the stones. But I just don't know what to do, where to turn and how I can get through any of this.
Mrs travis
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Joined: Fri Mar 20, 2015 6:37 pm

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

Postby wagolynn » Sat Mar 21, 2015 3:29 pm

Hi Kay,

Life deals us some nasty hands from time to time, it is understandable that you feel angry.

I think it would help you if you could get some counselling to help you think this through, preferable before you make any irreversible choices.
Your nephrologist or GP can arrange this for you.

Best wishes.
Posts: 1206
Joined: Thu May 23, 2013 2:49 pm

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

Postby Keysersoze » Sun Apr 19, 2015 9:53 pm

My name is Colin and im 33. Ive just been diagnosed with stage 5 kidney failure with a creatinine level of 800 and very high blood pressure. I know zero about this and it doesnt even seem real yet. I started having kidney problems in late 2013 but ignored it until the nausea and vomiting and the gassy burps became daily and my lungs were crackling when i was breathing. Im due to start dialysis soon and have to get the op on forearm for fistula. In the meantime they will put a tube in my chest when they begin dialysis. I am not suitable for Peritonal dialysis as im 18stone and they say it works better on smaller people
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Joined: Sun Apr 19, 2015 9:45 pm


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