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 Bal » Mon Mar 21, 2016 6:26 pm

Hi my name is Bal. I am 47 years old. There was concern with my last pregnancy about my kidneys 14 years ago. After the birth tests were done and my kidneys were functioning at 35%. More recently they have been declining. And I renal function is 25% now. I had a biopsy last month and I have iga. Don't know much about this. But learning. When renal consultant told me. I had a lot of information to take in. And when he said any questions. I think I was stunned. It's only when I left the room. And had a chance to think about it. I have so many questions. I will be patient and wait for my next consultation. I am based in Scotland. But originally from Kent. Is there anyone on here that has iga?
Bal
 
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Re: suggestion... how about introducing ourselves??

Postby wagolynn » Tue Mar 22, 2016 4:08 pm

Hello Bal,
I am sorry to read about your kidneys.

Don't feel disheartened because you did not ask questions of your consultant, most people are unable to think of any at such times.

This website may get you started on answers or questions even. http://www.edren.org/pages/edreninfo/ig ... opathy.php

I find it helps to write down any questions as they pop into my mind, I take list with me when I see the consultant but I find that once I have written them I remember then anyway.

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

Postby Bal » Tue Mar 22, 2016 6:02 pm

Thanks. Yes will write down and take my sister for next consultation.
Bal
 
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Joined: Mon Mar 21, 2016 6:13 pm

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

Postby Sho25 » Thu Mar 24, 2016 11:30 am

SKM23435 wrote:Shona,

Hi and welcome.

I'm impressed. A pregnancy on dialysis. I've never heard of that before. You must be amazing.
I wondered if you could tell us more about it. I'm sure it would be on interest to others. It gives hope. Was getting pregnant difficult? What extra care did you get during pregnancy? We're there any complications? How's your daughter?

Sue

Hi sue thanks for the reply.. I must admit it was difficult was dialyising 5x a week at home up until I was 7 months then had to say I need a rest and the rest of the pregnancy I don't it at the hospital. My pregnancy itself was straight forward just many hospital appointment per week. My baby was born 6 weeks early c-section and was in neo natal for 16 days.. She had high creatinine levels when born.. But now she is fine growing well and just your normal toddler. I was a bit of a celeb in the hospital, because as u know it is quiet difficult to even conceive when a dialysis patient.. But fortunalty for me all went well
Sho25
 
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Joined: Wed Mar 16, 2016 10:37 am

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

Postby mrsmellbubble » Tue Apr 12, 2016 8:07 am

Hi

I am Jase, aged 46 from Nuneaton.

Been on CAPD for 3 weeks

Married with 4 kids (18 to 9)

Work full time in IT

Finding the whole CAPD process a pain in the backside
mrsmellbubble
 
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Joined: Tue Apr 12, 2016 7:03 am
Location: Nuneaton

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

Postby Dibs » Tue Apr 12, 2016 12:54 pm

mrsmellbubble wrote:Hi

I am Jase, aged 46 from Nuneaton.

Been on CAPD for 3 weeks

Married with 4 kids (18 to 9)

Work full time in IT

Finding the whole CAPD process a pain in the backside


Hi Jase.
I've been on APD for 3 months.
My kids are a bit older.
IT full time.
After 3 weeks I was still finding it a pain in the backside, or the groin, but the drain pains have eased for me now.
Dibs
 
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Location: Somerset

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

Postby yeh » Tue Apr 19, 2016 4:13 am

hi
i am yeh, from malaysia, living in singapore.
i am a lupus nephritis since i was 12 years old, currently 34.
However i have progressed to CKD now, my creatinine is about 200-247.

very worrying. not sure how long i can drag till i start my first dialysis.

i wish to continue to work, so i may try PD. anybody try PD and work as full time.

wish to hear from you guys.

nice to meet you guys here!
yeh
 
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Joined: Tue Apr 19, 2016 4:03 am

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

Postby gnarledcrayon » Tue Apr 26, 2016 9:06 pm

Hiya. I'm 46 yo, male.

I have nephrotic syndrome caused by MGN secondary to KD (wich is this rare thing: https://en.m.wikipedia.org/wiki/Kimura%27s_disease).
I was diagnosed with KD about 18 years ago, and it has primarily caused benign tumours on my upper back during the years.

Then last year, at the end of March, I suddenly developed MGN.
Histological analysis proved my MGN to be consistent with KD.
I've been treated with prednisone alone, then with prednisone and cyclosporine, and currently with prednisone and cyclophosphamide. My protein issue has slightly improved, but as of now, my kidneys are still leacky.
Apart from that, my kidney function is still normal. Still, I'm growing more concerned, as both MGN and KD are quite hard to cure, and I don't think cyclophsphamide will work either. :/

I am the only (and very recognizable) registered case in the country I'm living in, so it has been a quite lonely trip. And a strange one - mostly because doctors do not know much about KD (and quite a few admit it bluntly, thanks heaven)...
gnarledcrayon
 
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Re: suggestion... how about introducing ourselves??

Postby lev » Thu Apr 28, 2016 1:07 pm

Hi. Im new here.. I came from the Philippines. sorry for intruding in this forum. I just need some support group. Im 27 years old and was diagnosed with Renal Disease 5years ago and I was 21 years old then. I have had uncontrollable hypertension and I believe that stress from work has been the major contributor aside from poor diet. Because I was so concerned with my health I visited the hospital and did some blood works. My ultrasound result shows I havr Bilateral Renal Parenchymal Disease, My doctor was not really clear about his explanation but what he said was its the same with CKD. (does ultrasound doesnt show ckd as their findings?) My creatinine serum was 1.9, i have leakage protein in my urine of 370. My doctor told me Im already at stage 4.. Im really confused right now. Can someone please enlighten me what stage of kidney disease I really am? It seems to me that the doctor has not been so cooperative and looking not so concerned at all, no sympathy or anything. I have also been experiencing kidney pain for 4weeks now but its a bearable pain, but enough to notice the pain, cant live quality life having this annoying pain. i dont know how to treat this. I have been eliminating salt, meat, fish, poultry on my diet. Been exercising regularly. But it seems that im feeling worse now. Im generally ill. Can someone please help and enlighten me. Thank you

I have always been hopeful that the Lord will help me get through this disease as long as i am helping myself as well.. And the same with everyone else in this forum
lev
 
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Joined: Thu Apr 28, 2016 12:20 pm

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

Postby ladybird » Sat May 07, 2016 9:46 pm

Hi

Am 55 and have had KD since I was 23 after a bike accident destroyed my left kidney. My remaining kidney has never worked that well since the accident and my function has been between 30- 53 %. I've been on meds for BP for years and diuretics and went into complete renal failure when pregnant with twins which reversed itself after their birth. I get every illness going and haven't had a single week since last November without some virus or another. Today I got the dreaded letter to discuss my blood results with the GP. ( they only see me if it's bad) ACE inhibitors made my function worse so I've no idea what the next step is or how bad my function is until I see the GP.

Apart from feeling tired and cold sometimes I feel fine. It's scary tho. I am a single mum to the twins and both are autistic and i worry what will happen to them if I get ill and can't care for them. I don't understand why my function goes up and down and neither does my GP. I try to eat healthily, exercise and keep my weight down but nothing helps really. In fact my function was better when I was obese! Anyway that's me. :)
ladybird
 
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Joined: Sat May 07, 2016 9:19 pm

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

Postby wagolynn » Sun May 08, 2016 12:59 pm

Hi Ladybird,

How did the visit to your GP go?

Are they checking your Haemoglobin (red cell count), you do sound as though you could be anaemic.

Kidney failure does tend to depress your immune system, and also makes you feel tired, and 'out of sorts'.

Are you getting any support with the twins, if not it may be a good idea to look into this, one, to relieve your work load, and two, to make things easier if you are ever very ill.

Are you seeing a consultant as well as your GP?

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

Postby ladybird » Sun May 08, 2016 8:29 pm

Hi

I've not seen the GP yet as I only got the letter on Saturday. Am phoning tomorrow for an appointment. I wondered if it's anemia they've picked up on myself as they checked that along with kidney function. I am cold on an evening and need 2 duvets on my bed even now it's warmer weather. My older kids will help with the twins if I am too ill to look after them for short periods but I've no long term support at the moment. I am under a consultant but I only get sent to see him if things are not going well. I first saw him in my early 20's and he's nearly retirement age now! I last saw him when they sent me to look around the renal dialysis unit and transplant ward in 2010.

I put the illnesses down to starting a job last September where I am with the public all day. They gave me colds, flu and I got pneumonia cos the surgery nurse though I just had a virus. Then I got Novovirus from the kids I come into contact with all day too. I had meningitis last year too. I wonder if all the illnesses have made my kidney function drop. I'll find out tomorrow hopefully.
ladybird
 
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Re: suggestion... how about introducing ourselves??

Postby wagolynn » Mon May 09, 2016 3:21 pm

Hi ladybird,

I was thinking more of aide from the state for the twins.

With that string of illnesses there is little wonder you feel low.

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

Postby ladybird » Mon May 09, 2016 8:37 pm

Well...... bit of a shocker this but it's true. I saw the GP and my kidney function is normal. He wanted to tell me this face to face. It's not been normal since I was 23. I am still stunned. Think he is too lol.
ladybird
 
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Joined: Sat May 07, 2016 9:19 pm

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

Postby patricia99 » Tue May 10, 2016 1:22 pm

Hello everyone!
My name is Patricia, I'm originally from France. I moved to USA a couple of years ago . I'm 39 yo, married, have a daughter. I was diagnosed with chronic glomerulonephritis, when I was 19 yo. I’ve got pregnant in 2007. Unfortunately my pregnancy resulted in severe preeclampsia, emergency caesarean and death of my child on the second week of resuscitation. My first husband left me after this incident. It was hard to live through all that being alone. But I met very kind and understanding man 6 years ago. We fall in love and got married. Due to condition of my health we decided that it's too risky for me to carry a child. We were afraid that pregnancy may influence both my and baby's health. That's why we chose surrogacy as an option. We underwent this procedure in Ukrainian clinic in 2014. Our daughter Susan was born in January 2015. Though it was hard to be far away from our baby for 9 months(our sm lived with her family in Ukraine), but now I have family I was dreaming about. I wish all of you good health and strength to live and fight for your happiness!
patricia99
 
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