suggestion... how about introducing ourselves??

[Dotty]

Hi, My name is Dawn,

I've just stumbled across this forum and am hoping it may be useful.

I have IGA Nephropathy, which was diagnosed in May 2014 when I had 25% function. I'm now down to 10% and waiting for surgery for a PD catheter.

It's all very quick and quite scary. I have a brilliant husband and group of friends but it's nice to find others who are going through the same things.

regards

Dawn

[Grey]

Chin up Dear, I had mine fitted about 6 months ago, and survived You will find loads of positive support on this site. Good luck with the op. Grey

[jbell]

Hi Dawn nice to meet you, I hope all goes well with your operation

[lizbee]

Hello Dawn nice to meet you, hope that when you have your op all goes well. It must have been quite a shock to you when you discovered your Kidney function was so poor, I don.t know what.s worse knowing it will come to needing dialysis for a very long time or the quick ride that you have had..........as Grey says you will get lots of support on here if needed.

Liz

[Dotty]

Thanks for the welcome.
As you'll know it's a lot to get your head around, there's so much to learn and it's so much harder because of feeling so ill all the time.
I'm also have major problems with my blood pressure and I'm sure the tablets are not helping.
Am hoping for some good news from my consultant tomorrow.

Regards
Dawn

[lizbee]

Hope you get the news from your consultant that you want, and that things settle down a good bit for you now.......chin up thinking of you



Liz

[Dotty]

Thanks Liz, my consultant has now taken me off the horrible tablets and I'm feeling much better now.

Went to a talk about PD and to see it in action, was all a bit overwhelming but I feel a bit more prepared

Hopefully I'll continue feeling better and the sun will carrying on shining until my op.

Dawn

[jbell]

Hi Dawn is your bp okay now you are off the tablets ? Mine is too high (bp) at moment and have increased my bp tablets but feel rubbish.
I remember first time I saw pd in clinic, well the machine etc and it was very overwhelming. How often are you going to clinic ? Hope things go well for you, keep in touch Jan

[Dotty]

Hi Jan,
My BP is still too high, and I know we need to find something else to bring it down. I'm already taking 4 different BP tablets so not sure what else we can try. I'm just glad that he stopped the new tablet and that I feel human again.

I'm at clinic every week at the moment as I went from 19% to 10% within a couple of months so am being closely monitored.
Today's visit was to see to a patient already on PD dialasys and to see the machine and talk to the staff etc. it was good to go but I did find it a bit overwhelming. Now to need to find out all the things they don't tell you, but think I will post here as a question.

Thanks for your support, it really helps.

Dawn

[braca]

Hello all, I have PKD. and was first diagnosed apprx 1999, not sure of numbers then and just remember going to clinic and having blood pressure taken and weighed and giving urine samples, seeing doctor and having blood samples taken then told to come back in a years time...now almost 15 years on I attend clinic every 6 weeks and my eFGR is around about 11%, had Fistula done in early February this year and this was fourth attempt as previous ones had failed for one reason or another,at my last clinic visit the doctor said dialysis is still a long way off...had managed to keep working up until I had last Fistula operation, but are now anaemic and feel very low all the time and have no energy at all, was just wondering is this how everyone feels prior to starting dialysis...

[Dotty]

Hi,
My eFGR is currently at 10% and I am due to have my PD catheter fitted at the end of the month.
My Blood pressure is also very high.
I too am constantly tired, with mega headaches and various aches and pains and have not been able to work since the end of January.
I am hoping to feel much better once dialysis starts as this sure sucks!!

Dawn

[jstuartrobson]

Hi All,

I've been reading the forum here for quite a while and only just plucked up the courage to post! My name is John, I'm 34 years old. September will be the 10th anniversary of my Kidney Transplant at St Georges Hospital in Tooting. I was diagnosed with IgA Nephropathy in my early teens. Both kidneys failed in my early 20's. I went on to CAPD pretty much immediately and was exchanging 5 times a day!. And eventually on to APD. I'm glad that I was able to keep working during this period. After 1 year of CAPD I got the call but had a gum infection at the time so experienced the highs and lows of anticipating a transplant! A year later, I had another opportunity, thankfully and gratefully was well enough and able to accept this donation.

I have a partner and together we have a 3 year old boy. I am very grateful that I am able to lead a relatively normal life!

Thats enough about me anyway, just thought I would say hi!

J

[jbell]

Hi John it is really nice to hear from you . You must have gone through such a lot in your teens, it is lovely to hear a success story. How often do you have to go to a renal clinic after 10 years ?, I hope things are still going strong for you.I hope you don't mind me asking but did you feel instantly better after your tx and did it take you awhile to recover ? I am guessing the experience could well be different for everyone especially when another illness is involved as well. Very good to meet you Jan

[jstuartrobson]

Hi Jan,

Sorry for the late reply. I'm grateful that I've had a lot of support from friends and family over the years. I see my consultant nephrologist roughly every 6 months for bloods and blood pressure etc.

I was off work for 3 months post tx. The most amazing thing for me was that I was called in in the Friday morning. Tx in the evening. I was up and about after 2 days. And out of hospital on the Monday. I had a single bout of rejection very early on and that's about it.

Thing have generally been pretty good. My creatinine has always bee pretty stable 120.

As to whether I felt instantly better? I can't remember. There was a long while recuperating from the surgery which was uncomfortable. I can't remember feeling terribly I'll either. I guess that's because I was quite young at the time.

J

[lizbee]

Hello John lovely to hear your story about your kidney journey, it had a good and successful outcome and that.s what matters the most, now you have a little boy whom I bet keeps you on your toes all the time so to speak.......come back and join in with anything you see and want to comment about the more the merrier I say...................


Liz