New couple to the forums

[Kate_and_phil_uk]

Hi there
We are a young couple from Plymouth - Kate and Phil
Phil has had diabeties for 22 years now, and known renal failure for 7 years approx....this has caused high BP. low BP, Anemia, underactive thyroid his diabeties have been unstable for all that time.
on the 15th Jan after years of battling the disease he had to relent and go on dialysis, he hates it so much (he is 34 years old) 3 times a week...
Takes up so much of his life.
However there is positive news in the long run, he's up for an Oxford double transplant pancreas / kidney so there would appear to be light at the end of the tunnel.
His diabeties makes dialysis so much worse as he's prone to low blood sugars whilst on the machine and leg cramps. Also the fluid restrictions?! Really hard at 1 litre a day.
I am sure there are other families out there like us, I am Phils Carer as well as his wife I am 26 now and we have been married for nearly 7 years our daughter is 7 years old also.
Thats about all I can think to say for now, I guess thats kind of my introduction to you all...lol sorry I'm not much good at this sort of thing.
Hope to get to know some of you though and share some experiences.
love Kate x

[bigbuzzard]

Hi Phil and Kate

Welcome along. I started dialysis just over a year ago, aged 38, and not massively chuffed to become a regular attendee at a hospital, surrounded by really ILL people! I was on Haemodyalysis then. Finding this little online community was a bit of a revelation, when I realised that there were plenty of other people out there, leading full active lives, and treating dialysis as a minor distraction (jenjen, mike, rik, monkeyspoon, jman, helen, mandyv, steve, Hal and many others whose monikers I remember seeing at the time - I've still never met most of you but thanks to you all).

My partner has been a huge support - she seems to find the right balance between being fantastically understanding, without turning into my slave, and making sure that I don't take the proverbial when I'm feeling too sorry for myself. I changed from HD to APD as soon as I could - the hassle of setting it up and being attached to it was far far less then pitching up to the dialysis ward three times a week.

Good luck with the transplant - I'm also hoping for one soon.

Best wishes

Andy

[claire]

Hi Kate & Phil

Big welcome to you both.

Sorry to hear about your husbands problems, I too am in the same boat problem diabetic for 30 years, kidney problems and I've had 4 strokes, and also an Oxford tx patient.

I got the call on sunday just gone, but it wasn't to be this time, and if you get that call before me then i'll come down to Oxford and fight you both for it he he he.

Well good luck and keep your chin's up

Claire xx

[trigger]

hi there kate and phil
my hubby is also a diabetic on insulin and when we married 6 yrs ago he knew that he had renal failure and then 3 yrs ago had to go on dialysis although he was on peritoneal dialysis and then was fortunate to get a kidney last year and its working well. we enquired about a pancreas/kidney tx but he was unsuitable as he is type 2 diabetic. we are both young im 36 and he is 40.
his dad has started haemo 3 weeks ago with his previous transplant failing after 13 yrs. his mum is due to have a fistula done to start dialysis soon and they are all diabetics.
on here you will find that we all support each other and no question is too silly etc
so welcome and ask away
trigger and triggers better half

[lashy]

hi kate and phil. welcome! i am sure you will both find this site very helpful.My partner was 30 when he started on dialysis and i was 25. that was 4 years ago (where has the time gone?). WE were shocked, angry, upset..at the time and chris, my partner experienced some very low points during that time. he was called for transplant 9 months ago and everything is fine, he has had a few blips but he is back at work now.
as long as you remain strong and optimistic you will both get through this. i am sure there are days when you both feel really low but as long as one of you is positive at that time you will 'pull' each other through.
i just wish we had found this web site when he was on dialysis but now we are through the other side i hope we can offer some advice to others.
keep well both of you
emma x

[Kate_and_phil_uk]

What can I say?
Wow. think that just about sums it up....Thank you to all that replied to us.
Phils had what seems to be constant issues since being on dialysis and although it is helping there always seems to be a drama, especially Fridays for some reson...he's lost the needles from his arm twice now and ended up in a blood bath losing well over 2 pints of blood, Monday it happened last and being a stubborn boy he wouldn't stay in because it was my Birthday so I went and got him and kept watch most of the night.
I find the nurses although they do a great job they don't seem to understand the diabetic side of things too well which does in the long run cause phil to hypo (he's renown for his blood sugars dropping without warning so is therefore unaware)
He gets so low about it and grumps a lot, I get frustrated with him as there are many dialysis patients not able or well enough to go for a transplant and he is lucky enough to be able to have the double transplant and get rid of the diabeties in one fell swoop...
It's such a long process but he's now been on the Oxford list 5 months and all we can hope is it's soon...
Claire I can understand how you feel about fighting for it, we feel like moving down that way and camping out :p
Andy I think you and Phil are of the same mind and wavelength and I will get Phil to post a reply as soon as possible, we've considered at home dialysis but he stuggles with the thought of being left with a tube hanging and the 4 times a day, he says he'd prefer to get it all over with at one time than breaking the day up. I'd love to hear from your partner too if she is willing
I'll be back on through the day, hope to catch some of you then
Kate xx

[Kate_and_phil_uk]

Emma - just saw your post after I did mine....it does indeed sound like you were in the same boat and yes I stay positive most of the time and it does help Phil.
Noticed you live in Cumbria, me and Phil met in Penrith where we both lived at the time
Kate xxxx

[Marion]

Hi Kate,,

Welcome. Phil can still do home dialysis without it being CAPD (that's the 4 x daily one) as long as he is suitable for it. I just changed from HD to CAPD to APD and wish I could've done it sooner. One hit overnight in your own time and that's it. So much easier. No longer a slave to a 3 x weekly hospital trip. And the catheter really isn't that bad.

Take care,

Marion.

[TJ]

Hi Kate (& Phil), just thought that I'd join the others and say welcome to the board. I'm TJ and my husband has over a twenty year of renal disease ( not diabetes related) and was in his early forties before he eventually needed dialysis ( two years ago now). He had been on APD for only 10 months when he got the call for his transplant and is now doing great. We like yourselves have two young children 6 & 9, so it can be really tough at times, but I think having the boys enabled my husband to keep really positive and they helped him to keep smiling every day, despite the problem's. This board has been a great source of advice and inspiration to me during my husband's illness and is full of truly great people always willing to share their knowledge and experiences.Hope it helps you both too.
Take lots of care
TJ

[Rik]

like TJ and all the others ... I would like to welcome you both to the Board :0)
I hope you find a level of friendliness and support that this place is becoming reknowned for ...
there are quite a few on here who have a form of diabetes and kidney problems ... so I hope they will step forward in times of need ...

Haemo at the best of times isnt much fun ... and when your having problems it makes ones levels of emotions sink even lower than normal when on haemo ...

I remember the first time I went to HD ...
I found by holding up a chair at arms length and the subtle use of a whip kept the nurses away from sticking those damned HUGE needles in my arm ... worked well for a while ...
until they realised that I had backed myself up against a curtain and not a wall ... a surprise 'rear' attack ... with sedative normally only used on rhinos ... through the curtain though not standard practice was effective ...
waking up 3 hours later to the nurse unstrapping me telling it was all over kinda calmed me for my next visit ... though high levels of diazepam in my system did help for a number of times after!!!!!

I do hope that someone has told you about the wonderful invention called EMLA ... others scornfully call it 'kiddie cream' but dont you listen to those masochists!!!!
its a wonderful and effective numbing cream used about an hour before one is needled ... why the inventor of it hasnt received a Nobel prize for humanity is beyond me!!!!

all the best to the both of you and I'm glad you have found us here
Rik
:0)

[Kate_and_phil_uk]

Great news everyone
Phil got his double transplant 2nd June and all is working and correct so far so good
we were close to giving up hope on it all and out of the blue it happened
Never ever give up, if you are waiting don't fret it will happen
Kate xx

[~G~]

I have the honor of being first on this board to congratulate you. WOW! Double WOW! Double Congratulations! Thanks for the great news. I"m sure you're all thrilled. I certainly am.

Thanks for the good news - its made my day!

[Elaine]

Congratulations Phil & Katie and hope all continues to go well with the transplant.

best wishes Elaine & Rach

[triggers better half]

many congratulations to phil. we hope that all continues to go well with his recovery.

[Angie]

What fantastic news
I am completely over the moon for the both of you
good luck and the best of wishes to you both of you