Hi All
Happy Easter to you all.
After some more advise please. My Grf is 7 and not on dialysis as my consultant feels I would only benefit from doing HD 5-6times a week so currently seeing the transplant team. Over the last 3 weeks I have developed abdominal pain and diarrhoea and not sure if this is a symptom of my kidney condition getting worse or something else.
Thanks
Charlene x
Hi Charlene, transplant will not provide the answer just yet, have you been works up yet and been accepted on the transplant list? Once you are on the list the average waiting is around 3.5 years that's if you are lucky enough to get a match.
Has yuh consultant not considered CAPD? This is normally the first option if suitable.
Speak with your consultant to ask a little more information
Philip
Hi Phillip
CAPD isn't an option as very small frame and the consultant feels I wouldn't handle the fluid needed, which is why HD was suggested.
I have had all the work up for the transplant list just waiting for them to say I am on the list. I know this isn't going to be a quick process and could be waiting many many years.
I don't have a live donor option as both my parents had health complications which were unknown
Charlene x
Hi Charlene,
Hope you can start your dialysis soon. I have recently been of dialysis for 8 weeks as my catheter was colonised with a bug, had peritonitis 4 times and had catheter removed and new one inserted.
My HDR during that time was around 7% and I was so tired, hope you can start soon and begin to feel better.
Dialysis has transformed my life , best wishes.
Philip
Hi Phillip
Every time the consultant says dialysis is going to start they change their mind which is annoying as I build myself up for it as know it's going to take a while to get use to but know its going to male me feel better. I don't even have a fistula yet. I have lots of questions for my consultant in May as can't keep on like this.
I'm sorry to hear you've been going through a rough time at the moment. I hope you start to feel better (what ever that is) soon
Charlene x
When my gfr went from 14 where it had been for 5 years with me feeling ok down to 9 i felt awful and consultant acted immediately within 12 hours i was on dialysis. Granted they had placed a fistula 3 months earlier just in case. Within 2 sessions i felt so much better. Dialysis is ti.e consuming but beats the alternatives in absence of a transplant
Thank you for replying. I have seen my consultant and been booked in on the 2nd June to have the first of two operations to have my fistula done. Nothing ever seems to be straight forward with me which is why I am having to operations. Been told I'm at least 3 months away from dialysis with my fistula but will place a neck line if needed before hand.
Hi Charlene
As Philips says, I too am surprised you have not started dialysis. Do you have a donor? Any dialysis is better than no dialysis. 3x a week is adequate for the majority of us. Longer/more frequent dialysis is beneficial bur not essential. But you could be on the waiting list for 3 weeks, 3 years or like me, 16 years!
You must be feeling pretty awful with that gfr. What's your creatinine like?
I don't know if your symptoms are connected or not but if you've had diarrhoea for 3 weeks you need to get it checked hun.
Please don't pin your hopes on a transplant. They are not a cure and it's not all plain sailing either. I do think you should, with that gfr, prepare yourself for the possibility of dialysis. I'm sorry to be negative. I'm just being realistic.
Of course, if you have a donor who is a good match, then that's the best chance of a successful outcome and I wish you luck x
Hi Nicola
I don't have a donor unfortuntley my live donors had health complications.
The consultant is happy with how I am coping at my last appointment, I'm due to see them on the 3rd may. My creatinine isn't to bad at 356 but the doctors have said this isn't a true reading as i have a very small frame. Every blood test I have had over the last few months has been increasing by 25 off.
The reason they wanted such a high number of sessions is because I suffer badly with gout and have tophi on all my fingers and it has destroyed my toe joint.
Thanks for the advice
Charlene x
Hi Charlene, I agree with Nicolala's comments above! The upset stomach could be due to other medication such as blood pressure tablets like Amlodipine. My husband had a range of nasty side effects which ceased within a week of coming off this common blood pressure treatment. We have decided NOT to even go on a transplant list yet as at age nearly 70, the risks are SO high. I agree with Charlene that a transplant is not always the best option. Even if you have a small frame they can give you a smaller amount of fluid for CAPD. I would suggest that you discuss this. My husband has 1.5 litres bags (he is 5 foot 10 but a slender build) and has at times only used one litre of fluid. You need to discuss all these options frankly. Best wishes Jennie
Hi Jennie
Thanks for your response. I was put on calogen supplement and that seems to have been causing thr upset tummy but not tge pain as stopped it and things seem a lot better.
That's a hard decision no going on the transplant list. But if your husband is doing well with dialysis then it sounds like you have made the right decision
Charlene x
Push to get a fistula appointment ASAP its going to be your lifeline.
Medically frequent dialysis is better, usually patients dialyse the bare minimum, 3 times a week, for 3 to 5 hours.
Less or longer is better
This explains the choices in dialysis
Http://davita.com/treatmentevaluator/
This you SHOULD read before and when you get your fistula
esrdncc.org/ffcl/for-ffcl-p...
nhs.uk/Conditions/Dialysis/...
Fistula Fanatic:
Facebook page for better fistula care:
facebook.com/purplechick820...
Thank you for the info. I've read some of this before but not all of it.
I have a lot of questions for my consultant as I know I can't keep going feeling like this. Keeping positive and staying strong and looking forward to feeling better
Charlene x
Bilateral nephrectomy 
finding a living donar