Help please

[Colinbell]

Please look at my profile ,I put a load of information on

[Mark3365]

Hi Colin

Fully understand this is a very scary time

I myself have been awaiting a kidney and pancreas transplant so I hopefully can answer some of your wuestions

At the moment I am pre dialysis my efgr is 15% as to when dialysis is necessary I am text book borderline but have been told by my renal team that I will feel sick and lathargic and generally unwell when the time comes . It is quite an individual thing I guess

The scans u have been having are indeed to assess suitability for transplant

Travelling abroad is possible whilst on dialysis with planning not sire how the brexit vote will effect this in the future in europe

The best people to ask are your tenal team they have specialised workers in all aspects of renal care

There are indeed specialist dialysis nurses who will guide u and advise u of your best options going forward

Health wise dont worry everything will be sorted out Ive been type 1 diabetic for 39 yrs (hence the pancreas transplant 😀)

Good luck and if u need anymore info or advice just drop me a line 👍

[Colinbell in reply to Mark3365]

Hi thanks for your advice, I met one of the renal team today seemed very nice but no real answers. I'm interested in knowing how much my egfr will increase once on dialysis and how effective dialysis is compared to a transplant.

Have you done the pre dialysis training yet? If so was it difficult? I'm due to have a fistula in my arm and am absolutely petrified about it ,and the thought of inserting needles into my arm again terrifies me.

I am considering haemo dialysis administered at home ,I have the time and space to do it and a caring wife to help me,I have been told that a minimum of 3 four hour sessions per week is the minimum but longer sessions are more effective.

Please keep in touch ,thanks for the advice and good luck

[Mark3365 in reply to Colinbell]

My understanding of dialysis is that it does the job your kidneys cannot do so your efgr will not be raised by it

A transplant in turn replaces what dialysis does by you having a functioning kidney giving u back all the benefits of that healthy kidney . So yes a transplant is the best option

I havent recieved any training just verbal guidance from my renal team so far

Are you on facebook ? I am a member of a support group on there where there are many pre and post transplant patients and their families and friends

We all support each other and the knowledge base is huge many on there are on dialysis and have gone through the whole process from diagnosis dialysis to life after transplant. It was started by patients in Oxford but is now pretty national - Im located in Nottinghamshire but my transplant team is Manchester based

[Colinbell in reply to Mark3365]

I'm based in Manchestercand my renal team is at MRI. Yes I'm on face book but I'm not very active on it . Could you let me have the Facebook page you referred to please.

Thanks for your help

[Mark3365 in reply to Colinbell]

Can u send me a friend request on facebook or give me your profile details on there and I will find u

I can then add u to the group

[goldenboy12345 in reply to Mark3365]

Hi colin my efgr is 13%, I must say I worry every day about dying, I just cant help it to be honest it is ruining my life just worrying all the time, I just cant get it out of my head. I have always worried about everything anyway, I have been told I will put my self in an early grave with worry. I am 55 years old, and only found out last year that I had kidney disease by accident, went to the doctors for blood test because I was suffering from really bad migraines, to then be told that I have stage 4 kidney disease. I am now on stage 5 and the hospital has just put me on the donor list. I worry about what to eat eat and what not to eat. and I worry that I might not live to see my children grow up and have children. you seem to be very positive, I wish you all the best. Sue x

[Mark3365]

I am also a MRI patient this is where my double transplant will take place

[Mark3365 in reply to Mark3365]

Group is called waiting for a Kidney/pancreastransplant

[Hassmac]

Try to be positive Sue. I am a transplant patient, who had a kidney from my dad at 33. I am now 47 and I have had a healthy 14 years and even a pregnancy! Is there anyone in your family who can be tested? You are a little away from dialysis yet I would have thought. Do be careful about what you eat. I managed to keep my native kidneys going for an extra year when I was first diagnosed, through careful diet. We all think about dying, but try and live for the day. Do light exercise, go outside when the sun shines and don't worry so much, because it really will not help. Having said that, I still have my bad days, thinking; how long will the kidney last? Can I go abroad on holiday as planned, etc, etc. Take one day at a time and talk to people. Do you have a good support network of family and friends? I do hope so. Keep smiling Thinking of you. Sarahx