Kidney Patient Guide

my dauchter of 23 just diagnosed with kidney failure, end stage. To make matters worse she was pregnant with her first child, baby was born 13 weeks premature and is doing well. My daughter unfortunatley is now being prepared for dialasis, and on the transplant list. My husband and myself are needless to say like headless chickens we have no idea what is happeing to us. Cheryl and her husband are coping with a new baby and the news that things are going to change dramatically for them now and maybe for a long time if a donor cannot be found in the family to give her a good chance of a transplant quickly, I as a mother am finding it hard to cope with her illness, and being a new grandmother, on the one hand elation at becoming a grandmother for the first time and on the other finding out that my daughter is seriously ill. How do you all cope ?

christine

Hi, I am so sorry to hear about your daughter, it must have been a terrible shock, it certainly was for me when I found out. Coping comes in stages, taking each day at a time initially. At the moment I am sure you are all in the grieving stage for the loss of your daughter's health. You will need to prop each other up, and try to understand that there are probably going to be some extreme shows of emotion, that is only natural as you all come to terms with the changes.

The most practical thing that you can do at the moment is find out all you can about the illness, dialysis, transplant etc. Your daughter should ask everyone that she can think of if they are willing to donate, because people are quite willing to do so but just don't think to offer.

Please send my love to your daughter, she can get a great deal of support from this web-site. love amanda

Christine,
So sorry to hear about your daughter, and I know exactly what the whole family must be going through just now.

My kidneys started to fail while I was expecting my daughter, who is now 5 1/2, although I didn't reach end stage until she was 2 1/2 and I was lucky enough to be transplanted very soon after starting dialysis.

The best advice I can give you is just be there for her, emotionally and physically, although I know the emotional side is much harder to deal with. I was lucky, I had the support of my husband and my family, which your daughter obviously has as well, and no shortage of willing babysitters, as some days I felt too ill and tired to deal with my new baby. It was a long, hard struggle, but we made it through, as I'm sure you and your family will too.

Best of luck, keep us posted on how things are going - email me, if you like - [email protected]

Lorna

Christine sorry to hear bout u daughter and wish her all the very best cant be easy for you. My daughter was diagnosed aged 21/2 with serious kidney disease but with meds and treatments was fairly stable til 3yrs ago. She is now 16 and has been on kidney dialysis at home 9hrs overnight for past 16mnths.

She was put on transplant list but put on hold as she has to have her kidneys removed prior to waiting for a transplant. She sadly is quite exceptional circumstances and know many people that their disease is much less drastic. It has been a very difficuilt time for all of us but amazingly you do cope with all help and support from family, friends kidney associations like NKF, BKPA and websites like these n CHAT. Nice to speak to people who are in similar circumstances etc who have gone through same.

Life is such a rollercoaster ups n downs and have to take each day as it comes. There has to be positive things though like the birth of her baby although in difficuilt circumstances.The initial shock does take time to sink in and there are a lot of different emotions people go through, disbelief, anger, frustration, sadness and coping.As a family we are much closer as I have 3 girls and a very caring husband we all pull together and help as best we can.

The Drs need to give u information necessary to assist in making decisions about the future and dialysis etc. Dialysis actually isnt as bad as u initially think. Its the fear of the unknown is the worse but with adequate help, support information can ease the stresses and strains of kidney failure.


Good luck 2 u all and hope to be in touch again. Elaine

Christine, I know exactly what you are going through at the moment. My wife who has been diabetic for 38 years has also just been confirmed as end stage kidney failure. I guess we kind of knew it was coming but the of the actual words & confirmation that dialysis or transplant is the only way forward was still a shock to the system.

I have visited this site / message board several times already but felt it was now time to add my own comments and help others who have already helped on the board by the previous messages.

Cristine:

Listen to what Elaine says.......

" The Drs need to give u information necessary to assist in making decisions about the future and dialysis etc. Dialysis actually isnt as bad as u initially think. Its the fear of the unknown is the worse but with adequate help, support information can ease the stresses and strains of kidney failure. "

Become informed, kidney failure is not a handicap.

Hi Christine..

I've coped for the last 20 years with a combination of a few close friends, some supportive family, some very good health proffesionals (amidst a sea of mediocrity) and quite a bit of sheer darn cussedness.

Here in the UK I've also become involved with a Young Persons Group http://www.kidney.org.uk/ypg/ which has helped a lot by combating the feeling of 'being alone' and certainly 'being the youngest' as dialysis does tend to affect more older people than younger.

You'll find a lot of good information here and elsewhere on the web..

And keep asking Q's... As Elaine has said, getting the answers allows you to ask further 'right' Q's and make the decisions you and your daughter will need to make for her best health.

I can reiterate dialysis certainly isn't the end of the world tho it IS a very large impact on your life

HTH