New to this (partner is with CKD w/future dialysis-transplant)

[50Calabrese]

Hello all!  I wrote an introduction and now feel impelled to write my first posting.  My girlfriend/partner was diagnosed with kidney disease and is now looking toward dialysis and also transplant.  I went to a group class with her that addressed all the types of dialysis as well as transplant and she just met with her case manager to go over specifics for her personal needs.  I love her so much an want to support her as she goes through (after the initial shock) grief, regret, anger, sadness, and all the possibilities surrounding kidney disease.  I respect her privacy so I won't go into too much detail.  There is so much physicality around this disease.  The numbers, the labs, the organs, the machines, the hours on dialysis, the finding donors, worrying if that transplant will take etc.   All that information.  So much "form".  I think her spirit might feel left on the doorstep.  One of my goals with her is to do some meditation.  We have some Cd's, too.  Perhaps I can keep gently suggesting the idea of meditation.

I am so intent on being a good listener and to let her ride out the waves of emotion.  I think giving her the space to do that is a good thing?  I am open to suggestions, though.  Last night things like a possible shortened life due to this disease came up.  I stay with her and comfort her.  I don't want to enter the fear with her but I want for her to know I am there.  I don't have a magic answer as to how eternal we are as beings or that miracles can happen and that we are all possibility....But, maybe there are miracles and we are all possibility.  I guess we might try to walk the mystical path with practical feet (to quote Angeles Arrien)

I wonder what experiences others have in this.  I mean, I don't want to go down with her but I don't want to be in la la land saying everything is great and fabulous.  There is most certainly a lot of greatness in our lives.  We are both very active.  She is an incredible musician, song writer, singer, friend, aunt, daughter and partner to me.  She is so worried that her active life will be compromised or even shortened.  We both agreed last night it is easy to talk about living in the present.  It is a daily practice to do that. 

Anyway, I guess last night I was worried that maybe I wasn't supporting her in the right way.  I don't want to feel like I am alone with this or solve it all for her.  That is unrealistic.  She is very much a solution-oriented and a results fast person so this is tough.

Any experience shared is welcome!

So happy to have a forum in which to share.

Best,
Sylvia

[mcmkids]

Sylvia, you are doing exactly what she needs you to do, listening and being there. It sounds like she is coping as best as she can for right now. It is so hard to imagine what our loved ones are going through! I know that I could not imagine how my husband feels going through all of this. Know that everyone here is a friend with big shoulders to lean/ cry on. I only wish that my husband would come out of his denial to get on and actually talk to people who are going through everything that he is going through. 

[monrein]

Sylvia, you are the best.  From my perspective as a long term ESRD patient,(now on my second transplant, first lasted 23+ years, total of about 6 years of hemodialysis) you are really on the right track with your support.  The meditation is a great idea as is truly learning to live in the present.  Energy does suffer terribly for most of us and that's an enormous loss...I hope she will get adequate dialysis to minimize that (lots to read here about nocturnal, home hemo, PD etc) but realistically most of us get quite depleted.  Depression is another trap to watch out for.  Exercise is good even though it can get tough for us, we must keep at it.  An understanding partner is the best thing there is.  I've never thought much about having a shorter life but I do worry about a terribly compromised one.  So far however, I've managed really well and accomplished a fair bit too.  Keep talking to her about how best to support her, what does she want/need most from you?  Being in it with someone is so much better than having to go it all alone.

Now, I have to tell you that while reading your post I kept thinking..hmm, who is this guy?  He's amazingly sensitive and attuned to so many things we deal with.  Assumptions, how I do despise them, yet into the trap I fell.  To be fair we do have some pretty incredible guys on here, patients and caregivers also. 
Then I burst out laughing at the end because when you said "...or solve it all for her"  I thought of the many times I've told my husband that in my "next" life I'm having a female partner so that things can be discussed in their fullness before jumping to the conclusion/solution in two minutes flat.  Sylvia you're great and your girlfriend is very lucky indeed.  Post often.

[paris]

From what you post, I think you are doing a great job as a caregiver.  I agree with Monrein about asking her what she wants from you. Understand that will change almost daily!  I want my family to understand I am not the same person I was.  This disease makes you take a hard look at what you have done and where you are going.  My husband wants to fix the problem and make it all go away.  Denial.  Give her space, but you will know when she needs someone to lean on.  Ask real questions and listen to the answers.  (I personally hate "how are you feeling")  Allow her to be mad at times.  This is a real up and down journey.  I recently hit a new bump in the road and after hearing the news, my family hasn't talked about it. They are afraid of upsetting me.  Believe me, I think about it all the time and would welcome questions and comments.     I am rambling, Sylvia --sorry!  Keep posting and reading.  This is a great group and we are here for you.   

[Rerun]

Get tested to be her donor.  What more supportive loving thing could you do?

               

[kitkatz]

My best advice is to hang on to your butt, you all are about to take a very interesting ride!

[Hanify]

Everyone's said it all really.  You're doing the right thing being there.  Try to be honest and let her be honest.  I think the shortening your life thing is an interesting topic, cos it really means nothing given we don't know how long we'll last in the first place.  I could still get run over by a bus eh?  For me it's important to keep talking about stuff - but that's not everyone's cup of tea.