need advice - thanks

[Claudia30]

So I meet with the transplant team last week and the person who had come forward to donate turned out not to be a match. I am disappointed and pissed off. I’m not angry at the potential donor or the transplant team – just in general. After all the stuff I have been through the past few years with my mom dying, transplant and it failing, and losing my jobs (several of them lol) I feel that my life should be getting back on track, especially since I am trying so hard to get it back on track. I feel like God is punishing me for something that I did but have no clue as to what it is. Maybe I am being punished because I have stopped believing in God and such…there is just too much horror in the world to think that there is a God. Don’t get me wrong I know He is a kind and merciful God but I have my doubts. I know I am not entitled to a kidney – no more than anyone else but still… I wasn’t really expecting to wait since my doctors told me I had to find a living donor and the first time I got one. My mother was the one who found my first donor  - I guess I didn’t know how hard it was to find someone. How do you do the waiting and trying to be patient and not want to scream at the world? I wasn’t expecting to wait and everyone I have talked to said that waiting is the hardest thing to do while on the list. My transplant coordinator mentioned multi-listing. Has anyone ever done this? How has it worked out? How do you make arrangements when you don’t really have any family anywhere? I just want life to be simple again – not that it has ever been simple lol. I am so sick of being sick – as all of you are. People are amazed and surprised that I do my dialysis 4xs a day and ask me all the time how I do it – I tell them that I just do it that I don’t have a choice and that it’s part of my life. I know that I have to wait, that a kidney is not going to magically appear out of the blue (which according to my doctors is a “miracle” if it does ever happen which is very rare). While my rational side understands, my non-rational side doesn’t and it’s hard to explain it to it.  How do I do this without much support (non from family and little from friends (seeing as I have only a handful of them)?? Thanks for listening and I’ll take any advice I can get.

[Sunny]

If you look back on your life, I really doubt there is anything you did that would warrant a reason for having kidney disease.
You didn't do anything to deserve such an outcome. Getting kidney disease is just bad luck.So don't blame yourself for something
you have no control over.I wondered the same thing when I contracted kidney disease. There is no real answer.
I'm sorry your potential kidney donor didn't work out for you. That must be really tough to deal with after getting your hopes up.
Hang in there, and try your best to work with what you have. Hopefully, a match will be found for you soon.
Wishing you the best.

[rose1999]

So sorry things didn't work out this time .... but there will be other times,you have to believe that.  I totally understand your loss of faith, I felt the same way when my husband suffered and died a painful prolonged death and now my Dad is suffering.....

I hope something good will happen for you soon, sending best wishes and a 

[Ang]

just  try  and  keep  your  chin  up,  cause  when  you  least  expect  it,  things  should  start  to  change  for the  better.

[monrein]

Oh Claudia, nobody deserves kidney disease and it is true that sometimes, quite often in fact, bad things happen to good people.  The whole transplant thing can be so full of disappointment, uncertainty and setbacks and dialysis is a relentless grind.  The one thing I hang on to is hope and part of that is trying to stay as healthy as I can so as to be ready if I can get one.  Even that is hard when we feel sick. The people here care however and we will always listen.  Hang in there and vent here whenever you need to.  I'm sending you a big hug and now another one including the whole darn group.

[Romona]

I agree with everyone! Keeping my fingers crossed for you that things get better. 

[stauffenberg]

I wonder why they said your live donor was not a match?  Didn't the person know his or her blood type prior to offering to donate?  Incompatible blood type is the only reason for ruling out a live donor, since failure to match the HLA tissue type is a relatively minor problem with live donor sourced kidneys.

[okarol]

Don't stop looking for a donor. It takes determination but don't give up. No one is punishing you, but it is difficult to understand why bad things happen to good people.
Ask your local community center to put a plea for a living donor in their bulletin. If you have an alumni group ask them to post it in their newsletter. Create an email and ask a family member or friend to send it to everyone you know.
If you can, reach outside your community and try the internet to find a donor. You must be certain your transplant center will accept a donor found through the internet before going forward. Many will not accept a stranger.
We met Jenna's donor on http://livingdonorsonline.org message forum - you can post a new thread in the "Looking for" section - it's free - give a small summary of your situation, include your location and blood type. I used a different yahoo email so I knew exactly why where the contacts were coming from - got many from overseas and some unusual offers, but in the end I met some really generous souls and it ultimately lead to Patrice donating to Jenna.
Matchingdonorsonline.com charges a fee, but there are lots of participants so you might have better luck. They claim to have financial aid available.
Since you had a willing donor that didn't match, they could still help you by agreeing to a swap. http://www.paireddonation.org/ Alliance for Paired Donation helps arrange swaps, but since they have no partners here in California I don't have any experience with them.
There's also http://www.kidneyregistry.org/ National Kidney Registry. They help swaps happen, so even if you have a willing incompatible donor they will help find a kidney for you to exchange. They charge a lot but they also have financial aid available. There is a section of their website devoted to finding a donor http://www.kidneyregistry.org/no_donor.php
We also multiple listed Jenna at 3 hospitals. They have to be outside your local procurement area, and you need to be able to travel to them within a reasonable amount of time in the event you get a match. If you are already listed with a transplant team, it's much quicker at the multiple listed centers.
Hang in there and keep trying!
Good luck!

[kellyt]

Hi Claudia.  When I read your post I found myself thinking "When did I post this??"  You could be my alter ego!!!!  Seriously!

I will be your support.  Email me if you wish  kellytalbert@satx.rr.com.  I'm in San Antonio, TX, but my computer is always on!  As well as my cellular.  We can exchange that later if you want.

Your thoughts about God are right on the money.  I ask him regularly what I did that was so bad to deserve the turmoil my life is in at the moment.  I believe and I question.  And then I feel guilty about that!  I have other issues going on now that are not health related, but in turn affect my health.  Add this to my testing being completed in February and the money is just flying out windows and doors!  At least my other issue takes my mind off my kidney disease, possible dialysis, the "list", the monthly blood draws, the EPO shots, etc., etc., etc.

I am lucky to have a supportive husband, but he works alot and I find myself alone 90% of the time.  Over the last six months or so it seems I've lost most of my friends.  I guess they're either really busy or they're afraid I'm going to ask them for their kidney.  I haven't quite figured it out yet.

Anyway, email me. 





EDITED:fixed bold error-kitkatz,moderator

[Sunny]

Regarding the loss of friends,
Sometimes when your health is doing poorly friends seem to run, not walk, in the opposite direction. It does make you wonder if it's because they are afraid you may hit them up for a kidney. It is such a terrible position for us to be placed in, and so unfair. I have concluded it is more the fact people don't know how to deal with sickness. Sometimes a healthy person just cannot seem to grasp what it's like to deal with sickness. It's almost like they think it is contagious. I don't think they intend to be callous or unfeeling, it's just they don't really know what to do. It is important to have a support system, though. I feel for you because you are feeling so alone right now. Is there any way your doctor or social worker can provide suggestions for a support network? You always have us, and that's good, but sometimes you need face to face contact.
Be well.

[monrein]

I agree Sunny.  Claudia this might seem a bit wacky (at least it did to me many years ago when it was suggested to me by a social worker I didn't much like) but are there any patient groups in your area?  I attended one for a few months when I was about 28 and I was really surprised by how important those group members became to me.  I had friends but they could no more relate to what I was going through than they could to the man in the moon.  We didn't have the internet then and this group helped me to truly think of myself as a whole person, not just some defective piece of goods that should have been recalled.  Much depends on the group and who leads it but if it's good it can be very very good and if it's bad it's awful.

[devon]

Hey Claudia! 

I really can relate to what you are going through and thinking.  I've had, and continue to have, those same questions.

Here's something that came to me just this morning as I was considering the struggle that it's been since 2003 for me.  I am currently in Texas where my family lives but in 2002 I was on the east coast getting out of a 22 year relationship with a very self-centered alcoholic who had driven me into the ground emotionally, physically and financially.  We separated in 2003 when I accepted a job out of town.  I took what little savings I had left and moved myself and son to the new job.  It was a great opportunity for me to rebuild my life but it turned into a disaster because the company was financially insecure and I was laid off after less than a year.  I quickly found another job that paid for my move to the mid-west.  That job lasted 90 days.  Neither of us would have been happy.  Then, I moved to Texas and was finally reunited with my family and where I'm getting great medical care and working for a great company with a wonderful, understanding boss.  So, finally after five years, things worked out much to my advantage. 

As a side note, my family, especially my sister, was a great help at first when I arrived here in helping me get set up but things turned to indifference after a while.  I was hurt because I thought things would be easier when I was closer to family but that wasn't to be.  Everyone is too busy in their own lives with jobs, education, kids, grandkids, etc.  So, I've been pretty much on my own and try to keep my distance as much as I can and fend for myself as I struggle with my medical issues.

But all during that time I suffered under the impression that I was paying the price for some terrible thing I'd done in this life or another, god was punishing me, or some other reason to explain why I had to suffer through all that.  Here is the "truth" that I discovered.  That first position got me out and away from an abusive, negative relationship.  The second position paid for my move to Texas (they reluctantly paid under the threat of a lawsuit by my attorney) or that would have cost me $16,000!  I don't have any savings left or equity in a home or retirement accounts but I have my sanity, my son, a good job, a good boss who understands my medical situation and peace of mind.  All that "suffering" was nothing compared to what I escaped from.  I'm thankful for what I have now and little regret for what I lost. 

I am sure things will work out for me in the long run.  I am learning to trust in myself to work things out and I'm confident that I can deal with whatever comes my way now even if it seems overwhelming.  I have many, many things to deal with in the future as I move closer to dialysis and my body keeps giving me one more problem after another.  But my spirit is good.  I'm in a good place as far as that is concerned.  I am content and that is very important to me. 

So, I suspect that "god" or my higher being or Great Spirit did, in fact, guide me to where I am now.  It was not easy but it was effective and I am in a better place than I was.  It seemed like punishment but it was, in fact, liberation. 

Speaking of Liberation,  I take some solace from one of my aunts who is a holocaust, concentration camp survivor and she suffered terribly as a child.  She's 80 now and still believes in God.  Trust me, if she can retain her faith, so can we.

All in all, my life has been so rich in experience! (sorry for the long post!)

-Devon