Waiting for my PRA result..

[Lilu323]

I have been in a bad depression these past couple of weeks. Its been a year to this month since my failed transplant. My first transplant was at 10 and it lasted 18 beautiful years. It failed last year and I underwent plasmapheresis for another transplant and it almost ended with deadly results. Now I got tested again to check my PRA. Im 29 years old and I feel that whatever this result is its going to make or break my life. I hate diialysiis, i feel like a huge burden to my family and my boyfriend ..i cry all the time ..I just want to be that person again that I was 2 years ago with a healhty transplant happy and enjoying life....I cant live the whole rest of my life on dialysis...im sorry i just needed to write this is ...hopefully letting it out will help me

[jbeany]

 
Sometimes, you need to grieve for what you've lost - a kidney, a way of life, your health.  It's okay to do it here - as a group, we have broad shoulders.

[monrein]

Lilu, I hope you will use us here as a place to talk about the feelings you're having, in a lot or a little detail, as rationally (or not) as you want.  Try to get it out of yourself, onto the screen and that might help to free you  up a little bit to be more involved in your real life with those who care about you.  You never need to apologize to us here about about expressing the pain you feel.  We really can take it as jbeany so wisely pointed out.  We know the pain and today I feel yours and am carrying a little of it for you.

Many of us feel like a burden.  I even feel like a burden to myself at times. 

jbeany is absolutely correct about the grief.  This illness robs us of many things over time and you were especially young when it all started for you.  I'd take some of it from you in a minute if I could. 

What I think you also need to do is make a conscious decision from time to time to ACT lighthearted, to smile, to enjoy time with friends, to do things with your boyfriend.  Please notice, I didn't say "feel" etc.  Sometimes the action has to come first in order to make way for the feeling we want.  Often when I feel down I go out, even just to a coffee shop and I consciously "pretend" I'm enjoying myself.  I smile at people, I talk to perfect strangers and I don't think about D.  Or T(ransplant) or R(ejection).  When I come home I often feel better.  Not always, but often.  You don't have to feel better to do this, you have to pretend to feel better, to get a break from yourself.

I also try to give myself permission to stay away from people when I need to cry it out or just wallow in self-pity for a bit but I put a limit on how long I do that for because I often feel worse (like a bad headache for example) after those particular "mood experiments".

Hugs to you and write here any time at all.   

[G-Ma]

Thank you monrein for suggesting the mood experiments...great idea..I will work on this as yes I also feel like a "huge burden" on everyone...no family should have to go through this and mine has great difficulty understanding what I am talking about when I say this.  My sons feel...you raissed us, now we take care of you and that is so very wrong as far as I'm concerned. whew...ok I'm breathing again......actually my Gdtr and I started a "code word" between us when someone or something frustrates us as different people at Davita have over the last two weeks...after a call she will look at me and say "ok, on the count of 3...1, 2, 3...KTB...very loud and it's over for the moment....and no one has a clue what we are saying.....Ki.. the Bi.... 

[xtrememoosetrax]

Lilu

[okarol]

So sorry Lilu - I hope things are looking better and you feel more hopeful in the future.
Hang in there 

[Lilu323]

Sorry I have not been around. The doctor put me on some medication for my depression and panic attacks. I am still very sad. I am trying to stay busy and being with my family a lot. I have read the responses from my first post here and I just want to take a minute to thank all of you who posted for me. Your words and advice really helped me. I didnt feel so alone in what I am feeling. I just hate how bad things happen to good people and bad people get away with murder. My whole life is in front of me and  I just cant beleive its stuck to a machine. I finally got my PRA results and it was 48%. I dont even know if thats good or not. Some people tell me its bad others tell me that from having already 2 transplants and about 60 blood transfusions (not exaggerating was near deaths door after last transplant) that my pra is surprisingly very low. Anyone have an answer or statiscal information so I can know what a PRA of 48% is for me? Again thank you guys so much for your responses. 

[okarol]

Hi Lili,
I am glad to see you back. I hope you keep sharing here, it really does help, in my opinion.
Here's information about PRA's and how one transplant program handles desensitization.
http://www.uwhealth.org/transplant/kidneydesensitizationprogramfrequentlyaskedquestions/10618
Hang in there!
 

[petey]

Marvin's antibodies level is 98% (isn't this basically the same thing as PRA?).  The way it was explained to us, that means that he would likely reject 98 % of the donor kidneys.  That's not good.  But, the neph said, that also means his name would come "up" more often when a donor kidney is available.

So, I said, "His name comes up more often, but he's much less likely to be a suitable match for them, right?"

"Yes," the neph said, "at least 98% of them."

I think, for Marvin, it's like looking for a needle in a haystack.  He probably has a better chance of winning the Publisher's Clearinghouse Sweepstakes.  ..... But, there is that 2% --  so, we keep waiting, and hoping, and praying.

[paris]

You are right, Petey, you have to have hope.  Mine is 100%--no transfusions, no transplant--just pregnancies.  Transplant center told me it could be 30 years or when hell freezes over.   I still have hope.

And PRA is the antibody level--right again!

[pelagia]

 

[alrightstill]

Lilu - if it's not too much to ask, could you explain what happened with your second transplant/plasmhaphersis and why it was a near death experience?  Was it from a cadaver?  If you'd rather not talk about it I completely understand.   

I'm 28 as well and I've been waiting for a 2nd transplant since 2001 - but antibodies, like Marvin's and it seems a lot of people here, are way high.  I think last time they told me it was 97% and doesn't seem to be getting any lower. 

I'm glad you got help for your depression though.  I've been considering doing the same, though I'm not sure if I'm really depressed or just grieving from the loss of 2 loved ones in one month. 

Oh!  Also - maybe you should see about doing NxStage?  It gives you a bit more freedom since you can do dialysis at your leisure and in the comfort of your own home.  (That is, unless you're already doing PD.. ) 

Hang in there and think positive! 

[502Blues]

My city is so slow, We havent even started to do plasmapheresis here yet but soon. The antibodies in my blood is whats keeping me from getting a transplant sooner. Ive been waiting for 10 yrs now minus a few periods of deactivation. They are planning on giving me the plasmapheresis treatment once they start doing it here. you said you almost had deadly results,what do you mean by that, is it dangerous?

[lruffner]

My city is so slow, We havent even started to do plasmapheresis here yet but soon. The antibodies in my blood is whats keeping me from getting a transplant sooner. Ive been waiting for 10 yrs now minus a few periods of deactivation. They are planning on giving me the plasmapheresis treatment once they start doing it here. you said you almost had deadly results,what do you mean by that, is it dangerous?

502Blues-

I also live in Georgetown, KY and am shocked to hear about the plasmapheresis not being available for you in Lousiville. Are you going to Jewish? I considered being put on the transplant list there, as well as at IU, but they have scared me a bit, so I am going solely to IU for now. I may contact Cincy.

[502Blues]

Yes,im going to Jewish. there are just now starting to do this at Jewish. At first my Dr. was planning to send me outta town to have it done if they didnt start doing it here soon.

[lruffner]

Jewish would be so much easier for me, without a doubt, but the nurse coordinator wanted me to get a heart cath. right now, before I have even been seen by a doctor. That really freaked me out, considering the risk of immediate kidney failure associated witht the dye. I still have 26% function and I am not ready to give that up just yet.

I am going to IU because my mom had her liver transplant there and I cannot say enough about them...they have been completely amazing for the past 4 years. My neph up there is also a doc at Mayo and has a ton of experience with my particular disease, which is somewhat comforting..except that FSGS has a bad rap. You know, they are known for having the shortest wait list in this entire region...have you thought about going there? What is your blood type? From what they have told me, the longest an "AB" or "B" type has had to wait is 3 years. Just a thought 

[502Blues]

Yeah,ive heard that. Im A+ , I will have to look into that. I had about 5% kidney function when I started dialysis.