I need help.

[Des]

I need help.

I have never been so scared , dissapointed, worried and  this is the lowest I have ever been ( in a VERY VERY long time)

I am having  my nephrectomy the 12 Jan and I thought I was ready, but I am not.

I spoke to me prospective donor and I don't think that she is  still keen to donate and that little bit of info on Sunday night sent my life  in a turmoil. I am shaking and crying. I am  so worried about my family and my job and my life in general. I have to now accept the idea of being on dialysis untill I get a kidney from the list. I have not made peace with that idea at all.

My medical aid might change over to a new one in March and I don't know if the new medical aid will accept my existing condition.(This is a real concern as we already received a letter in this regard)
And to top it all when I arrived at work my boss shouted that my work was not done while I was on leave and expect me to have it done before Friday.    He said If I am feeling so sick why am I not at at home?? 

[Des]

I just want too 

I am crying as I type this. I really don't know how to handle this. It is too much for me at the moment.

I just wanted to share.....

[pamster42000]

Des,
Know that you have a wonderful support group here. We will listen and care what happens to you. You have alot of issues to deal with right now, don't make any rush decisions .....

What did your prospective donor say to make you think she isn't as keen to donate now? Maybe she is getting nervous about the procedure and just letting you how she feels.

Usually when a medical aid is changed over the new insurance has to accept pre-existing conditions...I thought.

Your boss don't seem like a very nice person. It appears to me he is trying to get you to quit by being overwhelmed. Your work should have been done while you were on leave by other co-workers. Is there another person that can help you with the work?

This is one of those times where you have to take life one day at a time. Have courage and faith everything will work out.

[pamster42000]

 
Today if you have to work, just do what you can, don't push yourself...that will make matters worse. I wonder how the boss expects you to get all the work done before Friday when you were (probley) gone for a period longer than that. Hopefully other co-workers will help you out.

Crying is a good release. Been there done that...... expressing your feeling also helps...I am glad you shared with us.

You will receive other posts that will help you and guide you through this rough time.

Take care Des.

[Des]

Thanks 

I phoned my donor to tell her when she has to go for the workup tests and she then said I need to just wait a few months or so.....   I am not cross or anything.... I depended on the fact that she said she will be there when I need the kidney and now she  is not. And I told her in Dec when the transplant will most propably take place. I am not cross at her at all. I am cross at myself for depending on it.

The lady who was suppose to do my work just didn't bother..... she came in late and she left early. Now this is the same person who is going to do my work when I am off for  6weeks for the op next week. 

Thanks for listening.

[monrein]

   Des.  This is disappointing and overwhelming and frustrating and I wish you weren't going through it.

[YLGuy]

Des, hang in there.  I am so sorry to read what you are going through.  Thinking about everything all at once can be overwhelming.  Take a little break and think about your wonderful family.  It helps me when I am down. (thinking about my family not yours) Did I get you to smile?

[dwcrawford]

Des, I have no words of wisdom other than cry and scream or whatever makes you feel better and then get up and realize you have a friend here on the other side of the world who cares very much what you are going through. 

As regarding dialysis, the thought of it is far more daunting that actually doing it.  Eight months in now and I am starting to look forward to going to  see my friends at the center each MWF.  I hope, if you have to do it, that your experience will be just as positive as mine was.

In the meantime, Des, just let me say thank you for being my friend.  Take one step  at a time.  You are good, you are strong and you will come out a winner I'm sure.

Your friend, DW

[cassandra]

Dear Des, I hope the letters you've had will make you feel a tiny bit better. I;m on dialysis now for 12 yrs and  its not the end of the world. No point seeing it like that anyway. I understand how difficult it is to have a donor who withdrawa (been there,done that ) Keep strong my friend and even dark clouds will drift away.

love Cas

[Des]

    happy tears.

Thanks, my friends. At least there are people that gets it.

[Des]

pamster4000 Thanks , you give good practical advise. "courage and faith"  - I have faith.... I will work on the other.

Monrein, Thanks for listening....... I can handle most crappy things, one at a time but not all at once.

Ylguy,  I smiled (through the tears) Thanks for being there/here...aah  you know what I mean. I phoned hubby the minute that the boss left my office and I spent and half an hour on the phone with him. I love him lots- don't know what I would have done without him.
Cassandra, I need a strong wind for these dark clouds to go quickly ! Thanks

Dan, YOU are so special to me.           

[paris]

Des, I am so sorry you have so much stress, confusion and frustration going on.   It all sounds so simple; just get a preemptive transplant and go on.  That was my plan.  Then donors don't match, have their own emergencies and can't donate, etc.   This is another step in the grieving process of kidney failure.  I hate that the plans have fallen through.  Go ahead and be upset, cry,  and vent to us.  Then, maybe one day soon, things may change and that live altering tranplant will happen.    Don't push yourself too much at work. Rest as much as you can.  And come here and talk to us.  You have so many people here who love you        We live with hope, right? 

[okarol]

  We had numerous donors turned down or withdraw, and it is very difficult to take. I hope things work out Des. xoxoxo

[cariad]

Oh, Des, I am so sorry.  The SA system for medical aid sounds scarier and more stressful than ours. Do you have access to any sort of patient advocate/social worker who could suggest options to you?

Can you speak to the potential donor and take a deep breath and be very direct with her? Tell her you're not angry, but make sure you are interpreting her actions correctly?

I would cry and be scared too, Des. I do it all the time.

I wish I could help. Take care. We're all thinking of you. 

[billybags]

Des what can I say, only that we are all thinking about you, It will happen one day, dreams do come true. keep going one step at a time.

[willowtreewren]

Des, I so understand what you are going through. We had a donor pull out after 6 months about this time last year. Then it happened again in November. The hard part is getting your hopes up and then having them dashed. I really understand the frustration and the tears. And not being angry with the potential donor, too. I'm not angry with either of them, nor is Carl. Contemplating surgery is scary stuff. Even when I was trying to be a donor for Carl the thought of the surgery scared the bejeezus out of me, but I would have gone through with it anyway. For others who aren't as vested in the process, the fear might be enough to cause them to back out.

Many hugs to you. I don't know how to help with the insurance issues. But you know I dearly want that to work out for you.

 

Aleta

[kellyt]

Oh Des, I feel your pain.  I'm so sorry you're going through all of this at once.  When it rains it pours, and it has poured on me plenty of times.  You will come through this.

Before my actual donor offered to test I had a great friend in Arizona express interest in testing.  She called the coordinator and got all the info and she was ready to start the testing and then boom, she got pregnant.  It was like "if figures" in my mind.  But like you, how can you be mad?

Hugs and kisses to you.  Post often and keep us informed.  We're here for you.   

[RichardMEL]

Oh Des *tight hugs* - this is difficult for you I can tell.

Re the donor.. I think you understand that while it is disappointing that your donor is pulling back that it is absolutely their choice and their right to do so. It's not like lending a mate $10 for bread and milk it's a serious matter and sometimes donors may pull back for any number of reasons. I can understand you depending a bit on it happening though and sort of beginning to plan things around that projected transplant. I got a bit that way myself when my sister was being tested - she got through progressively more and more tests and it was seemingly more and more a big green light to happen, and she only got knocked back at the final review. Sure, I was disappointed.. but I chose to look on it from the other point of view - at least now I won't ever feel responsible if something happens to my sister (it was a great worry of mine that say she donates and something happens down the track that could be traced back to her donation that I would still feel kind or responsible for that).

So I'm like you - waiting for that kidney from the list. Just have to accept that and wait on the call.. which could be days months or even years away. So I try hard to not concentrate on that aspect and just get on with living my life, doing my job etc and hopefully the transplant, whenever it comes, will take care of itself.

 

[Hanify]

Thinking of you Des - how disappointing.  Yes, I would ring and check with her that you're reading things right. 

[del]

Thinking of you Des    So sorry that your donor is having second thoughts but better than that give a kidney and be angry at you after because you have their kidney.  Take work one day at a time.  Shouldn't be you your boss is mad at should be the person who was supposed to be doing your work!!  My husband said to tell you that dialysis is definitely not the end of the world.  He has been doing dialysis since 1997 and he has lived a very active life on dialysis!!

Take care and know people are thinking of you. 

[Marsh]

 

[Jean]

Gosh Des, you must feel like that little kid in the comics who had a black cloud hovering over him all the time. I feel so badly for you and can only say that you know we are all pulling for you and hope and pray that things get better and very soon.   

[cdwbrooklyn]

My apologies Des.  I know what you are going through had I experienced the same thing myself.   

The day I was diagnosis with kidney faillure, my dad said he will give me one of his kidneys when I'm ready.  Finally, I was ready and my dad backed out.  I was very very very very angry with him.    He should not told me I can have one of his kidneys if he did not really mean it.  I was so upset I had to leave work.  To make a long story short, I finally forgave him and moved on just to find out later that my dad was HIV positive. 

Sometimes in life things that look good to us may not be good for us even if our hope are high.   Everything happens for a reason, sometimes people are not always honesty with you but trust and believe that something better will come along. 

I know you don't want to be on dialysis and I'm not mad at you but it's not really that bad although we all complain.  If you have to do it until the kidney comes then better safe and alive then sorry and dead.   I'll pray that you will get courage to do what's right until what you want can happen for you.   

[kitkatz]

Take a deep breath and calm down. Tackle one thing at a time at work and things will get done.  Do not over worry about the ESRD stuff. It will work itself out when it is meant to work out.

[paris]

Des, I haven't posted this before.  My son is a 5/6 match. Johns Hopkins was doing our workups and ready for plasmapheresis treatments for my antibody problem and then transplant.  He met and married a woman during that time that has seperated him from his family.  I have to put it out of my mind.  Wasn't suppose to be, I guess.  None of this is easy, but hopefully, knowing that we understand the emotional rollercoaster you are on will help.  Sending you hugs, love, and good wishes.