My Madison evaluation

[MooseMom]

I also think you made an excellent point MooseMom about the anger and hurt being basically the same emotion.  I don't think they can be separated.  Right now there is plenty of both bubbling up inside of me and it is hard to manage.  As you have said many times on these boards, there is nothing fair about the transplant process.  The disease is not fair, the listing process is tedious and tortuous, the allocation system and varying wait times across regions is nonsensical to say the least, and the fact that for us to get a transplant someone has to either die or submit to an major operation and give up an organ is the most unfair of all.  There are so many sources of the anger, but the roots of it run deep in the larger picture of unfairness.  And in the end there is no one to ultimately blame.  As any of you know who have met someone who is bipolar, most who suffer with the disease are often noncompliant with the meds and doctor appointments and live chaotic lives that hurt those around them  For 35 years I fought hard to get well and stay well.  I took all the meds my doctors suggested, suffered the side effects and worked hard to find the most effective and least toxic combination that would work for me, and went to all my doctor appointments and got monthly blood draws the whole time I was on lithium.  I sought therapy and worked my way through some pretty difficult emotional stuff.  It was worth it--I have been stable for a long time and I've experienced a better life than I could have imagined years ago.  From the beginning, I understood the risk of kidney disease, but I was told the likelihood it would progress to ESRD was from 1% to 2% AND I was reassured 15 years ago when I got off the lithium that my kidney disease would not continue to deteriorate.  What is fair about any of this?  I reaped the rewards, paid a heavy price, and have to face what is ahead of me.  But I would do it all over again even knowing what I know now, given what was available to me at the time.  How's that for a cruel irony?

You're right.  It's not fair.  And what do we do with the anger caused by the unfairness of it all?  I vomited my rage all over IHD. 

You did everything right, and you took a calculated risk with the lithium.  Your odds for avoiding ESRD were very, very good, yet look what happened.  Yep, it's unfair.  I'm glad you have no regrets for the choice you made.  It wasn't very much of a choice really, was it.

I have fsgs.  Why?  No one knows.  What's up with that?

Some of what happens to us in life is so random.  Sometimes those things are good, sometimes they are not.  My fsgs is a random occurrence.  On the other hand, the fact that I got a pre-emptive cadaveric transplant is just as random.  All my life I had been careful with my body, taking care of myself, yet I still got fsgs and I still ended up with having to prepare for dialysis.  But the very fact that I HAD made the effort to look after myself made me a MUCH better tx candidate and made my body strong enough to sail through surgery and the aftermath.  You made a great deal of effort in taking care of your mental health for many years, and this will serve you well during this pre-tx period of your life, believe me. 

[tigtink]

I had to laugh when I read your question about my brother-in-law.  If you knew him at all, even for a very short time, you'd know that he almost certainly is being judgmental of her, or at least she is fearing he will be.  He's mellowed a bit over the years, partly because of the way one of his children has challenged him, but being judgmental is second nature to him.

Thank you for your suggestion.  I actually have done pretty much what you suggested, only in an e-mail late last night.  I chose e-mail because she struggled so hard to find the words to talk to me on the phone, I felt she needed some space to process things.  I think my phone call yesterday was unexpected and caught her off guard. I wish now she had not even taken my call and instead called me back later when she had her thoughts together a bit more.  I wrote to her that I was deeply grateful she got tested, thanked her for what she has already done and offered to do, and expressed my fear that this would create distance between us once again.  I encouraged her to work with me to not let that happen.  Basically, I let her know I saw how painful this was for us both and I attempted to "let her off the hook" as you say.  I hope I sounded sincere because it came from my heart, even though is was written through my tears.  I told her I had faith that this will all work out in the best way possible and let her know I was ready to move on.  I said I needed her as a sister a lot more now than I needed her kidney.  No response yet, but I did not expect one this soon.  She is the kind of person who needs time to sort things through, and she has plenty to work though right now.

Another thought occurred to me as to why she was reluctant to talk yesterday.  It was April 14 and I am a CPA buried in last-minute tax work!!  She probably wanted to wait and not add this stress to my workload.  Lucky for me, I've kept up pretty well with the work.  I really needed the freedom today to focus on my emotional well-being.  Thank you all for being here and helping me do just that.

[MooseMom]

You are a good, kind and merciful person, tt.

It occurs to me that she may need some time to forgive herself.  She is probably her most ruthless critic.  By telling her that you needed her as a sister more than you need her kidney, you showed such grace and mercy.     I hope she will remember your words as she tries to show herself the same.

Good luck to you both.  I know this is a very personal topic, but if you are comfortable with doing so, I'd love to hear how things progress between the two of you.  I hope you find your way back to each other.  It sounds like you are on the right track.

[tigtink]

Oh yeah--and I forgot what may be the biggest piece of all of this:  She is 12 years older than I am and was my caretaker when she was a an overwhelmed and abused teenager.  She left home when I was a toddler, at a time when my mother was acting crazy and my dad had moved out to escape her abuse.  She has never really gotten over the guilt of feeling like she abandoned me and my sister by going away to college. I've told her the fact that she left was what she needed to do to survive, and that she was the only one who showed me it was possible to break free from the madness my parents created and reach for a healthier life.  Plus when I was a teenager and my mother kicked me out of the house, Shirley and her husband took me into their home for two years even though they did not have much money and had a growing family to tend to.  Like I said, there are many elements to this story.  It is really not difficult for me to try to be understanding of her in spite of my emotions.  She has earned that much from me.

[tigtink]

Well, I got an e-mail response from my sister last night.  My reaching out to her had the desired effect in that she reassured me she loves me and wants our relationship to continue as it was before.  She emphasized she will do everything she can to support me.  There was no real sharing of her emotions though, and her response really left me flat.  It was relayed in a kind of "your-big-sister-knows-what-is-best- for-you" tone that felt more like lecturing than like honest sharing.  She said she thought she had been clear with me that she had serious reservations about her age and only wanted to get the initial testing to find out if she might be a match.  Apparently that is all she ever intended to do, but she had not at all communicated this fact to me beforehand.  She apologized for not being clearer about her intentions.

One part of what she wrote really pissed me off.  She explained to me, as if this was all somehow new to me, that the testing process was a long one and that I should not count on anything or get my hopes up about a donor until they actually wheel me into surgery.  She writes:

"If anyone comes forward for that initial screening. it is only the beginning of a process that may or may not lead them to be a donor.  Of course this emotional roller coaster is very difficult for you.  I hope in time you will be able to hold the process loosely.  Right now it is very new and very emotional."

She really does not get it.  First of all, she is not just "anyone" who came forward as a donor.  She is my sister, and that is much different than even a niece or nephew coming forward.  It is loaded with emotion from the beginning.  Second, although I may get more used to the process, I will never "hold the process loosely."  This is my life that is at stake, and I choose to feel every bump and twist and turn in the road as fully and as deeply as I need to in order to get through this.  I worked too hard for too many years to free myself of emotional numbness.  If I don't give myself room to feel the pain and disappointment along the way I will also not be able to feel the hope and joy and love I experience as I move forward.  I will not be able to enjoy the good things and open myself emotionally to the people I care about.  Time's a'wasting here and I won't surrender a minute of feeling everything to its fullest.

Either she really is that detached from her own emotions or she is unable or unwilling to share much with me.  I would like to believe this is the best she can do, and I am grateful for her willingness to keep up a relationship and offer to help.  But the fact remains that she does not at all get what I am going through and probably never will.  She says she has a strong feeling that a better option will be there for me, and she is probably right.  She has decided she is "not my best option" based on incomplete and inaccurate information, but her mind is made up.  I know I will have to accept that and move on, but it does not feel good to me right now.

[Deanne]

I'm sorry. I think many here can relate to what you're going through. You're correct in thinking your sister will never get it. She can't get it. Even though she's watching you go through kidney failure, watching isn't nearly the same as experiencing.

From what you say, I believe she truly does love you and she's doing the best she can, but this is beyond her abilities. Of course you're angry and disappointed. I imagine you will be for quite a while. She let you down and she showed you a side of herself that you didn't know existed. You thought from past experience that you could always count on her and you probably question that assumption now.

I've kind of gotten used to being let down by people. Maybe my expectations of them were too high, but I don't think I expected any more from anyone else than I would give them. I don't expect much of anything from anyone anymore, so when someone comes through with a promise, I'm elated instead of feeling let down when they drop the ball. Maybe that makes me jaded, but I'd rather be jaded, happy, and always with a backup plan than disappointed over and over again.

[MooseMom]

She said she thought she had been clear with me that she had serious reservations about her age and only wanted to get the initial testing to find out if she might be a match.  Apparently that is all she ever intended to do, but she had not at all communicated this fact to me beforehand.  She apologized for not being clearer about her intentions.

Huh?  She went through the initial testing just because what, she was curious?  Why would anyone do this?  I'm baffled. 

One part of what she wrote really pissed me off.  She explained to me, as if this was all somehow new to me, that the testing process was a long one and that I should not count on anything or get my hopes up about a donor until they actually wheel me into surgery.  She writes:

"If anyone comes forward for that initial screening. it is only the beginning of a process that may or may not lead them to be a donor.  Of course this emotional roller coaster is very difficult for you.  I hope in time you will be able to hold the process loosely.  Right now it is very new and very emotional."

At the risk of pissing you off further, she has a point.  This is something we ALL learn along the way.  I can't tell you how many stories I've heard just here on IHD about donors who have aced all of their testing, only to find out at the very end that there is now an antibody problem or some other stupid thing.  And with cadaveric donors, well, many of us have actually received the call, gone to the hospital, been prepped for surgery only to have the surgeon at the very last moment declare that s/he's not happy with the kidney.  These are the kinds of occurrences that make this process so hard.

It is loaded with emotion from the beginning.  Second, although I may get more used to the process, I will never "hold the process loosely."  This is my life that is at stake, and I choose to feel every bump and twist and turn in the road as fully and as deeply as I need to in order to get through this.  I worked too hard for too many years to free myself of emotional numbness.  If I don't give myself room to feel the pain and disappointment along the way I will also not be able to feel the hope and joy and love I experience as I move forward.  I will not be able to enjoy the good things and open myself emotionally to the people I care about.  Time's a'wasting here and I won't surrender a minute of feeling everything to its fullest.

I'm all for living life to its fullest, for feeling avidly and deeply.  But if you feel EVERYTHING to its greatest depth, you will become emotionally exhausted.  While you don't want to slog through life in a state of complete numbness, you also don't want to feel the prick of every single thorn that might brush past you.  You have to save your emotional strength for the long struggle ahead.  It doesn't have to be all or nothing.  This might be a great time to contact your therapist again to get some guidance on how to protect your heart and your mind from every assault.  Deanne has said what most of us have discovered....as you go through this process, you learn to shield yourself a bit.  You don't need total numbness, rather, you need a modicum of emotional protection.

Either she really is that detached from her own emotions or she is unable or unwilling to share much with me.  I would like to believe this is the best she can do, and I am grateful for her willingness to keep up a relationship and offer to help.  But the fact remains that she does not at all get what I am going through and probably never will.  She says she has a strong feeling that a better option will be there for me, and she is probably right.  She has decided she is "not my best option" based on incomplete and inaccurate information, but her mind is made up.  I know I will have to accept that and move on, but it does not feel good to me right now.

Again, Deanne has told you the truth.  Your sister will never get it, but that is no crime.  I know my husband loves me deeply, but he doesn't get it.  Frankly, I don't want him to because I love him and don't want to see him suffer from ESRD.  I don't "get it" with cancer or ALS or a whole host of ailments because I've never suffered from them, but that doesn't make me stupid or unkind. 

I am sorry this is happening between you and your sister.  When it is family that disappoints you, it is so hard to reckon with.  She should not have gone through any testing in the first place.  I still don't know why she did that if she had no intention of continuing.  I suspect there is an untruth hidden in there somewhere.  No one gets tested merely to find out if they'd be a good match if they've already decided not to go any further.  There's something not quite right about this, and then to explain it all away as some sort of miscommunication?  Hmmmmm.

You're right...you will have to accept this and continue on.  You have no choice.  What you DO have a choice in is how you relate to your sister from now on.  But don't decide just yet.  Try to let it go for, say, a week, and then maybe revisit this issue if you want to.  Let some time pass.  The weekend is coming up.  Find something joyous to do!  There are lots of feelings out there you can deeply experience.  Find a good feeling and go with it!  We've talked about mercy.  Show some to yourself.  Remind yourself that you've made tremendous progress!  You're on the list, accruing time, you are at 18 gfr and might very well stay there for a good long time!

I hope that posting here on IHD has been of help to you.  Your sister doesn't get it, but we do.  You can get support here.  It's what we do! 

[tigtink]

Of course she is right about the process.  I read these boards and I do my homework.  I know how many things can and do go wrong and how often hopes get raised and then dashed right up until the day of the surgery, and afterwards there is a whole new round of equally big challenges.  My problem with what she said was the inference that my emotional reaction to her dropping out as a donor was because I did not yet understand the process and was too new to it to get a grip on my emotions.  I don't think it would have mattered if I had been on the list for years and already faced many disappointments.  She is my sister and to have her step up and offer only to pull back the instant she found out she might be a match--and not even have the courtesy to call me and let me know she had heard the results--that would have been painful no matter when it happened.  It was not because she was the first to get tested and the first to back out.  It is because she did not level with me about her feelings.

I also expect, as you suggested MooseMom, there is a piece of this she is just not being forthcoming about.  Perhaps she intended to go forward and her husband pressured her to find a way to back out.  But I am ready to move on.  Being able to vent here has definitely helped me get a better handle on things.  You guys understand in a way that no one else does.

On a brighter note, I went to the eye doctor to day for a six-month follow-up visit after my cataract surgeries.  Two years ago I was all but blind in one eye and losing sight fast in the other eye.  I could not drive at night and I could no longer see well enough to read a book.  I've had corneal problems most of my life, probably genetic.  I had a corneal transplant in one eye years ago, and now, after a second transplant in the other eye followed by cataract surgery in both eyes, I am seeing better than I can ever remember.  I can drive at night now for the first time in years and the world around me is in vivid color once again. He said everything looks great and I don't need to go back for a year.  I was able to thank him for all the help he has given and let him now how much this has improved my quality of life.  He said I made his day.

It occurred to me that after the kidney transplant I will have parts of three different people inside of me!!

[Angiepkd]

I am so sorry that your sister is unable or unwilling to understand how hard this process is on all parties involved, but especially the recipient. I suffered through more disappointments than I could imagine while going through my own search for a live donor.  Even with my families history of kidney failure, I was shocked at how many people just didn't get it, or didn't offer to be tested for me.  I always say that you find out who your friends are when you go through something like this.  I finally just had to let it go and move on with things.  Luckily, my husband was a match, and gave me a kidney on March 4th of this year.  It was far from a smooth process, and we had many let downs along the way, but we didn't give up.  Many members of his family were willing to be tested for me, which really touched my heart. Especially since almost no one in my family offered.  I have come to realize that most people are too self involved to be of any real help, and that makes me sad.  I understand that it is a huge thing to do for someone, but know that I would do it without hesitation. Maybe that comes from being on dialysis, or maybe that is my personality.  I hope you find a donor soon!  I know it's hard, but try not to hold it against the people who back out or don't offer to help. I felt much better when I let all the resentment go, and accepted the fact that some people aren't capable of giving something so big, and that's ok.  I know that's easier for me to say, now that I have received a kidney.  Hang in there and never give up!  It will happen for you!  Glad you got your vision back!

[jeannea]

Family! Love them, hate them, all at the same time.

[tigtink]

Ain't that the truth!!  You summed up this whole thread beautifully, jeannea.

[MooseMom]

My problem with what she said was the inference that my emotional reaction to her dropping out as a donor was because I did not yet understand the process and was too new to it to get a grip on my emotions.

That would piss me off, too!!!   How dare her lecture you on a subject about which she knows next to nothing, and how dare her assume that she is allowed to tell you what to feel and what not to feel.

Terrific news about the vast improvement in your vision!  Congratulations!