angry...: Ok- so, I had a live donor...my... - Kidney Disease

Kidney Disease

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Nikki41775 profile image
27 Replies

Ok- so, I had a live donor...my husbands ex-boss, friend. He decided to back out. I know what I am about to say is all on me...I know no one owes me anything..I get it...I really do. But my husband is this person's best man in his wedding. The wedding is approaching rather quickly and all of the pre-wedding festivities are going to be happening really soon. Truth of the matter is that I am resentful. I know I have no right to be. He doesn't owe me anything. But needless to say, I am not feeling really "weddingy". This is causing problems between my husband and I because I really don't feel like going to the rehearsal dinner and the party afterwards. He feels like I am not being supportive of his role of best man. Truth of the matter is, I wish he would back out but he make a commitment and is going to see it through. My husband thinks that I hate them. I don't hate anyone...I am just angry and resentful. Like I said at the beginning of my post, I know its all on me. I'm just trying to figure out how to deal with the rejection.

I know I am a piece of crap for feeling the way that I do so please don't yell at me :)

I just needed to vent and have no one to vent to. thanks for listening!!

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Nikki41775 profile image
Nikki41775
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27 Replies

Your feelings are if nothing else, honest. On one hand, your husband is honoring his commitment to his friend/boss. I'm not sure why he isn't upset that his friend isn't honoring his commitment to you. Did this friend of his know that his wedding plans were going to coincide with your needs?

If your feelings are such that you don't feel like attending, then don't. Actually, the bride and groom would much rather not have you there with your feeling as you do. Privately, are you getting any support from your husband about losing a donor.

Don't minimize your feelings.

Nikki41775 profile image
Nikki41775 in reply to

I think my husband is upset about his friend backing out. but at the time, my husband was his employee. (he's since switched jobs) and I think he had to play nice since he didn't want to lose his job. But now that he no longer works at the company, he says that he has to honor his commitment since that is the right thing to do but after the wedding, he is going to start putting distance between them.

He has been very supportive about my losing a donor. I think that he really doesn't know what to do or say and honestly I don't blame him. Unless you've been in the situation, one really doesn't know how it feels.

Bassetmommer profile image
BassetmommerNKF Ambassador

HI Nikki,

I am sure all of us would feel similar in your situation. I agree with Mr. Kidney. I would have a hard time going to the wedding. So don't. Your entitled to your feelings, but don't bring it to the wedding. As far as your husband goes, he is caught in a tough situation. It is not that he is dishonoring you, he is doing what a good friend asked of him.

The fact that he even offered is pretty amazing. But the follow through is often very difficult. I know I would have a hard time giving up an organ for anyone and I have CKD.

In time, I hope you let go of your disappointment. Instead, actively work on finding someone else. You do not say what stage you are in. Have you worked with a dietician to see what you can do to help yourself? Is transplant your only option at this point?

This is a good place to vent, because we get it. No judgements. But anger is not a good energy to hold on to.

Nikki41775 profile image
Nikki41775 in reply toBassetmommer

Thanks for writing. I’m stage 5. On dialysis for 9 months so far. Active on the transplant list. I work with a dietitian monthly when I go for my labs

I’m trying to figure out a way to let go of my resentment. I just don’t know how to yet

I know my husband is in a tough situation. He’s a good man and I know he loves me. I would like to go to the wedding because I’m a sucker for a good wedding. I just have to figure it out

Bassetmommer profile image
BassetmommerNKF Ambassador in reply toNikki41775

I love weddings too. If you go, it might help you to see the other point of view from the friend's side. He is getting married. It is a happy time. Planning on a major surgery at this time might be something he...or his bride....didn't want to face. Maybe in time, he will see how gracious you are and change his mind. Maybe not. But go to the wedding, eat and enjoy the day. It might soften anger.

But.... no one disagrees with you that you have the right to feel what you feel. I am just trying to help with suggestions to get through it.

Nikki41775 profile image
Nikki41775 in reply toBassetmommer

Thank you! I really appreciate it!!

EchoMax1012 profile image
EchoMax1012

To me, your feelings are 100% understandable and valid. I think both your husband and his boss should have empathy for the decision he made--hour anger and hurt are a natural consequence, and you would be fake to put on a happy face at those events when you are feeling so wounded.

Nikki41775 profile image
Nikki41775 in reply toEchoMax1012

thanks for validating my feelings. I was beginning to think that I was wrong for feeling this way

TaffyTwoshoes27 profile image
TaffyTwoshoes27 in reply toNikki41775

You are NOT wrong for your feelings, Nikki. Never. They are YOUR feelings and no one knows how they would feel walking a mile in your shoes.

I am kind of on the side that maybe he will change his mind later? You never know what will touch his heart and soul to give. If you burn your bridges, he may never reverse his decision. Don't be fake, but feel your hurt and anger, and keep faith that some day, things will change.

As far as your hubby.......we never know how far reaching our good work relationships will be of value in our lives. What if his new job does not work out and he needs a good reference from his buddy/ex-boss again? You never know.

Stress, I believe, is a killer in our kidney disease journey. And, BTW, how do you know the guy would even be a match?

I still wish you the very best, but maybe there is another chapter to your journey that will be better!?

EchoMax1012 profile image
EchoMax1012

I just re-read my first post. In line 2, husband and boss should have empathy for the decision YOU made, and line 2 should read 'your anger' instead of hour anger. Sorry if this caused any confusion.

Nikki41775 profile image
Nikki41775 in reply toEchoMax1012

No confusion caused. I understood what you meant :)

Jayhawker profile image
Jayhawker

Are you also listed waiting to receive a deceased donor kidney?

I do understand how difficult it may be for people to serve as living donors. Frankly, the situation is challenging for everyone involved.

I think I’d likely take the high ground in this situation. I’d stay home but send a gift with a note wishing the newlyweds well. (They know you’re in renal failure and may likely assume that you’re not feeling well...) That approach would give me time to process through the situation and address my feelings of loss over the change of mind on the part of the donor.

When I reach a point where I can interact with the newlyweds without harboring any anger, I’d reach out to them; invite them to an event of some dirt...

But I’d definitely stay home from the wedding as I’d just not be able to attend with the right frame of mind. It’s their day. I wouldn’t want my attitude to put a damper on their day. PLUS I would want to give myself some time to grieve the loss of this living donor kidney.

Jayhawker

Nikki41775 profile image
Nikki41775 in reply toJayhawker

Thanks for writing. I am listed but apparently I have a difficult blood type which will take longer for me to get a match

If I stay home, I will feel like I’m letting my husband down. I don’t want to disappoint him

I wouldn’t have been so upset by the situation if the person offering the kidney wasn’t so vocal about it. Meaning every time I saw him, he would tell me I can have his kidney. He even began the testing to see if he was a match. And we found out he has the same blood type as I do I just wish he would have researched everything before he opened his mouth

Jayhawker profile image
Jayhawker in reply toNikki41775

Definitely this person didn't handle the situation well . . . This isn't the kidney meant for you. Your kidney will come:) It's going to take some time. But it's definitely worth the wait.

You're a better person than me if you're able to go to the wedding and handle this with grace:) However, this really work out as it's meant to for you.

I'm a fine one to talk. I'm one of the most impatient people you'd ever meet. One of the things CKD is teaching me is patience . . . Slowly and surely I'm becoming more patient. Definitely not my best attribute . However, it's getting better:)

I'm glad you're listed for a deceased donor kidney as well. You're doing everything you can do.

Jayhawker

Herkidney profile image
Herkidney

Take a deep breath and stay positive. I understand that you are disappointed - you have every right to be disappointed. It isn’t clear from your post whether this person was approved by the transplant center as a viable candidate or not. Is it possible that he has a medical condition that prevents him from donating?

I am now one year post-Transplant, I can’t tell you the number of people who told me that they would donate a kidney and didn’t go through the process at all.

Keep positive and healthy. Hopefully you will receive a compatible kidney in the near future. As far as the wedding goes, think about whether you actually have the physical energy to attend the wedding. Would you be putting physical stress on your body to attend this wedding as well as emotional stress? Best wishes!

Nikki41775 profile image
Nikki41775 in reply toHerkidney

He went for his first round of testing and everything was looking really good. I think is family and fiancé changed his mind

I was planning on attending the wedding..taking the necessary steps to help me feel physically up to it. It was the pre wedding festivities that I didn’t know about. I do my dialysis at night so the two would interfere

itzmich profile image
itzmich

You must be so disappointed you had hope. You still have hope! You must forgive so that you can be free of the anger. Its important. I think his heart was in the right place but he didn't think it through. I'm sure he fell horrible too. When you let go of it you'll be open for another donor. I pray that it will happen for you soon. Good luck whatever you decide.

Dustypye profile image
Dustypye

You have every right to feel the way you do. My wife was my donor, so, I come at this from a different perspective. I would say that your husband's commitment is to you, and not his friend. If he feels he has to go, and be the best man, then that's okay. But, you shouldn't have to go. I know I wouldn't. When I was going through my own slow decline before my transplant, I had a former co-worker say to me, "it's always about you isn't it." People who have never been through a transplant and the time leading up to one have no idea what it's like. To watch your body slowly start to shut down. The crippling fatigue, the forgetfulness, the muscle and joint pain and the thousand other symptoms people with CKD have to deal with. If you don't want to go, don't go. If you want to tell this friend/former boss, "thanks for giving me false hope" then I say do it. Do whatever you need to do to keep yourself strong, both mentally, emotionally and physically.

Nikki41775 profile image
Nikki41775 in reply toDustypye

I'm so glad I posted! Thanks for replying. I'm only 44 years old and to see the changes that my body is going through from Kidney failure and dialysis is frightening to say the least! I'm definitely not the same person that I once was and it makes me sad. Your right when you say that people who aren't going through kidney failure have no idea what it is like. I honestly wouldn't wish it on my worst enemy.

I want to get over the disappointment and get back to how we were prior to his decision no to be my donor but I just don't know how. I'm angry..his life just went on like it normally would while my life is a constant struggle. Maybe I need therapy lol

Dustypye profile image
Dustypye in reply toNikki41775

I saw a therapist for more than a year before and right up until my transplant. It helped me a lot. And, I'm in my late 40s, so, I know what you're going through.

Nikki41775 profile image
Nikki41775 in reply toDustypye

something to consider for sure! Even more so since dialysis started. It's depressing at times to look down and see a long catheter hanging out of my stomach. Clothes don't fit me right anymore and its always a struggle to hide my tube so it's not visible. If I wasn't so scared of the needles, I would probably consider home Hemo but I just cant do the needles!

rom121amy profile image
rom121amy

Dear Nikki, I'm so sorry for your loss. My son has CKD and has had a transplant. His life is still difficult with so many pills to take and limitations on activity. His donor was told his remaining kidney would take up the slack, but it hasn't. As it is, he is now living with reduced kidney function.

It is no small feat to donate, and you don't want someone to donate to you only to put themselves in a precarious position. The unfairness of life is hard to take, but we should all try to forgive and pray for others. That forgiving is so cleansing for ourselves!

KidneyCoach profile image
KidneyCoachNKF Ambassador

I agree with most advice given regarding this complex and emotionally driven issue. Its a difficult situation. I've been there several times and it is a hodge-podge of emotions. Firstly you need to acknowledge your anger (which you are) and grieve. This will be a process. It can happen quickly if you control it or be dragged out if you don't.

The wedding attendance and pre wedding festivities are really dependent upon how you feel physically. Let me ask you this, if he had not backed out would you still attend the wedding et al? If so, then that's your answer. After all the wedding really is about him not you. I know that sounds harsh. You can grieve on your time later, but now is the time to step up to the plate and let the resentment and anger disappear. No half tries, sarcasm, glares etc. Really allow this guy to live in the joyful moments of the day and celebrate with him as you would want others to do with you when it was your wedding day. He will appreciate this and it may soften his heart to change his mind again. If you just can't manage to go with all your heart, then don't. As others have said, if you attend with resentment it will be felt by others and sour the experience. Challenge yourself on this fully. You can be in control of what you do and how you feel. I'm not saying you should deny your feelings. I'm saying there is a time and a place and the wedding doesn't qualify.

Secondly you are still in the baby stages of kidney failure. It is still relatively new. Your comments show you're still coming to terms with all the changes so give yourself a bit more time to realize dialysis/transplant is forever. Harsh words I know. We all go through the grieving process for our old lives. I cycle through the grief ever few years or so. This life is TOUGH! Those who don't understand often have an opportunity through us to learn some of the challenges we face. I often use my kidney issues as teaching moments. You'd be surprised how many really want to learn more and are compassionate as well as supportive.

It sounds like you've got a great supporter in your husband. Let him fulfill and honor his commitment without reservation. In doing this you will be giving him the support he deserves as a husband and friend.

Thirdly, you are on the list. That is a great achievement, be proud of that. Many are unable to get listed for other reasons. How would you feel if you were called with a kidney available and then at the last minute learned the deceased donor's organ was damaged or disqualified? It happens all the time. Would you be angry at the family? Why or why not? Dig deep into these reasons and feelings. Confront them, deal with them. Have a pity party, just don't live there. Get counseling. Talk to your clinic social worker as she have resources to help. Start a journal. Take up painting, gardening or some other hobby to express your feelings. Do it with fervor. I promise once you find your niche to express it will change you.

I was listed for nearly 10 years, never a transplant. Due to high antibodies from having children, 16 transfusions and 7 episodes of sepsis I am a tough match. I have type O which means I can donate to anyone but only receive from type O. I've gone through the desensitization process multiple times to no avail. My antibodies are 98-100% meaning I would likely reject 98-100 possible donors.

I've been on dialysis nearly 18 years. Its a tough life. Don't fool yourself into thinking a transplant is a cure or will solve all your problems. Transplant life has its own set of issues. You may have none, some or many. Be thankful you are on the list. I know, harsh words again. Of the 600,000 or so on dialysis barely 100,000 of those are able to be listed, and 20 of those on the list die daily while waiting yet the number listed doesn't change. Think about those odds. You are fortunate.

I feel your anger, resentment, sorrow, pain, frustration and all that goes with your situation. I truly relate to your problems. I wish I could waive my magic wand and make you whole again. Until I can find my wand and my magic I wish you comfort, peace, hope and resolve. I wish for you happiness, joy, contentment and a long fulfilled life. Many Blessings, Amy

Nikki41775 profile image
Nikki41775 in reply toKidneyCoach

Wow! You don't know how much I appreciate your message!! It really made something in my stubborn mind click so thank you for your words! You gave me a lot to think about.

Clarrisa profile image
Clarrisa

I worked in a Blood donation center for a number of years & it was not uncommon for a parent (or other family member or friend) to want to direct a donation to a specific individual but they did not qualify for numerous reasons. The screening process for a organ must be more involved.

I remember my first day on this job my trainer gave me a tour. A very large probably 35 year old man had a finger stick with a lancet to check his hemoglobin level. He instantaneous passed out. The trainer told me it was always the men (as they are not as used to seeing blood). Luckily the trainer did not notice I was not handling it that well myself!

People will feel their greatest sense of frustration when their hopes are dashed like yours were. Unfortunately people change their minds too frequently when it gets down to the nitty gritty of matters. The theory of cognitive dissonance says it will statistically be people on either side of the classic bell shaped curve on views.

Intellectual one might process such a disappointment but emotionally it takes longer. Can you recruit a sibling to go in your place? I feel for your situation & wish you much peace with your decisions from across the pond. God bless.

ILMA54 profile image
ILMA54

My intention is not to spout platitudes. Hopefully, I wont.

I have found two things that help me through situations.

First, I keep a gratitude list that I go through every day. What is perhaps unique is that I add everything that is not going well in my life to the list. In my belief system, it is my way of acknowledging that God has everything under control, and He will bring about the proper results at the proper time. It also helps me realize not everything is up to me and how hard I want something or work at something.

Second, I pray for people I resent. I had a boss several years ago that did some incredibly hurtful things to me that took me a long time to get over (still working through it, to be honest). I knew I had not gotten over it when I cheered 21 months later when he was fired from his next job. I knew then it was time to start praying that God would bless him and give him success. Strange as it may seem, it helps me from getting pulled into thoughts of vengeance and retribution (at least most days it does :)

Again, I hope what I said was taken in the spirit of trying to be helpful.

Regards,

TaffyTwoshoes27 profile image
TaffyTwoshoes27

Vent all you want here!! This is the place for it.

I can relate. My sister had been telling me for YEARS that she would donate a kidney to me IF I ever needed one. I never knew I would need one! No kidney disease in my family history!

After my evaluation at Emory University, I gave my sister the contact info for the donor coordinator. My sister SAID she called to arrange evaluation. Then, I changed Transplant Centers to another local hospital. I completed my evaluation at that hospital; provided sis with the donor coordinator's number; and again sis said she reached out to schedule evaluation.

A month or two later, she finally admitted that she didnt feel comfortable donating. She SAID it was unfair to her "new husband" of 4 yrs. Then, she called back when her "new husband" said "dont blame it on me. Do it!" Sis then said she was too scared.

I have resentments too. I keep talking to myself saying "what will be will be."

But, get this. My sis was a Chaplain in hospitals for at least 20 years. Her responsibility was to get families to donate deceased patient's organs. Irony......I remember when she would get frustrated and angry when families would not donate organs.

I listen to Matthew West's song "Forgiveness". It is true that to forgive someone will lift the resentment and the weight of the unforgiveness off of you. It takes practice every single day.

My sister is always "gushing" how she LOVES me. It is hard to accept since I gauge love by actions, not words. I work on that flaw in myself too.

Life is just not easy....whether you need a kidney or not.

Hang in there! Maybe try to give the guy credit for even *thinking* of donating?! God bless.

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