Living Donors Online Message Board
Living Donation Discussion and News => Living Donation Forum => Topic started by: leah.faith on September 28, 2011, 12:10:33 PM
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I had a rough day yesterday. I decided to donate my kidney to a friend after her kidney's failed because of type one diabetes. I didn't expect my family to be 100% all for it but I'm amazed and distraught how against it they actually are. I had my very last health assessment test yesterday at 3pm which was the CT scan. I've never had a CT scan before and the contrast dye they use, it turns out, I'm allergic to. I've never had an allergic reaction to anything in my entire life save a hive or two at the gym. I broke out in hives, my happy place and my tonsils swelled up, I couldn't swallow and my blood pressure was higher than I've ever seen in my life. I was scared. I'm ok but it was just distressing because I've never had that happen before.
The first thing my sisters said when I told them what happened was "So you're not going to do it now, right?" I couldn't call my mom because she's so freaked out over this. My husband I could talk to but he's not here with be because of the military. I feel so alone and worn out right now.
I'm young (27). Except for a bad SI joint, I'm the picture of health, they should put my face on a billboard with an inspirational quote. There's no history in my family, or my husbands family of any kind of kidney related diseases except for some kidney stones and high blood pressure (which because of my life style, I'm at low risk for anyways). There is no reason anyone in my family should ever need a kidney from me.
Oh, and then they're like "What if you're kid needs a kidney, what if I need a kidney". I don't even have kids. My family, while they're not as healthy as me should never need a kidney themselves.
I think the thing that bothers me the most. The thing that really gets on my nerves is the dumb assumptions that they're making. They assume I'm going into this like my friend was like "Oh, hey, I need a kidney, can I have yours?" and I was like, "Yeah, sure." I have RESEARCHED THE HELL OUT OF THIS!!!!!!! I had one sister say to me "You know you can't drink alcohol with just one kidney?" I wish I could slap the stupid out of her. Oh, and my other sister, I told her that I spoke with the doctors and they all agree I should be 100% ok within 2 months after the surgery and she's like "They're the doctors, of course they're going to tell you you'll be all right, they want you to do this." Seriously? Like they're getting a commission for every kidney surgery they donate. My surgeon only needs two more kidney transplants and he gets that free trip to Hawaii. My mom, who is normally a very smart women.... I've been telling her and keeping her updated since the beginning and she's sooo worried about me. Oh, but her friend's son donated a kidney and he's ok so that makes her feel better. I'VE BEEN TELLING HER SINCE THE BEGINNING I'LL BE OK IN THE END!!!! But does she believe me? NO!!!!!!!
I know there are risks!!!! I've know more than anyone else out there, not directly related to the medical field, about this procedure. I know more than my friend and she's the one who needs the kidney and my family assumes I'm an idiot. It makes me so upset!
Yesterday, and I know this sounds stupid, but yesterday all's I wanted to hear after I had that bad reaction was, " I'm so sorry Leah you had that reaction, but you're ok now and in the end, it's worth it. What you're doing is so great and you're so healthy that you'll be ok." Not "Well, why are you doing it then". f-ing jerks.
This is the first time in 14 years I wish I wasn't an atheist. (ok, the second time). I know if I was like "Ok, god's telling me I should do this" people would back the hell up and support me. If god was telling me that I should give away an organ it would be ok but the fact that I just feel like this is the right thing to do, I know this is the right thing to do, I'm crazy.
I feel like, after all the research after all the doctors, there's not a good enough reason not to do this. Afterward my life's going to almost 100% the same. I'm a healthy girl and most of the changes a person has to make after they donate I either want to do anyways (I realllllly shouldn't drink as much as I do) or I'm already doing on a day to day. I don't smoke, I don't eat fast food, junk food or meat (mostly, I'm not perfect), I exercise regularly, I don't do drugs. I'm going to be ok.
The most important thing, I think though, is the girl I'm donating to, her life will improve DRASTICALLY!!!! That the most important thing. I wish my family could see that.
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Hi Leah,
It sounds to me like you have reseached your donation decision, had a suprise reaction to a test and could use some support. When I donated, and when a friend donated to my son, there was quite a bit of time to "sort things out", be sure about the decision, look into any ohter issues. And even then I wish I had learned more about GFR, which is how well your kidney is functioning pre donation. Its inportant that it's above 80 so that you have strong odds of a lifetime of kidney function post transplant. As every doctor and center determines an individual standard (no best practices in the US!, but in the UK and Canada its 80) you need to look into this yourself. Good luck on helping your friend and in finding some support. Most families in time come around. best wishes, Rob Halverson BTW, just to give you some company, I had a brother who phoned me up just prior(after a few drinks no doubt) to tell me I was "throwing my life away"- ha!
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Hi!
You are so not alone on this. In fact, I'll gander a guess and say that you're probably having a similar experience as many of us have had. You dumped in the right place! :)
I really wanted to tell the whole wide world that I was going to donate a kidney- not to hear how GREAT that is, but just to spread awareness. What if one other person heard it and thought "Hey, I can do that too!" , ya know? But I didn't, because as I quickly found out, most people are convinced that we're signing our health and life away, and they just do not get it. It seems so far out of the realm of what's possible for them to do that they can't see how we could want to do such a thing.
It's frustrating, especially when family doesn't do good supporting.
I'm so sorry you had the reaction.
I'm not defending the lack of support- having been there, I know the hurt and frustration and how lonely it can feel sometimes, but I tried to remember that it was coming out of a place of love...and fear from those who adore me. Often times education helps...the more they learn (if they want to), the better they feel about it.
My mom never DIDN'T support me (other than the "Oh, Nic, no. You don't have to do that. Don't do it." in the beginning). Then she started researching stories and she learned more and it made her feel better. I hope this will be the case at least for some of the people closest to you. Do you have help set up for after surgery??
Take care! Thank you for your beautiful heart!
Nicki
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Yeah, no, I know it's all out of love. I know they're just worried about me. I'm just suprised at how few people support me.
People like us should be studied or something. Altruistic people are few and far in between.
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Leah.faith
I find myself envious of you and wishing I could donate all over again. It was such a rewarding and life-changing experience for both I and my recipient. I can totally identify with your experience with family as I really encountered resistance from family when I initially told them. Some still don't know, about 10 months after donating, my recipient had a massive infection and had to have my kidney removed and is back on the transplant list. Main reason I don't tell them is, I believe they will think, if not outright say, "you did it for nothing then?" Leah, for what it's worth, YOU need to be at peace with your decision yourself and your family hopefully will become more supportive as time moves forward. I'm sorry you have to deal with the lack of support. Just know that they are only worried about the unknown and about the potential adverse effects on you.
You are so courageous and selfless to want to give such a special gift-of-life to someone so in need. Take a deep breath, embrace your decision as-well-as the experience and know that although the surgery and donation is not without risk, for you and your recipient, you have made an informed decision and statistically speaking, you should fare just fine. Let us also be your supportive family as I guarantee, there are many people on this forum who have experienced many of the same experiences you've been through.
I only shared my decision to donate with my parents, my brothers and their families, my wife and adult children. Not only did I feel minimal support and understanding, but I felt as though many of them thought I had made an impulsive and uneducated decision to donate, especially considering I was donating to someone I had not met until the day of surgery. I didn't feel the need thought to justify my decision to anyone other than my wife and myself. Ultimately, the only person accompanying me to the hospital was my wife. One of my children visited on the day I was released from the hospital.
I hope you are able to come to terms with your family's perspective relative to your choice to donate and I pray and wish for the best of outcomes and health for you my friend. Please keep in touch with us.
Scott 8)
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Dear leah.faith,
Best wishes! Sorry to hear you're being so challenged by those nearest and dearest to you. Also, you're not alone in feeling frustrated by the lack of a buffer that others get from claiming divine inspiration. Do you know about http://www.the-brights.net/?
I hope your family comes around, as mine did, but sooner than the day of surgery, when mine finally did. Please feel welcome to private message me. Do take care.
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Thank you all! and thank you Scott! I need to hear that once and a while. I know I shouldn't need, like, a high five or anything from what I'm doing, but on day's like yesterday I wish I had just had someone there to give me a hug or something.
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Dear Leah,
If I might try to suggest a possible bright side to a very unpleasant situation: if everyone in your family jumped right in to give you total support, telling you that they consider you a hero and are SOOOO pround of you, etc. you would then have a hugh problem if you decided NOT to donate. You always have the option to back out, right up to the anesthesia. Getting zero support and lots of hassle now might actually be helpful in making sure that this is YOUR decision for YOUR reasons.
And it seems to be true, as others have noted here, that often a non-supportive family finally comes around and embraces the idea once the reality sets in and the date approaches. Hope that happens in your case as well.
best wishes,
Fr. Pat
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Hi Leah,
I donated a little over a month ago to my friend. I'm 60 and not as full of youth and health as you, and I can tell you that after 6 weeks, I am back to normal except for a little tiredness. Perfectly healthy! No restrictions (not even alcohol!) except watching my salt intake, taking tylenol instead of aspirin and ibuprofen and oh, I'm not allowed to JOUST anymore (that cracked me up! like who jousts??)
My friend, on the other hand, has a new life. Her creatinine, once at 7.5, is down to 1.8 and going down. She can eat almost anything, has loads of energy, isn't hooked up to a machine 10 hours a day and best of all to her, the fog in her brain from all the toxins is lifting and she can think again. And she's 63, imagine what it will do for your young friend!
All I'm sayin is, keep your eyes on the prize. You feel like this is the right thing to do and that is ALL that matters. It may seem like a big deal to your family right now. They will change their minds when they see how you bounce back after 6 weeks, and what an improvement happens in your friend's life. And it really is NOT a big deal to give a kidney, when you reason that you really don't need 2 and can do so much with one of them.
Shelley
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WOW!!! Best rant ever!! I absolutely loved it. By the way, high five, congrats, and a big hug for being surviving the bad reaction to the test!
You have such a wonderful faith in yourself. Keep it up, hang tough when needed, and don't take crap off of anybody.
Seriously, "slap the stupid out of her" - I love that line, I howled when I read it, you are my hero!
Some days are like that in this business. (sorry can't get the word "being" out of my first paragraph)
Thanks for brightening my day:)
Janet,
Wife of a kidney donor,
Mom of 2 recipients,
Donor
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Leah,
Consider yourself hugged!!! ;)
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Hi Leah,
I am so sorry you are going through this with your family. As others have stated, and as you already know, they are acting like this out of love and concern for you. (Not that it still makes it any easier for you to deal with on your end.)
I thought I would share my story with you. I donated to my Husband, and our familes were very supportive. However, my Mom was very concerned for me and my well being. (as a Mother myself, I did and still do understand this). She did state to me at one point, that she was concerned about how donating would affect me, yet she also loves my Husband as a Son and didn't want to see anything bad happen to him, and did want to see him get a kidney and be healthy again. I tried to share as much information with my Mom as I could to reassure her that I would be OK. She came to the hospital the day of surgery with several other family members and was supportive, but again, I knew as a Mother she was very concerned.
After the surgery, and once we were home, (we live about 2 and a half hours away from the transplant center) my husband initially had to go to our local doctor several times a week for blood tests to monitor how his new kidney was doing. Since we had both just had surgery, neither of us could drive. My Mom offered to take my Husband. Well, she struck up conversations with people in the waiting room, telling them that she was there with her son-in-law because her daughter had just donated a kidney to him. She also would tell me about people she ran into at the grocery store, mall, etc. and how she told them of the donation. In other words, once she saw that the surgery went fine, and my Husband and I were both doing great, that was such a relief for her and she then began expressing how proud she was by telling everyone she saw. I think this is great, as she is now at ease about the donation. Also her telling others is a great way to educate others on living donation.
My point is, it is possibe that once your family realizes you are healthy and OK after donation, and they see how much you have helped improve your friends life, they too may have a whole different outlook and opinion on your donation. Fear of the unknown and lack of education on the subject can make people be quite closed minded sometimes. I wish you the best of luck, and please post here as much as you need to. You will find tremendous support on this board.
Best Wishes!
Linda
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Words of wisdom from an anonymous poet:
"As you journey on through life, friend,
Whatever be your goal,
Keep your eye upon the doughnut,
And not upon the hole."
Fr. Pat
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Have you spoke with a patient advocate, they are on your side not the surgery side. They are social workers and may have suggestions on how to talk or handle discussions with family and friends when they come up. It must be hard to have so much negative around you. Just don't mention it when with them any longer. Just come here, we are very good listeners, haha.
Have you been assigned a buddy yet? They are someone that has already donated in your area. It will be someone you can call and talk to if you need some common interest support. Mine was a lady that had donated to her niece as well 5 years previous.
It sounds like you have investigated this. Just keep in mind, it is a life changing event, as in forever. You will need to be even more aware of your health and nutritional requirements and limitations, everyday.
It truly is a gift of life you are offering, just make sure you are not cutting into your own life at this time unless truly committed to the changes.
Best wishes, Jance
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Hi Leah. My family and wife and friends were against me donating too. My wife threatend to leave me if i did it. She said "If you love me you will not do it". I did not change my mind. When I had a date set for the surgery. I told her the date. She said she did not want to hear anything about it because she was not going to support me. I said OK. The day I went to the hospital. She came with me and stayed the night 3 nights with me(I had a private room with 2 beds). My wife is a bully and she got over it. Everyone got over it in the end. I felt that any problems I may experiance with my family and wife are small compared to someone who needs a kidney.
Now I am almost 7 weeks post op. My gfr is 87 and creatine is 1.1 with one kidney.
Sorry you are having these problems. Its too bad more people are not willing to give of themselves at their own expense. It is beautifull to be able to do that. A shift has occurred in my personality after donating, for the better.
Rick
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Sorry to hear you are going through this. That makes the whole process tough when your family doesn't support you. Most of my family was onboard, except my wife. She kept saying, "would your friend do this for you?" or ""You know he won't take care of himself after the surgery." Both good points because I'm not sure that my friend would do this because he is kindof a weak person and he did in fact put weight back on after the surgery. To me, that doesn't matter. I was put in a position to help and I did. It's like when you give a bum on the street a dollar. You did your part to help, it's on him to actually use it for food instead of a beer. If you are in a position to help and you want to, good for you.
Good luck. Hopefully your family will learn to support your decision.
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Wow. I love you all already!! Thakn you all so much for your support!!! I can't believe how many people had resistance from family members. Like, it was so natural and right for me to say "Yeah, I'll donate my kidney".
Thank you for the hug scott and I'm sorry that the boy you donated too couldn't keep his gift. Thank you for the words of wisdom Fr. Pat, and for everything else, you're a good person. I'm glad I could make you smile TJHurly :) . I will talk to my patient advocate I think and see if they can set an up an appointment to talk with my mom, thanks for that advice Jance. Shelly, I'm so glad you and you're friend are doing so well, I love hearing that most people come out of this doing just fine. I think you're amazing!. I really feel like I'm going to be ok in the end. And Pilotjjc3, thats crazy and Im in the same position. I know for a fact she wouldn't donate to me if I needed it, and the reason she's in this position is becuase she didn't take care of herself (which, who does when they're 18). My family keeps saying "she wouldn't do it for you " Which I know, but thats not why I"m doing it and it's so hard for them to see.
If I missed anyone, I'm sorry. Thank you all, you're words mean soo much to me. I know I'm going to be on this site alot!
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While your family (and even yourself) seem convinced that "she wouldn't do this for you", IMO folks do change, esp. folks exposed to kindness. So you never know, she might. For example I helped a very angry guy get back on his feet, get on dialysis and then he got a transplant. Folks would have bet a million to one that he would never make a contribution to anyone (he tended to drink and swear at folks a lot), but today he does, all the time. So my take is you really cann't say someone is fixed or stuck, or at best you might say they are this way, right now. IMO, Rob
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While I can't say that my family didn't support me (they always did from the beginning), they were unsure about the whole process and were concerned about me. But they could see that I had done my research and was determined to do this if I was okay'd for surgery. My transplant center was far from home so when I met with the docs I took a tape recorder. Then I played it for my mom and sister. I think that gave them a little comfort. But the biggest change to me, and it made me cry, was after surgery. My mom and sister were there and got to meet my recipient and his wife. They got to see how nice these people were (my recipient was a stranger before this whole process) and how much their lives would change because of my gift. My recipient's wife came to visit me the day after surgery and broke down; she was so thankful and her husband's levels were already going back down to normal. It was amazing to see how fast he responded to the transplant and how much better he felt so quickly. After all was said and done, my mom said to me, "at first I wondered why you were doing what you were doing, then when you told me you wanted to help someone I understood. Now that I've met them and seen what this has done for them I think I could do it too!" I couldn't believe she went from concern to actually thinking that she could be a donor too! So it is very possible that your family will end up supporting you in the end. I pray they do! This is a hard road to go down without support-I lost a couple friends because of this and it really hurt me. I don't know what I would have done without the support of other friends and my family. Definitely talk to your social worker about it. And you can always come to this message board-as you have already seen, there are many people here ready to walk the path with you, give you advice, and encouragement.
You are doing a wonderful thing! It takes a lot to put your life on the line for someone else-I know that most of the time donors end up just fine and don't even notice a difference, but there is always a risk. However, like I would tell people when they expressed concern-nothing in life is without risks. Leaving your house in the morning carries a certain risk. So as long as you have researched, asked lots of questions, and feel good about this you can do it knowing that you measured the risks and made an informed decision. Good luck with everything! I hope it goes swimmingly and your family gets on board soon.
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Leah, when I was being interviewed by the social worker she told me that the donor's mother is ALWAYS against the procedure. My mom kept telling me that Joe wasn't even a member of the family. But he'd been married to my cousin for 20 years! She was supportive by the time it happened. My sister did tell her that she should have offered to go with me and my husband (we're in California and the procedure was in Chicago), and my mom asked if I wanted her to go. I said no, I wasn't anticipating needing any more help than I already had.
BTW, your rant was as good as any stand-up routine I've ever heard. I laughed my heinie off. Ever thought of going pro? You could write for Saturday Night Live!
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Dear Audrey,
I hope you'll get in touch with the person who told you this was commonplace and recommend they publish at least a case report, if not do a survey or more formal study. This would be a very valuable addition to the limited published work on what donor candidates face, especially the more trying elements that tend to be last straws and cause candidates to stop progressing further on their path to donation. My mother's objections didn't stop me, and likely would have been a significant problem going forward if she hadn't had a complete change of heart while sharing the waiting room with my recipient's family during our surgeries.
Thanks for sharing that. Details and even an approximate sense of numbers on how many of us face this hurdle would be very helpful.
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My husband and I always said that if a friend needed a kidney we would donate. Because of this my husband was always very supportive. I donated five weeks ago today to a friend. As my family began to find out about my intentions (my Grandma, my aunts and my Dad) they made it very clear that they thought it was a bad idea. My 84 year old grandma was so against it that I decided not to talk to her about it anymore.
By the end of July the surgery date was set and I still hadn't told my extended family that I was going through with it. My cousin and sister were great at keeping it a secret. The middle of August arrived and we started planning a fundraiser for my friend and I wrote a letter to be posted on a Facebook page that we called "Billy the Kidney". The recipient also wrote a letter. These letters described our experiences. Most importantly I wrote WHY I was doing this. By the end August we had over 700 people following our page and my friends and family were on board. By the surgery date, September 6, 2011, we had raised almost $50,000 and thrown one hell of a party!
It is amazing how people have told me that they were so worried about me that they couldn't talk to me about it before hand. They waited for FB updates the day of the surgery and they cried when they heard that we were both safe and the surgery was a success. Now I find that they all brag to friends about what I did, even my Grandma. Seeing that I am pretty much 100% now, many are thinking that this may be something that they too can do. People come around eventually and you may end up teaching them an important life lesson. Truly wonderful things are worth the risk. I would do it all over again if given the chance. My husband is even considering being on non-directed donor.
Keep your head up and stay funny! Oh, and if you want to read Billy the Kidney, just let me know.
PS I almost forgot... I gave up the pain pills at two weeks and I have had several cocktails since then. ;D
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Audrey and Clark,
I had wished my mother would have expressed concern for me about giving up a kidney. Maybe mothers whose children are donating to non relatives feel that way. Mothers whose children are donating to their other child (sibling donations) may not feel that way. I had always wanted my parents, or at least my mother, to express some concern and apprehension about me donating. But since my brother was sick and all they heard from the doctors was how he needed a live donation and one with a good match, they couldn't even go down that road. My mother even expressed to me that she was glad it was me who matched and not my sister. I think she saw it as a compliment, that I was the "giving" one, always the one who never complained and helped out even as a young child. I did not take it that way and thought it was a little hurtful. All I really did want to hear from my family was a little worry and concern about having an elective procedure, my future health and how it may effect my husband and family. I have met parents who were not in favor of having both their children undergo surgery and looked for another donor. In one case, the uncle donated to his nephew for that reason. Siblings often inherit similar genes from parents and many of the risk factors appear in families.
So maybe if there are some parents who are worried about their donor children, think of it as an act of love and concern. Balance I guess is the key between the expressing their concern and not wanting you to go through with it and then offering support even when you don't follow their opinion. But does make for an interesting study.
Sherri
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Sherri,
Thank you for a different perspective.
Tori