Hi everyone! My name is Bri and I received a kidney from my younger sister on November 26, 2008. I'm a 29 y/o and live in Milwaukee. My kidney is doing well, but I'm really struggling with the emotional aspects of dealing with my "new normal" and feeling "different" from all of my friends as they start families and move onto different stages of their lives that my husband and I will not be able to do. I feel as though I should have this wonderful new lease on life and a great attitude, but I'm struggling a lot and can't seem to find any support groups in or near Milwaukee. I found this site and am hoping that connecting to others who share similar experiences to me can help get me through this difficult time and learn to appreciate and use the gift that was given to me. Anyone going through or have gone through similar experiences? It'd be really great to connect to anyone around my age as well because I feel so different compared to all my friends and others my age, though support from anyone would be so great. I'm really hopeful that this site will be really helpful to me. It'd be great to hear others' stories!
Have you been told that you cannot have children? Many transplant recipients have been able to successfully bear children post-transplant. I am 32 and had a kidney/pancreas transplant last year, and I hope to get pregnant sometime next year, with my doctor's careful monitoring, of course. If that is not possible for you, have you thought about adoption? Don't rule children out as a possibility for you and your husband! I have struggled with the same emotions that you are having as many of my friends and relatives close to my age are starting their families, but I don't look at the transplant as a roadblock but rather as a bump in the road or even a whole new road towards fulfilling my dreams. I know that it's easy to get down about it, but as someone on this site said, "We're too blessed to be stressed!" Please let me know if I can help in any way.
Hey, Bri: I had a kidney transplant a few months ago, Sept 1, 2009, I know you have had your longer, but my whole life has been out of kilter with my peers and bros/sisters - so I know a little bit about how That part feels. I had polycystic kidneys and chose not to have biological children as a result. My husband and I adopted a 6yr old 4 yrs ago. Are you dealing with childbearing issues? I'm here for you - I know there will be others out here to support you also. I'm still not working so I still have time to be online quite a bit. chat back if you'd like. I'm happy to be an ear for ya'. Warmly, Kats
I am your age (29) and had a multivisceral transplant more than four years ago. I am also struggling with issues that are socially or career related as I am still trying to gain weight (as I am underweight) and to have enough energy and stamina to go out more often and do more things. I often feel that by now I should have a definite job and my own place to live, but I am on disability and live at home with my parents. Sometimes thoughts of feeling stuck or wondering about my worth do strike me, but then I begin to think that without my transplant I would not even still be here to enjoy what I do have, and each new moment I get to spend with my family have become all the more precious realizing how I might not have been able to have them. I try to take things day by day (which I know can be hard to do as I have a tendency to worry) and try to look for the beauty in each matter that comes whether small or large. Reaching out to support groups like this one has also proved very helpful. I know I may not ever be the same as I used to be, but I am hoping that this new me will just open up new doors by offering me a new perspective on life. Just know that you can always find a shoulder on which to lean on here. You will be in my thoughts and prayers. Many hugs.
Did you check all the hospitals in the area? Most have some sort of support groups. It may not be just for transplant people, but all people with some kind of chronic illness. I had a liver transplant in May of 2008. I had many complications- you can read my home page if you want. I was told that I wasn't eligible for disability. The emotions get to you and life is different. It takes time to adjust and understand. Give yourself permission to cry, shout, and whatever. Just don't let it stay for too long. I have family in MKE. We get out there at least 2x a year. Are you going to the transplant games? They are in Madison. Feel free to vent here- it'll help.
Bri, I know how you feel! I am 26months post liver tx and I still feel different from my friends and "normal" people in general- they can't understand what I went thru and what a miracle it is! I was not even interested in dating for the first 20months then a girl from my past asked me out, it was magical, I felt like a kid again but my meds and regiment with them scared her off! I had forgotten what normal even felt like! it was wonderful for a few months- now I know there is life after tx- next time I won't tell anyone I'm a little special! I'd like to talk to you more about the emotional aspect, I tend to be up and down still- trying to understand. it helps to share! write me anytime! ok?
Mark, Had that happen a few times, if they love you they will get over it, if they don't then they weren't right anyway. I think it is better to get it out in the open early on, then if they can take it you know they might be the right one. Besides, getting a new liver doesn't mean you won't live very long or can't have kids, or can't have fun, it just means you have to be a bit more careful. Also the drugs can make you go up and down emotionally depending on what you are on.
thanx for the support, I am very proud and feel blessed to be alive- others only see the scar and the medicine regiment! it sometimes scares me! BTW I have 4 sons and 2 grandaughters and I try to always have fun! I had a crossing over before tx- it changed how I feel about life! but its the meds that mess up my moods still I am younger than I ever was!
Bri you shouldn't feel different from your friends. You are still the same person that you were before the transplant, you just have a new kidney (yes it did save your life and makes you different but the whole reason for transplants is to save lives and give people a chance to do the things they wouldn't have had a chance to do). You shouldn't let it stop you from doing anything. I had a similar attitude the first few years then I realized that all it did was hold me back. Now it has been almost 12 years since my liver transplant and I have a great family, two wonderful kids (3 and 4 years old) and a great life. I can never thank my donors (I had two in a row a month apart-first liver failed) enough for giving me a chance, what I can do is live life to its fullest and enjoy every moment that I can. Please don't let a transplant change things, kidney transplants can last 20-30 years.
The only reason a transplant would stop you from having kids would be if the meds you are on can cause problems with pregnancy/babies. If that is the case, talk to your doctors, they might be willing to shift you to different ones.
I know it is very difficult but you can lead a normal life after transplant. We are all here to help you deal with your emotions. I had my transplant (kidney) on 11/5/08 so we are close to the same time out of transplant. Please check with your doctors about having children, if you can have kids there are other options. Please consider it as you have a big heart and can help a child out by adoption. God has a plan for all of us......take what he gives you and please keep your spirits high. It does help get through this crazy thing we call like.
Hey Bri, I know what you mean, although I'm not married, I had my transplant on June 15th, 2009 from my cousin Erik who god bless his soul, most surgeons would not even attempt to do the surgery because of the way his kidneys were placed. LUCKILY, his surgeon has done it 3 times before and was postive he can pull it off. Of course may cousin thought about it, but once he asked the doctors how much more time I can live on dialysis and they told him theres not really a set time, my body can just shut down from it whenever, he pretty much said lets do it tonight lol but you know they had to set a date and everything.,
My birthday is June16, I turned 22 the day after my srugery so my 22nd birthday was a little bit painful lol but I was just happy to be alive and EAT again, ohhhhhh man let me tell u!! i use to LOVE food but when i had to do the strict diet, I WAS SUFFERING!! lol once they gave me the ok to eat, thats exactly what i did (but now i have to lose 20 pounds cuz i put just a little but much since surgery lol). but i was just happy to be alive honestly and thanked god I got to live a little bit longer. IM DYING TO TO MEET PEOPLE IN SIMILAR SITUATIONS THAT I CAN TALK. i mean i have some BAD days in which I sit in bed and just think negative and it fucking sucks to be honest, when i should be happy to be alive, i think about stuff i really shouldnt.. like how i cant go out with my friends and get drunk all night like we use to, or how i cant smoke any weed anymore with my friends, i just cant relate to my friends and dying to meet people i can relate to but its tough. i use to be able to meet girls and just be comfortable but now im a bit shy cuz i know i have a pretty long scar in a visible area and my health issues might scare them away.
honestly my family support me a lot and without them i dunt know what i would be doing now. but im here now on this site hoping i can meet people in similiar situations and just someone that i can relate to. i hope u start appreciating life more and im always here for u if u need to talk, even i need someone to talk to lol.. hope u do better bri
Hi Briana, I'm post heart TX 9 yrs. & I still have those O.S. days. I hate to tell you, but, it's the meds. It WILL get better. If you are or were on the dreaded prednisone, that's your major source of the emotionalism. This is going to sound strange, but, if possible, work out or walk, with friends. My major joy is music, so I put on a set of headphones: my ipod & go, even if it's only on the treadmill. Just close your eyes & "go" wherever you want! Your body is craving endorphins, the high you get when the blood is pumping. It doesn't have to be strenuous. Just as much as you can tolerate! Like funny movies? Laughter also helps. Ctying will make you feel even more depressed. Trust me on this one. After 9 years, I know whereof I speak. Need something simple? Playing cards or other "Happy" games, w/ friends, also works. The point is, you don't want to be by yourself too much. You get into a "Why me?", syndrome, which goes nowhere. All these things sound simplistic, but, they DO work. Even if you hate the idea, a few sessions w/a therapist will help tremendously. A lot of us have done & still do it. It doesn't have to be a Psychiatrist or Psychologist, just someone familiar w/TX recipients. It's worth considering & most insurances will pay all or part. Please, check w/ your doc, for a suggestion. They are all familiar w/ this syndrome. Also, WE are always here for you. All you have to do is ask & someone, sometime will answer. Have you tried the chat room? It's iffy as to whether anyone is "watching" but it's also worth a try. If you FB, you know the drill. Just type & hit the shift key. Good luck, Luv. Tell us how you're doing! Hugs & Blessings, Paula
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JJ is now a member of TransplantCafe.com - The Gift of eLife!
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