I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Brightsky69 on January 08, 2011, 01:54:15 PM
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:banghead; Just a little vent time.
My BF's parents are SOOOOOO negative when it comes to my 2nd kidney transplant. Granted...I have had my issues with this transplant. But overall it's not doing too bad. This past week I had to go into the hospital for 2 days for a biopsy. I don't have the results yet but my doc wasn't too worried. He doesn't think it's a rejection. Might be an antibody problem....nothing catastrophe.
So I told my BF that I wasn't going to let anyone know that I was going in for a biopsy. I didn't want to start any drama. Of course my BF TOLD his parents that I was in the hospital and had a biopsy. SO NOW I know that his parents will be all DRAMA and ask me 10,000 questions like "When are you going back on dialysis?" "Are you gonna lose your kidney?" "So your kidney isn't working?" "Are they gonna take your kidney out now since it's not working?"
"Can you go back on the list?" It's all gonna be NEGATIVE. And I don't want to hear that!!!!! I am POSITIVE when it comes to this kidney and think positive and act positive. I do not need negative comments.
How do I handle this???? Not once have they been positive about my kidney...They have never told me this kidney is gonna last you forever...your going to be just fine...keep the faith it's gonna be ok. I get none of that.
:stressed;
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I would say, "Thanks for asking but I really don't want to discuss it all now. Please keep good thoughts and I will let you know if there are any changes." Say it in the mirror. Practice. LOL.
I get these questions all the time about Jenna. I just laugh and say "For today, everything is great. Thanks."
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Thanks okarol. If I tell them I really don't want to discuss it then that would be 100% proof to them that my kidney is crapping out and I am basically gonna die. Then they would spread the word to everyone they know about how my kidney is crapping out.
I think I am just gonna say everything is great and I feel like a million bucks...THANKS! ;D :flower;
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:clap; Good! I hope you stay that way for a long time!
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if they say, "but you went in for a biopsy, doesn't that mean that you're losing the kidney?" (cuz I've gotten this one, actually) Just say, "no, it's a standard procedure." You wouldn't really be lying. I've lost count of how many of them I've had over the last 20 years.
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OMG!!! SO now my BF's mom posted something on my Facebook page saying she was sorry I was in the hospital and said "I wish I had known, but I understand" Now my friends and half my family are like "WHAT is going on!!!"
This is what I was trying to AVOID. Drama.
So I posted:
Ok...lets calm down. ;o) This is a kidney transplant and not a "cure" stuff happens. There are up's and downs. Let stay positive people. :o)
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I would just say that it's no big deal and biopisies are common post transplant. For now the numbers are good and there's nothing to worry about. If they then say "well why do the biopsy?" I'd say something like that it's a regular procedure done to check that everything's ok - to catch anything before it becomes an issue, but the doctor is very confident there's nothing to be concerned about. If they still push I would then say that I was quite happy to do the biopsy because I'd rather know what's going on with the kidney than not, but for now everything is good.
It sounds very annoying and just not what you need when you need support not negative stuff. My father is one of these negative types also.. he just can't help it. Like post transplant when my kidney finally woke up a bit and dumped half a litre of urine in an hour and alll the docs were mega excited etc.. his comment was "Oh that doesn't mean anything. It doesn't mean the kidney is working" (note, my father is a dentist by training, so has done some anatomy, but really doesn't know what the hell he is talking about when it comes to this stuff - even though he thinks he does). Well one of the docs totally shot him down (and I was totally cheering her on!). I think it's a mindset backed by fear. I mean they don't WANT you to have bad stuff happen, and that is the main fear but they express it the wrong way in terms of the worries they are dealing with rather than being supportive. With my father i just take it with a grain of salt and remind him my numbers are good and *I* am confident. In the end they can think what they like - it's how YOU think and feel that is what matters.
Perhaps you need to sit down with your bf and explain how this stuff makes you feel and ask him to perhapos be a bit more circumspect when he updates his parents on your situation....
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OMG BrightSky this is sooo my life right now too! (minus the transplant... :( ) Don't worry friend things are going to be okay and the kidney will be just fine! You are a survivor and a fighter!!
My BF's family drive me freakin' nuts all the time. They are so nosy and full of drama too. They say they care about me, but they don't get dialysis at all. Aaron told them that he is going to donate a kidney in the donor exchange program and all they do now (behind my back) is tell him horror stories about people that donate kidneys. Aaron's mom said she was going to donate a kidney so Aaron wouldn't have to and her husband told her that if she did that he would divorce her. Notice that no one mention donating to save my life?!?! Seriously what the hell people!!! Now as my living donor gets tested everyday they ask, "So have you heard any news?" I know damn well that it is not because they care about me, but care about Aaron. Of course if I was a mom I would probably feel like that too, but unfortunately I don't have that luxury b/c I only can understand my perspective. I try not to hold it against them, but it does make me not like them, so I just try to limit my contact. Hopefully just like my BF, yours understands that you need to keep his family at a distance when it comes to the kidney stuff. Why do BF's feel the need to divulge that info? I guess they need an outlet too...
xo,
R
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Thanks for all the advice. Rsudock…I totally feel for you. I hope you get your transplant soon and they start to lay off.
I woke up to see my Facebook page that my sister in-law said “We didn’t know you were in the hospital…what’s up with that???” Lordy!!! This is what I was trying to avoid!!!
I told my BF that if his parents ask him how I am doing tell them She is doing find and thanks for asking.
I swear it’s like his parent would LOVE to see me back on dialysis so they would have some crappy news to share with their friends and get sympathy. They never focus on the good stuff like…I am still peeing, my blood pressure is great, no swelling, H&H is looking good.
I am gonna put a “nice” little note on Facebook letting everyone know about transplants and what we all have to go thru once we get a transplant.
I am positive when it comes to this kidney. I am just glad the people at my job are positive when it comes to my transplant. They always have good things to say .
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Did you stop to consider your friends are worried and really care enough to be concerned about your well being.
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You know...I wouldn't mind it all if they would stay away from all the negative comments. I would be happy to let them know what was going on if they would stay positive about it.
Don't be all negative by saying "Are you gonna lose your kidney now?" "when do you go back on dialysis?" "Are you gonna get another transplant?" "can you even get another transplant when this one fails?"
Can I get some positive feedback? I don't like to think about the worst positive thing that can happen. I don't need people bringing me down. I thank goodness that I do have friends that keep me up and positive and encouraged.
I understand how loved one's can get worried but
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don't worry until there is something to worry about.
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OMG! Your BF's parents sound like my mom! People have a hard time understanding why I don't want to talk to my family about my kidney disease, but it's stuff like you're talking about. Negativity, and I always feel like I'm being grilled for information. Talked AT, not talked TO. You BF needs a lesson in keeping his mouth shut. :grouphug;
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Oh yes Deanne. I always say If you don't have anything nice to say then shut it! :rofl;
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Don't you just love Facebook...it has all these nice features, like Unfriend, for those times you don't want someone posting on your page. They can post somewhere else, but then you don't get to see the drama until it is down the line some. Of course, you could always make up your own version of the truth....Had a wonderful time at the hospital visiting friend.
Follow up on your BF's page that you would like to have a little chat with him. :angel;
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Hey -
Got the results of my biopsy back. The doc said doesn't show anything wrong. My creatinine was at 2.0
My antibodies have even dropped. All is well. :laugh:
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I even told my transplant nurse about my BF's parents asking me when did I have to go back on dialysis. And expecting my kidney to fail any day now.
She laughted out loud and said "OMG...that is SO far off base. You are no where near anything close to that."
We got a good laugh out of it. :rofl; :rofl;
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I am not sure what country you come from so this might make much sense. In cricketing parlance, let the ball go through to the wicketkeeper. Keep a a happy face (even if false) and totally ignore negative comments. At this stage you need to muster every bit of positive thought.
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Murf...I completely agree. :2thumbsup;
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Really glad to hear the biopsy didn't show anything abnormal. Glad you are on the mend friend.
xo,
R
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Thanks rsudock.
Doc said they are still gonna keep a close eye on me. Instead of every week for clinic and labs I am gonna try just labs once a week and labs and clinic every other week.
Overall I feel really good ...so I am happy. :thx; :grouphug;
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Next time, don't tell your boyfriend anything :twocents; >:D
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or level with him before you do. "this is between you, me, and the fence post for the time being, got it?"
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or level with him before you do. "this is between you, me, and the fence post for the time being, got it?"
Or the use of duct tape, just say I'm not going to tell you when or where if you tell your parents again the next time. >:D
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What can I say...he's a mommy's boy. :rofl;
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What can I say...he's a mommy's boy. :rofl;
My hope for you is that he can either kick that, or he just stays a BF, soon to be just a friend. His parent are working real hard to be rid of you. Of Course, that is just one opinion, coming from an old fart. I have another suggestion, but won't go there ;) :lol;
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His parents are normally very nice and I am pretty sure they don't mean any harm....they just need something to "talk" about. Normal "chat" for them is who in the neighborhood is dieing from cancer and who is having the triple bypass and who's spouse has passed away in he last month.
It's actually become a joke between my BF ad I. I joked....when my biopsy came back clean "I know your mom is gonna be disappointed and all." :rofl; And he did an quasi impersonation (of his parents) throwing his hands up yelling "WHY!!!!!....." :rofl; as if to say ..why does the kidney have to be doing so darn good???!!!
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I know some of the same type of folks...One wonders if they do it because they have no life of their own. And your BF grew up in that atmosphere, so it is going to be real hard for him to keep something just between the two of you. However, if he can make you laugh, that is a hard trait to find in a person....might be worth keeping around.